Loss of another member…

    • Anonymous
      July 12, 2006 at 2:50 pm

      I am so sorry to report that another one of our forum members has passed away, about 3 weeks ago. He used to post under the old forum under Robert, & he had the progressive form of CIDP. What most people didn’t know about Robert was that he was an orthopedic surgeon from New Jersey, who had one son, a strong marriage, & a summer cabin in Maine. He had also loved being a pilot.

      He & I sent many emails to each other & also had many phone conversations. He was so helpful when I broke my collarbone in March of 2005 & also this past winter when my husband had two back surgeries. He was hospitalized for the past few months undergoing chemotherapy to try to arrest his CIDP. His IV became infected & then his body became septic, eventually he went into respiratory failure.

      I feel so badly for his family, he was such a kind & caring man. The medical community has lost a great doctor, & I feel we have lost another of our friends. Please say a prayer for his family; Robert was only 62…

    • Anonymous
      July 12, 2006 at 7:24 pm

      That is very sad news Pam, thank you for letting us know.

    • Anonymous
      July 12, 2006 at 11:01 pm

      I think we all feel grief when we hear that we have lost a member. I never knew Robert, but I do remember that he was part of our old forum. His death was not one where there was time to prepare for, which makes it so very very hard on family.

      Prayers and hugs of comfort are sent to his family.

    • Anonymous
      July 12, 2006 at 11:09 pm

      I am so sorry to hear that, my thoughts are prayers are with his family.

    • Anonymous
      July 13, 2006 at 1:01 am

      It sadden us when we loose friends from here …we all feel like a big family .

      My thoughts and prayers .

      My sympathies to his family .

    • Anonymous
      July 13, 2006 at 10:31 am

      I am also sad to hear this . I did not know Robert either but like said earlier it is sad to hear we lost a member of our family.
      My prayers go out to Robert and Family.:( 🙁

    • Anonymous
      July 13, 2006 at 2:04 pm

      Robert is free from his pain now. God bless him.

      My prayers are with the family.

    • Anonymous
      July 13, 2006 at 8:41 pm

      Oh my, this is tragic. My sympathies to his friends and family.

      If the cause of death was sepsis caused by infection of his IV line (and perhaps immunosuppression caused by steriods and other CIDP treatments?) could this be considered a case of CIDP shortening lifespan, if not actually causing death?

      My neuros at Johns Hopkins are always upbeat and like to say that CIDP is only chronic and that even in progressive cases, the rate of progression can be slowed by treatment, which I have found to be true in my case. However, I think it is wise to recognize that treatments for CIDP, if not CIDP itself, can, in rare cases, contribute to fatal complications, and plan (maintain life insurance, if possible, and other financial and other planning) accordingly.

      Perhaps someone has good data showing that fatalities from complications from CIDP are very rate indeed?

    • Anonymous
      July 13, 2006 at 9:37 pm

      When I first met Robert a few years ago via this forum, he was still walking & seeing patients (but no longer doing surgeries), but shortly after that he went to using forearm crutches. He flew out to the Mayo in Rochester, MN to get an accurate Dx a few times, & then had to go into a wheelchair around Christmas of 2005. It was when the CIDP started weakening his arms & affecting his hands that he decided on chemotherapy treatments. His son said that he was having miraculous results while in the hospital, even able to wiggle his toes again, something I can only dream about.

      I think part of the problem with CIDP is having to suppress the immune system so much to keep the disease in check. I know his white blood cell count was down to zero when he got the infection; nothing to fight back with. When I had my chemo treatments, I had 3 inpatient (from Friday to Monday, & then was sent home. After that I had one each month for 8 months at our local oncology center. Before that I had had my IVIF & steroid infusions done by a home health care nurse, much more sterile at my home than at a hospital, I think. I also tried not to be around other people when I got to around zero for my WBC.

      Someone on this forum once said that the treatments can be worse than the disease itself. I believe that wholeheartedly. But one can die from CIDP; if the disease is progressive & cannot be arrested, eventually it goes into the lungs & diaphragm, causing inability to breathe. I only know of three who have died this way from CIDP in the last 2 years. But one must keep in mind that only about 15-20% of CIDP cases are progressive, the rest are relapsing/remitting. These are the people who tend to do well with regular CIDP & lead fairly normal lives. We need to remember that this is a very serious disease and I cannot emphasize rest enough…

    • Anonymous
      July 14, 2006 at 10:50 am

      I am so saddened that we have lost another member.
      No one realizes how serious GBS/CIDP is and how it affects the body.


      Please convey my Deepest Sympathy to Robert’s family. With the passing of each member, a little piece of us goes with them because we are their family too in this illness.

      I will pray for Robert and his family.

    • Anonymous
      July 14, 2006 at 5:13 pm

      It’s always sad to read that we’ve lost another one of our family…
      It never gets any easier to acknowledge the sorrow that I feel…
      My sympathy for your loss…

    • Anonymous
      July 14, 2006 at 11:32 pm

      I am sorry for this loss in our family. My sympathy and prayers for all.