Rest in Peace Eric :(
AnonymousMarch 23, 2011 at 10:42 pm
It is with great sadness I report to you all that Eric Vance passed away the 17th of March.
He was my comrade in arms and he was 51 years old, only 9 years older than myself. He was dxd a year before me by the same doctor. I had been taking rituxan a while before he did, but he was not far behind me.
We actually had the chance to get our treatments together and talk a few times. He was a great person with a caring attitude. His family was very kind to me.
My deepest sympathy for his family, friends, and all his loved ones. You will be missed Eric.
Yes, I believe his death was definitely cidp related.
AnonymousMarch 24, 2011 at 2:12 pm
I met him in person once or twice, he offered me the use of his wheelchair equipped van. He was walking pretty good at the time, and was working on playing guitar again. It was the summer of 2006… We had alot of fun on this forum, the most memorable got him banned from posting here.
He was a computer programming monster, and managed to keep working in spite of CIDP.
Such a loss, he will be missed. God bless his wife and son, the light of his life..
AnonymousMarch 24, 2011 at 3:11 pm
[QUOTE=micahsmom]that’s awful. how could it have been cidp related?
just terrible news when someone falls to this condition.
still trying to figure out how cidp takes someone.[/QUOTE]
I’ll speak up for Eric, he would have a rant for that.
wilikipedia says Christopher Reeve died from cardiac arrest due to a reaction to an anti-botic for an infection due to a bedsore. It don’t say he died from being a quad, so I guess being paralyzed, didn’t kill him after all.
CIDP has brought me close to death a few, I can’t breath because my diaphragm muscles won’t work. So please make a note for my obit.
Make sure it don’t say I passed from Pulmonary failure. Make dam sure it says … CIDP kilt that boy…. for sure..
AnonymousMarch 24, 2011 at 3:53 pm
Yes Soapy, I did not want to post about Eric, but I felt by not doing so would not be what Eric would have wanted.
I know it is scary for those with children that have cidp, but I know by not saying anything about cidp related death does not help anyone.
I have read and heard that pneumonia is the number one killer of those with cidp. Unfortunately as Soapy said; it is easier to say and believe that cidp does not kill folks, and we know that is just not true.
Actually, until this attitude by doctors changes, we will not get any help as cidp patients, or any greater funding for research for those who walk our footsteps.
AnonymousMarch 24, 2011 at 5:28 pm
I never met Eric, and it sounds like I missed out in not doing so. I agree that everyone needs to be aware of how serious CIDP can be. What I have seen written about the disease uniformly says it is not fatal. Although I agree that it is extremely rare for someone to die simply because they have CIDP, the disease itself can lead to fatal complications, such as pneumonia.
AnonymousMarch 28, 2011 at 12:01 am
I believe that this is the same Eric I used to email long ago on the old forum around 2003-2006? He was a computer programmer & had a young son & wife at the time, maybe around 10 or so? It must be the same Eric… He was extremely intelligent, I loved his posts, & he would be walking & then get hit really hard & be almost like a quad for a time. Once he posted about what would happen if he just went off of all treatments, we were all so afraid he would actually do so. He was searching very hard for the right treatments all of the time, God bless him, so sad…
CIDP can kill, if one is refractory to treatments & the case is bad enough. Leon Belt was on here & I used to talk to him on the phone a lot. He had gotten to where he could only shrug his shoulders. He died of respiratory failure, but really he died just like one dies from ALS. My friend Robert Dunn who also posted awhile ago, died after his IV line became infected & his whole body bacme septic. Would he have needed an IV for an infusion if he didn’t have CIDP? Yes, this illness can be very ugly…
AnonymousMarch 28, 2011 at 2:00 pm
Yes, respiratory failure would be the culprit, with CIDP as an underlying cause of the respratory system failing. It happened to my daughter right under the neuro’s noses at the hospital. Because she was in hospital and because of a nurse (not a doc) it was caught quickly. I had noticed the strange way she was breathing (not noise but the body trying to compensate for the inability of the diaphragm to work properly). The inability to exhale put the blood gases way out of whack because she could not exhale the CO2. It took over a week to resolve, although I did keep her off the ventilator. The pneumonia lasted for months but the blood gases resolved in about 2 weeks. Sorry to scare anyone, but if the CIDP is not controlled there is a not so remote possibility of this happening. It’s why one should keep the CIDP under control with plasma exchange or IVIG. The IVIG did nothing for my daughter. She is now 35 with lots of residuals that will never go away, cannot walk and has limited use of her hands, and gets PE now every 4 weeks and takes cell sept.
Does anyone know anything about Kedasco?
You must be logged in to reply to this topic.