Hi new from Orlando

[windchime]

Hi, just wanted to do a short, I hope intro. My name is Cindy and as stated I'm from Orlando. I was diagnosed with Wegs in 1972 at the tender age of 20. Later determined to be limited Wegs. I've been mostly symptom free for the past 40 years, but with hindsight I realized there were signs (skin, constant runny nose, neuropathy). About 10-12 years ago I had a brochoscopy for a lesion in my lower right lobe. They were unable to get to it because of a bloody airway. My lung partially collapsed and I was in the hospital for a week. All washing came back negative for Wegs, of course. I was followed with CAT scans for two years with no noticeable change.

About a year ago my lung capacity changed and after changing primary care Docs I found one that referred me to an Interventional Pulmonologist. A CAT scan in April that showed two lesions in my bronchial tubes. The doc elected to follow up in 6 months because my father had passed on the day of my appt. Don't think I would have been able to cope with a bronch right then. My 6 month followup was two weeks ago and the Doc decided to do a bronch. This was done with full knowledge of what had previously happened with the last bronch. (I had the report.) The doc found bronchial stenosis in the right bronch and the bronch intermedius. He stretched both using balloon dilation. He then used an Argon plasma laser to control bleeding and excise the lesions (which were benign but consisted of granulation tissue). These were obstructing the airway. 90% in one location and 50% in the other.

Right now he's sending the biopsy off for a second opinion to a pulmonary pathologist (probably Mayo). (He didn't think the hospital was thorough enough.) I currently have a partially collapsed lung (again). Since he removed 50cc of blood, my thought is this caused the collapse. So coughing, hard to breathe, very short of breath right now. Using an incentive spirometer. Plus I'm on 40 mg of predisone stepping down over 1 month. Before starting that today I had just finished a dose pak for a week. He wants a definitive diagnosis before adding CTX. I'm in agreement with that.

My original dx was made from an open lung biopsy in 1972. It was sent to AFIP (Armed Forces Institute of Pathology.) They no long exist. It was then sent to Mayo for a second opinion. They both came back consistent with Wegs.

So a somewhat scary time for me right now. Very stressful needless to say. Holidays, not working since I can't breathe, and more drugs.

Sorry this wasn't as short as I had hoped.

Cindy

[pberggren1]

Welcome the family Cindy.

I also have bronchial stenosis, caused by scar tissue. It came on in late 2011 and have had 5 balloon dilations so far and my next one is Dec 12th.

Why not use Rituximab (RTX)?...instead of CTX?

So what has gone on in the 10 years since your last bronch? Fill us in more on the early years. Are you on any other meds right now besides the pred? Having bronchial stenosis as well and also having an Interventional Pulmonary doc I would like to follow your case closely.

I can certainly relate to the crappy breathing. I can hardly wait the 4 weeks until my next dilation. Have you ever used puffers or any bronchio dilators?

[annekat]

Cindy, I just want to say welcome, though I have none of your issues except for having had some lung involvement around time of dx, but nothing like what you have been through. I am noting the amount of time you have had WG and wondering what meds they put you on in 1972. And I am wishing I could ease your anxiety about what's currently going on and what lies ahead. Phil is the better person for that since he has similar issues.

I was also 20 in 1972, so we are the same age. I was dx'ed in 2011 after a couple years of sinus and ear problems before the brief period of lung involvement started. CTX cleared up the lungs, I'm now on MTX along with the pred, and I'm overall doing well, though still dealing with the sinus stuff that drags on for a lot of us. I'm glad you found this forum, as it has been for me an ongoing source of comfort, information, support, and friendship. Don't worry about writing too much, it is easy to do on here, and many of us have done it. No one here really minds reading long posts, nor do we mind rants and venting. I'm looking forward to hearing more from you.

[windchime]

Hi Anna, Thanks for the wonderful welcome and responding to my post. I was never put on meds in 72 as they followed me via xray's and CT's and saw very little change. They knew very little about this disease back then as I'm sure you're aware. Thank goodness there was no Google back then or I would surely have scared myself silly. Thank goodness you don't have the lung problems although I'm sure the other issues are no picnic either. Hate the sinus stuff. I live for Mucinex to thin out the mucus so I don't choke.

I was actually dx'd at Madigan Army Hospital in Tacoma. Small world isn't it. I lived in Washington for 17 years. Still love and miss it up there.

Take care,

[windchime]

Hi Phil and thanks for the warm welcome. The Doc and I have not had a complete discussion regarding the meds. CTX may be difficult as I also take allopurinol and it's contraindicated with CTX. So I'm not sure where he will go. He did also mention the MTX.

I recovered after the last bronch with no lasting problems that I was aware of. Part of the reason they hospitalized me was because 10 years prior to the bronch I had been dx with TB of the lymph nodes. They thought it could have taken root in my lungs (even though I was in tx for 15 months and it never appeared in my lungs) so they kept me in isolation until labs came back as neg for everything. As my current Doc explained to me, bronch washing will usually never test positive for Wegs and they need actual cells for the dx. In the intervening years I have had muscle pain, dx fibro; chronic sinus issues, dx allergies; skin issues, dx non specific dermatitis; excessive sweating no dx (this one makes me the most bonkers LOL).

The early years. I enlisted in the Air Force at 18. At 20 I had a miscarriage and needed a D&C. As part of the preop they did a chest xray and saw nodules. I was tested for histoplasmosis--very positive reaction, TB--negative. They best way to determine for sure was the open lung biopsy. They discharged me from the AF with a disability since they couldn't find my pre-enlistment xrays therefore they couldn't prove I had it when I enlisted. This all took place in Tacoma Wa at Madigan Army Hospital. I was followed for 10 years, but never treated because the lungs never got worse. Through the years I would get additional cavitated nodules showing up on the xrays, but no other symptoms that I could match with the wegs. Back then the only symptoms that I was told to look for was sinus, skin, lungs and kidneys. In the 90's I had a pulmonologist that tried to second guess my 1972 dx. Ditched him quickly. After the 10 years with no symptoms I unfortunately got lazy with regard to visiting a pulmonary doc.

I moved to Florida in 87 and that is when my sinuses got worse. With hindsight it's been about the last 15 years that my lungs have really started to get worse, but not much was showing up on the xray or cat. With me, my lungs are just very vascular, which caused the bleeding on both bronchs, and that doesn't show on the scans.The only thing that shows up is the granular tissue. Cut them and they bleed, a lot. I lost 50 cc's of blood during this last bronch. Doc told me you bleed out at 200 cc's so that was scary. As soon as I get a head cold I get predisone to keep it from going to my lungs. This usually works. I've had pneumonia once in conjunction with the flu. The tightness in my chest has gotten progressively worse over the last year. The calcium deposits on my bronchs have been there for many years. Over the years I haven't found a pulmonary doc that knew much about Wegs. No surprise there. So I'm blessed now that I have my current Doc.

I also have type two diabetes, HBP, reflux, sleep apnea, neuropathy in my feet, restless legs. I think that's everything. I take meds for all of that. I also have albuteral inhaler and I'm currently using Asmanex for the breathing issues. I'm very allergic to Foradil. Makes my tongue swell. Another scary thing. It happened 5 times before I figured out what was causing the swelling because it wasn't consistent. This happened over a year period. I do have a nebulizer that I can use if I feel I need it.

Years ago I was dx with Asthma because I've always gotten short of breath with exertion (exertion asthma.) However inhalers never seemed to fix the problem. Duh, hindsight again. I was short of breath in high school also. Especially when playing basketball in my Jr and Sr years. I could not run down the court without getting out of breath.

Hope I haven't rambled too much and you can make sense of all this. I'm happy to answer any questions for you.

Thanks for being here.

[annekat]

Hi Anna, Thanks for the wonderful welcome and responding to my post. I was never put on meds in 72 as they followed me via xray's and CT's and saw very little change. They knew very little about this disease back then as I'm sure you're aware. Thank goodness there was no Google back then or I would surely have scared myself silly. Thank goodness you don't have the lung problems although I'm sure the other issues are no picnic either. Hate the sinus stuff. I live for Mucinex to thin out the mucus so I don't choke.

I was actually dx'd at Madigan Army Hospital in Tacoma. Small world isn't it. I lived in Washington for 17 years. Still love and miss it up there.

Take care, Yep, small world! Seems strange that you were dx'ed and got no treatment and things didn't get worse until so much later. But then many of us have "smoldered" for years before Wegs hitting us big time. It took the lungs getting into the picture for me to get the dx; they CT scanned the lungs and found cavitary lesions, but they didn't have to biopsy them because they got a dx via nasal biopsy. Your additional reply to Phil is interesting, as it shows what all could still happen. I've had a few breathing issues throughout my life, but none that severe by comparison. As for the sinus stuff, yeah, it's mainly the damage to the sinuses that keeps the mucus accumulating and crusting, even when disease activity has slowed way down. I used to use a lot of Mucinex and eventually stopped... maybe I should try it again and see if it helps me get the stuff flowing a little better.

Anyway, again, glad you are here, if you have to be going through this. Phil mentioned RTX, the drug that has become preferred over CTX in many cases, and I too am wondering if your docs have considered that. I have not taken it myself, but many on here have. In any case, I'm hoping for the best possible outcome for all this, and continue to keep us posted.

[pberggren1]

You are most welcome Cindy. You sure have been through a lot over the years. In 2010 I was diagnosed with Mycobacterium Abscessus Lung Disease. It almost killed me. At first they thought is was TB but a few weeks later they found out it was the M. Abscessus.

[Alysia]

Hi Cindy,
I don't know much about the issues you are dealing with, I just want to welcome you.
I think you are the most "veteran" weggie around. 40 years, wow.
if you survived all this years, with not much symptoms, I hope that it means that your wg is mild and can be under control quickly. I hope you can find the right treatment asap and feel well.
I had 2 rounds of rtx already and I can tell that this med is a miracle.
good luck and update us.

[windchime]

Anne, I use the Mucinex 1200 mg w/o the decongestant. It currently does a good job of thinning the mucus so I'm not choking on it. Yes I was blessed to be mostly asymptomatic throughout the years. I certainly look forward to feeling better eventually.

[windchime]

Phil, I remember reading about the TB scare in an old post. I dont know which was worse the TB or what you actually had. Glad you recovered from it.

Are they dilating the same place each time? Have they ever used a stent?

[windchime]

Alysia, Thank you for your welcome. As I told Anne I've been blessed to have had so many asymptomatic years. I'm hoping this is just a little blip in my journey through life. Albeit a scary blip but blip none the less. :wink1:

[annekat]

Anne, I use the Mucinex 1200 mg w/o the decongestant. It currently does a good job of thinning the mucus so I'm not choking on it. Yes I was blessed to be mostly asymptomatic throughout the years. I certainly look forward to feeling better eventually. When I used it, I didn't use the one with the decongestant either. I think I was using the 1200mg. twice a day, don't remember for sure. Eventually I started picking up small bottles of generic from the dollar store, which were only 400mg. but were a good deal, just had to think about taking it more often. I'm not sure why I stopped, I guess my problems improved.... it is all a big blur. Might pick up some more and try it again, as I'm finding in the colder weather, the dryness is making things crust more. I should also make more of an effort to use sprays and gels that would keep things moister. I guess you don't have much of a problem with winter weather in FL, and here, it is nowhere near as cold as some places, as you know, but I can still tell a difference in the winter.

[pberggren1]

Cindy, I might have to try that mucinex. I have a lot of sticky mucus that is hart to get out at the bottom of the nasal passages right where it starts at the larynx. Maybe the mucinex might help this not even form there.

I think the M. Abscessus was much worse than TB. Apparently there are just over 200 cases of it documented world wide.

I have never had any stents put in. Have you? I think he dilates the same areas each time, yes.

[COWG]

Hi Cindy,

I am also new to this forum. My husband Rick has WG, and has Bronchial Stenosis, which has effected him that last year. He was diagnosed 12 yrs. ago and hadn't had any previous lung problems. He is also seeing an Interventional Pulmologist and is also doing the balloon dialations. The Dr. told us in our dry Colorado climate that the stints don't do as well.
Keep in touch with your health and treatment updates. Phil, on this forum, was the first person we "met" that also had WG w/ Bronchial Stenosis...so that has helped us. Hopefully we all can help each other.

[windchime]

For those in dry winter climates try to keep a humidifier going. My CPAP has a humidifier on it and this week about three hours after going to sleep I wake up and I'm able to cough up all kinds of stuff rather than the dry hacking cough I've had all week. Breathing is a bit easier today, but I had a good cough session at 330 this morning. :thumbsup: I also use Dymista nasal spray. Started earlier this year. Jury is out on that since nothing seems to help my sinuses. But it is an Antihistamine and a steroid I believe. Don't quote me on that one.

The Doc thought he might put a stent in, but I think the bloody mess he found kept him from it. They only leave it in for 30-60 days to allow the scar tissue to grow then remove it. There is some kind of salt/saline thing you have to do during this time. Didn't pay much attention since I didn't get the stent. Phil since he is dilating the same area each time ask him about the stent. It might be beneficial for you.

Although the winters down here don't get as cold as up north, we do lose a lot of our humidity in the winter.

I have to say that I'm as scared right now as I was when I was 20 years old finding I had a mostly fatal disease (at that time.) Being more mature now, I hope, I have a different perspective on my own mortality than I did at 20.

Nice to meet you COWG. Good luck to your husband.

[pberggren1]

He said a stent is the last resort for someone like me. It will just create more scar tissue in that area at both ends of the stent and then the cutting process begins. Once cutting starts it is almost impossible to stop. I also admit I am scared at times. I think of death daily now, many times a day. Death of course is a good thing, but it is hard to see our loved ones pass on.

[annekat]

It is hard to think of the effect our passing on would have on those loved ones we would leave behind. Cindy, I think you have less to be scared of now that the treatments are better and many Weggies are living normal lifespans. I do realize though that you and Phil, and COWG's husband, have complications most of us don't, so I do have more respect for what you are going through than say, what I'm going through.

[windchime]

Yes our mortality certainly does come to the forefront of our minds during times like now. As I previously stated I haven't talked to my doc much about meds other than the pred I'm on. However I did express concern about the serious side effects of the meds. He said, "well the side effect of WG is death." Kinda put it all in perspective for me. A scary perspective.

Sorry to hear a stent won't work for you. Cutting is hard if you are very vascular in your lungs also.

[annekat]

Cindy, I might have to try that mucinex. I have a lot of sticky mucus that is hart to get out at the bottom of the nasal passages right where it starts at the larynx. Maybe the mucinex might help this not even form there.
Phil, the active ingredient in Mucinex is guaifenesin, which comes from a tree bark. As far as I can tell from research, and from my own experience, it is non-habit forming, has no side effects, and is not harmful in any way. I do remember reading that it works a lot better if you drink plenty of water, but you probably do that anyway. My ENT had me on it from day one at the start of all my ear and sinus issues, way before he ever knew I had Wegs. I felt it helped the mucus flow and was pretty diligent about it. At some point I got tired of buying it and thought I was enough better that I didn't need it so much. I seem to do OK without it now. If you don't notice any difference at first, I'd say stick with it since it is easy to use and has no issues, and I hope you will start noticing some improvement. As Cindy said, be sure to get the one without the decongestant added.

[windchime]

Your situation is probably still scary for you. Yes the txs have definitely come a long way. Thank the Lord. I've always lived by the saying, "If the Lord brought me to it, the Lord will get me through it." This is just a harsher test than any recent ones. I'm a survivor. :biggrin1:

[annekat]

Yes our mortality certainly does come to the forefront of our minds during times like now. As I previously stated I haven't talked to my doc much about meds other than the pred I'm on. However I did express concern about the serious side effects of the meds. He said, "well the side effect of WG is death." Kinda put it all in perspective for me. A scary perspective.

Sorry to hear a stent won't work for you. Cutting is hard if you are very vascular in your lungs also. I think you will be justified in feeling a lot safer and less afraid if you are able to get on some serious Wegs drugs, aside from just the pred, and soon. Most of us have been very thankful for these drugs and have been able to tolerate the side effects. In my case, I got used to the CTX quite soon and always made sure to drink lots and lots of water to counteract damage to the bladder. Overall, I'm glad I took it. RTX is the drug of choice now for severe cases and many on here have shared their positive experiences with it.

[windchime]

I think you will be justified in feeling a lot safer and less afraid if you are able to get on some serious Wegs drugs, aside from just the pred, and soon. Most of us have been very thankful for these drugs and have been able to tolerate the side effects. In my case, I got used to the CTX quite soon and always made sure to drink lots and lots of water to counteract damage to the bladder. Overall, I'm glad I took it. RTX is the drug of choice now for severe cases and many on here have shared their positive experiences with it.

I'm not sure, but I think the doc is waiting for the second opinion to come back. He said that could take 5-6 weeks. So it's one day at a time. I agree with you I will rest easier once tx has begun.

I forgot that I also had some granular tissue show up in my spleen, this was seen in an abdominal CT. Has anyone had it show up there? Thinking I need to make my yearly appt with my urologist just to put him on notice and check on the kidneys. *sigh*

[Alysia]

I have to say that I'm as scared right now as I was when I was 20 years old finding I had a mostly fatal disease (at that time.) Being more mature now, I hope, I have a different perspective on my own mortality than I did at 20.


Hi Cindy,
you avatar is beautiful. I love it.
today the treatment to wg is much more advance then it was b4. so I believe that you will soon be ok. I am sending you my praying :hug2:

[Alysia]

He said a stent is the last resort for someone like me. It will just create more scar tissue in that area at both ends of the stent and then the cutting process begins. Once cutting starts it is almost impossible to stop. I also admit I am scared at times. I think of death daily now, many times a day. Death of course is a good thing, but it is hard to see our loved ones pass on.

Dear Phil,
you have already being through dangerous conditions, rare ones, and survived. you are strong and you will be just fine. God love you and protect you.
this one need a special hug

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