In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe aplastic anemia. Here's what each had to say about what they're doing and how they're feeling. If all goes well, they will be heading back home to San Antonio by February of next year. We’ll be updating their story here each month!
Stem cell transplant patient
How are you feeling now, about two weeks out from your stem cell transplant, and what are you hearing about your recovery?
At first there was a lot of pain from the transplant conditioning, and it really took around a week and a half for this pain to recede. I had very little appetite. There still is some back pain, however. But now I feel a lot better, eating solid food, getting back to some physical activity—even if small things like getting out of the chair or bed and walking around the hospital floor. Each day I feel a bit better and more alert.
Every day, someone from the transplant teams stops by and often it’s more than one person -- there have been as many as seven or eight in the room, and one time my sister counted 16! I’ll talk with many of them and tell them how I’m feeling, and they tell me how I’m progressing – and thus far it’s really good news about how the transplant is doing. It’s encouraging, since I am the first SAA patient to have this kind of transplant and this first instance of it is going well.
Next week I will be discharged from the hospital – a free man -- at least for now. But I’m still on NIH grounds, staying at the Children’s Inn for quite a while to come before returning to San Antonio.
What have you been doing for John since his stem cell transplant occurred almost 2 weeks ago?
I’m have stayed here most nights up until this point. I am supposed to push him to get physically active up to the point that’s allowed for his condition. It’s like track – 16 laps around the nurses station area is about a mile. The doctors want him to be able to do 10 laps before he’s discharged and he’s up to about 6 laps right now. So if we don’t’ make that goal, he would have to remain here longer.
But becoming physically active again is important to recovery. There’s no getting around this so I have to make sure he’s meeting the goals that are set, and let the team know if he isn’t. So we have our good days and a few less good days but still the trend is positive. We’re sister and brother so we know how to work things out.
Even when he has been in pain – part of this is good news as that’s the stem cells engrafting and growing. The team says he’s coming along. His ANC coming up, and platelets take longer to come back, so that’s still a daily transfusion. We’re getting some numbers also about the current ratios of the type of stem cells used in John’s transplant – it’s all very interesting to follow.
We also go to recreation therapy – fun things happen. We made various animals from flat wooden sticks and glue. Even video games are part of this recovery! But the whole idea is to get him physically and mentally active again in this immediate post-transplant period.
The clinical trial you’re now part of since arriving here in a caregiver role - how did this happen?
It’s just getting started. I have been through blood work (phlebotomy) and I had to take a survey on mental/emotional outlook. There’s the randomization -- which group is the control and which group is the interventional side – and I’m in the latter group. There will be more to tell as the weeks pass. One part of this study is to see if yoga helps with stress levels!