Stem Cell Transplant Tips?

[brianswife]

Hi everyone! I'm Barbara, Brian's (moondoggie22) wife. I'm so glad we both found this board. I'm learning so much and Brian is getting great support. It's great to know we're not alone (but terrible to know how many people are suffering from HD).

Brian is going to go through a stem cell transplant in a few weeks and I was hoping to get some ideas from patients and caregivers out there for the best way to help Brian. Do you have any practical advice about what I can do to help alleviate pain (mental and physical), or the right food to feed him, or things to help him not be so bored when he's homebound for a few weeks?

Were there any surprises that we can be on the lookout for? Basically, anything you've learned that you can pass on to us would be immensely appreciated.

Thank you so much everyone!!
Barbara

[AMD45]

Is Brian having his transplant in the hospital or are they doing it as an outpatient? It's not often that they do them outpatient but it's starting to be more prevalent.

I had my transplant at the Cleveland Clinic -- about 3 hours away from home -- and my mom was with me the whole time. Fortunately, I don't bore easily so I was able to sit for hours and watch mindless television shows including one of the three Arabic news channels the CCF has on their network -- and I only speak English. From reading Brian's posts and his blog, my guess is that he might bore much more easily than I did.

A couple of things that I did that I think helped me get through the whole thing.

1. When they woke me up in the morning for weight check, BP, temp and breakfast, they changed the bed. Except for a few days when I felt really horrible, I tried not to get back in the bed until the evening. It helped give the days a beginning and an end.

2. Make sure they give Bob whatever drugs he needs to make the experience as painless -- and faint -- as possible. There are 6 days of my transplant that I don't remember at all and I'm fine with that.

3. Walk. Walk. Walk. I'm not one for exercise but they want you to walk after your transplant to get your strength back. My mom couldn't walk the halls with me but if you can walk with Brian, do.

4. Play cards. I know my mom got frustrated with me because I couldn't remember how to play half the time but it kept me entertained.

5. Don't feel like you have to be there all the time. I was very grateful that my mom was able to go to Cleveland with me and be there for 3-1/2 months but there were times when I just wanted to be alone. She felt like she needed to be there all the time for me so she didn't get that I didn't necessarily want her there all the time.

You'll be surprised at how fast times flies and how soon Brian will be home. He strikes me as a very gregarious guy and that will help him as he goes through this. One thing I did that was kind of fun was to take a camera with me and I kept it on my IV pole I was attached to the whole time. I took pictures of everyone -- some pictures I had no clue I took until I got them developed. Brian might have some fun with it -- and it will give you something to smile about when it's over.

[Moondoggie22]

From what I've heard, cookies and candy help a lot. And lots of video games and comic books. I think you should get him all of those. And a dirtbike.

What do you mean, "I can see your username"? I don't know what you're talking about.

[AMD45]

So is this what it's come to? Brian, you're using us to get your wife to buy you presents? Shame on you.

[roswelldeb]

Brian,

I just love your attitude!! (Wifey may not agree with me by the end of this ordeal, though! ) I only hope that if I ever face having to have a transplant that I can do it with half the attitude you have!! Thanks for sharing your positive outlook and humor with us!

[RASC_NY2]

Barbara,
Sorry about the better or worse part. May want to rent a laptop computer with DVD drive if you do not have one. Buy is another option. You can look at movies, audio/some even have FM tuners. There are several puzzle programs out there that allow you to customize a puzzle from ANY JPEG. The dirt bike I am sure will help move around the Hospital-but you may need a super quiet muffler. Good instant coffee or flavored coffee. Coffee Cup, pillow, a pet pillow for his Seeing Eye Dog. Cookies and candy are always a good selections. This is getting to be too big and I have not started with the good stuff.
Tony

[Sherril]

It is always interesting reading everyone's experiences, they are all so different. I am 71 days out from my transplant and other than days 1-3 and the last 3 days in the hospital I don't remember a thing. I was sick enough to be kept sedated for over 2 weeks using TPN for nourishment.
Up side was that I definitely didn't get bored!

[brianswife]

I'm still so new at all this. What is "TPN" for nourishment?
Thanks!

[bew222]

Hi Barbara (great name BTW)

TPN is basically liquid food - its yellow and they give it to you through your IV ( or catheeter, whatever your vein-access device of choice is). Its basically to keep you nourished when you don't want to eat. I was on it for 2 weeks (couldn't eat for most of that time, then when I did it certainly wasn't going to be hospital food). It does a good job of keeping away that empty-stomach feeling too. It can cause diarrhea though (sorry -TMI - but its true) so take cottonelles with you as that will ease the pain, um, yeah, in that area. Nuff said.

I have a friend about to go through SCT and this is what I wrote to him, thought you could use it too:

1. Expect to get sick from the high dose chemo. Even if you never really had a lot of nausea/vomiting with the chemo that you have had so far (like me), the high-dose stuff is practically guaranteed to make you sick. Good news is that it won’t last long and it, God willing, will be the last time you are sick from chemo ever again.

2. The high-dose chemo usually causes mouth sores, GI tract irritation, etc, that makes eating painful. They will have a lovely selection of painkillers available to help with the pain, and don’t worry if you have to stop eating for a time.

3. Expect for to be in for 4 weeks, anything less will be a bonus. Once home, you will recover so much better.

4. Walking around and getting out of the hospital room when they will let you will be very good for you.

5. You will be very tired while in there, expect it and sleep as much as possible (makes it go by faster ).

6. Take some things from home to make the hospital room more personal and comfortable. I took my pillow, a small blanket, pictures, I always wore my own clothes, and I took my own hand soaps and soap for the shower (no shampoo was necessary J). I even took a remote control car to play with in the halls and harass the nurses with at night. It was a yellow truck and I played with it in the halls after visiting hours, rammed it into the PAs feet and such when they were walking. It was great, and they had fun with it too. I wasn't being mean, just having fun in the blocked off, highly sterile SCT wing hallway.

7. My husband says that as a caregiver, it really helped when he focused on all the small victories, such as the last day I had chemo, the transplant infusion day, the day my counts started going up, the day they let me go out for a walk, etc…. It kind of breaks down this huge scary process into smaller, manageable, and winnable battles.

8. After transplant, your immune system will be pretty suppressed and so you should probably stay home/out of crowds for a couple months depending on what your Dr.s say of course. Recovery after transplant is a slow process. Taste buds may be off, lungs might have temporary damage, and no doubt you will be fatigued. It was 10 months before I felt close to normal. Just know that you will feel a little better everyday, and that will keep you going.