[Terrilynnn]

Stem cell transplant - day 7

by Terrilynnn on Sat Feb 22, 2014 5:14 am

Going into day 8 of stem cell transplant (SCT). He can no longer eat or drink - mouth sores and mucocytosis really bad, has extreme diarrhea, vomiting - when he can get it up his throat , major swelling in legs feet and hands. Never did get a fever. WBC at 0 2 days in a row. Had 2 doses of Neupogen.

I know it's temporary and will pass but so hard to convince him of that. Any ideas on how to make him slightly more comfortable? How long till this to will pass?

[rumnting]

Re: Stem cell transplant - day 7

by rumnting on Sat Feb 22, 2014 9:08 am

Good news / bad news. For my husband, he was the exact same way until about day 14. During the 2 weeks that he was so sick I know he was wishing he hadn't had the SCT, and a few times I think even wishing to die. The nausea / diarrhea was that bad. Once he did start improving, it was a rapid recovery. That was 2.5 years ago. He's doing great, and if he had to have another SCT, he'd do it in a heart beat. Right now is hell for both of you. Read the success stories on here. Hang in there. IT WILL GET BETTER!

[Wayne K]

Re: Stem cell transplant - day 7

by Wayne K on Sat Feb 22, 2014 12:37 pm

Are they checking him for C-Diff? I would hope so.

[Terrilynnn]

Re: Stem cell transplant - day 7

by Terrilynnn on Sat Feb 22, 2014 1:06 pm

They sent a stool sample for testing and came back negative. WBC is 0.05 today. Platelets 7. Had his second platelets transfusion today. Had blood transfusion 2 days ago. Gravel is allowing him some rest but stomache is very sore.

[Nancy Shamanna]

Re: Stem cell transplant - day 7

by Nancy Shamanna on Sat Feb 22, 2014 6:13 pm

Terrilynn, i am wishing you and your loved one all the best. Sounds like he may have turned the corner with his blood counts if the WBC is up to 0.05. Good to know that the transfusions and the neupogen are helping him out too! Hang in there, and tell him that sometimes when I felt the absolute worst, my blood counts were actually improving! Even though my experience with SCT was not terrible, it was still a difficult time. I am sure that having you there for him means a great deal to him also.

[BarbCF14]

Re: Stem cell transplant - day 7

by BarbCF14 on Sat Feb 22, 2014 10:50 pm

My boyfriend had a similar reaction. He is now at Day 17 so I can concur he will get better.

A couple of things that helped:

• Reading him similar stories so that he could be more assured this will pass (the docs/nurses seem to almost underplay the negative side effects; I can understand why, but it helps to have some validation),
• Telling the nurses/getting him to tell the nurses if he needs more pain meds (nurses were all technically competent but varying degrees of sensitivity, and men are often reluctant to ask for help)
• Making sure as many meds as possible are IV (less swallowing)
• Beating off the nurses/physical therapy when they come by to nag him about walking and exercise (getting to the bathroom was exercise enough)
• Shutting the door and minimizing interruptions so he can sleep.

I really had to be there 24/7 to help him, even though he was at a very good center.

FYI at Day 17 Mark is still very fatigued and with little appetite, but sores and swelling are gone.

[Terrilynnn]

Re: Stem cell transplant - day 7

by Terrilynnn on Sun Feb 23, 2014 12:57 pm

Thanks for your reply Barb.

I am rooming in with him until he is stronger. He is on all IV meds. However, some could not be changed so he is going without his gabapentin. He was on 1200 mg 3 times a day for 9 months so also going through withdrawal which includes anxiety and hostility. He is calmer when I am here.

I also have refused to let him out of the room. He has severe diaherra and nothing would be more demeaning for him then to have an accident with people around. I understand the need for exercise but right now I feel he needs more mental strength then physical. He is getting up to commode. Standing while I clean him up and then walking back to bed so getting some exercise

Today found out he has a lung infection so antibiotics for that. He is improving very slowly however he is in so much misery he can't see it yet.

WBC is 0.1 today.

[BarbCF14]

Re: Stem cell transplant - day 7

by BarbCF14 on Sun Feb 23, 2014 7:14 pm

It's a miserable disease and a miserable procedure. Sounds like you are doing an amazing job caring for him. Our doc said Day 10 would represent the turn around, and that was the case. Hang in there...hopefully he'll forget the worst of his misery and feel better in time.

[Bobg]

Re: Stem cell transplant - day 7

by Bobg on Sun Feb 23, 2014 8:26 pm

This is Bob's wife replying to wish you better days which are coming soon.

Bob had a transplant in December 2013. He did come up with c-diff which involved a lot of diarrhea and he did have miserable days, many in a row.

Would he do it over? Absolutely!

To me, the more your husband can sleep right now, the better for him. Why stay awake and feel the misery?

Wishing you both so well.

[LadyLib]

Re: Stem cell transplant - day 7

by LadyLib on Sun Mar 02, 2014 11:43 pm

Hang in there! Things will get better. My husband said a couple of days, he felt absolutely horrible. He will come out of it so much better in the next couple of weeks. My husband is at Day 60+ and he back in the gym, eating well, able to stay up and talk all night. Life is good and I am cherishing it. This too shall pass. Your best days are ahead!