Latest CT Scan Results

[windchime]

Let me start by saying this will probably be more of a rant than anything else as I'm furious.

My right lower and middle lobes are collapsed. In addition, the right lower lobe bronch and the bronch intermedius are not seen which is consistent with collapse or encasement.

I've had serious shortness of breath since the procedure (bronch) was done Nov7th. The only imaging the pulm did was an X-ray on 11/14 which showed what appeared to be a large pleural effusion extending to the right hilum. It further said to consider a CT, but he made me wait until it had been 6 months since my last CT. I saw him the end of Nov, in Jan, and Feb. That's it. He listened to my chest and said normal breath sounds. How can that be with 2/3 of my lung not working on the left side? He did send me to have a needle aspiration of the pleural effusion, but when they did the ultrasound there was no fluid. Red flag anyone.

Okay so I'm guessing what happened is that the bronchs didn't stay open without a stent thus causing no air flow to the the lower and middle lobe. From reading i think they can be reinflated, which is good news. The bad news is that it will require some kind of surgery.

This doc is an interventional pulmonologist and is suppose to know what he's doing, but I feel like I fell between some pretty wide cracks. He even told my Rheumy that some of my breathing problems were due to anxiety. Please, yes I was anxious I COULDN'T BREATH.

So what to do. I have an appointment with another pulmonologist at Mayo next week on the 17th. I saw him last week, but for some reason they didn't get my CT images and I didn't have the latest one to give him. He did a new pulm funct tests and a bunch of blood work. So it will be interesting to get his take on this mess too. If that isn't enough it appears that the CTX hasn't done a thing.

Some of the blood results are: PR3 <.2 no scale, sed rate 25, ANCA must not be back yet as I didn't see it online. I don't know what other ones to look for.

Okay I think I'll close the rant for now. But if anyone has any good advice please feel free to chime in.

[Alysia]

Dear Cindy,
I dont understand enough to tell anything about your lungs. it is good that you are going to Mayo for another doc. you need to have one who will give you whatever he can.
what meds are you on ? did you get rtx ?
I wish I can say more. thanks for sharing. we love you and want the best for you :love:
I am sendng to you lots of hugs and prayers, please update us :hug2::hug2::hug2:

[Alysia]

somthing to cheer you:

https://scontent-a-fra.xx.fbcdn.net/hphotos-ash3/t1.0-9/1017473_1483088255236653_3406650561546629418_n.jpg

[keegan55]

so sorry that this is happening to you I just fired one rheumy because I had a crp of 14 and a sed rate of 35 and I was on enbrel this went on for a year before the nodes showed up they do not isten As far as your breathing I hate when they say anxiety they have no clue what its like to not be able to breatheand you appear to be having serious problems and glad you are ranting it helps

[Titus3:2]

Hi Cindy, I am very sorry to hear about your breathing problems.I lost my left lung to WG because docs did not have a clue.I live in Gainesville Florida,and go to Shands.The Mayo Clinic in Jacksonville is great.You are in good hands there.Shortness of breath causes a great deal of anxiety.Good luck.

[chrisTIn@]

So what to do. I have an appointment with another pulmonologist at Mayo next week on the 17th. I saw him last week, but for some reason they didn't get my CT images and I didn't have the latest one to give him. He did a new pulm funct tests and a bunch of blood work. So it will be interesting to get his take on this mess too. If that isn't enough it appears that the CTX hasn't done a thing.

Some of the blood results are: PR3 <.2 no scale, sed rate 25, ANCA must not be back yet as I didn't see it online. I don't know what other ones to look for.

Okay I think I'll close the rant for now. But if anyone has any good advice please feel free to chime in.

I can understand that you needed to rant, and that you are anxious and furious at the same time. Very good to write it all down, because stress is absolutely no good in this situation, but I guess you are aware of that too. Nevertheless you have to get the best treatment you can with this lung-problem.
I think a PR3 lower than 2 is considered negative. At least I had that too, the last time my blood was checked, and so I am ANCA-negative now.
Your appointment at Mayo sounds good, as everyone on this forum says Mayo is a very good clinic/hospital for GPA/Wegeners.
Can you handle to wait another four days? If not maybe you should go to First Aid/Emergency Room in the nearest hospital.
I sure hope everything will be solved soon.
Please keep us posted. Keeping my fingers croossed for you. :hug2:

[Melly]

Oh wow, this sounds like a nightmare. I can't imagine that your breath sounds were normal if you have bronchial stenosis. As for correcting the stenosis, don't stress about it, it's actually really simple! They just put you under local anesthesia and use a balloon dilation catheter (guided with either a bronchoscope or fluoroscopy) to correct the stricture. I've seen a few of them done in our interventional suites; they usually are pretty quick procedures.

But yeah, it's so hard to find doctors that (1) know what they're doing, (2) actually listen to you when you tell them something is wrong and (3) genuinely care about working with you to achieve the best outcome. I think seeing the pulmonologist at Mayo is a good call. I hope they can find some answers for you and get you back on the road to good health. :)

[Debbie C]

Cindy,OMG...get rid of that dr.I hate when I go to the dr. and the FIRST thing they say is you have anxiety. NO S*** !!! They should try living with this disease. And for your lungs to be collasped for soooo long and him to say everything is normal.You should put a pillow over his nose and mouth and ask if what its like not to breath and if he has anxiety !! I think I would report him to the medical board.What would have happened if you didn't have that ct scan done ?? With all the things that go bad after having those broncial things done ( like all the problems Phil has had after every one ) I don't think I would get one done. Why don't you call the Mayo clinic and tell them what is going on and maybe they can get u in sooner, better than waiting 4 days.
Your new cat picture tells the story...scarry !!!!

[windchime]

My breathing is fine so there is no need to rush the appointment.

Debra, you ranted almost as much as I did. :thumbsup: Thanks for all the emotion expended on my behalf. I'm not sure what I'm going to do with him yet. I was going over some notes and he said my lungs were fully inflated on 11/27. I have to get the X-ray report to be sure if they were or not. My breathing has been bad since the bronch. I know I had a partially collapsed lung then (11/14). I can't imagine it reinflated just to deflate again. That doesn't make sense to me.

Melly, I already had a balloon dilation and laser ablation which is why I'm in the situation I'm in. My lungs bleed a lot when they are messed with. I lost 50cc's of blood during the last procedure which the doc said is a lot for the lungs. He couldn't/wouldn't do the stents at that time because of the state my bronchs were in.

ChrisTIn, Thank for your kind words I'll be able to make it until Thursday. My breathing has actually improved although I still have significant SOB when walking and my pulse ox drops.

Keegan, I think he's sooo fired, but I will keep my appt with him at the end of the month because I want to hear his explanation of this mess.

Titus3:2, Hi neighbor. I was very impressed on my first visit last week. They are very organized and try to work with the fact you are not from the area. I got all the tests done and saw two doctors in two days. It was great.

Alysia: Thank you sweetie. I've been on CTX, but it appears to not be doing a damn thing for my lungs so I've taken it upon myself to stop it. It really made me feel bad at 200 mg and I had already decreased it to 100 mg. I'll see what Mayo wants to do.

Thanks everyone for your replies I appreciate your love and support. :love:

[Alysia]

It seems that all these ballon dillation are only causing more troubles, are they ? :thumbdn:
Cindy, you are always the strong and supportive around here and your caring is heart warming. it is ok also to let us embrace you :hug1:
I read in another thread that you have fever. I am worried about you. please consider the options seriously. we love you and can't bear to see you like that :hug1:

[windchime]

Gosh, where to begin. Saw the Mayo Pulmonologist today. He doesn't think I have Wegener's (my lungs are perfectly clear.) He thinks I have another very rare disease called Fibrosing Mediastinitis, in my case probably caused by Histoplasmosis. There is an idiopathic FM also.

FM, in my case, is presenting as a 1.5" x 1.2" calcified mass in the mediastinum more to the right side.It's encroaching on the right bronch and is what has most likely caused the collapse of the middle and lower right lobes. I'm just hoping that it hasn't gotten to the superior vena cava or one of the other heart vessels. *sigh*

Treatment is squirrely and I'll know more after he talks to the thoracic surgeons, however, it could be that I'll end up having the two lobes removed to help me breath better and get off oxygen. At least he says that's what will happen if they are removed.

If the two lobes can't be reinflated it's best to remove them as they can get infected. In fact the fever I've had could be that.

Here are a couple of links if anyone is interested in learning about it. Only a couple of hundred people in the US have this fine disease. How could I get so lucky. From one frying pan to another.

Fibrosing Mediastinitis | Report (http://www.fibrosing-mediastinitis.com/fmreport.html)

http://www.fibrosing-mediastinitis.com/images/Mayo%20series%20Medicine2011%20copy.pdf

[Dirty Don]

My best to you Cindy, hang tough & keep us informed too.

[pberggren1]

I don't know what that first sentence means, but is he saying outright that you never had Wegs? What are this docs credentials? I don't know what this means? Sorry, I'm just scared for you.

[windchime]

They (the pulm doc consulted with the wegs expert doc at the clinic) aren't saying it isn't wegs, but that it hasn't behaved as wegs since it hasn't presented as a typical wegs case through the years.

I'm scared at this point too as it probably means surgery one way or the other.

Thanks for the support.

[pberggren1]

We are all here for you sweetie. Please keep us updated.

[me2]

Thanks for the links Cindy. I had never heard of that condition before. Yes, talk about a puzzeler. I know its not the same but I have had very rare complications of my Central Nervous System from WG-
and I'm still here to complain about it. A day at a time. Like Phil says, keep us posted. I'll be sending you good thoughts.

[windchime]

I feel the warm fuzzies and love so thank you for that. :love: I will keep you all posted.

Me2 I had never heard of it before either, but it does form granulomas. So in some small way it could be related to wegs (distant cousin.) It is thought to be an autoimmune response to the histoplasmosis fungus. I just read something about CNS and wegs. It escapes me now, but I remember the CNS part.

Thanks again for your kind thoughts.

[Alysia]

Dear Cindy,
I don't know if this means a better or worse prognosis :confused1:
I just think that if he changed the dx, there is a need for second opinion, especially if he will suggest a surgery.
are you also at the vasculitis group ? https://www.facebook.com/groups/332547823431093/
I think that Jim have cns, so maybe he can help more.
if there are granulomas, maybe the treatment should be the same anyway ? I am saying it because my gastro doc told me that granulomas of WG and of Crohn looks the same and the treatment also can be the same. maybe it is like that with all granulomas ??? I wish I could tell....
please update us. and just continue to write and vent. not an easy time to go through...
I am sending to you lots of love and hugs and prayers :love::hug1:

[windchime]

From the extensive reading I've done today, I could have wegs and FM. The prognosis for FM is worse than for wegs as they usually can't remove the calcified lymph nodes. They can only stent whatever blood vessel(s) or bronchs the "stuff" is pressing against. From what he said it's grown about an inch in the last 9 years. :crying:

As far as a second opinion there are so few cases that there are also few "specialist" for this disease. I think I read there is one at Mayo in Mn. There are only 200-300 cases in the US. When he showed it to me on the CT the light bulb came on and so much made sense. :unsure:

I will see what he has to say next week after talking to the other docs, but something interventional will need to be done. :w00t::w00t:

[Debbie C]

Cindy ,didn't they do a biopsy of your lungs before ? I read the article but it all looked greek to me,couldn't understand it but I did see where the prognosis is good,so that's a good thing. When are they going to try to inflate your lungs ? I thought they would have put u in the hosp. and got that done ! Sorry to hear the news but for sure let us know what is happening. Take care:hug2:

[mishb]

Cindy ,didn't they do a biopsy of your lungs before ? I read the article but it all looked greek to me,couldn't understand it but I did see where the prognosis is good,so that's a good thing. When are they going to try to inflate your lungs ? I thought they would have put u in the hosp. and got that done ! Sorry to hear the news but for sure let us know what is happening. Take care:hug2:


It also looked Greek to me too. It was telling me to not dig in the dirt and don't have chickens :crying:

I hope things start to look up for you Cindy.
You know that all our thoughts and prayers will be following you on your journey through this.
Best of luck for your next appointment

[windchime]

It also looked Greek to me too. It was telling me to not dig in the dirt and don't have chickens :crying:

I hope things start to look up for you Cindy.
You know that all our thoughts and prayers will be following you on your journey through this.
Best of luck for your next appointment

Unfortunately I also have to give up playing in bat poop. :razz: And that was my favorite past time.

This is the result of getting histoplasmosis as a kid. The lymph encapsulate (in calcium) the fungal spores in the lung and even after they're dead (the spores) the body continues to over react. The vast majority of people that have or get histo never have this reaction. It is reserved for a few select special people like me. It continues to grow and eventually can press on the superior vena cava causing superior vena cava syndrome. It can also press on the other various arteries and veins located in the mediastinum (area between the two lungs.) Last but not least it can press on the main bronchial stems. In my case the right main which caused the two lobes to collapse.

They are unable to remove it because there is a high mortality rate with the procedure. They may be able to debulk it, but I'm not sure. Waiting to hear from the surgeons on that one. If it was an artery or a vein they would stent it, but as of last talk he didn't think a stent would work in the the bronch. That leaves us to removing the two lobes so the upper lobe can begin to take over and have more room to expand. It also helps prevent infection which I guess left to their own devices they will do now.

This is an auto immune disease and has caused various granuloma to appear in my spleen and liver. It's been a rough couple of days wrapping my mind around this new disease that has a worse prognosis. I wish life were simple again. :sad:

[Debbie C]

So that means u can't hang out with Batman any more !!! When are u supposed to hear something ? Have they given you any other drugs ? I hope you feel better soon.

[pberggren1]

But Batman loves to hang out with Cindy....:love:

[windchime]

So that means u can't hang out with Batman any more !!! When are u supposed to hear something ? Have they given you any other drugs ? I hope you feel better soon.

No drugs for this disease. I will hopefully hear something next week. I just sent an email to Dr. James E Loyd at Vanderbilt and asked if he would review my case. He is as close to an expert and I could find. Since this disease is so rare I'm hoping he will say yes.

Thank you Batman. I would miss you if I had to give you up........:ohmy:

[Alysia]

Dear Cindy, I am sorry for all the though time you are going through :crying:
I don't understand all this :w00t:
all I know is that we love you :love: and want you to feel good :hug1:
WG or not, you are part of the family, and def a superhero :thumbup:

[windchime]

Thank you all so much. You have been such a great emotional support for me the past five months. :smile1: The thought of giving "you" up breaks my heart. :sad: There are no support groups or active forums for this disease so I will continue to lurk here if you don't mind and Andrew doesn't kick me off. I love you all. :love:

[me2]

Your changing medical diagnosis doesn't change your diagnosis as being part of our happy little family. You will stay here with us for as long as you want.
I know you have some difficult things to get worked on but I'm confident in modern medicine and that they will help you get back a simpler life again. Its happened to me. It will happen for you.

[mishb]

Cindy you are a part of this family - you can't leave us, you are not allowed, so it doesn't matter :mellow:

You can be an honorary weggie like Booknut - but no lurking okay, you have to participate ......who else is going to give us muscle advice :hug3:

[Alysia]

Thank you all so much. You have been such a great emotional support for me the past five months. :smile1: The thought of giving "you" up breaks my heart. :sad: There are no support groups or active forums for this disease so I will continue to lurk here if you don't mind and Andrew doesn't kick me off. I love you all. :love:

NO WAY, you are not going anywhere (unless you wish for) and no one is going to kick you off !
we need you around, besides, we are the best forum on the globe and you are precious member of our family. we can't make it without you. it is like you have always been here and not only 5 months or so.
lots of hugs and prayers to you :hug3:

[annekat]

Cindy, I'm sorry to hear about this, a whole new thing to try to figure out and deal with. I noticed in the article you sent that Dr. Ulrich Specks, who has been mentioned on here many times as a Wegs expert in pulmonology, I think, was one of the authors, and he is at Mayo in MN. I wonder if he'd be someone you could consult with, too, as he appears to be something of an expert in both diseases.

Good luck, and please continue to stay on this forum, no matter what... lurking is OK but you must drop in and say hello often as well.

[pberggren1]

You can never leave us Cindy. Why would you think you are not welcome here?

[windchime]

I am so blessed. :love:

[drz]

From the extensive reading I've done today, I could have wegs and FM. The prognosis for FM is worse than for wegs as they usually can't remove the calcified lymph nodes. They can only stent whatever blood vessel(s) or bronchs the "stuff" is pressing against. From what he said it's grown about an inch in the last 9 years. :crying:

As far as a second opinion there are so few cases that there are also few "specialist" for this disease. I think I read there is one at Mayo in Mn. There are only 200-300 cases in the US. When he showed it to me on the CT the light bulb came on and so much made sense. :unsure:

I will see what he has to say next week after talking to the other docs, but something interventional will need to be done. :w00t::w00t:

Your Mayo doctor in Florida could consult with the Mayo expert in MN and get a second opinion for you easily since they probably would have access to all your records. Mayo loves rare and complex cases so they might be very interested in you.

[annekat]

Your Mayo doctor in Florida could consult with the Mayo expert in MN and get a second opinion for you easily since they probably would have access to all your records. Mayo loves rare and complex cases so they might be very interested in you. As I said before, the Mayo expert in MN could be Dr. Specks, who was one of the authors of one of the articles you sent links to, Cindy. Dr. Specks has been mentioned on here many times as a recognized WG expert with emphasis on pulmonary stuff, and he is at Mayo in MN according to the article, unless that was old info, in which case I can be corrected. He obviously has expertise in both diseases. I agree with you, drz, and think this would be worth checking into.

[windchime]

Thanks for the recommendations. I have sent an email to my dr in Jax and asked if he would consult with Dr. Specks. Also Dr. Loyd at Vanderbilt University agreed to look at my CT scans and give me an informal opinion. And last but not least a friend of mine has a cousin that is an Interventional Radiologist at University of Wisconsin and she and her husband (he's one too) have agreed to look at the CT's. So I've managed to get a few balls in the air and I'm waiting. I hate waiting, but here I am. Here is another article written by Dr. Loyd that is much easier to understand, written in layperson terms, if anyone is interested.

Fibrosing Mediastinitis in Detail - Rare Diseases - Ben's Friends Online Support Group (http://rarediseases.bensfriends.org/group/fibrosing-mediastinitis/page/fibrosing-mediastinitis-in-detail)

[annekat]

Good job covering all the bases, Cindy. This article, too, has a lot of "medicalese" which is a little hard for me to wade through, but I have saved it for when I can concentrate better. It looks like they did a very thorough job describing it. What a great site it seems to be on, a site for rare diseases. I'll be thinking of you and sending out prayers and best wishes.

[Debbie C]

Cindy,I haven't "chimed !" in here in awhile but have been keeping tabs on what is going on with you and I can't believe all this. I am so sorry you have this other disease,so does this mean you don't have wg at all,that its been this other thing all along. I am glad to hear you have some connections that can help you out. I hope you get the answers and help you need soon. AND don't even think about leaving this forum for another,I may not know exactly where you live but I can find you !!! Take care and keep us updated:hug2:

[windchime]

Cindy,I haven't "chimed !" in here in awhile but have been keeping tabs on what is going on with you and I can't believe all this. I am so sorry you have this other disease,so does this mean you don't have wg at all,that its been this other thing all along. I am glad to hear you have some connections that can help you out. I hope you get the answers and help you need soon. AND don't even think about leaving this forum for another,I may not know exactly where you live but I can find you !!! Take care and keep us updated:hug2:

They haven't said conclusively that I don't have wegs. Even with this other diagnosis I still have had lung nodules come and go during the last 40 years and that isn't from the FM. I will pursue that eventually. Right now all my focus is on the other disease. Thanks for keeping tabs on me Debra and I have no doubt you'd find me. :flapper:

Anne: the web site for rare diseases is good. They have forums, but they aren't active for the most part. At least the one for FM isn't. I wonder what it would take to get wegs added? I'll have to work on that.

[annekat]

Anne: the web site for rare diseases is good. They have forums, but they aren't active for the most part. At least the one for FM isn't. I wonder what it would take to get wegs added? I'll have to work on that. It does seem strange that WG or other vasculitis aren't addressed on that site, unless I missed them. Maybe not rare enough? Or it just takes patient involvement to get them on, as you imply. I did see trigeminal neuralgia (tic douloureux) on there, which I had at one time. It hasn't bothered me in a long time, and I don't think of it as a disease in the way that WG or your FM are, but for those really suffering from it, this would be a good thing, and the site explains it pretty well with a good diagram of the offending nerve in the head. I know someone on here recently mentioned that they have TN.

[drz]

As I said before, the Mayo expert in MN could be Dr. Specks, who was one of the authors of one of the articles you sent links to, Cindy. Dr. Specks has been mentioned on here many times as a recognized WG expert with emphasis on pulmonary stuff, and he is at Mayo in MN according to the article, unless that was old info, in which case I can be corrected. He obviously has expertise in both diseases. I agree with you, drz, and think this would be worth checking into.

I saw Specks there two months ago and know some other users here have also seen him for Wegs. He consulted on my case before I began seeing him as part of the GPA longitudinal study. Phil has emailed him in the past and he is one of several experts at Mayo MN listed as consultants on VF web site.

[windchime]

I guess it's time for an update. I was trying to wait to get some conclusive information, but that appears to a ways away. Dr. Loyd agreed that I probably have fibrosing mediastinitis. That was his informal opinion.

My friend also sent the CT's to her cousin and her husband who are both radiologist. They were outraged by the damaged done to my bronchs from the bronchoscopy and laser "work" the pulmonologist did. He basically caused all my current problems of collapsed lung, shortness of breath and need for oxygen. It was a relief, in a way, to confirm what my thoughts were on the matter.

My pulmonologist has been less than willing to accept responsibility for his actions. So far he sent me for a pulmonary hypertension work up which included a high risk right and left heart cath. When that came back neg for PH he then said I was de-conditioned and he sent me to pulmonary rehab. Of course I didn't mind that and it has helped a little. He also said that I had excessive dynamic airway collapse, which means that when you exhale your bronchs collapse. So as you can see it's everything other than what he did.

Today my Mayo Dr called me and said that he had talked to my pulmonologist who said he had no ideas on what to do. Seriously?!? He also knows of NO cardio thoracic surgeons that would be interested in my case. Again, double seriously?!? I thought I lived in a major metro area but it's beginning to feel like the middle of no where.

Mayo Dr. wants to do a bronch to see what is causing the collapse. Those that know my story know another bronch terrifies me since i have such a horrible reaction to them. He said that the surgeon would "require" one prior to surgery. Apparently they can't get enough from imaging as there could be a mucous plug muking things up down there. He also said his colleagues (probably attendings as he is a fellow), were going to contact the docs in Rochester for their input.

So here is where I'm at. My same friend was/is a nurse and has connections to some good docs in Little Rock, Ar, where she is from. She is sending a copy of the CT's to her (the doc) for some input. So a trip to the midwest may be in my future. Also there is a surgeon that is experienced in FM in Denver. I have sent another email to Dr. Loyd asking him if he knows of any others. I hate to continue to bother him and in another life I wouldn't impose, but I guess my own mortality has come to the forefront and I'm not as shy.

Tomorrow I go to see the idiot pulmonologist for a regular appointment. I can hardly wait to see what he has to say. Think he'll dump me.? I'm told he can't, but I can dump him. Now to find a decent pulmonologist in this large metro area. Think I"ll change hospital associations since there is another large hospital in town and see if that helps.

One last thing the radiologist (2nd opinion) said there is a 1-1.5 cm mass on my pancreas in the tail. He couldn't get a good look cause it was a chest CT not an abdominal one. So I'm on a quest to get someone to write an order for further imaging for the pancreas, which may take a front seat in all this depending on the imaging report. I had the Mayo doc look at it while had him on the phone and he thought it was a granuloma. They seem to be in my spleen also. So another thing to deal with.

Staying strong through this flipping mess that has become my life. I keep remembering that if HE brings me to HE will get me through it. Hallelujah!!

[Debbie C]

Cindy, I'm just sitting here not knowing what to say. What is wrong with all these drs. that they will do just anything to show that they are trying to fix you but in the long run ends up causes more damage. I'm sorry you have to have another bronch.At least it sound like the dr. at Mayo is trying to get to the bottom of it. I will keep you in my prayers that they get to the bottom of this and I would give that pulmy H*** tomorrow for what he has done to you. Let us know what happens:hug2:

[annekat]

Cindy, I feel the same as Deb about doctors, there are too many like that among the good ones and how are we supposed to have a clue? I guess this is why they have malpractice insurance!

What a time you are going through. One thing after another. You are doing such a great job of being proactive, looking at alternatives, and getting things sorted out, and keeping a clear and level head. I would be a basket case by now. I've thought of you many times and my prayers will continue to go out your way.

[Alysia]

Dear Cindy,
I am amzed from your strength to endure such a tough time and to do such a wise research :thumbsup:
It breaks my heart to think about what you are going through :crying:
I think that you can def sue this doc :predrage: take an attorney who will do it for you, and take his part out of what he can get.
you are in the hands of God. you are such a good soul and God will save you.
I am sending to you lots of love and prayers.

[Alysia]

I tried to post it for you on facebook but it seems that there are again problems on fb because I don't see it there. so here is something to encourage you. with love from me. I hope that you will soon find the best way to handle things and be back to daily routine.

https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/t1.0-9/1912543_1487239138154898_2808544324560108664_n.jpg

[windchime]

I will say that anger is probably sustaining me right now and a law suit is most likely in my future. Have to wait though as I don't need to scare away prospective doctors right now. :w00t:

Thanks for your support ladies. :biggrin1:

[me2]

Cindy,
I'm sorry for the problems you are having with your health and also with your doctors. A double whammy. You are doing an amazing job of sorting things out and staying on top of them. I really admire how you are handling things.
A small part of what you describe I am having trouble following. Your Mayo doc seems to be throwing up his hands and saying the pulmy guy doesn't have any ideas so 'Oh well , we can't help you'
If I understand this correctly it is totally un-acceptable. If I follow this correctly your Mayo guy should be referring you to someone WHO DOES HAVE SOME IDEAS.

A couple of years ago my doc who I have been seeing for 36 years- initially for WGs , gave me the run around on treatment and referral for very bad acid reflux I was having. I was in tremendous pain and suffering and he was dropping the ball on getting me an appointment with a GI specialist- who , of course, would not schedule to see me without a referral. Catch 22

I got desperate and angry and I contacted the Medical Director of the University of Washington Medical Center where all this was happening- for the first time in 36 years. He actually talked to me on the phone , I explained what was happening to me, he said he would get right back to me. I thought "Oh yeah, the good old boy club will circle the wagons and I'll get more of a run around".

Well, I was pleasantly wrong. I got a call the next day and they said "Can you come in tomorrow to see our GI guy?" "Well, hell yes I can"

I didn't hear any more from the Medical Director but I am still grateful to him and remember his name because he actually looked into my situation , figured out that I was NOT being treated right , and fixed the problem. (I also suspected that a person in his position sniffed 'law suit' , even though I suggested nothing of the sort. I just wanted to be seen)

So, to end my long story. Keep as pro-active as you are and think about talking to the Medical Director at Mayo to maybe sort this out. I'm sure you will know what to do, you are really doing a great job.
You will be in my thoughts and prayers.
Kirk

[windchime]

The local doc is the one that really doesn't want to do anything. I saw him today and he sees no reason to remove my two collapsed lobes. He thinks the shortness of breath continues to be caused by de-conditioning. :rolleyes1:

The Mayo doc on the other hand wants to move a little more aggressively than I'm comfortable with. First he wants to do another bronch. He told me he just wanted to look and see if it was blocked by mucous, but he told my local doc he wanted to try and remove the calcium. My local doc recommended not doing this. He told him they almost lost me on the table due to bleeding from the last bronch. Mayo doc is also pushing for surgery to remove the two lobes. :w00t:

I've decided to wait until I hear what their consultation with Rochester comes back with. If I don't hear soon I will just call or email Rochester myself.

Kirk sorry you had to go through such crap. I'm glad that you had a good resolution though. :thumbsup:

I'm staying as proactive as I can. I'm checking out Johns Hopkins this week and see what kind of program(s) they have. I'm just so restricted by funds right now and I find that frustrating. :unsure:

[Alysia]

you are so amazing Cindy. :hug1::wub:
I like your new signature. true. God is with you.
we are too, with deeply praying.

[pberggren1]

So who are you consulting with in Rochester? Have you gone there in person?

Was your last bronch just a look and see? Or was it a surgery of some sort? Ballooning? Cutting?

I would consult a interventional pulmonary doc with JHU as well....good idea.

So the mayo doc wants to remove the lobes where the calcium is? How will this be done?

[pberggren1]

I would give Specks an e-mail and see what he has to say. I'm sure he would help. A trip to Rochester might be in your future. If you want his e-mail just let me know.

[annekat]

Cindy, it must be so hard when your docs disagree on the best course of action. I hope the advice from Rochester will help clear the air. Continuing to send out good thoughts and prayers as you continue to show your strength of character in dealing with this proactively.

[windchime]

So who are you consulting with in Rochester? Have you gone there in person?

Was your last bronch just a look and see? Or was it a surgery of some sort? Ballooning? Cutting?

I would consult a interventional pulmonary doc with JHU as well....good idea.

So the mayo doc wants to remove the lobes where the calcium is? How will this be done?

I had a biopsy and well as dilation and it was done by an interventional pulmonologist. No they can't touch anything in the mediastinum as it is inoperable. They want to remove the to two lobes that are collapsed.

Since I've already developed a relationship of sorts with Dr. Loyd at Vanderbilt I may make an appt with him instead of trying JH.

I've asked my docs at Mayo to consult with Dr. Specks specifically. I just sent my Mayo doc an email advising NO bronch until I know what Rochester thinks.

Phil if you could PM Dr. Specks email a I would appreciate it.

Thanks for all the continued support from everyone. Your support is what gets me through this very trying time.

[pberggren1]

I know how scary this can be Cindy. We are all here for you.

[KimH]

Sending prayers as you work through this time. You are amazing and strong!

[windchime]

I'm furious. I just got an email from my Mayo Pulm doc. I had asked him to consult with Rochester when I talked to him in person and then I sent him an email asking him to consult with Dr. Specks specifically. Here is what he said,

"The recommendations I gave to you were based on discussion with numerous colleagues in our department, and well as my surgery and rheumatolgy colleagues. Many of these doctors trained in Rochester. There is a clear consensus that she has no findings suggestive of Wegner's granulomatosis or similar vasculitic process. If patient would like a formal evaluation in MCR, we will be happy to arrange for such a visit."

Now Mr. Doctor man, and I use that term very loosely, WHY do I have inflammation in my lungs? WHY do I have granuloma in my lungs and spleen? WHY do I have nodules that come and go in my lungs? WHY won't you figure out what it is that I have instead of spewing BS back to me? :confused1:

Doctors in general are beginning to irritate me. Is this Obama care? I just want to know what else can be done to determine what I have is. No one can seem to tell me that. :angry:

With all that said an email has been personally sent to Dr. Specks. I shouldn't have to do it that way, but they left me no choice. I don't mind the trip to Rochester, but if all he's going to do is review my records, what is the point? I think they need to think outside the box that has become their heads. OR get their head out of their collective a**es. :unsure:

Sorry to rant, but as you can see I'm understandably annoyed. :predrage:

[annekat]

Rant, Cindy, rant! I'm glad you sent a personal email to Dr. Specks, and knowing what a good writer you are, and how good at expressing all the details of your concerns, I'm hoping it will get his attention beyond his just going over your records. Since he has expertise both in WG and this other disease they seem to have dx'ed, I should think it would be an interesting case for him and one he'd like to have some input on. I don't know why you couldn't have both conditions, as many of us on here have more than one rare or AI condition (although I'd rather that wasn't the case, of course) . I hope I'm not being too idealistic in hoping he will take a interest and offer an opinion, and want to see you personally if you can swing the trip. Looking forward to hearing his response.

[pberggren1]

I'm crying for you Cindy :crying: When did you send the e-mail to Specks? I hope he replies to you soon. This Pulmy in Florida must be a real piece of work....GRRRR Maybe Batman has to come down there.

[windchime]

I'm crying for you Cindy :crying: When did you send the e-mail to Specks? I hope he replies to you soon. This Pulmy in Florida must be a real piece of work....GRRRR Maybe Batman has to come down there.

That was the pulmy from Mayo in Jax, not the local doc.

[Alysia]

oh, Cindy, I am furious for you as well :predrage: we have a gross say in Hebrew for such arogant people, we say that their urine went up to their brains....
don't give up, ask him all your questions, challenge him..... and meantime search for another doc and then drop him :angry:
and hang in there, you brave one :love: :hug1:

[Titus3:2]

I am sorry for what you are going through,and I share in your frustration.Most of us do not have the funds to run around the country for a second opinion.Maybe the doc at the Mayo Clinic has tunnel vision.I went to the Mayo Clinic for a WG second opinion years ago,and was very impressed.I took a good friend of mine there in Oct 2013,for a second opinion on her Multiple Sclerosis diagnosis,and after leaving no stone unturned the M.S. expert there ruled it out.I am surprised that a Thoracic surgeon would agree to do a lobectomy on you.I would let the Mayo Clinic Pulmonologist do a bronchoscopy,and see what he finds maybe he will have a change of opinion.Hopefully he and his colleges are correct,and you do not have WG.Again,I am very sorry that you are in this situation.

[windchime]

Titus3:2 I've only heard great things about Mayo and this is another reason that I'm having a hard time wrapping my brain around this reply and you got it exactly as he wrote it. I guess just because they've decided it's not wegs they don't need to consult with a leading expert in wegs.

One of my big frustrations other than the no consult, is they haven't given me an alternative diagnosis other than the FM, which doesn't explain the nodules that come and go. I can't do another bronch. One it's dangerous for me because of the bleeding I do and two it's contraindicated in Fibrosing Mediastinitis because of the bleeding potential. Thanks for your support and input.

Alysia thanks for your love and support sweetie. :love: Back at ya!!

[LisaT]

Cindy, I am amazed at your strength and also your taking the time to communicate with me and lend support and info while you are in the midst of such a difficult time yourself. You will be in my thoughts and prayers. Lately when the anxiety starts to get the better of me, I put on my headphones and listen to a meditation cd that uses a brainwave technology that 'slows down' your brain to delta waves. It works better for me than 'trying' to meditate because it produces an automatic response (something to do with the differential between the sounds in each ear) rather than the meditator having to actually quiet the mind... No idea if you are into this type of thing but sometimes it's the only thing that helps me calm down. If you're interested I can give you the name. I ordered it from amazon on the suggestion of a nurse at the arthritis centre here after my RA diagnosis.

[pberggren1]

I hope that Specks will get back to you and let you know what he things should be done. Either way I would drop this doc in Florida.

[windchime]

No idea if you are into this type of thing but sometimes it's the only thing that helps me calm down. If you're interested I can give you the name. I ordered it from amazon on the suggestion of a nurse at the arthritis centre here after my RA diagnosis.

Yes please share, as I'm getting ready to ask my Primary care for something for anxiety when I see her on Thursday. Never asked for something like that before, but unfortunately the time has come. :crying:

[Debbie C]

we have a gross say in Hebrew for such arogant people, we say that their urine went up to their brains....


Alysia,I love you but hebrews do have some strange sayings !!!!
On another note, Cindy ,I can't believe this is all happening to you. What the h*** are they thinking. Do they know you can't have another bronch and WHY is it you are still walking around with collapsed lungs,and they just want to tke them out and say OH WELL, we were wrong. ( NO on the other hand they would never admit that ) I am surprised out such a well respected hosp have drs. that treat you like that. I would have ask them just what you wrote...all the questions. Good luck with this other dr. in roc..hope he gets back to you soon if not keep on it. My prayers and hugs are with you:hug2:

[windchime]

Debra thanks for your concern. No sense sending him more questions as he didn't answer the first set I sent him. I think he's mad cause I cancelled the bronch. He'll be doubly mad if Dr. Specks contacts them. My new mantra, "Gotta find a good doc, gotta find a good doc, gotta find a good doc." :rolleyes1::rolleyes1:Have to laugh about it sometimes or I'd be a bigger basket case than I already am. I would look like this :w00t::w00t: Double the fun.

[pberggren1]

Cindy, do you realize that you are eating Michelle in your new avatar?

[LisaT]

Yes please share, as I'm getting ready to ask my Primary care for something for anxiety when I see her on Thursday. Never asked for something like that before, but unfortunately the time has come. :crying:

It is the Insight System cd. It looks like this. http://ecx.images-amazon.com/images/I/41aQ%2BVh9bSL._SY300_.jpg
i see that it's pricey $59.99 but they also advertise used copies in good condition. I'm sure there are many similar ones but I like this. I have also found a natural supplement called GABA that helps with anxiety. I'm told that unlike herbs it can't interact with meds because it's a neurotransmitter already present in our brains. I confirmed with my pharmacist that it's ok but if you wanted to try it, you'd obviously want to talk to a trusted pharmacist or dr. To make sure it's ok for you. It could be placebo, but whatever works to get through a crisis! Added bonus, it's chewable! I also wondered whether you'd come across the Facebook FM group... It has 60 members and it's a closed group so I couldn't read anything. For ages I could only find the same two articles, then all of a sudden I hit on something that led me to the FB group, a blog, and a book written by an FM patient. I think I searched Wegener's and mediastinitis or something like that. If you haven't come across these yet and want to look at them I can send links. It's hard to balance between getting as much info as you can but not spiralling down the well of anxiety once you know as much as you can until you find out more about your particular case.... Take care and I hope you get some clearer answers and reassurance soon!

[LisaT]

There's Also a blog written by the same woman who wrote or is writing the book. myfmlife.com. She's 49. She was diagnosed in 1999 and has had two surgeries that helped. I'm still learning so don't know what the similarities and differences would be but her story seems inspiring. Forgive me if you already have all of this but I wanted to post it before sleeping so if you don't already have it you can find it whenever you read this. She's found an amazing surgeon who normally does pediatric (the smaller instruments and techniques required lend themselves to fm.

[windchime]

Cindy, do you realize that you are eating Michelle in your new avatar?

OH NO!!!! :w00t:

Sorry Michelle. :flapper: Lol

[windchime]

Thanks for the info Lisa. I stumbled upon the FM FB page a week or so ago. There is some interesting reading on there. You should do a friend request, they will accept it. There were no questions asked. I'll check out the blog. I've been thinking of blogging just not sure where to start. I'll check out the CD and the GABA. :thumbsup:

[annekat]

I just joined a "closed" Facebook group... it helped that some people on there already knew me, but they will usually accept new members, they are just being careful... so give it a shot. Maybe Cindy will even get a chance to approve your request... that happened to me with one I had just joined.

[windchime]

I just joined a "closed" Facebook group... it helped that some people on there already knew me, but they will usually accept new members, they are just being careful... so give it a shot. Maybe Cindy will even get a chance to approve your request... that happened to me with one I had just joined.

I can also send them an email and ask that someone be approved. :biggrin1:

[Alysia]

My new mantra, "Gotta find a good doc, gotta find a good doc, gotta find a good doc." :rolleyes1::rolleyes1:Have to laugh about it sometimes or I'd be a bigger basket case than I already am. I would look like this :w00t::w00t: Double the fun.

http://assets.amuniversal.com/1d11aab0b16201314c2a005056a9545d?width=450

[Alysia]

one more to make you smile. Cindy .... untill you will find the med for anxiety.... :wink1:


http://newyorkchica.com/wp-content/uploads/2012/05/funny-doctor-cartoons-03-ss.jpg

[LisaT]

I just joined a "closed" Facebook group... it helped that some people on there already knew me, but they will usually accept new members, they are just being careful... so give it a shot. Maybe Cindy will even get a chance to approve your request... that happened to me with one I had just joined.

Thanks! I'm trying to decide whether to friend/join or wait until I know what the docs think my 'friend' in my chest is. I think I now know enough about FM to be prepared for what the next steps would be should they tell me they lean towards that diagnosis. In case they don't, I'm thinking about not reading/pursuing any more in the meantime as I freak myself out and get very anxious. There is not a ton of info out there so if I need to know more eventually, these patients would be the first source I'd turn to. I'm guessing they would be the most useful and supportive source, as with this forum!

I will continue to have you in my thoughts Cindy, and hope to hear encouraging news for you. Hope the FB group is helpful. The blog seemed so.

[mishb]

Cindy, do you realize that you are eating Michelle in your new avatar?


I didn't want to say anything - poor Kermit :crying:

However, I have it under control and by the throat - we will never give up

[Alysia]

I didn't want to say anything - poor Kermit :crying:

However, I have it under control and by the throat - we will never give up

actually you are helping Cindy by doing "live" bronchoscopy .... :wink1:

[windchime]

I didn't want to say anything - poor Kermit :crying:

However, I have it under control and by the throat - we will never give up

I'm sure it's a far distant cousin to Kermit as I would never eat a pet.......:w00t:

[windchime]

actually you are helping Cindy by doing "live" bronchoscopy .... :wink1:

What are friends for if not to help out?????

[windchime]

Received an email back from Dr. Specks. I will paste it here rather than try and paraphrase it.

"I am sorry to hear about your longstanding illness. I have to admit that based on the provided information it is not entirely clear to me what all is going on. Particularly, I am not sure how the diagnosis of Wegener’s from way back in 1972 has any bearing on what is currently going on which seems to be fibrosing mediastinitis.

Unfortunately, 1972 is long before our electronic medical record which started in 1996. So it is difficult, but not impossible to retrieve the old clinical notes and path reports.

For fibrosing mediastinitis we have had recently good experience with rituximab which is to be considered experimental in fibrosing mediastinitis. In patients who had a positive PET scan with fibrosing mediastinitis this has worked very well in several well-documented cases. Whether one can save you the lung resection is something I cannot determine by email.

I certainly would be happy to see you up here in Rochester at your earliest convenience if you feel comfortable and can come up here. If you let me know who your primary Doctor in Mayo Jax is, I’d be happy to confer with him or her.

Please let me know how we can be of service and hopefully help. I have cc’d my appointment assistant, in case you want to work with her on setting up an appointment with me."

I guess my email wasn't clear, but you can only write so much in an email without it becoming a diatribe. :unsure: So the question is, do I give Dr Specks the Mayo/Jax docs name (Dr. Patel) and let Dr Specks call Dr Patel after Dr. Patel's response to my asking him to consult with Dr. Specks. Hope you can follow that which is why I used names. :huh:

Now I have to decide whether to go to Vanderbilt to see Dr. Loyd or to Rochester to see Dr. Specks. I've been in email contact with both of them. I like the fact of the RTX trial. There are people on the FM FB page that are in these pretrials and are having good results. I believe Dr. Loyd is also doing these pretrials. Vanderbilt is much closer to me and will cost me less to travel to since I can get there is one day. Talking to myself here just a little bit. :huh:

At any rate just wanted to do an update.

[annekat]

Cindy, it's awesome that he got back to you and wrote you such a nice letter. It sounded like he wanted Dr. Patel's name so he could call him about your case, but I can understand your wanting to give Dr. Patel a heads up first. Protocol is so weird to deal with sometimes. Seeing Specks in person sounds great, but I can understand your concern about the distance and expense. Not an easy decision, but I'm just glad that someone who knows what he is talking about is on your side and so willing to help.

[pberggren1]

My gut feeling is to get to Rochester ASAP. But only you can make that call based on what you know is going on with your body. You know your case the best. But I can also understand you wanting to go to other docs that are much closer. It seems that Specks would want to do another PET scan there and prob even a bronch to get a better idea of what is going on. What all did you send him by e-mail? If he had your latest scan and bronch report and pics I think that might be enough for him to go by to consult on your case.

[mishb]

Cindy, I had tears in my eyes when I was reading Dr Specks email.
He just sounds so genuine and caring and so willing to help.
On that email alone, I would go to him, however since the Doc in Vanderbilt is doing the same thing, then it's probably wiser to go closer.

[annekat]

If the doc in Vanderbilt is willing to be in touch with Dr. Specks as a consultant if needed, that could be a solution, too. I'm afraid I haven't followed your postings about that doc so much, but it sounds like it is someone you trust. I also think Phil's gut feeling about seeing Specks is a good one. If it was me, though, I'd probably have to go with the lower cost option.

[Alysia]

I would def go to Dr. Speckes. he sounds so amazing, so caring, so devoted, so human and professional. a rare doc. I would even come to him from Israel if I will need. you need such a doc.
getting rtx as a treatment sounds great to me.

[drz]

Specks is my regular Weg consultant that i see to monitor my Weg treatment so I am very biased but i would go see him for a consultation and then ask him for help in getting a consultant or treatment program closer to home like Vanderbilt or at nearest Mayo to you. It can be difficult to get an appointment to see him but it helps that he asked his appointment secretary to set you up if you wish to see him. The other doctor might be OK too but with Specks you have assurance that you will see the best to help sort out your health issues.

[LisaT]

I think if there's any way you can manage the expense and the travel, going to Dr. specks would be the best scenario. If it's not possible, then going to the other doc you mentioned and having Specks consult with him would also be good. It is sooooo nice when you hit on that one doc who is respectful, knowledgeable, reads or listens to what you have to say and wants to help!

It is also very encouraging to hear that they are getting good results with rituximab. Not to totally hijack, but it makes me wonder whether I should ask to get on it while waiting to find out if my inner friend is FM. I think that if it is, it tends to be slow growing, but why wait weeks if One doesn't have to?!.? Since the same drug is used for WG and we know I have one or the other or both, as do you, couldn't we have it prescribed right away without necessarily having to be part of the trial? The drs could prescribe it for our WG knowing it would also help the FM. Just like I've been taking cymbalta for fibro pain since before it was approved for fibro treatment in Canada because my dr knew it would help and it was just mired in red tape... On that thought (sorry for the stream of consciousness here), can you ask your rheumy to prescribe rituximab for your WG while you decide on a further course of action? Perhaps Dr. specks could tell you exactly what bloodwork you would need as a 'before' so you can still be a part of the trial but you could get started on the treatment right away. Just a thought...

[LisaT]

My last post was a bit of thinking aloud too. After I wrote it I thought, why not? And booked to see my rheumy and ask the same question. Would you like to get not he rituximab as soon as possible rather than waiting? If so, can't hurt to ask. If they say no and have good reasons for waiting then at least you'll know the reasons and that you tried.

[drz]

One advantage of being in the trial is they often pay some of your expenses or discount the cost if you agree to be part of the research study but you have to qualify by having a definite diagnosis and usually meeting some other criteria. If you are included in the trial or research study, they will usually insist on doing their own lab work to make sure all things are equal in the study.

[windchime]

The RTX for FM is obviously being used "off label" right now. It's not currently a regular trial, but sort of a pretrial from what I gather. There will be a formal trial soon I think. From what I understand you have to have an active inflammation with the FM. They do a PET scan to determine if you have bunches of B cells and if you do you generally quality for the RTX for what they are doing now. That's my understanding anyway.

It would be nice if you could get RTX right now, but it's expensive and insurance can be tricky if another drug is actually working. But hey anything is worth a try. I like the two birds with one stone.

As to which dr. They are both Professors of Medicine at the their respective locations. They are both experts in Wegs and FM (which doesn't really have experts.) I really like both of them. I will probably go see Dr Specks if I can swing the travel. Funds are limited right now.

Dr Patel is the one that refused to consult with him when I asked him to. Therefore I'm not sure if it would be a benefit to have Dr Specks call him. It would probably irritate him that I went over his head. Thanks so much for all your input. Love all of you.......:wub::wub:

[pberggren1]

Maybe we have to think of raising some funds for Cindy to get to Rochester.

[windchime]

AW Phil thanks for being so thoughtful, but I would feel very awkward in that situation. :ohmy:

[pberggren1]

Just let is know what will be the best treatment plan for you. And if going to Rochester is the best option and you can't quite afford it, then we will be glad to help. You are family.

[LisaT]

... And there could be non-cash ways to help. Perhaps someone in or near Rochester has a spare bedroom, or someone has a bunch of extra airline points?.

[pberggren1]

Exactly. Duane lives in Rochester. Lots of people have airmiles.

[Alysia]

I will be honored to help you, Cindy. With love. Just say yes.

[windchime]

You guys are making me cry. :crying: Good tears though. :smile1: Thank you, but still awkward......:blushing: I wish I could express how I feel right now, but very loved will do. :love:

[LisaT]

Cindy, would you want to help if it was another of your buddies on this forum rather than you needing to travel for treatment, and you were able to help? …. exactly. :hug2:
i don't know you all that well yet but I can tell that close and supportive relationships are formed here.. the people who love you want to help; if you let them, you're helping them too (by inspiring a communal sense of hope, by allowing them to feel that there's something they can do to help and they don't have to helplessly watch you suffer or not get the treatment you need, etc. etc. Its a WIN-WIN!)

[windchime]

All this is very humbling for me. In all my years I've always been the giver so it's hard for me to become the receiver. I've never felt such an outpouring of love and support as I do from you, my family, I sad to say not even from my other family. i'm very overwhelmed at this moment and yes Alysia every time I come back to this thread lately, I cry. It's a huge learning experience for me. Thank you Lisa for pointing out the win-win aspect of it as I didn't think of it that way. I will call Monday to see when I can get an appointment with Dr. Specks and see how long I'll need to be there. We will take it from there. Hugs to all. :hug3:

[Alysia]

You guys are making me cry. :crying: Good tears though. :smile1: Thank you, but still awkward......:blushing: I wish I could express how I feel right now, but very loved will do. :love:

https://i.chzbgr.com/maxW500/5342759680/h3F6697FF/

[LisaT]

I love your upside-down cat! And Alysia's hugging penguin....

[drz]

All this is very humbling for me. In all my years I've always been the giver so it's hard for me to become the receiver. I've never felt such an outpouring of love and support as I do from you, my family, I sad to say not even from my other family. i'm very overwhelmed at this moment and yes Alysia every time I come back to this thread lately, I cry. It's a huge learning experience for me. Thank you Lisa for pointing out the win-win aspect of it as I didn't think of it that way. I will call Monday to see when I can get an appointment with Dr. Specks and see how long I'll need to be there. We will take it from there. Hugs to all. :hug3:

Mayo gets thousands of visitors from all over the world each month so they have a lot of helpful and supportive services to assist you. You can access those by phone or on their web site I believe. They may have some helpful hints to reduce expenses too. Their airport also has many flights in and out to accommodate all the visitors. Good luck.

[windchime]

I love your upside-down cat! And Alysia's hugging penguin....

I loved the penguin too. She's so darn cute!!! That would be a lazy cat. A little stretch and little snooze on the back of the sofa.....Life is good.

[annekat]

Cindy, I would have helped if I could. I feel the love. What an outstanding group of people. I'm so excited to hear about your trip to Rochester and how it all goes! :hug3:

[Alysia]

Cindy, I would have helped if I could.

you are helping all the time, Anne, with your kindness and generosity and wisdom and caring :thumbsup:

[windchime]

Good news at last doing a little weggie dance here.........SSD was approved and will start on June 11th. Whoo Hoo. :hug3: I found out by going to the web site where I check in every once in awhile. :sneaky: It wasn't there on Monday, but it's there today!!!! I assume paper is in the mail.

I made an appt with Dr. Loyd at Vanderbilt and that's in July. I made an appt with a new Pulmy and that's on June 23rd so about a month out. She will call with any cancellations so may get in sooner. :thumbsup:

So that's all my good news for today. I think I did good. Big load off having SSD approved. Whew. Thanks to all of you for your unending support in my (as of late) frequent whining moods. With this done maybe things will look up. I sure hope so. :love:

A quick funny that happened today. I went to DMV to get my car tags renewed, CVS pharmacy, Walmart Grocery and Dunkin Donuts. When I got home my son's girlfriend said what's wrong with your pants. I put my hand back there and there was a big rip from the waist to the the crotch just to the left of the back seem. My butt was a hangin' out. Thankfully I had a long shirt on and only some was seen. I have pictures and as embarrassing :blushing: as they are everyone deserves to have a laugh and it's too funny not to share. Oh the underwear are a pretty green paisley too......:lol::lol: Ignore the big butt in the pants, BTW. I'm sure there was an easier way to do this, but not for me I'm afraid.

https://www.facebook.com/photo.php?fbid=10201288403007208&set=a.10201288402727201.1073741829.1686362171&type=3&theater

https://www.facebook.com/photo.php?fbid=10201288403847229&set=a.10201288402727201.1073741829.1686362171&type=3&theater

[annekat]

Yippee, Cindy! Good news! I'm so glad things are falling into place for you.

[LisaT]

Yippee, Cindy! Good news! I'm so glad things are falling into place for you.

YAY, so glad to hear all of this good news, Cindy. Looking forward to more in have yet to look at the green paisley butt pics, but i look forward to that too!

[annekat]

I missed the part about the green paisley butt! So went back to look at the pics and the content is currently unavailable! Darn!

[Debbie C]

YEH !!!!! I'm so happy for you. That is such a big relieve and you will probably get back pay also. Did you do it alone or have an attorney ? Any way ...great news. Glad you are seeing the doc also !!!!:hug3::hug3::hug3: One for each good thing that happened to you !!!! Not one for the pants thing though :)

[windchime]

I had/have an attorney that I sent a letter to two months after I signed them (about 7 weeks) into the process to tell them they were fired, but they didn't file the paperwork with SSA so i don't know what is going on. I've called their office and left a message if no call back I will call and leave a message for the actual atty. The first try they arbitrarily denied it by saying I was still working. Atty's missed the appeal. This one was filed 2/26 so I made it through the process pretty quickly, but I responded within days when they sent me paperwork and I took a very complete package down to the local office and dropped it off soon after the filing of the claim. I think that all made a difference. With all this behind me more or less I have advice

1. Don't hire an attorney right away. The forms on line are straightforward.
2. Do hire an atty as soon as you get an appeal letter. Make sure they understand this is an appeal. Even though I did that several times they still screwed it up. So I tried to fire them.
3. Pull together all your medical records and make a nice looking, easy to navigate file with dividers for them and deliver it to your local office soon after filing your paperwork online. I mean all. I had pulmy, rheumy, GP, neurologist, cardiologist, lab reports, CT reports, incidental tests, anything i thought would help my case. The file I dropped off was about 2 inches thick and that was mostly records from the last year. You will go through a lot of ink and paper.
4. Your claim will be given to an investigator that will need more information from you. Fill it out immediately and return it, either via fax or mail as fast as you can.
5. Go to any appts they schedule for you.
6. And wait.

I also made a copy of the file using the tabs, etc for myself. It makes it so much easier if you need to find anything.

If anyone needs help or has questions I'd be happy to help in whatever way I can.

[LisaT]

I had/have an attorney that I sent a letter to two months after I signed them (about 7 weeks) into the process to tell them they were fired, but they didn't file the paperwork with SSA so i don't know what is going on. I've called their office and left a message if no call back I will call and leave a message for the actual atty. The first try they arbitrarily denied it by saying I was still working. Atty's missed the appeal. This one was filed 2/26 so I made it through the process pretty quickly, but I responded within days when they sent me paperwork and I took a very complete package down to the local office and dropped it off soon after the filing of the claim. I think that all made a difference. With all this behind me more or less I have advice

1. Don't hire an attorney right away. The forms on line are straightforward.
2. Do hire an atty as soon as you get an appeal letter. Make sure they understand this is an appeal. Even though I did that several times they still screwed it up. So I tried to fire them.
3. Pull together all your medical records and make a nice looking, easy to navigate file with dividers for them and deliver it to your local office soon after filing your paperwork online. I mean all. I had pulmy, rheumy, GP, neurologist, cardiologist, lab reports, CT reports, incidental tests, anything i thought would help my case. The file I dropped off was about 2 inches thick and that was mostly records from the last year. You will go through a lot of ink and paper.
4. Your claim will be given to an investigator that will need more information from you. Fill it out immediately and return it, either via fax or mail as fast as you can.
5. Go to any appts they schedule for you.
6. And wait.

I also made a copy of the file using the tabs, etc for myself. It makes it so much easier if you need to find anything.

If anyone needs help or has questions I'd be happy to help in whatever way I can.

You're so organized! I have a smattering of records but they're not complete. Did you get copies and keep records from the very beginning or did you at some point realize you needed to get back-copies from your docs and keep a complete record yourself? I would love to create a more complete record but not sure how at this point. Had no idea when I walked into my GPs office years ago that my file would end up being massive... Now it's all electronic and I'm not sure how they even allow patients access. I suppose I should ask. All of my lab results are online and I can even create graphs tracking results over time, which is pretty cool. I just wondered how you went about putting together your whole medical history.

[windchime]

I've collected my records for years (stuffed in a folder,) but when i knew I was going to have to apply for SSD and an increase in my VA disability I had to sort and organize. I really only provided records for the last year/year and a half except for things that showed a trend i.e. CT results back 10+ years, my pertinent AF records. I have a copy of the file, plus I have a folder with misc records that I didn't need for my claim.

How to get your records. I get copies of labs and CT reports when I have my doctor appt. I usually will go back in a couple of weeks to get copies of the doctors notes. I usually get the CT on a disk when I get the report because they download it and don't need it any more. If I need additional copies I go to the imaging place and pay $10. Some doctor offices charge for records others do not. I'm lucky that most of mine do not. I did however have to pay about $25 to get my doctor notes from my Rheumy although she always gives me copies of labs when I'm there.

It's so much easier to start this early in your disease process rather than later, but most of the time for things like SSD they are only going to need records from the last year or so. If they have to request them that's probably about all they would request. I encourage everyone, if you haven't started getting copies of your medical records start now even if you stuff them in a folder because you don't need them right now. If your doctor sells his practice or leaves the area it may be difficult to get the records you need. You never know when you may need them. Gathering them all in the a period of months is very time consuming and definitely labor intensive. There are days where I worked on paperwork 6 hours a day. Getting and organizing, and filling out papers.

This is probably more information than you wanted, but it's an important subject to me. :biggrin1:

[LisaT]

I've collected my records for years (stuffed in a folder,) but when i knew I was going to have to apply for SSD and an increase in my VA disability I had to sort and organize. I really only provided records for the last year/year and a half except for things that showed a trend i.e. CT results back 10+ years, my pertinent AF records. I have a copy of the file, plus I have a folder with misc records that I didn't need for my claim.

How to get your records. I get copies of labs and CT reports when I have my doctor appt. I usually will go back in a couple of weeks to get copies of the doctors notes. I usually get the CT on a disk when I get the report because they download it and don't need it any more. If I need additional copies I go to the imaging place and pay $10. Some doctor offices charge for records others do not. I'm lucky that most of mine do not. I did however have to pay about $25 to get my doctor notes from my Rheumy although she always gives me copies of labs when I'm there.

It's so much easier to start this early in your disease process rather than later, but most of the time for things like SSD they are only going to need records from the last year or so. If they have to request them that's probably about all they would request. I encourage everyone, if you haven't started getting copies of your medical records start now even if you stuff them in a folder because you don't need them right now. If your doctor sells his practice or leaves the area it may be difficult to get the records you need. You never know when you may need them. Gathering them all in the a period of months is very time consuming and definitely labor intensive. There are days where I worked on paperwork 6 hours a day. Getting and organizing, and filling out papers.

This is probably more information than you wanted, but it's an important subject to me. :biggrin1:


Not too much at all, it's very helpful. Thanks!

[Alysia]

great news Cindy :thumbsup: God is with you all the way.
thanks for the advices. I am waiting for reply to my request. if they will say NO then I will try to use your advices as much as they can fit here.
I couldn't open the links to the fb. remain curious....
I must say that you amazed me more and more with your strength and handling of things. you give me inspiration :thumbup:

[windchime]

Sick today. Nausea started at noon took and anti nausea med and ate something. Didn't get better and thought lying down might help. All the further I got was the sitting on the side of the bed before I had to run to the bathroom and throw up. Slept for 2.5 hours and felt better. Started getting nauseous again about a half hour before dinner, again took some anti nausea med. Ate about half my dinner and still don't feel well. Haven't thrown up, but still nauseous and my stomach isn't happy. Must be some kind of virus thing. Don't like it and want it to go away. A little whining here sorry. :sad::sad:

[annekat]

Whine away, Cindy, you deserve it. I'm so sorry that after all your recent ups and downs you end up sick with some bug. I hope you can get over it soon!

[windchime]

Well I didn't throw dinner up so that's a plus. I still feel yuk though. Here's to a better day tomorrow.

[LisaT]

Sick today. Nausea started at noon took and anti nausea med and ate something. Didn't get better and thought lying down might help. All the further I got was the sitting on the side of the bed before I had to run to the bathroom and throw up. Slept for 2.5 hours and felt better. Started getting nauseous again about a half hour before dinner, again took some anti nausea med. Ate about half my dinner and still don't feel well. Haven't thrown up, but still nauseous and my stomach isn't happy. Must be some kind of virus thing. Don't like it and want it to go away. A little whining here sorry. :sad::sad:

oh, yuck, I'm sorry to hear this. You need a break! It's time. No apologies necessary, and that's hardly whining. Most of it was an objective report of symptoms with no chest-beating, wailing, or 'why me?'s, which, given everything that's been going on, would be completely understandable. I looked at your pics today of your adventures around the world. You are so strong and capable (not to mention beautiful)! You will get through this. I'm sorry you're dealing with a stomach bug on top of everything else. Hopefully it's on its way out and you'll feel better tonight.

[Beverly]

Bummer, Cindy. Nausea and throwing up is something I really hate. God bless you and I pray this will pass quickly
Beverly

[Alysia]

oh. Cindy, I am sorry :sad: be careful to have enough fluids and get well soon :hug1:

[windchime]

Today is a better day, so far no nausea. Said that last night too then it came back. Had a somewhat uncomfortable night. I'm beginning to wonder if some of the nausea wasn't tied to the horrendous headache I had yesterday. Reduced pred to 13 mg this week. So maybe.

Important thing is today I feel better. Thanks for all the well wishes.

[Alysia]

reducing pred can make horrible headaches :sad: do it very gradually, if any...
but if it was headaches plus nausea maybe you were dehydrated.... make sure you drink a lot today....
take care :hug1:

[LisaT]

reducing pred can make horrible headaches :sad: do it very gradually, if any...
but if it was headaches plus nausea maybe you were dehydrated.... make sure you drink a lot today....
take care :hug1:

Water, or vodka? Maybe a little of each… although bubbly drinks tend to work with nausea, so maybe prosecco?

[windchime]

I have gatorade in the frig, but didn't think of it until I crawled into bed last night. There was no way I was going to crawl back out of get it. :scared: Water is good........:thumbsup:

[windchime]

Because I'm experimenting to see what I can do here on the forum I uploaded the green paisley butt pics to an album. You should be able to see them now if so inclined and you don't think it will give you nightmares......:w00t: Don't roll on the floor laughing too much, but it was very funny at the time. :lol::lol:

[pberggren1]

I think I will have to report those photos.....lol. There is a button for reporting photos.....lol

[Debbie C]

Nice pic Cindy....that's so funny that you were all over the place and didn't realize that your pants were ripped:lol:. I do like your new avatar pic....very pretty ! Hope u are feeling better and no more nausea.

[windchime]

I think I will have to report those photos.....lol. There is a button for reporting photos.....lol

I think you should report the underwear!! Now you know why mom always says wear clean unripped undies. Perfect example. Could have been a Walmart picture. Might be since I was at the Walmart grocery. :crying:

[Dirty Don]

Weggies at WalMart: a pictorial!

[Alysia]

I think you should report the underwear!! Now you know why mom always says wear clean unripped undies. Perfect example.

https://i.chzbgr.com/maxW500/6359229696/hED449BF0/

[Alysia]

I think I will have to report those photos.....lol. There is a button for reporting photos.....lol

http://31.media.tumblr.com/tumblr_m5ilvyyLNR1qhwmnpo1_1280.jpg

[Alysia]

:back on topic:


sorry, I was "caught" by the pants :wink1: what was the topic ?

[windchime]

Alysia where do you find these pics?

Debra thanks re: new avatar. Pic is circa 2007

[me2]

Thank you Alysia,
I enjoyed the picture of Phil's cat.
Phil, I cannot find a 'report paisly' button

[drz]

Because I'm experimenting to see what I can do here on the forum I uploaded the green paisley butt pics to an album. You should be able to see them now if so inclined and you don't think it will give you nightmares......:w00t: Don't roll on the floor laughing too much, but it was very funny at the time. :lol::lol:

Where? There are no photos on your profile page here on the forum. The Facebook page is always unavailable for access so they aren't available for viewing to me.:sad:

[windchime]

Where? There are no photos on your profile page here on the forum. The Facebook page is always unavailable for access so they aren't available for viewing to me.:sad:

When you go to the profile page you should albums. Since I didn't want to share it with the whole world I limited it to contacts. I've sent you a friend request then you should be to view the infamous green paisley. :w00t:

[drz]

When you go to the profile page you should albums. Since I didn't want to share it with the whole world I limited it to contacts. I've sent you a friend request then you should be to view the infamous green paisley. :w00t:

No I saw the pix. On a teen I would just figure it was by intent. Like the day many New Yorkers wore their underwear on the subway.

[annekat]

Aha! Now I finally saw them, too. The green paisley pattern is a lot of what makes it funny. Otherwise, not too shocking or gross, just ripped pants. I see you like to dress comfortably, as do I.

[windchime]

I think I posted on here that I have an appt with Dr. Loyd at Vanderbilt (Nashville) in July. I decided to see him instead of Dr. Specks because he is a good doctor and he's closer. That equates to cheaper for me.

So today I contacted my cousin that lives in Atlanta and asked her if she would like some company for a few days as I travel to Nashville. She got all excited and offered to come to Nashville with me. So I will stay at her house which is only 4.5 hours from Nashville. That breaks my trip up nicely as Atlanta is about 6 hours from Orlando. Plus I get to visit with my cousin. They just moved to Atlanta from California about a year or two ago. Talk about culture shock, I'm sure. I'm one of her few relatives on the east coast so she's excited.

So that reduces my expenses greatly and I won't need any help to do this. Thanks for all the thoughts in that regard. I'm glad I'll be able to go and hope to get some information on what is happening with me.

By the way if there are any weggies in Atlanta, Nashville or anywhere in between and you want to meet for lunch or a cup of coffee PM me and we'll figure something out.

[annekat]

Sounds like a good plan and a fun trip. Maybe you can catch some music in Nashville if you are so inclined. But most of all I hope you get some real answers as to your health issues.

[Alysia]

Hi Cindy.
I am glad that you have found a way to meet a good doc and have nice comapny, (in a cost that you can afford). although it will be my honor and pleasure to help you in any way, any time.... the docs in Israel are not so good so I can't invite you for that purpose, but for the sea and the sun which are nice :cool1:
p.s. I found the pics on facebook and google. do you need any ? just say....

[LisaT]

Cindy, that's great that you're able to turn this trip into something to look forward to! That's the way to do it... I hope this brings you answers and a good treatment plan. I'll be thinking of you and checking in in the meantime! I don't know whether this is too 'woo woo' for you, but while I'm waiting to find out what the thing in my chest is (I've named 'it' Petunia), I try to focus on getting rid of it... Just thinking of it clearing up or going away, or going for results and being told it's gone. I figure it can't hurt. Last time I did this was w.r.t. a nodule on my lung and not he next ct it wasn't there any more. Of course, that could have been the prednisone Imuran, spectra, ... But maybe my visualization helped, who knows? I will pray for yours to leave you alone too... :sleep:

[drz]

I think I posted on here that I have an appt with Dr. Loyd at Vanderbilt (Nashville) in July. I decided to see him instead of Dr. Specks because he is a good doctor and he's closer. That equates to cheaper for me.

By the way if there are any weggies in Atlanta, Nashville or anywhere in between and you want to meet for lunch or a cup of coffee PM me and we'll figure something out.

Hope this works well for you. If you check the Weggie map you will find a list of people in that area.

[windchime]

Thanks everyone for your well wishes.

Lisa not too woowoo at all. I just need to do it. Just like I need to meditate more.

[windchime]

Well I went and did it. I used up way too many spoons this past week. In fact think I've used up my monthly supply. It was a busy week culminating with my grandson's first birthday party last night. I'm exhausted even after sleeping great for eight hours. So now I have to spend the next several days forcing myself to do nothing, which will undoubtedly be difficult on a mental level, but not a physical level. Although I'm pretty tired mentally too.

On another note. I have recently received some new labs and my kidney markers are going down. My endo is the one that ordered them and she didn't say anything when I saw her, but they are down past normal now. GFR is 50 and above 60 is normal and creatinine is 1.17 with the range . 50-.99. I think this is from meds. I had two ct with contrast before mid April within a couple of weeks of each other. I was also on CTX from 11/30 to 4/9. The blood test was done in 5/23. So at what point do I worry? I see the new lung doc on 6/22 and I will definitely mention it to him, but do I need to make an appt with the urologist too? I need some expertise here cause I've never had to deal with kidney issues before. Suggestions please. Thanks in advance.

[Alysia]

Hi Cindy.
I am far from being an expert, we will have to wait for the big ones to come and relate. but I know that creatinine should be 0.99 and under.
I would have send an e-mail or call your wg-doc about it.
please update us. congrat for your grandsome birthday. take care. :hug1:

[Pete]

See a nephrologist for the kidney issues. A urologist's area of expertise is downstream, so to speak. Hope everything else gets sorted out soon.

[LisaT]

Cindy, I don't know much about kidney issues yet, but the suggestion of seeing a nephrologist sounds like a good one. I AM becoming an expert at doing nothing while awaiting the next shipment of spoons. I'm sorry you ran out... Can you try to see it as an opportunity to catch up on the quiet/restful things you do t always have time for or make time for? Like your meditation, etc. Tell yourself it's a medical appointment or just as important as an appointment and you won't feel like you're 'lounging around' (even though we need lounging or resting time, I completely understand the inner critic who makes us feel lazy or unproductive.) if you need pointers for what to do, see yesterday's "I whipped Wegener's today..." I knew today would be ballet and jazz photo sessions, final bball tournament possibly in the rain, last-minute Father's Day gift shopping... So yesterday I lounged with a vengeance. I hope you have a very peaceful and restful weekend and that your kidneys settle down and have no problems. Hugs!

[windchime]

See a nephrologist for the kidney issues. A urologist's area of expertise is downstream, so to speak. Hope everything else gets sorted out soon.

Does this require a referral or will they make appointments without them. I've never been to nephrologist. I was just wondering if these number warrant a visit to a nephrologist.

[pberggren1]

What does your main doc say about those numbers?

[Pete]

Does this require a referral or will they make appointments without them. I've never been to nephrologist. I was just wondering if these number warrant a visit to a nephrologist.

When my creatinine was up, my rheumy suggested I see a nephrologist. Was also concerned about blood in urine. Don't know how your health insurance handles referrals. I self-referred to my rheumy at Cleveland. Other specialists I see at OSU were on the team that dxed me, so I don't need a referral to see them. However, I want my PCP or rheumy to coordinate visits to specialists.

[windchime]

What does your main doc say about those numbers?

I'm not exactly sure who that would be. I lost my pcp because she went to the VA. I will be seeing a new pulmy on 6/22. My rheumy has so far let the old pulmy lead and she doesn't think I have wegs any way. The endo said nothing when she gave me the results. So I will let the new pulmy handle it when I see him.

I'm mainly concerned with whether these values are enough to be worried about. The GFR did drop 8 points which seemed like a lot.

Pete, luckily I don't have any blood in the urine. I will try to self refer to a nephrologist. My insurance will let me but some time the docs won't let you.

[pberggren1]

Those numbers are concerning but I wonder what your previous numbers are. Prob still a good idea to find a Neph.

[BookNut]

CIndy.....Why doesn't the rheumy think you have Wegeners? That must be a little disconcerting. It would be nice to know for certain. Is there any way to get a definitive yes or no? It will be interesting to hear what the new Pulmy has to say. Sometimes I wonder how anyone is treated correctly. There is so much variation from doctor to doctor. Good thing we have this forum and also the internet as a source. I guess the advice to "question everything" is good advice. Must be a little frustrating for some older doctors who are used to their patients saying "Yes Sir, yes sir, three bags full!". :wink1:

[windchime]

Scary thing happened to me on Friday and I just want to see if anyone else has had a similar experience. Of course I could be loosing my mind and will talk to my neurologist about it at the next appt. :w00t:

On Friday my son said, "you didn't lock the side door to the house when you left." (We always use this door instead of the front door.) As he was saying this I'm trying to picture the house and I'm drawing a blank. I can't "see" the house or the door or anything relating to it. :confused1: I know I live in a house but I don't know what it looks like. This lasted for several minutes and then I remembered. Whew what a relief that was, let me tell you. :rolleyes1:

I've been having some memory issues, but nothing that bad, that I know of. Of course I didn't tell the boys about it as they already think I can't remember anything. Besides my oldest son insisted that I said I was bringing queso dip for the birthday party and I brought a ranch dip because I'm pretty sure I didn't say anything about queso dip. :rolleyes1:

Any ideas of whether this could be med related? I know this happens to some extent with age, but I thought I would have a few more years yet. :lol:

[BookNut]

What meds are you on? I don't know anything about any of them other than prednisone, and I KNOW that can cause anything from confusion up to full fledged hallucinations. But at lower doses and for most people there is little to worry about. Someone I know recently took some sort of smoking cessation. med and it made her very confused. Are you taking anything different...either a totally new me, or an increase/decrease in something else? If I were you, I would check it out with your primary care just to be on the safe side. Be well my friend!

[annekat]

Don't know what to think, Cindy.... I know I've had some lapses in memory, even some pretty significant ones, and some were well before I got Wegs. But nothing as significant as not remembering what my house looks like. I do remember hearing of a friend who was driving and came to a very familiar intersection in town and while sitting at the light, suddenly could not remember who or where she was, for a few minutes. And she was pretty young, too, late 30's-early 40's. She may have had a lot of things on her mind at that time, and I never heard anything later about any more such incidents. In any case, it wouldn't be a bad idea to tell a doc that you like and trust about this and see what the response would be.

[windchime]

Thanks Anne and Jacque. Now that you mention it I did have a lot of things on the mind. I was pretty exhausted by this time as this was on Friday night and I crashed on Saturday. It makes sense that may have played a roll. Didn't think of it. I will check with the neurologist when I see him in July. Thanks for making that click.

[LisaT]

Cindy, that must have been scary. I think it could be stress and fatigue, but of course it's a good idea to mention it to your doc just to make sure. I've had a few such moments, especially once I've run out of spoons. My family now understands that when I tell them I've 'hit the wall' I won't be accomplishing anything more or even thinking very clearly until I've slept again. It's usually better after rest. I am planning to rule out Wegs in the brain just to be safe as well, because I've noticed things like blanking on names in the middle of introducing people (very embarrassing), forgetting what I went to the pantry or another room for, etc. I can't recall a loss of a visual memory like your inability to recall your house, but I'm very familiar with the feeling of, 'wait a sec, how can I not know this or remember that... What the heck is up with my brain'... I hope and pray this is just fatigue, pain, meds, anything but inflammation in the brain. I think it would be a more consistent problem if it were brain inflammation, rather than hitting us at our weakest moments, but perhaps those with more experience in this area can tell us.

[windchime]

Thanks Lisa. I've had worsening problems with my memory over the last year, but overall I can say it's been a very stressful year+. My Dad passed in April 2013 then I started with this current mess in Nov 2013. So I vote for stress as the cause. My neurologist will want to do a brain MRI cause he wanted to do one after I hit my head when I passed out. I didn't get it cause it was the first of the year and my deductible wasn't yet paid, etc. So now that it's taken care of I'll probably get it done. As I said before this getting old isn't for wussy's. Sheesh.

[Alysia]

Hi Cindy.
it sounds scary. but it can just be the result of fatigue and/ or emotional "flooding".
it can also be a state of "dissociation" like when you are driving your car without thinking and the car reaches its destiny and you are wondering how you get there.
check this link : Self Tests by Psychology Today (http://psychologytoday.tests.psychtests.com/take_test.php?idRegTest=3360)
please update us how you feel. :hug1:

[windchime]

Alysia thanks for the link. I scored a 41 and here is what it said:

"Your results indicate that you have a great deal of difficulty remembering things. When it comes to absorbing information or recalling details, it appears as though you have very few sponge-like qualities. The good news is that there are a number of techniques that can be used to improve memory recall, including mnemonic devices (e.g. using a rhyme to recall State capitals), or making visual associations (e.g. remembering your client Scarlet Jones' name by picturing her driving a red car). Of course, writing things down couldn't hurt either! Keep in mind that although factors such as fatigue, stress or poor diet can play a role in poor recall, other, more serious causes of forgetfulness include tumors, medication side effects, Depression, and Alzheimer's Disease."

Sooooo my sponge has dried up. What a problem to have. I vote for the stress, fatigue and meds. Something has been making me feel "loopy" for the past some time now. Since I'm not on pain meds and I've been on Lyrica for 7 years with no problems it's either the pred or the fatigue. I think it may be the fatigue. I think it was Lisa that mentioned feeling "loopy" when really fatigued. I just happens to me a lot lately. Hope all that makes sense.

I sure hope the new pulmy is a good doc. I NEED a good doc. Appt is next Monday. Yay!!! Neuro appt changed to 7/7 but will have no answers until MRI is done so probably August.

[LisaT]

Alysia thanks for the link. I scored a 41 and here is what it said:

"Your results indicate that you have a great deal of difficulty remembering things. When it comes to absorbing information or recalling details, it appears as though you have very few sponge-like qualities. The good news is that there are a number of techniques that can be used to improve memory recall, including mnemonic devices (e.g. using a rhyme to recall State capitals), or making visual associations (e.g. remembering your client Scarlet Jones' name by picturing her driving a red car). Of course, writing things down couldn't hurt either! Keep in mind that although factors such as fatigue, stress or poor diet can play a role in poor recall, other, more serious causes of forgetfulness include tumors, medication side effects, Depression, and Alzheimer's Disease."

Sooooo my sponge has dried up. What a problem to have. I vote for the stress, fatigue and meds. Something has been making me feel "loopy" for the past some time now. Since I'm not on pain meds and I've been on Lyrica for 7 years with no problems it's either the pred or the fatigue. I think it may be the fatigue. I think it was Lisa that mentioned feeling "loopy" when really fatigued. I just happens to me a lot lately. Hope all that makes sense.

I sure hope the new pulmy is a good doc. I NEED a good doc. Appt is next Monday. Yay!!! Neuro appt changed to 7/7 but will have no answers until MRI is done so probably August.

i got got the same thing on the test! Yes, it's me who gets loopy. I'm loopy right now. Just hit the wall. I hope your new doc is good.

[windchime]

Ok let's do loop-d-loops together. Yes it's mostly when I hit the wall, but there are other times too. Maybe the wall is closer than it appears in the mirrors......lol. Feeling silly tonight.

[annekat]

I scored even lower than you, Cindy, and got the same description. Things like forgetting where I parked my car, where I put things, why I came into a room, remembering people's names... I get the impression all people of a certain age report these things. I know some of us are not at that age yet. But it is hard to know what is age and what is Wegs. I guess I can accept that I do these things a little more often than I would without Wegs. Makes me tired just to think about it.

[Alysia]

I think that one of the questions is: was your memory always like that or is it getting worse ?
(I got 93, btw)

[annekat]

93 is very good, Alysia. You are not too far gone yet! And maybe you never will be... I hope!

[Pete]

I got 86. I guess my rule of thumb would be to attribute brain cramps to aging and aches and pains to wegs (at least initially). ;)

[windchime]

Great scores Alysia and Pete. I've started playing games to help with memory. Problem is they aren't necessarily memory games. sigh. There is one I've seen on FB, but can't remember the name. LOL I'll see it again and who knows maybe it will help.

[Pete]

My wife does crossword puzzles in the newspaper every day.

[Alysia]

maybe here there is something worth: Memory Games | Improve Memory Games | Brain Metrix (http://www.brainmetrix.com/memory-game/)
interesting new signature, Cindy :thumbup: makes me feel a bit of sadness, though ......

[annekat]

My wife does crossword puzzles in the newspaper every day. I do crossword puzzles fairly often. They seem to calm me down and take my mind off of whatever stresses I'm feeling. I think for me, stress is some of what causes the brain fog. Losing one's car... the classic. The problem is I forget to pay attention to where I'm parking it and then can't remember which row it is in when I get back out there. And other cars are blocking my vision so I can't see it. This happens at Target all the time. Generally, I park far from the store in the area where there are fewer cars parked. And I get a little exercise on the way to and from the store.

[windchime]

I flunked crossword puzzles 101 so that's not a good outlet for me. Although I have a good vocab I CRS when it comes to words. I'm sure that doesn't make sense, but it's true. I know what a word means and can use it properly, but often I can't put it into words what it means. It's baffled me for a long time.

Alysia why the sadness? I think it means we will go on to do greater things. That's how I like to think of it anyway. :biggrin1:

[LisaT]

I do crossword puzzles fairly often. They seem to calm me down and take my mind off of whatever stresses I'm feeling. I think for me, stress is some of what causes the brain fog. Losing one's car... the classic. The problem is I forget to pay attention to where I'm parking it and then can't remember which row it is in when I get back out there. And other cars are blocking my vision so I can't see it. This happens at Target all the time. Generally, I park far from the store in the area where there are fewer cars parked. And I get a little exercise on the way to and from the store.

i walk around around the general area in which I think I might have parked, pressing the button on my remote, and watch for the van lights to flash...

[LisaT]

I flunked crossword puzzles 101 so that's not a good outlet for me. Although I have a good vocab I CRS when it comes to words. I'm sure that doesn't make sense, but it's true. I know what a word means and can use it properly, but often I can't put it into words what it means. It's baffled me for a long time.

Alysia why the sadness? I think it means we will go on to do greater things. That's how I like to think of it anyway. :biggrin1:

I find it comforting.

[mishb]

I got 86 as well.

I guess loving doing Sudoku puzzles has paid off :tongue1:

[windchime]

i walk around around the general area in which I think I might have parked, pressing the button on my remote, and watch for the van lights to flash...

I did this just last week, but in my defense there was a big SUV blocking my view. :lol:

[windchime]

I got 86 as well.

I guess loving doing Sudoku puzzles has paid off :tongue1:

That is another game that I've never been able to figure out. Maybe I just need someone to teach me the concept because any instructions I've ever seen are baffling. I like working with numbers too, but this one escapes me. Yay on the 86 Michelle. You young whippersnappers.......:lol:

[annekat]

I got 86 as well.

I guess loving doing Sudoku puzzles has paid off :tongue1: I used to do a lot of Sudoku puzzles. I got tired of them. Guess I should start up again... I wasn't bad at it. I should probably take the test again as I may have been too hard on myself with the answers. And yes, Michelle, you are a whippersnapper! :flapper:

[Alysia]

I never did Sudoku. I hate that stuff..... sorry. why am I telling it ? because maybe you can still have good memory without torturing yourself with it.....

[annekat]

I never did Sudoku. I hate that stuff..... sorry. why am I telling it ? because maybe you can still have good memory without torturing yourself with it..... Oh, there you are! By all means, don't do Sudoku if you don't like it. Maybe that's why I stopped, it was starting to irritate me. I prefer things with words. I'm sure there are lots of puzzles and things you would enjoy, and besides, you got the best score so far of any of us on memory and mental sharpness, so you really don't need it!

[Alysia]

I love to remember stories, mostly real ones. Anne, your memory is better then you think, after all, you were the only one around who remembered who had the problem with the ear's lobe :thumbup:

[annekat]

I love to remember stories, mostly real ones. Anne, your memory is better then you think, after all, you were the only one around who remembered who had the problem with the ear's lobe :thumbup: True, and I remember the names of flowers, though I'm not that much of a gardener. The memory problems seem to be erratic.... the info is all in there, in the brain, but sometimes accessing it is a problem. Thanks for reminding me that I'm pretty sharp, after all.

[BookNut]

I never did Sudoku. I hate that stuff..... sorry. why am I telling it ? because maybe you can still have good memory without torturing yourself with it.....

I'm with you on this one. Numbers are definitely not my thing. I took the SAT tests when I was 16. I scored 710 out of 800 on the verbal section...and 325 out of 800 on the math section. i am so unbalanced, it is a wonder I can even stand up straight!!

[annekat]

I'm with you on this one. Numbers are definitely not my thing. I took the SAT tests when I was 16. I scored 710 out of 800 on the verbal section...and 325 out of 800 on the math section. i am so unbalanced, it is a wonder I can even stand up straight!! An interesting thing I might point out is that Sudoku does not involve any math at all. It could be set up using the letters A through I instead of the numbers 1 through 9, and it would be the same thing. You aren't calculating anything, you are just figuring out visually and logically what goes where, according to the rules which say only one of each number per box or row.. could just as well be one of each letter. Right, Michelle? Getting the hang of it may lead to wanting to do it more, but I'm not trying to talk anyone into it....

[BookNut]

An interesting thing I might point out is that Sudoku does not involve any math at all. It could be set up using the letters A through I instead of the numbers 1 through 9, and it would be the same thing. You aren't calculating anything, you are just figuring out visually and logically what goes where, according to the rules which say only one of each number per box or row.. could just as well be one of each letter. Right, Michelle? Getting the hang of it may lead to wanting to do it more, but I'm not trying to talk anyone into it....

Really? Are there actual puzzles available with letters instead of numbers?? I never knew. I can see patterns in pictures and words...but never numbers.

[annekat]

Really? Are there actual puzzles available with letters instead of numbers?? I never knew. I can see patterns in pictures and words...but never numbers. I doubt there are Sudoku puzzles available with letters. Personally I'd rather have them with numbers because the numbers mean less to me than letters would. The point is that the numbers are just being used as symbols, because they are easily distinguishable from each other visually. It is not about numerical values at all! It is more about logic. If this goes here, then that can't go there, that sort of thing. A Sudoku game could be made up using any nine symbols that could be written or drawn in by the player. It is just a lot easier when it's numbers because we are so familiar with them and they are easy for us to write. To me, it's easier to say, well there isn't a 3 in that row yet, or in that grid of nine spaces, and if I put a 7 there, then I can't put one in this other place. I don't think using letters would make the concept easier at all, because again, they would just be symbols and where you put them would have nothing to do with them as letters. You'd just be saying, well, I can't put an A there because there's already one in that row, and that sort of thing. It's a process of elimination, and if you mess up one grid or row, you've messed up the whole puzzle and may have trouble backtracking to your mistake. But whether you ever try one or not, just get over the numbers vs. letters thing, because it's really not relevant. If I were there, I could show you in a flash, and you'd have it!

[Debbie C]

I just took it,I got a 90, I'm bad with names. Someone can tell me there name and I can forget it as soon as I hear it.

[annekat]

You did well, Deb. I think some of us have just developed bad habits, like not training ourselves to always put our keys in the same place. I'm like that with names, too.... either it's someone I just met and I hear their name and don't make a point of remembering it before getting into the conversation.... or it's someone whose name I've known for years and it just draws a blank.

[mishb]

Yes, there are even Sudoku's with letter.
Sudoku is not a math solving problem - you just need to be able to count from 1 to 9 or know the alphabet from A to I
The idea is to use only one number or letter in each line and box. So each box you should have 1 to 9 and each line should have 1 to 9
Checked out the attached puzzle - it has letters and numbers.
I also like scrabble and word games that keep my mind going.....but I seem to be getting progressively worse with thinking of words to complete a sentence sometimes.

Free Daily 12×12 Giant Sudoku (http://www.puzzlemadness.co.uk/12giantsudoku.php)

[annekat]

Wow, Michelle.... I had no idea. It occurred to me also that Jacquie could also take a regular Sudoku with numbers (start with an Easy one) and just white out each number and replace it with a letter and see if that makes it any easier to approach the situation.... although I sort of doubt it.

[windchime]

I had an appointment with the new pulmy on Monday. He spent a long time with me and ended up saying he had to spend some time going through all my records and looking at my CT's. He also wanted to consult with the Interventional Pulmy in his office.

He called me today and wants me to see the other pulmy because he is pretty sure I have Fibrosing Mediastinitis. He said I may have wegs too, but the FM is what's causing my current problems. Right now my bronchs are pretty full of mucous (sound familiar Phil?) They are getting me some kind of vibrating thingy and if that doesn't work the vest that vibrates.

My appointment at Vanderbilt is on July 15th and he is more than happy to consult with Dr. Loyd especially as he admitted this is so very rare. There is an experimental treatment protocol for FM which is RTX. So if I do have the wegs (and I'm pretty sure I do) it will help that too. If I can get into that trial that would be great.

I'll update as I get info. Thanks to all for your ongoing support.

[LisaT]

Cindy, I'm sorry it looks as though you have FM, but I'm glad you're getting some answers and hopefully some treatment. Do you know what the trial guidelines are? Maybe the doc who said you don't have WG/GPA will be helpful in getting you into the trial. I hope you can get into it. If not someone should prescribe you the RTX for the WG/GPA and do your own off-label trial. It sounds like you have a good team of docs and they're cooperating, so that's comforting too. Sending lots of good thoughts and prayers your way.

[annekat]

Thanks for the update, Cindy. The new pulmy sounds good. I'm glad some progress is being made in figuring this thing out. I don't like the sound of all the mucus in your bronchs. I'm hoping something can be done about that. Best wishes to you.

[Alysia]

our precious Cindy :love:
it sounds that you are in good hands now :thumbsup: although the dx is not very nice. but the treatment - rtx - is just fine for us. it will help you for sure. rtx saves me.
as for clearing the airways, I am curious, how and if the vibrating thing can help and/or the vest.
I pray for you that it will and soon :hug1:

[windchime]

Oh yes, I forgot to add that a respiratory therapist is going to come to my house once a day/six days a week to do a percussion treatment to try and break the stuff loose. My guess is this all has to be done prior to any invasive type procedures being done. Just a guess.

[Alysia]

Oh yes, I forgot to add that a respiratory therapist is going to come to my house once a day/six days a week to do a percussion treatment to try and break the stuff loose. My guess is this all has to be done prior to any invasive type procedures being done. Just a guess.

sounds good :thumbsup: please tell Phil about all of this, it might help him as well....

[me2]

That sounds good Cindy. I don't have any experience with what you are dealing with but I do know that often people further down the chain of command from doctors are more help and have better ideas than the doctor does. I'm hoping the therapist can really help you and give you some relief.

[Beverly]

You certainly have my prayer support, Cindy. I am encouraged about the rtx treatment and glad you will have therapist coming to you:thumbsup:
Lots of hugs for you :hug1::hug2:

[LisaT]

Let us know how it goes... I am very hopeful that you're going to get some relief and feel better. :smile1::smile1:

Did I mention serrapeptase to you? It's a supplement my Bowen therapist told me about because it can apparently rid us of 'tissue' we don't need or want. I think FM is active or live tissue rather than 'prior granulomatous disease' which is what they think my thing in my chest is, but maybe worth looking into regardless? I think a naturopath and/or pharmacist might be able to give you some info. I know there's so much going on right now... Just something to think about adding to the mix at some point if it sounds right to you.

[pberggren1]

All of us can benefit from consulting a naturopath.

[BookNut]

Cindy, We have been away for a few days, but I check my email now and again. This is a challenging diagnosis that is for sure....bit it sounds from this post and another you posted a little later that you will finally be getting the treatment that you need. I have heard of the vibrating vest. I know they are finding that there are more people than ever believed possible who are developing adult onset cystic fibrosis. The vests are a common treatment for CF and other disorders that result in a build up in mucous in the lungs. What is the other vibrating thingy you refer to. I have a flutter valve. Is that what you mean? Anyway, I am most happy to see some action going on in your medical treatment. My husband used to have the percussion treatment frequently during his hospital visits many years ago. It took a long time, and much trial and error with his medications, but his asthma is in much better control now. I will look forward to seeing reports of how you are getting on. Thanks for keeping us up to date!

[windchime]

Had the treatment with the respiratory therapist today. She said it make take a couple of weeks to get stuff to start coming up. I thinking all this pounding on my back might be good for those muscles that hurt...just a hopeful thought.

Jacquie it may be a flutter valve. You blow into it and it vibrates the bronchs somehow. I'm not familiar with it. She the RT isn't impressed with the vest as it apparently doesn't vibrate enough for her.

Lisa I might try a naturopath when I get done with all my travels this summer. I have 3 trips plus my mom is coming to visit. so July, Aug and early Sept are kind of booked. And I have to keep up with existing appointments. I also have to find one. Any idea on how to find one? I'll check out the supplement after all what's another pill? Lol.

[pberggren1]

I just looked in the yellow pages and found my naturopath.

I have tried the flutter valve a few times again recently but find it is too hard for me to use. I try it first thing when I get up but my breathing is much too poor to do it. I try it after I get everything coughed up but then there is nothing to come up pretty much so mostly pointless to use it.

I am going to ask my lung doc and RT about the vest thing.

[Alysia]

I have tried the flutter valve a few times again recently but find it is too hard for me to use. I try it first thing when I get up but my breathing is much too poor to do it. I try it after I get everything coughed up but then there is nothing to come up pretty much so mostly pointless to use it.

maybe try it in between ?

[windchime]

OK it's time for an update and what has been going on this summer. In other words, "What I did on my summer vacation." :rolleyes1:

Made the trip to Nashville via Atlanta, towing my cousin along. Saw Dr. Loyd at Vanderbilt. Very nice man. I have a very "complex and complicated" case. :crying: Does anyone ever want to hear this? After talking to me and reviewing my med files, he wanted to consult with some peers and get back to me, however he did say that it appears I had a wrong diagnosis back in 72-73 and I actually had Fibrosing Mediastinitis then and not Wegs. I did have a very positive test for histoplasmosis back then so that does make sense. He repeated my ANCA which of course was still negative. Imagine that.

In the meantime, I changed local pulmonary docs and love my new one, who isn't afraid to consult with Dr. Loyd. In fact, he's actually deferred to his decisions.

I went on vacation to New Mexico for two weeks to see my mom for her 84th birthday. She was of course thrilled. In the 12 years of so I've been visiting NM it's never rained. We had a raging rain storm or two while I was there. We were actually out in the car during one. All their streets are designated arroyos which means they are like rivers when it rains. :w00t: Well, I survived the trip to and fro.

When I got back I had to do a lung perfusion and ventilation scan or VQ scan. It shows how well your lungs are using air and where the blood supply is. Not much going on in the right lung. No news there since the lower two lobes are collapsed.

Had a conversation with Dr. Loyd and he was recommending that I have a bi-lobectomy. Since surgery for this disease is almost always contraindicated I of course wanted to know why he was recommending it. He said of the 300 patients he's seen over the years with this disease he's only recommended to one other patient, who had a successful lobectomy. He wanted me to see Dr. Pierkert at Mayo in Rochester and said they would be the best place to have surgery.

I thought on this, mainly because I really don't feel good about this surgery. :thumbdn: My local pulmy referred me to a local surgeon just so I could talk to him about what all this entails. He said that the risks involved in this type of surgery far outweigh any benefits that may be achieved. The chances of getting post obstructive pneumonia are slim since the bronchs are 100% closed and nothing can get in there to cause an infection. From what I gather that was one of the main concerns going forward. He did say, however, if I decided to have the surgery that I should go to Mayo as they are best equipped for it. It was refreshing to talk to a doc that didn't want to jump in and rip my chest open. He also left his ego at the doc, liked that too. :thumbsup:

So right now, no surgery, whoo hoo.:hug3: I have another CT (every 6 months) in late Sepember. I don't expect much change since this normally progresses slowly except when irritated and annoyed like when I had the bronch. I'm still on O2 and will continue with it as my pulse ox drops too low and I'm still struggling with the shortness of breath. Other than that I feel pretty good most of the time. Have to watch the spoons though as I tire easily. Getting ready to head to Seattle to visit with some old friends. My mom then comes to visit when I get back so she can see the greats and her sisters in So Fl.

So how did I do on my summer vacation? I thought it was very productive. A lot of traveling for me, some necessary some strictly for fun.

I keep up with all of you on the forum even though I don't reply as often any more. You're still my family. This is the BEST forum around.

Lots of love and light to you all. :love::wub:

PS. Lisa and Anne hope to see you and anyone else that can make it in September.

[BookNut]

Cindy...it all sounds great!!! I am glad you had some fun as well as productive doctor visits. No longer have a WG diagnosis? Don't despair. These guys will support your medical journey no matter what!! So glad to hear the news!!

[drz]

US News and World report ranked the Pulmonary department in Rochester Mayo as number one in the nation. I am guessing your Dr. Peirkert was the one in this department too. They ranked number one in nation in about half of their specialties for adult care and number two in three other areas with number 7 being their lowest ranking.

I don't know how much weight one should give to such rankings though. I feel i got some very poor service though from one of their departments ranked number one in nation. These ranking might also be like rankings for sports teams or cars where there might be little difference in the top candidates but one should generally expect you would get excellent care there which is why people do come there from all over the world.

[windchime]

In this case Mayo, Rochester has the surgeons experienced in this disease and I doubt they have operated on all that many. From what I understand the calcification's are literally "like a rock" and very difficult to hack through. In addition, they are impossible to "detach" from blood vessels ,which are very thin walled, and other soft tissue. collateral veins are also created in places they don't expect them to be which creates copious amounts of blood. With all that stuff going on in the chest, surgery for this disease is usually contraindicated for good reason.

As with any other organization, however, it's only as good as the people in it. I've had bad experiences at places rated excellent too and wondered how did that happen. But it happens as people do have off days, they're inexperienced and they don't want to appear to have less knowledge than you (my personal fav):rolleyes1:, or they are just decided to be pompous asses for the day. I have no option so will go there if it is warranted. Right now I'm just happy to finally have a firm diagnosis, crappy as it is. I'm also happy to be feeling half way decent even with the O2 in tow.

Things will never be normal again as with Wegs, I still have to watch my spoons. I'm very grateful that this disease waited 40 years to get worse and didn't screw up my partying days. One has to have priorities you know. :lol::wink1: Oh yeah and I'm down to 4 mg of prednisone. Whoo Hoo!!! :hug3:

[LisaT]

Looking so forward to meeting you! I will never forget and will forever be grateful for your immediate warmth and support and opening up to me about the possible FM diagnosis when I was going through similar. While I wish you did not have this strange disease, I'm glad you have some more definite answers and that it will hopefully NOT progress more or if it does, it will be at a glacial pace so it doesn't cause any more problems than you're already dealing with. Don't give up hope that it can get better/shrink/go away! Stranger things have happened...

[annekat]

Me, too, on looking forward to meeting you, possibly next Saturday at the Olympia Farmers Market? I will PM you to clarify, since I screwed up the original communication we had, thinking you were talking about August when it was September.