new member amy

[amy.r.kahl]

Hello fellow WG

This is the first time I'm actually doing anything like this. I've been embarrassed about being sick. I was a nurse and it definitely has changed my life. I spent the whole summer in the hospital here in cape Girardeau mo with lung nodules they didn't know what it was and put me in isolation for over 18 days it was horrible. They finally did a lung biopsy and sent it to the Mayo clinic who diagnosed me with WG. The doctors then transferred me to Barnes to Dr. Parks who then did her own testing and finally agreed with the Mayo clinic. For my 26th bday I started my first round of chemotherapy cytoxin which made my bladder bleed so that was about a month meanwhile she increased my dosage of prednisone from 20mg upto 60mg as well as starting me on imuran which affected my kidney function after a week I couldn't void it was horrible. And the prednisone completely made me a different person it changed my personality I was angry all the time. I hated God. And I was angry at my family cuz I'm the baby and spoiled and was used to being protected and then being able to make it better. My mom is a nurse as well so this has been hard on her. But I completely changed I went into s downward spiral I hated everything and everyone for taking everything I worked for I went from being in charge of everything in my life to having no say. While on prednisone I broke the law I was writing bad checks and I got into trouble and got put on probation. That didn't wake me up I was still angry with God and didn't care about living anymore. So I continued my self-destructive ways and ended up in prison. While destroying myself the doc put me on rituxan it helped my lungs I no longer needed my oxygen tank it's only prn now. When I went to prison they took me off all my meds and my anger and hate levels went down. I had night terrors coming off the steroids. And my moon face went away and the 80lbs I gained went down I've lost 30lbs I'm still working on the other 50. But I no longer hate God and I've began to accept being sick. I felt like I could finally see and think clearly and normally after being off the prednisone. The physiologist said I had a serve bad reaction to the medication. I will never take it again I even want to advocate for infants being tested at birth for autoimmune diseases. I feel knowing at the beginning would have prevented a lot of my pain. And if I can help prevent others from the pain I will. Anyways I am now having serve sinus infections and my ENT a wonderful dr. He believes it's the WG. However my rheum dr believes I only have WG in my lungs and has only given me 3 dosages of rituxan and does not seem to have a treatment plan for me. She says that there are no treatment plans for ppl with WG because it's so rare. So I'm thinking I need a specialist because she doesn't want to listen to my concerns or my ents concerns. I feel she treats me differently bc I went to prison my other doctors know and they are understanding and I go to therapy and I'm in s better state of mind but I she makes comments like I've never had the cops call me like she was embarrassed that a patient of hers was in jail. She is the head of the dept but when I was in nursing school I as taught and promised to help even a murderer without judgement. I have paid for my mistakes. But I also feel she should have noticed my irrational behavior I would throw med students out of the room and scream at them. I was horrible. She will now admit to me not being suitable for prednisone but it took me completely losing my mind and myself and another doctor telling her that. I have a hard time meeting new doctors I have trust issues because I had so many of them come and look at me like a lab rat when I was in the hospital. I feel I should get a second opinion from a specialist but I'm just scared that they will be worse. So I guess I'm asking if I should stay with her or go to a new doctor ???

Thanks

Amy



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[Pete]

Welcome Amy,

Wow!! You've had a wild ride with our dumb disease. Reading your post, it seems you obviously need a GPA/Wegener's specialist. You can find one fairly near you at the Vasculitis Foundation's website. Many of us have to go some distance to see such a specialist. If you can't get to them, your local doctor should consult with one. The big Vasculitis centers in the Midwest are at Mayo Clinic and Cleveland Clinic.

Good luck and better health!

[Eric54]

Welcome Amy. We all have a story and a past. Yes, you should find a specialist. My nephrologist was initially managing my care for wg and it went bad quickly. I finally found a specialist and things are getting better.

Take care,
E.


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[me2]

Amy Welcome,
You certainly have been through a lot. I can understand your issues with doctors. The suggestions made so far are good ones. Find a specialist. The Vasculitis Foundation web site is a good place to start. If you need more help with that just let us know.
I'm thinking that someone more familiar with WG and high dose prednisone would have better at seeing what was happening to you and been able to help you better.

Its a risk finding a new doc but I think a very worth while risk. Almost every single person here has had to leave some old docs behind to find ones more knowledgable and with more WG experience.
You know when someone is understanding your situation and helping you and when they are not. Don't stop looking until you find a doc that is giving you the care you need.

I understand some of the misgivings you might have about looking for another doc. I know when I had to change docs last time I was concerned that my old doc would be upset and my new doc , who worked with him, would see me as a complainer or something.

None of these things turned out to be true. My old doc wasn't insulted and my new doc, his colleague, has given me good treatment. Changing docs is common and the good ones do not take it personally.

You have been through so much I hope you have the means to see a psychologist. I have been seeing one for a couple of years and his help is as valuable to me as a medical doc. I too suffered a great deal from the disease and the medications. I too damaged relationships because of this. I have needed help in dealing with this part of the disease and treatment.

You don't have to be embarressed about being sick here. There are nothing but kind and sympathetic souls here trying to help each other.

To me, it sounds like your ENT is the one to listen to about your sinuses. Sinus involvement is extremely common with WG. It is extremely unlikely that you would have airway involvement ( like you do) and not have sinus involvement too. An ENT is more qualified to identify your sinus problem than the Rhuemy is. The Rhuemy should be listening to the ENT.

Keep us posted Amy

[annekat]

Hi, Amy. The others have given you good advice, so I mainly want to say, welcome to the forum, and we are glad you are here. I would just add to what was said above, it makes no sense that your rheumy doesn't think your sinus issues are WG related when your ENT does. A biopsy of the nasal area might prove it, but you are already diagnosed, so that shouldn't be necessary. There are rheumies who understand WG and those who don't, and you need one who does. Other than that, I hope joining this forum will do for you what it has done for me and many of us, offering support and friendship on a daily basis, helping us to feel a lot less alone with "our dumb disease", as Pete calls it, which I like. We are not judgemental about your past mistakes, especially knowing that they were prednisone related, which we can understand, many of us having experienced "pred rage" occasionally ourselves. You are welcome to rant and vent on here, as well as to ask any questions and participate in any discussions. I look forward to hearing more from you and hope to hear that you found a rheumatologist you are comfortable with. I wonder if your ENT could help you find a good one.

[mishb]

Hi Amy and welcome.

I'm so glad you finally found this forum and hopefully you can get the help you need.
Everyone above has such knowledge of the medical system and WG itself and have given some great advice.

I am still shaking my head that your doctor said there is no treatment plan for people with WG

Please keep us posted as you find a new specialist and better health

[kaysee]

Welcome to the forum Amy,
We are all hear to listen and help in any way we can. We have all experienced our own "crazy things" with this dumb disease. Some more than others. Keep looking for the right doctors for you - but find ones who know Wegeners. Every person is different and needs a different treatment.

Karen