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Thread: Son, 20 GPA diagnosed 2 weeks ago

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    Default Son, 20 GPA diagnosed 2 weeks ago

    My son can not speak for himself as he is sedated. Jack came home from school for the summer not feeling well, that was May 22nd. He was diagnosed with Wegener's less than 2 weeks ago and has been in the ICU for almost 3 weeks. His lung function is very poor and he is being supported by ECMO. He has received 7 plasma exchanges and tomorrow will receive his 3rd round of Ritoxin This is a nightmare.

    I am reaching out for support so that when Jack is woken up I can cope with the next stages of our new journey. I've been told this is going to be a very long healing process ... months. Relearning to walk, building up his strength and so much more that i have no idea about. We won't know for sometime the overall damage that has been done to his lungs.

    I've come to the realization that life as we knew it is no more.

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    Default Re: Son, 20 GPA diagnosed 2 weeks ago

    @helenamt61

    Iím saddened to learn the disease has hit your son so hard. Itís going to be a long, hard slog to recovery. I hope he does well with proper treatment.

    Here are a few thoughts for your consideration:

    1. Expert care is critical. Treating it involves art as well as science. You may want to ask your sonís docs to consult with a vasculitis expert. You can search at this link for a doc closer to you. https://www.vasculitisfoundation.org/find-a-doctor/

    2. Rituxin takes several weeks to take full effect. What other meds is your son getting? High dose prednisone (probably in the 50-60 mg/day range) could help.

    3. Proper nutrition and exercise (when heía able to eat and move around) will be beneficial. Eliminating highly processed foods and excess sugars will help. Start slowly with exercise.

    4. While recovery will be slow, there should be hope that your son will get back to a lifestyle that will be pretty close to what he had before disease onset.

    Feel free to ask questions and vent on here. While there are no doctors (that I know of) on here, there is a wealth of experience.

    Let us know how heís doing...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Son, 20 GPA diagnosed 2 weeks ago

    Quote Originally Posted by helenamt61 View Post
    My son can not speak for himself as he is sedated. Jack came home from school for the summer not feeling well, that was May 22nd. He was diagnosed with Wegener's less than 2 weeks ago and has been in the ICU for almost 3 weeks. His lung function is very poor and he is being supported by ECMO. He has received 7 plasma exchanges and tomorrow will receive his 3rd round of Ritoxin This is a nightmare.

    I am reaching out for support so that when Jack is woken up I can cope with the next stages of our new journey. I've been told this is going to be a very long healing process ... months. Relearning to walk, building up his strength and so much more that i have no idea about. We won't know for sometime the overall damage that has been done to his lungs.

    I've come to the realization that life as we knew it is no more.
    I went through this process 9 years ago and my story is listed on this forum in several places. Recovery is a slow process but mine was much slower than your son's is apt to be since I also had type 0ne diabetes for many years and was also over four decades older than your son. I spent a few months in a hospitals before going to a nursing home for another few months.

    I was also headed for dialysis in ICU but just managed to evade it and my kidney function improved slowly over the years which is unusual given my on going damage from diabetes. Same for my lung function which also seemed to stabilize after a couple years. I still have considerable damage to both lungs ( about 50%) and kidney (stage three now) also along with a loss of balance and hearing from the GPA but they manged to preserve my vision. My neuropathy continues to get worse, probably more from the diabetes than the GPA.

    But I have adjusted to my "new normal" and also progressed from a nursing home after a few months to a light assisted living facility where I have been for past 8 years. I can wobble slowly now without a cane or walker but it took me a few months to do so and a couple of years to be able to walk more than a few hundred feet at one time. I can now wobble slowly a kilometer or two at a time but often need rest breaks. Your son's prognosis should be much better and he may well be able to return to a physically demanding line of work and long distance bike races is he is so inclined after a few months of recovery.

    I had to switch from RTX to CTX since they knew I would not survive long enough for the RTX to take effect. I also had mega dosages for steroids while in ICU (1000) units of Solumedrol) which equates to 1650 units of pred but now my GPA maintenance dosages is only 7.5 mg of pred and 175 mg of AZA. I think the umpteen plasma exchanges were crucial to my survival.

    Many people also are able to get off all maintenance meds, especially younger people. Hope for the best but get good followup care from some one skilled in treating GPA as recovery is usually marked with fluctuations of ups and downs and not just a smooth line of improvement but the long term trend is generally for the better with proper treatment. Only a small number of people fail to improve with proper treatment. Best wishes to you and him. Contact me if you have more questions or need to talk.
    Last edited by drz; 06-22-2019 at 10:13 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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