[Wife]

Here it goes

by Wife on Tue May 31, 2016 4:00 pm

My husband was diagnosed on October 4 2016 after he went into DIC (dissemi­nated intra­vascular coagu­la­tion). His body was shutting down. That is the non-medical definition. The next day we were told that he had multiple myeloma.

After 3 weeks in the hospital, bone marrow biopsy, dialysis, blood transfusions, 30 pounds lighter, we left the hospital. Kidneys are normal / better than they should be for a 69-year old. Six rounds of Velcade, Revlimid and dex, Zometa once a month, things look good to go for stem cell transplant.

He handled everything like a trooper. Didn't have any major complications, no taste buds, neuropathy, tired, slept frequently – even through the night while on dex! He can't walk around the block or great distance, so no real strength (muscle tone gone). PT has helped some, but not sure if he will get muscles back or not. He has that negative 13, which I don't understand. What I get from the doctor is it's better then 17 but still not good.

We are both afraid he will be declined for stem cell transplant, but his doctor says if they decline to do it, he will give us a referral to another hospital. He feels Jim would do well with it. Need­less to say, we are scared of the transplant, but feel he must do this to get in remission and for him to get his life back.

We have an awesome group of friends, a daughter and son-in-law and two wonderful grand­daughters, who really support us. Jim has a great attitude that I know helps tremendously. (We will get through this one day at a time.) But as June 13 approaches, we are both getting more and more nervous.

I read everything on the Beacon. Everyone talks about exercise before, during, and after transplant, but Jim can't do that. Will this be why they decline him?

I know – face that if we come to that; one day at a time.

Thank you for listening. Everyone keep posting and I will keep on reading.

[dogmom]

Re: Here it goes

by dogmom on Tue May 31, 2016 7:00 pm

Maybe he could get one of those little floor model pedal machines that he could use while sitting. Even if he does it just a little while at a time, maybe he could build up? Some of those exercise bands as well. My husband has some and they can be set at just about any tension level, from very low to high. They do say some type of exercise is important.

My husband was always very active before myeloma, and it was very hard on him when he felt so bad at diagnosis, but as soon as he got a few chemo treatments under his belt, he felt so much better. He has stayed active throughout induction treatments and went to work every day but treatment days. We also have a small farm and he has kept it up as well with some help from our son and his brother-in-law.

His doctor is very surprised he has never had to take any pain meds throughout this whole deal, even though he had some lesions on his ribs and lower back. We check in tomorrow for his trans­plant. I so need this to go smooth for him as well.

Good luck to you and your husband. I hope he is approved for transplant and it all goes well.

[Wife]

Re: Here it goes

by Wife on Mon Jun 06, 2016 11:21 pm

We have looked into the bicycle wheel as you suggested. Should be coming any day. Thank you for the suggestion he really liked the idea.