anyone with amyloidosis?

[joy]

My husband's cousin has this. I know it is rare. He has opted to do minimal things as they told him chemo, etc. would leaving him feel worse and it would not prolong his life all that much. I really wish he has tried but I don't know his circimstance, does he have insurance, etc. I know he gains so much fluid he has to be hospitalised and is rapidly losing all his strength. ast time it was 15 pounds of fluid and he was in hospital for almost a week. There is a medicine he is on that costs a lot of money but I don't think it is IVIG as he takes it himself and there is no health care worker involved.

[joy]

He passed away yesterday.

[Buttons2]

Joy, this is sad. Hugs to you & hubby.

[Jenifer]

Please let me say I am so very sorry for your loss.

At last I have found someone else to have had this--my Husband died in 1989 with this he had Primary amyloidosis of the bones--and was said to be the only EVER to have had this in this way--he suffered in a dreadful way--and b4 this had never had a sick day in his life. He was 48 when he got it and died 3 weeks after his 50th birthday. I have been unable to find any info on the Primary as it is normaly a secondry illness.

He was on huge amounts of morphine.

I nursed him at home most of the time but he had to go into hospital quite a lot for more treatment--where I also nursed him and stayed at the hospital as he had to have EVERYTHING done for him as he was in such great pain.

I still have all the notes I kept as I have to give him so much Morphine--he was in the end on 1500mg a day.

[joy]

Hi Jenifer it is good to have you with us here at Braintalk. I am sorry for your loss. My husband's cousin had to go in hospital repeatedly to have fluid drained. He would have to wear his pj's a lot because of all the fluid gain. He too was in a lot of pain. At first we were hoping his neuropathy was just ordinary type where there is a lot of pain but managable. Not so and it wasn't long before we knwes his was caused from something more unusual.

It is always sad when there is not much they can do for the one hurting so.

We just spent some time with the wife this week and you can tell it has been so hard on her as I know it has for you.

[Jenifer]

Hi Joy was it a Primary one that he had or a secondry one--

I have been trying to find out more about this one that my Husband had but after all this time and still NO luck-- it was so rare and they said he was the only one ever to have had it--of the bones

[joy]

I do not know all that much as my memory is bad. I know they said his was 1 in a million or something like that. Also it was bad on his kidneys. His daughter said it looked like he had brusised on his legs and her thoughts were he bled to death internally. He too was always in a lot of pain. I was so hoping he would try chemotherapy or IVIG but thye said how sick he would get and could only hope for just a fw more months even if he did try it. Both men were much to young to have such a bad thing happen. Most all of the doctors did not know how to treat it even in this day and age. He would have had to travel a long distance for that also.

[Jenifer]

Yes my Husband had a lot of bleeding to begin with--and he was also very young--he was just turned 48 when he got it--died 3 weeks after his 50th birthday--They did try a bit of MILD chemo--to see if that would help the pain--but no it didn't--in any case he would--NOT have wanted to last any longer as he was in GREAT suffering---

[joy]

Yes so was this man. It was such a sad thing. I have idiopathic peripheral neuropathy and have dead legs, feet and hands and it is spreading to other parts. I cannot imagine how much pain these men had myself. The daughter said, he is not in pain anymore after he passed. It was so hard on the family seeing him that way. I am afraid it will be some time before there are enough answers to satisy most who want or need to know about this disease.