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Thread: Me Too!

  1. #1
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    Default Me Too!

    I had been feeling unwell for sometime and went to my semi annual doctors checkup. I had the usual bloodwork done and to my shock got a a phone call from his office to report to the Emergency Room! Renal failure! Am now on dialysis and adjusting to this new situation. Looking back and learning more about Wegener's it is frustrating to realize how easy it is for doctors and patients to miss the warning signs of this disease.

    Item- A little over a year prior to diagnosis I had gone to my doctor complaining of a rash on my ankle and calf. He sent me to a dermatologist but I was seen by a nurse practitioner . She said it was 'hives' and gave me a topical corticosteroid that seemed to clear it up except a new more persistant rash developed behind one ear on my scalp. No big deal I thought. My mom had psoriasis so maybe that was what it was but out of sight out of mind.

    Item- In late 2014 my routinie doctor exam led him to question me if I might be diabetic based on my blood sample. Whatever it was he had seen in that blood sample that caused his concern cleared up and as I was not overweight or showing any other indicators of diabetes it too was ignored.

    Item- In April of 2015 my doctors exam was normal

    Item- By October 2015 I had noticed my urine had begun to turn an amber color and I had no energy. My leg joints were sore and walking more than 100 meters became difficult. I was scheduled for my 6 month checkup but by then it was too late. I only had 9% kidney function left. I spent most of November in the hospital getting treated for end stage renal failure and, as I told my doctor, I may have lost lost 25 pounds in the hospital but I felt like a weighed 500 pounds now and, while still ambulatory, my ability to do anything strenous or walk more than a few hundred feet without becoming exhausted is my new reality.

    Question for those here. I am being put on the kidney transplant by my nephrologist but am curious if Wegener's disease patients are considered 'good' candidates for transplants owing to possibility of the disease reoccurring and the risk immuno suppressant drugs pose. I had to spend a week in intensive care after becoming 'neutrophinic? in January as a result of taking cyctoxan. BTW I am 64, male and live in Sarasota, Florida. I am retired but had to sell my boat and curtail my other activities due to my current health problem.

  2. #2
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    Hi Sangell. Have you been actually dxed with wg ? What meds are they giving you ? Have you had any rtx infusions ? I'm asking since in April you were fine then in Oct. all hell breaks loose ( sorry for the language ) But they should have caught it earlier if they were doing reg. monthly urine and blood work . Do you have a dr. that is in expert with wg ? Sorry for all the questions ,just trying to figure out why thing went so bad and why they only do the bloodwork twice a year.
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #3
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    What a terrible time you've had! I hope you, or your doctors, have consulted with a vasculitis center - list available at Vasculitis Foundation
    If not, going forward you really should consider doing so. There are far less toxic treatments for Wegener's that as just as effective as cytoxan, so I imagine that should ease concerns about future treatments, if needed, after a transplant.

    You might also find the recent NYTimes article informative: http://www.nytimes.com/2016/03/10/he...tml?ref=health
    I don't know if this is experimental and what the insurance companies cover.

    Wishing you all the best.

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    Yes, I was diagnosed with Wegerners/GPA after I was admitted to the hospital AND after the butchers in the ER for unknown reasons stuck a catheter down my urinary tract and got my bladder bleeding. Off topic but avoid Emergency Rooms, the folks in there can kill you out of ignorance . I have had one bladder operation already and must have another on my urinary tract in April and both were fine until the ER nurses went to 'work' on me!

    I had no symptoms, or none that my primary care physician ( an internist) recognized as wegeners prior to the blood work done that indicated renal failure. Its not a common disease apparently and there is no 'test' for it. In my case the diagnosis came after a biopsy was done on my kidneys. I was put on IV Cytotoxan, predinosone and Bactrin while in hospital but after two months was told to discontinue all after my immune system collapsed and I was put back in hospital and given 'granex' injections to build my immune system back. My nephrologists were going to put me on MTX but as of now I am only taking a phosphate binder and eating a renal diet. When you are on dialysis they monitor your blood closely as that was how I ended up back in the hospital. The nephrologist got the lab report and realized I was meutropenic and told to go back to the ER! after dialysis. Again I warn you- avoid the ER if at all possible. I was put on a bed in the hallway and when I pointed out that an ER was about the worst possible place to be for someone in danger of dying from any infection the nurse agreed and ran off to find a doctor. Meanwhile another comes in and inserts and IV and starts a saline solution. I ask is that good idea for a person with renal failure as my liquid intake must be limited? She runs off then comes back and disconnects the IV!

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    Greetings Sangell!
    Welcome to the World of Wegener's. Sorry to hear about your kidneys--I too wasn't diagnosed until in complete renal failure. I wasn't given cytoxin as Mayo clinic said the only reason to give that treatment was to save kidneys--too late for that. I was on dialysis for 10 months and was given a living donor kidney transplant. My transplant has lasted 16 years and now I am listed for a second transplant. So--to answer your question, you should be transplant eligible!! The immunosuppressive meds you need for a transplant can also help keep your Wegener's under control. I did very well until the past few years when my kidney function fell below 25%. But then I was given Rituxan infusions--which my transplant nephrologist was fine with as that can also be used as a transplant immunosupression treatment. When you have a functioning kidney, if you are on prednisone (steroid), that too can help keep your kidney happy although there are other nasty side effects to enjoy. As for dialysis, follow your renal diet and fluid restrictions very well closely and your dialysis sessions will be easier than if you don't. As you learned, be your own health advocate--always ask what meds you are being given and why. Make sure that you are not taking anything that is filtered through your kidneys--only your liver. ( for you, Tylonol is good, Advil and all other pain killers would be bad.) Please make sure your dialysis nurses are wearing their masks and gloves when they are connecting/disconnecting you--some units are not good with this. Always wash your hands after leaving the dialysis unit--I picked up some nasty infections! Feel free to ask questions--there are always people here who can help and support you!
    jen

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    Wow,both of you have been through the wringer with your kidneys. I,knock on wood, have not any kidney issues so I could not reply on the questions you had but Jen sure did ! Sorry you both have had to go through this.
    Sangel, I agree with you about the e.r. Where I live it is a waste of time and money and in the end they just give you something you don't need and send you on your way.
    Hope all goes well with you and you are able to get a transplant soon.......
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Sangell, wow, im sorry for all youve been through. I hear you on the er, i guess when youve almost died there, it leaves a pretty horendouse taste in the mouth... Im so terrified now of the er, and when people here what happened to me, many years back, they kinda get it... My urine is the color amber, but my doctor is monitoring it? Been showing protein and off color for almost four years... Things change so fast with wegeners, and i have to keep reminding my primary doctor of this, cause she has no clue... She's a semi good doctor, and I'm established with her and haven't had better, so don't want to change again! Just wish she was willing to treat? I don't fault her to much, because the things they put on the internet are horrifying... Before all this, kidneys were perfect. Crystal clear pee! Man, I miss that! Best to you, with all this... Debra...
    Live,love,and laugh...

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    Thanks Jen ( and all) for your reply and info.

    Good to know Wegener's is not disqualifying for a transplant and happy to hear you have had 16 years without dialysis from yours. Dialysis, if not fun, has not caused me any discomfort though as I look at the others receiving dialysis I can only hope I do not look so bad. The bad side is you become a prisoner to it. No vacations or travel out of the area and being on the coast in Florida if I didn't worry about hurricanes before ( my condo is well above sea level with hurricane shutters) I do now as where would I receive dialysis after a major hurricane? About the cytoxan and prednisone. I had two nephrologists and one was hopeful I could regain kidney function so he put me on those drugs and also a plasma pherisis program. The other was not hopeful as she said the kidneys looked too damaged. I do still urinate some ( about a cup per day) though I don't know if that indicates anything or not.

    If there is any 'silver lining' to this medical disaster it was being able to tell my financial advisor I no longer have to worry about 'outliving' my money and to start depositing the income from my investment account into my checking account both to pay the avalanche of medical bills in my mailbox and to buy the car I had always been too cheap to indulge myself with before. If I can't take a cruise or vacation abroad I can at least drive to dialysis in a nice convertible!

  9. #9
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    sangell,
    Welcome to the forum, I'm so sorry you have to be here. I'm glad you are finding a silver lining and some answers to your questions. This disease is very unpredictable and it is great to come here and find people who can help with questions we have. I hope that you are also seeing a Wegs specialist, who can work with your kidney docs. I wish you all the best for better health in the future. So enjoy that convertible when ever you feel like it. Take care!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Welcome, glad you found the forum but hate that you have this foe. If you are on Facebook you may wish to look up W.G. Warriors - you can read about a (young) Wegeners kidney transplant patient. And FWIW myWeggie daughter (also young) had very bad kidney issues (short of dialysis though) and followed the diet to a T as well as complying with meds and her kidneys improved drastically. I have also heard fantastic things about plasmapheresis. Also fwiw, I know another (young) weggie who is a couple years in on nightly dialysis (?) -don't remember the exact term - that she does at home. She's on the transplant list, but she's doing great overall. Best wishes.

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