Still Waiting Diagnosis Confirmation

[witzend2]

Hi all, this is the first time Im posting to this group. Im still waiting (since Feb 09) for an actual diagnosis. After excrutiating abdominal pains and fever that wouldnt go away i brought myself to the ER. I was admitted for 10 days with no true diagnosis. I was on disability and back and forth to doctors with such varied symptoms such as fever (that never goes away, but is constantly low grade), the abdominal pain, weight gain, burning eyes, migranes and sinus problems (drs just said it was allergies though nothing helped), lethargy, shortness of breath, weakness, just no energy, night sweats and the list goes on.

In april I was diagnosed with Graves Disease (another auto-immune disease) whose symptoms mirror WG. Still experiencing the FUO (fever of unknown origin) I was again admitted to the hospital again in June where they repeated a CT Abdomen. This time, the drs found something strange by fluke in my lungs. They followed that up with a CT Chest and confirmed reticular-nodular granuloma (or as they called it connect the dots in laymens terms). I went to a pulmonologist who did a Bronchoscopy and blood work. After waiting for abt 4 wks for the reuslts of that culture I went into his office and he told me I have a Positive C-Anca which points to Limited WG (no kidneys problems thus far).

Last week I had the Open Lung Biopsy done. Still waiting for results on that. Seems the hospital I had it done at said its intestitial lung disease and my drs had the sample sent to Johns Hopkins for more thorough testing. He didnt believe the hospitals findings and felt it would be best to send the sample to the experts. I had some complications from the open lung biopsy, no have a low pulse-ox, came home after a week in the hospital on oxygen as a result. I dont want this to be the confirmed disease, but its better than not being treated for anything. From what I understand this is whats causing all my problems. Some joint pain, heart palpatations, etc. Im just hoping for the diagnosis to be confirmed now so I can get started on treatment before it progresses any further.

Sorry for being so long winded, its just that Ive been sick since Feb and it feels like a diagnosis will never come. Those closest to me seem to think Im making it up and milking it all cuz they say I look fine. This is hard enough to handle let alone when when no one believes Im even sick, well that was until the lung biopsy. Everything kept coming back normal like white cell count etc. Now the CTs done in early June at least proved its not my imagination.

Im hoping this group brings me the support Im definately not getting from those that are supposed to care.

Oh almost forgot.. my name is Marcy and I live NJ down the shore in northern Ocean County. If anyone knows of a rheumalotogist with experience treating WG in my area please share.

[Doug]

I hope you get a firm diagnosis, too. The information you note does point to WG. There are times you won't look ill, and may even be basically "normal". WG is for life, and for life you will be more susceptable to infections, the possibility of flares, the problems that come from medications. Welcome to the forum, though, and feel good that Johns Hopkins will be involved in your case because it ranks in the top tire of institutions caring for weggies!

[crackers]

hi marcy.looking well and feeling the exact opposite is one of the more frustrating aspects of this disease.i'm sorry you're not getting the support you need from those around you as this was so important to me when i first started with WG.as one who never had sick leave in 20 years and never complained when i had flu or a cold they took it seriously when i started feeling ill.it was my wife who literally dragged me to the doctors at the outset.hopefully you will get a diagnosis quickly and get the treatment you need to start feeling better.a few years ago an animal charity here in the uk ran a campaign to stop people giving pups as gifts at christmas only for them to be abandoned later as the novelty wore off.the slogan was "a dog is for life not just for christmas".the same sentiment applies to WG.those around you need to understand this.
john.

[Sangye]

Hi Marcy,
I'm happy you found our group!

Waiting 4 weeks to say your ANCA was (+) is ridiculous. The test takes 4 DAYS to come back. Same for blood cultures. I'm very glad they sent your path samples to JHU. Hopefully you'll get a firm diagnosis one way or the other. If you do need a rheumy on board, please consider either traveling to JHU or at a minimum getting a VF doc to consult with a local rheumy. I think right now you have to wait for a diagnosis from JH to know how to proceed.

We all understand the "I don't want it to be Wegs, but I so want a diagnosis," and the "You don't look sick" part!!! With Wegs you can be near-death and still look pretty normal. When I was in JHU hospital last month, even the regular rheumys said it couldn't be a Wegs flare because I "looked too good." My Wegs specialist there groaned when he heard that. Only Weggies and Wegs specialists really know.

[Jack]

During my first stay in hospital following diagnosis I soon felt that I was the fittest person on the ward. Not really understanding anything about the disease, I could not figure out why they would not allow me to go home. :confused:
I now know that my body was falling apart on the inside and it was only the drugs that were keeping me upright!

[witzend2]

Thanks to all for the warm welcome. Sangye, let me clarify... I knew they took blood when the bronchoscopy was scheduled. The doctor waited 4 weeks for the culture to grow b4 having me back in the office cause the biopsy from the bronchoscopy showed nothing. Thats when he explained the (+) C-ANCA. I had never heard of and ANCA before, so Im guessing he was skeptical enuf to run the test.

I would willingly travel to JHU but it seems that my insurance doesnt cover doctors in Maryland. I started checking yesterday afterf reading other threads here that mention the names of some doctors. Im gonna have to call the ins company for confirmation on that though. You mentioned a VF doc.. not sure what you mean, please clarify.

What scares me is I have had frequent fevers for quite a while, long before Feb and now Im wondering if its related at all. Also have had freqent sinus infections over the years. Maybe its all just a coincidence.

Im no longer waiting on my dr though to tell me whats going on, I took it upon myself yesterday to call JHU and make sure they have my samples and maybe get an answer from them, but I doubt they will give it to me. At least this way I'll know when to start calling my dr.

[Sangye]

Wow, Marcy, I'm so proud of you for taking this into your own hands. Very important and very difficult to get someone to do! They probably won't tell you the result, but they must tell you if it's been sent to your doc, etc....

Thank you for clarifying the delay in your ANCA result. I'll stop wagging my finger at your doc now. :o

Your frequent sinus infections and fever sure sounds like classic Wegs, now having progressed into your lungs. You are right to take this seriously and hit the ground running.

VF is Vasculitis Foundation (http://www.vasculitisfoundation.org/node/44). There are many vasculitis specialists who consult with local docs and guide patient care. They never charge for it, so insurance doesn't need to be involved. Many people travel to a large center like JH for initial diagnosis/ treatment plan and return maybe once a year for follow-up. That doc works with their local doc the rest of the time to carry out the recommended treatment.

If insurance coverage is a problem and you get a dx like Wegs, you can ask your local doc to write an appeal that you need to be seen by a Wegs specialist, not just a rheumy.

[witzend2]

I feel like this has been going on since the beginning of June and that CT Scan that showed a lung abnormality. The end of June was the bronchoscopy, 4 wks to see if anything grew from the culture, the ANCA findings... the wait for the open lung biopsy and now 2 weeks later and still waiting so almost 3 months to diagnose since finding the lung abnormalities. Seems too much. At least my pulmonologist knew to check for Wegs. I guess I have to give him some credit. There dont seem to be many rheumy's here that are in my insurance, but I'll have to keep searching and call the ins. company abt a specialist visit at JHU. I figure if I dont push these ppl (drs, pathologists, etc) no one will.

[Sangye]

I figure if I dont push these ppl (drs, pathologists, etc) no one will.
You're absolutely right. No one will take your health as seriously as you do. Even the best doctors have many other patients to care for with limited time, so days turn into weeks and months.

[Luce]

I too was the same as Jack - in hospital I was originally put on an acute lung ward and my fellow patients were all ladies who had all seen at least their 60th birthday, some quite a few more.
I felt so well, except for a cough and flu-like symptoms that I felt like a bit of a fraud and would look after the others by making cups of tea, refilling water jugs and plumping up pillows.

Seems so silly now that I was busying myself while my lungs and kidneys were silently packing up, but that's the Wegs effect for you.

[Sangye]

Luce, you are such a kind person. I'm smiling just picturing you plumping pillows and serving tea. Maybe it was that very kindness that boomeranged back and kept you alive? :rolleyes:

[witzend2]

Funny because sick as Ive been, I felt like I didnt belong in the hospital the 3 times Ive been in. Well except for this last time of course since I had the open lung biopsy and complications that kept me in for a week.

Is it normal to be sent home with oxygen? The one thing that I cant get to add up though is that in Feb when I went to the ER it was because I thought it was my appendix. They treated me for diverticulitis (which it wasnt) kept me in for 10 days and found nothing though tons of tests were done. It all seemed to spiral out of control with the fever, the shortness of breath, the palpatations, the dizziness, weakness and fatigue. So I guess Im just trying to figure out how all this began when I thought it was my appendix. Unless that pain was just intensified as a result of the graves and wegs?

[Sangye]

I was on oxygen at home for 19 months. It's necessary if your oxygen saturation level is too low. Basically, unless they have a reason to keep you in the hospital, they send you home. Reasons for keeping you are that you need a treatment or procedure that requires hospitalization, or they need to observe you for a period of time to make sure you're stable.

If you do have Wegs, a specialist will be able to connect the dots for you on what has happened. Wegs can affect the GI tract (or any organ), but it's less common. Did you take a lot of antibiotics for all those sinus infections? How about OTC drugs for fevers? Any of those can cause abdominal problems, and it isn't necessarily evident right away.

[witzend2]

I was on antibiotics in the past and that didnt always work and did take tylenol sinus (and continue to when necessary). They ended up diagnosing the GI stuff as a spastic colon... but nothing more. I only take advil or tylenol for the fever and not unless it goes over 102. I have taken excedrin pms to help me sleep though cause I definately have trouble sleeping.

I am so glad I found this group, you are all such a wealth of knowledge and its comforting to know im not alone and its not all in my head.

Its still upsetting though cause my b/f seems to think though he hasnt really said so, that Im exaggerating. He claims that im the same as Ive been since february except of course for the incisions (from the open lung) and the oxygen. He doesnt understand why im not working though. I keep trying to explain that I just dont have the strength and get out of breath and exhausted just walking from one from in my apt to the next.

[Luce]

My partner and I nearly had a huge falling out in the weeks leading up to me being hospitalised. I would come from work and just flop out on the couch, it would take me a full 10 minutes to get back up again due to the pain in my knees. Then I couldn't decide what I wanted for dinner and generally stopped eating, leaving him to sort his own meals out. I'd cough constantly through the night, wake up several times drenched in sweat and disturb my partner so he felt like he hadn't had enough sleep to go to work the next day. He knew I wasn't well but thought as I did it was just a virus I couldn't shake and was milking the extreme fatigue to make him do more around the house.
He realises now just what I was going through but those 4 or 5 weeks were pretty tough on our relationship..

As for hospital I thought the doctors had made a teriible mistake and if they saw me acting so healthy they'd realise that I was taking up a bed a real sick person could be using. Also the elderly ladies wouldn't get many visitors and the nurses were incredibly busy so I thought they'd appreciate the company, and the nurses would be grateful that I was doing my bit. I felt like I should have been on the payroll or given a volunteer's badge and that I wasting resources by occupying a bed.

Even on the renal ward I felt so healthy compared to those awaiting transplants or having kidneys removed - the nurses once told me off for crawling under someone else's bed to retrieve her slippers for her. Well I did have a cannular in my hand and a catheter in my neck for the plasmapharesis at the time!

[Terri]

Hi Marcy,
I'm glad you found this site. Whether you have wegs or not you will find a world of info here and everyone trys to help.
I understand what you say about family not giving you much attention.
When I was diagnosed (Aug.07) after a 3 wk stay in the hospital, I had help around the house until I got back on my feet but as soon as I started to pick up on normal things that was it. Even today (especially today) my back is really bothering me but I look as if nothing is wrong and I have to ask for help.
Don't be ashamed to ask for help. Otherwise you will just hurt yourself trying to do everything alone. If you end up on high doses of Prednisone you will also need support for your mental stability. We all here know what that is like;)
I don't want to scare you . Just know that help is available and once you get diagnosed, things should go better for you.
Please keep us informed.

[Doug]

witzend2
Is it normal to be sent home with oxygen?


Pulse oximeter - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Pulse_oximeter)

You mention a pulmonologist and a lung biopsy, light-headedness, breathing issues. Read the article above. My guess is you had insufficient dissolved oxygen in your blood. Mind you that can also reflect other issues (anemia, for example), but some doctor felt your lungs needed a bit of help (to heal for example, once treatment began) or you wouldn't have been sent home on oxygen. It's a bit of a pain. Well, no, it's a big pain in the rump! Anyway, give it a chance, and your doctor or a respiratory therapist will tell you you are getting enough oxygen and will take you off the stuff!

[witzend2]

Terri / Luce - Thanks, it helps to know that Im not the only one that has those close to her not completely believing how sick I feel. I keep trying to explain it to the b/f and have told him about finding this forum and he said oh so your believing the crap you read online and its making your imagination go wild and making you worse. I cant seem to win, even when I attempt to help him understand.

I try to pick up normal llife again, but when I went with my son grocery shopping earlier today, even that was just too much. And what was worse was when we got home, i was trying to mix up a cake batter for him and was worn out. So, Im back in bed on the oxygen trying to breathe normally and relax. Its hard to not push myself.

Doug - Its definately the oxygen levels in my blood. That became the problem while in the hospital and while i was walking they had the pulse oximete attached to me to monitor the oxygen levels as I walked. I know thats why I was sent home with the O2 cause my levels with activity were at 84% and my understanding is its supposed to remain above 90%. Im still waiting for the respiratory therapist to come out and check my levels.

And yes, carrying the portable around is a pain in the rump... actually wonder if carrying that tank is adding to my exhaustion. I cant help but wonder whether I will ever feel any semblence of normal agin.

[Sangye]

Marcy, remembering that emotional exhaustion goes hand in hand with physical exhaustion, it's important to get the rest you need.

I've spent a LOT of time in therapy struggling with the same pain of others not believing or understanding what I'm going through. I've learned that endlessly trying to explain it to others, giving them examples, trying to prove it with test results, etc... will never work.

For a long time that realization made me more depressed! But as I worked with it (in therapy), I began to see :

1) What others think of me reflects them, not me. It doesn't mean they're a rotten person, it means they're incapable of understanding for whatever reason. Many people were never taken seriously as children or told to toughen up. So they wind up acting that out when others are weak around them.

2) When you give yourself the validation and compassion you want from others, you won't need it from others anymore. You'll be content, and you won't feel alone or isolated.

3) Watching someone deteriorate and/or suffer is terrifying. Few people know how to acknowledge their fear and deal with it. For most, they use familiar coping tools like distancing, denial, resorting to "busy-ness," anger, etc.... You may be the only one who is aware of that happening. Most people are completely in the dark, and just react.

I hope this helps you find a little peace. :)

[witzend2]

Sangye - Yes, that perspective does help quite a bit. And you are right on tartet... distancing denial and anger is what Im feeling most from him. You are also right about the emotional exhaustion and physical exhaustion. Hardest part is trying not to get depressed. But i cant help but be hurt and angry.

[Sangye]

It's normal to get depressed. No use pasting on a smiley face to try and fool yourself or anyone in your life. Underneath the anger is hurt. If you let yourself feel that hurt and give yourself a break--don't beat yourself up over feeling sad-- you'll be fine.

All my life whenever I heard people say "You need to love yourself," I never ever understood. It sounded narcissistic to me. One day I realized if I swap out the word "love" for "have compassion for" I totally get it. Compassion is love.

[Doug]

I hope what we have to tell you helps with the down parts of your days. It does go away in time, as your medications are adjusted down and you start to feel the healing take place. :)

You'll pardon the reference, but what your boyfriend needs is for your doctor to bitch slap him, and straighten him out on how serious your illness is. I would become very upset with him if I had to deal with that attitude and the uncertainty you have to deal with as well at this stage of your illness. That attitude definitely will bring you down if you let it, and it will make him of little use as a supporter at a time you need to have positive people around you, not to delude you, but to help you keep focused on getting well, to take on tasks you are too tired to do, etc.

Also, before I was put on oxygen, I knew the oxygen level in my blood was low when I couldn't remember the name of the doctor who did my lung biopsy. For me, 90% was the critical point. Less than that, and I became delusional, if entertaining. Ha! If indeed you have WG, which everything you've said so far suggests is true, then understand that you will feel tired until your vascular system heals.

Again, sorry about "bitch slap", but your boyfriend needs to get on your side, and grow up.

[witzend2]

No need to apologize Doug... "bitch slapping" is kind by comparison to the thoughts I have. He even has the nerve to ask why im so irritable. What makes it worse is my kids dont live with me and I have no family around. So its him or nothing. Thankfully my 16 yr old son is with me this weekend and truly a god send. Normally he is abt 40 min north of me living with his dad. My daughter is away at college, and doing what she has to do.

I am convinced that its WG, but the drs wont start the meds and im ok with that until confirmation is received from JHU. He was considering it, but decided the extra week or so wouldnt hurt. Just hope it doesnt take more than a week to get the results back.

Oh and tired is an understatement.

[Sangye]

I'm sure we were all thinking of similar terms, Doug! Too funny.

Help can come from many sources. You might be surprised. My family left within 3 months of me getting sick (this was not a new pattern for them). I had $25 in the bank and no way to buy my drugs much less feed myself or my animals. I couldn't stand long enough to brush my teeth.

I had a very good support network of friends, though. They rallied to my side from day one, protecting me from my family and caring for me. They organized themselves to help with housekeeping and cooking and even did fundraisers to help me cover my bills. The wife of a fellow chiropractor in town heard of my illness and that I couldn't work. I had never met her before, and had only met her husband once. She came over to help me one day, looked at me laying in bed half-dead (truly) and said, "I'm going to come every day and help you for as long as you need." She did and we became best friends.

Help will come to you somehow. I have no doubt about it. Every bit of help you give others comes back to you. It may not come in the form of your boyfriend, but it'll be there.

(And we totally know what you mean by tired. It's so far beyond what a regular person can understand about fatigue)

[witzend2]

I have to tell you all how grateful I am to have found all of you. Im back to being completely alone today. My son went back home to get ready for school starting this week. He helped me a great deal before he left, but im on my own again.

Think Im gonna be spending part of the day reading other posts on this forum and just trying to really see how, though we all have varied symptoms, we all suffer in similar ways.

Im finding the worst of my symptoms at the moment are the sinus congestion, the lightheadedness, shortness of breath, headaches, numbing and tingling in my extremities (hands, fingers, toes and feet), lack of energy, weakness and just plain tired. So far I dont have a problem with my joints as many of you seem to have (but I know im prone to arthritis in general from a hereditary perspective). Oh and lest I forget the fevers.

Im sorry if I keep repeating myself, its just so hard to accept all this and how no one ever put it all together until a fluke on a CT where they were looking for an abdominal issue and found lung problems. Mainly cause all other tests came back negative. Very frustrating.

Im going to be looking to this forum for the support I clearly dont receive in my daily life. I wish I could go back to work to get my mind off of this illness, but I cant hide from it and I really dont think I can commit to a 40 hour week to make the bills with my lack of energy.

The worst part of not working is that my career has been as a technical recruiter in the computer industry and it can be done remotely but my former employer went from being ok with that to firing me cause I couldnt get into the office. This is all so hard.

[Jack]

I think that specialists tend to develop tunnel vision and have trouble taking on board a range of symptoms affecting different organs. In the early days I visited several different departments at the same hospital and none of them put all the symptoms together as being caused by a single disease! It seems so obvious now.

On the subject of family support - I don't think many of us take the time to realise how much strain this disease puts on others. It ruins their lives too! My own wife left me for someone else after the first three years of total misery and I did not blame her. She was 30 years old and found some comfort elsewhere.
I asked her to come back a couple of years later when she was on her own again and my health was improving. My friends did not understand.

[Doug]

Witzend2-

You may have some legal recourse in the matter of being fired. If you can't do the job because it involves lifting 30 lb. bobbins of wire onto a braider deck all day, that's one thing, but a job like the one you had, (not knowing all particulars---) where the employer might have been able to make accommodations that allowed you to do the job, yet fired, you may fall under the Americans With Disabilities Law.

http://autoimmunedisease.suite101.com/article.cfm/changes_to_the_american_with_disabilities_act (http://autoimmunedisease.suite101.com/article.cfm/changes_to_the_american_with_disabilities_act)

The link above goes into a bit more detail. The latest changes to the ADA includes autoimmune disesases, for example. This link even gets into our Best Friend Forever, WG. If there is one thing that gets my idealism riled, it's a big guy picking on a little guy, especially if the little guy is dealing with a difficult illness.

[witzend2]

Doug, the only problem is that we didnt know at the end of May what I was dealing with. The employer demanded a letter from my doctor stating I would be in the office for a 40 hour week and no telecommuting w/o any further sick leave. Needless to say when I approached my doctor, though he wouldnt keep me on disability, he also wouldnt stipulate what they asked for.. and it took him 3 days to get back to me. But the delay in me trying to get the required drs note had them send me an email that I abandoned my job which was crap. I kept offering to work remotely as the drive was the worst part, that an being able to hold my head up. I'll definately read the article, but I dont see how it can help at this point.

[Sangye]

Marcy, it may help (good call, Doug). You probably only need to prove "due diligence" on your part. It isn't your fault if your doctor delayed getting back to you. Have you explained that to the doc? Maybe s/he could make it right at this point, if they knew what their inaction caused.

It's incredibly frustrating that it can take a long time to get Wegs diagnosed. Sometimes I read peoples' stories and want to go shake the doctors who missed it because it was textbook. Any doctor who misses lung + kidney involvement just didn't do their research at all.

But more often, Wegs presents as a collection of symptoms that don't seem related and can easily be attributed to other things or drug side effects. So until the Wegs progresses, there isn't anything that ties all the symptoms together. Patients see doctors all the time with long lists of symptoms. Most of the time those symptoms are due to several benign processes.

[witzend2]

Funny thing is (well not so funny), when i was in the hospital the day after my open lung, my primary dr (the one who refused to continue my disabilty saying there was nothing wrong with me other than the graves disease) stopped in to see me. I just looked at him a bit annoyed and said to him... "I told you there was something really wrong and it wasnt my imagination".. He of course tried to defend himself by saying he never said it was my imagination or that he didnt believe me. Needless to say, I believe he became insulted and I even feel as though I need to find a new pcp. So im in a bad position asking him for any kind of assistance. Its as though he wanted me off disability just to cover his own butt from a state disability perspective. Am I nuts? Or just overly sensitive and emotional

[Sangye]

I think you can salvage the relationship. It's worth it if he's a good doctor otherwise and certainly to get his cooperation with your job.

It's possible he's being honest with you-- that he really did believe you, but had no idea what to do.

Make an appointment to see him for follow-up. When you meet, explain that you want to clear the air and be honest with him about how terrified you are. Tell him how frightening it is to be sicker and sicker with no diagnosis, no treatment, and no end in sight. You can apologize for having been angry with him when he came to see you. (From his perspective, it was probably even more hurtful because he had taken time to come and check on you) Doctors know patients are under tremendous stress, especially when they get bad news and/or undergo difficult procedures. If you get the vibe that he really does care and was being honest, then tell him you understand when things are missed. He might be really beating up on himself for it.

Explain how this is impacting you at work-- that you're capable of working if you can do it from home, but you need his help for that to be approved. Explain what happened with the delay last time. Just ask, "Can you help me?" Unless he's a real jerk, I bet he'll make it right.

[jola57]

Marcy, I agree with Sangye. Go back to your doc and play upon the actual findings and symptoms that prevent you from making the commute to work or spending 8 hrs sitting in the office. 3/4 days turnaround getting back to patiens about certificates for work is not unheard of, usually employers do not fire you that quickly. As far as disability in Canada, there is a criteria that you have to fulfill before you can receive disability after checking, I would qualify only because of my neuropathy in my feet and my hearing loss. The fact that I am on chemo, prednisone does not make me eligible. The fact that my lungs are affected is not a reason because I do not need oxygen. Kidneys - only if you are on dialysis. Mostly the disability must have continued for the past 12 months. The qualification is very thourough and my doc would need to have supporting medical evidence such as my neuro test or hearing test if I ever wanted to go onto disability. I work full time and use a cane part time, when I feel tired, I simply shut my eyes for a few minutes. I don't know what your actual symptoms versus medical findings are but I suspect that US disability woud be similar in making sure that the symptoms have been there for a long time, that they need constant medical attention (in canada it is 4 hrs per day minimum) making it impossible for you to be at work full time. Your doc can't give you non specific findings as a reason to cut work, tiredness, taking medication, or even spitting blood is not enough. Dialysis, being on oxygen, going into hospital for chemo (not just taking it in a pill form like most of us do) limited mobility are necessary for disability.

[Doug]

Americans with Disabilities Act Amendments Act of 2008 (http://www.eeoc.gov/policy/adaaa.html)

The wording of the amendments to the law are in the attachment above. Without talking with a good attorney familiar with labor and disability issues, I don't think any of us can guess where we stand.

Looking at the new definitions, I wonder, too, if I fit the requirements for disability for Social Security now. The amendments became law on January 1, 2009; I retired January 31, 2009 ("retired", perhaps "'retired'"- the circumstances were ambiguous but generally friendly and mutually desirable, if financially less so).

[witzend2]

Part of why Im reluctant is because all this happened back during the last week of May. Ive been collecting unemployment since then along with the reduced COBRA that goes with that. I dont think I would get as much financially on disability nor do I think I can go back to a job I lost 3 months ago. Knowing the owner of the company as I do, and the other employees, thye would make it an extremely uncomfortable situation even if they were forced to take me back.

On another note, had the respiratory therapist here a little while ago.. thought she was going to e checking my pulse-ox but she was only checking the concentrator. She said there is no prescription to check it. Seemed very odd to me. She was only checking the equipment. Though she did notice how out of breath I was merely walking around my apt.

[Doug]

Part of why Im reluctant is because all this happened back during the last week of May. Ive been collecting unemployment since then along with the reduced COBRA that goes with that. I dont think I would get as much financially on disability nor do I think I can go back to a job I lost 3 months ago. Knowing the owner of the company as I do, and the other employees, thye would make it an extremely uncomfortable situation even if they were forced to take me back.

On another note, had the respiratory therapist here a little while ago.. thought she was going to e checking my pulse-ox but she was only checking the concentrator. She said there is no prescription to check it. Seemed very odd to me. She was only checking the equipment. Though she did notice how out of breath I was merely walking around my apt.

That is a very distinct issue: Returning victorious (?) only to have the stress of becoming the pariah of the office isn't in your best interests, either. Gad. Life gets so, so complicated! There is a legal issue to the in-office harrassment, too, but, again, how much can you be expected to go through!?

Your doctor writes the orders, but we already have an attitude about your doctor (I do, anyway.). It can't hurt to bring it up. How much (I'm afraid to ask....!) could checking your oxygen concentration added to your medical bills? Again, as a patient, it is your right to know the state of your health. Perhaps you could get a referral to as pulmonologist while you are at it.:confused:

[Sangye]

I don't know how people return to jobs when they've been unjustly fired, etc.... It must be horrible. I agree that that kind of stress is probably very bad for your illness (Wegs or not).

Regarding your home oxygen-- the law requires periodic visits from a respiratory therapist to monitor the equipment, make sure it meets your needs and is what the doctor ordered. They aren't permitted to render patient care, though, which means they can't check pulse-ox, etc.... To have that checked, you need to go to a doc appt since it's considered a diagnostic procedure.

[Doug]

That's good to know. I see the sense of it now, but wouldn't have guessed it!

[Sangye]

Me, neither. I only know it because I was on oxygen for so long.

Marcy, I was on all the types of home and transportable O2 there are. If you have any questions, just ask. There are many ways to make your life simpler.

[witzend2]

Thanks for all the advise.. Seems a diagnosis came in, but it makes no sense to me at all.. The results came back staying a bunch of stuff but not weggies. have an appt with the rheumy for thurs cause i still havent spoken to a doctor. i really hope to get some kind of clarification and treatment.. seems we still dont know exactly what it is cause they seem to be usuing the catch all phrase of interstitial pneumonia. Which makes no sense because of the positive C-ANCA... Im so confused and so frustrated.... and getting more and more depressed

[Sangye]

I don't blame you one bit for getting more depressed. It's been a long time, you're going downhill, and it sounds like the lung biopsy just put you over the edge physically. And not to get any answers after all that! Very discouraging. :(

I think a good way to go from here is to see what the rheumy has to say on Thursday. Ask him if he'll set up a consultation with a VF doc, since your insurance won't cover you going out of state. That way you can get an expert's opinion-- is it Wegs or not? And depending on that outcome, the VF doc can advise your doc on how to proceed, either with a presumption of Wegs or with other possible diagnoses.

[witzend2]

I feel so b ad to have taken up everyone's time here with the results saying interstitial pnemonia.. would rather it be wegs cause from all im reading this is basically fatal, no more than 12 years.. but i dont feel like im dying .. . I better stop researching on here, its making me worse emotionally

[Sangye]

You're not allowed to apologize for taking up our time. That's in the forum rule book on page.....hmm, seems I've misplaced my copy of the rule book. You'll have to send Andrew a postage-paid envelope and allow for 6-8 decades for delivery.... :rolleyes:

Whether or not you have Wegs, we all started caring about you the minute you posted. Everyone on here is happy to help.

Your results are not necessarily conclusive. And yes, please stop researching. Use your energy getting your case to the experts. Then let THEM do the diagnosing. You won't believe how skilled the real experts are. They've seen it all.

[Sangye]

I came across this article on CNN.com the other day. It might be the perfect one for you right now. How to get Kennedy-esque health care on your budget - CNN.com (http://www.cnn.com/2009/HEALTH/08/26/ted.kennedy.patient.lessons/)

[witzend2]

Thank you Sangye. I did find out that the Rheumy I have the appt with has weggie patients and does handle numerous vascilitus patients. So one way or another he should know. I hope.. Im just in such a bad place right now emotionally and that "person" that should be here, well we havent spoken since thursday and im not gonna beg him to care... would have thought he might have been in touch to see if results came in or not. but nothing. so im off to the rheumy on my own.. thinking of taking a tape recorder with me cause i doubt i'll remember much. do they allow that?

[Sangye]

Yes, they definitely allow that. To be polite, ask him if it's okay if you tape the conversation so that you don't have to take notes, and so you can listen to the answers again later and not have to call and ask for a repeat. You won't believe what info you miss when you listen again later!

I did all my appointments on my own and still do. You can do it. You're a tough cookie, I can tell. It's probably better to be sitting in that room alone with the doc than having someone with you who doesn't really want to be there. That would distract you and add stress. Focus on what you need right now-- answers and direction. Your health is what matters most right now. Everything else can wait to be addressed another time.

The rheumy may or may not be enough of an expert to know. My Mayo clinic doc had treated a lot more Wegs than my local docs, but he knew nothing compared to the JH experts. But at least you're going to see a rheumy, and you have pathology results that have been read by JHU. Just take one step at a time and don't go down the road emotionally.

[Sangye]

One last comment and then I'm off to bed. The first time I met my JHU hematologist, I was in horrible shape physically and emotionally. He had awful news for me. I was devastated and couldn't stop crying.

As I got up to leave I told him I just wanted to give up. He said, "No. You can't allow yourself that." Those words have held my chin up more times than I know. :)

[witzend2]

Ok guess i need to go out and get a cheap recorder. I have the appt with the pulmonologist on the 10th ( a week later) so another week of waiting. Just all so frustrating as ive said.

[Doug]

I came across this article on CNN.com the other day. It might be the perfect one for you right now. How to get Kennedy-esque health care on your budget - CNN.com (http://www.cnn.com/2009/HEALTH/08/26/ted.kennedy.patient.lessons/)

:) Just we keep saying on this forum- take charge of your own treatment! excellent article, Sangye!

[Doug]

Ok guess i need to go out and get a cheap recorder. I have the appt with the pulmonologist on the 10th ( a week later) so another week of waiting. Just all so frustrating as ive said.

Whatever the outcome, whatever you learn you have, we are lucky to have a chance to help you find the way! WG isn't the only disease that is difficult to pin down, and it should be of help to this forum to learn some of the vicissitudes of people like you who go through several rings of hell to get to the one where a doctor can tell you just what you are fighting. Don't ever think you are wasting our time! Your circumstances have brought up some new issues on this forum, ones we need to understand a bit more clearly for future reference, I think.