[KathyM]

Hi Heather-
My H is almost 5 months post-transplant. His was an unrelated donor 10/10 male match.

Like you, we had no idea what to expect. I think we had visions of his being perhaps bedridden, not able to perform any daily functions of living, etc. I thought he would need round the clock care, etc.

He was tired, weak and needed to rest a lot. But he was able to manage the steps, fix himself something to eat and basically do all the things he needed to do for himself, personally. He wasn’t able to manage his medication – I did all of that for him (I still do)– and that was overwhelming – I remember it would take me about 45 minutes to get it all together. I used those weekly pill containers – and he had 5 of them – wake up, breakfast, lunch, dinner, bedtime – each of the little containers were filled to the top! I remember it used to take him about 30 minutes at each sitting, just to swallow all his pills because he was still having mouth issues. He also was suffering from hand tremors at that time.

I also remember his being quite cranky at times too. No matter what I did – he wasn’t happy. He was argumentative and just not himself. He’s typically very easy-going. However, that too, soon passed. I would just brush that off because I knew emotionally he was going through so much – he was scared and coming home from the hospital after being there for 5 weeks – I think he missed the comfort of knowing the doctors and nurses were just a few feet away in the event something happened. Again, that didn’t last long either.

He had issues with gvhd of the skin and the intestines; at one point his wbc counts dropped for about 3 weeks – then went back up. About a week after he was discharged from the hospital – he was back in for 6 days with a-fib of the heart. He was back and forth to the clinic and specialists for tests and procedures, it seemed almost weekly. The drs all assured us this was NORMAL. In time those issues resolved.

When I look back at pictures from that time – I can see that he was pretty much in a daze – like “what the heck just happened – I feel like I’m in the twilight zone”

Each week he has gotten better and better. There have been slight set-backs, for sure – but honestly, the anticipation was much worse than the reality. When you consider the monumental thing that his body went through – its just absolutely incredibly amazing!

One piece of advice I will give you is – make sure you have a few reliable people who can help you with taking him for his appointments. That was a huge help.

I stayed home for 2 weeks when he was originally discharged. When I went back to work we both felt confident that he would be fine by himself…and he was. Luckily, I only work about 20 minutes from home, so in the event that anything happened, I could get home quickly. We developed a routine where he would call me in the morning and the afternoon so that I would know how he was doing. Also, friends and family would check in on him periodically.

Today – at 5 months out – he is doing great. He just began driving himself to his own clinic appointments (which are now down to once every two weeks). He’s teaching himself how to cook (yay! for me!). He does the laundry and handles the day to day things at home while I’m at work. He’s beginning to get bored – which I see as a really good thing! That means he’s getting better. He tries to get outside most days for a walk and he says that really helps with his energy level.

We did try to get creative with the restrictions – for instance, in the beginning, he was not allowed to go outside very often – if it was windy or too sunny – so, he took to sitting in the garage with the door up, as a way to get outside. Also, when he was feeling up to it – we would go to restaurants for dinner – and bring his dinner with us – and I would order off the menu. At least it got us out of the house. We would even take his own utensils and napkins. I would call ahead to the restaurant and explain the situation –and people were always very accommodating. Again, it was a good way to begin to feel “normal” again and get back out in the world.

He still has a ways to go – but overall we are both really pleased with his recovery so far. Dare I say, life almost seems to be getting back to normal, or maybe I should say a “new normal”.