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A Stem Cell Transplant Story Part 2: The Importance of Care Partners

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Published on July 8, 2020

"The best that can happen is a very slow, gradual recovery" AML patient, Steve Buechler shares his stem cell transplant story with Patient Power co-founder, Esther Schorr. In Part 2 of this series, Steve describes the role of care partner, his experience with side effects and developing cytomegalovirus, and what to expect during the daily clinic visits required of a stem cell patient their first month home.
 
Patience is necessary and keeping a weekly log will allow a patient and care partners to see that incremental progress is progress.
 

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Transcript | A Stem Cell Transplant Story Part 2: The Importance of Care Partners

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Esther Schorr:

We're hearing about Steve's journey through a double cord blood stem cell transplant. And today we're going to talk about the month just after his transplant. A release from weeks-long stay in a hospital and a biopsy that brought good news that the transplant had done its job. So now we're talking about days 20 through 50. There were daily clinic visits to monitor counts, treat symptoms and assess progress. And a lot of at-home time, I think we're going to talk with Steve about. So Steve, this was a difficult month as I understand it. And so want to talk a little bit about the ups and downs of this first month at home after the transplant. So you had this biopsy on the 21st day. There was great engraftment. What happened after that? What was the next thing that happened? You're home.

Steve Buechler:

And it was wonderful to be home, but this is the point for every patient when the role of caregivers becomes really, really critical. The doctors and the social workers and everyone just stress very heavily that I needed to have, every patient needs to have at least one caregiver, literally living with them 24 hours a day, seven days a week for the next 100 days in the event that some kind of critical emergency begins to happen and you need to get back to the hospital in a big hurry. And for many people, that person turns out to be their spouse. And certainly my spouse was able to play that role to a point, but she has her own chronic illnesses and limitations, and couldn't be counted on necessarily to get me to the hospital in the middle of the night. So my best course was to recruit other caregivers.

And I ended up doing that and created what I call Team Wisconsin, because I live in Minnesota, but my main caregivers came from Wisconsin. And the rhythm was that the first week out of the hospital, my brother came and lived with us literally for a week. The next week, an old college friend came from Wisconsin for a week. Then my brother came back for the third week. Then my friend's wife came for the fourth week and my brother came back for the fifth week. So for five weeks I had double caregiver assistance living in my home. And that was a wonderful way to start the process. Now I ran out of caregivers and we'll talk about that a little later, but they did everything I could possibly have asked, but the main thing that was needed at that point was I needed to go back to the clinic for daily visits.

They told me every day for 30 days. In fact, it tapered off a little bit before then, but that's how closely they were monitoring me. So we would have an appointment. It might be a 10 or 11 o'clock in the morning. I'd hop in the car with my brother or my friend or my friend's wife. They'd drive them down there. I'd have a blood draw taken. And by the time you get through that and get the results that you've spent at least one hour on site. And then they look at the results and they say, "Well, looking pretty good. You can go home now." Or they look at the results and say, "You're going to need a platelet transfusion today, for sure." That can take up to an hour or more to order it up, get you in a chair and get you hooked up. Do the transfusion.

A couple of days. They said you're also going to need some red blood cells. That's more like a two hour deal. So we would drive into these visits and my caregiver didn't know if they'd be there for one hour or six hours. And you never knew quite what to expect when you went in.

Esther Schorr:

So you're at home now and you've got your care team, but what kinds of, if any symptoms or side effects did you experience during this time? How did you treat them? Did any of them surprise you? What went on during that time?

Steve Buechler:

Yeah. The two sort of minor ones is there were some very peculiar bone aches and they tell me that's probably from the engraftment process itself as if these new cells are digging their way into your bone marrow and making a home for themselves. And it was just an odd sensation. It responded well to Ibuprofen when I needed it. Not a big deal. This was maybe the peak of the round of nausea that I had in response to the conditioning chemotherapy and probably radiation as well. And so that responded reasonably well to a medication called Marinol that they'd given me in the hospital. It's one of several appetite stimulants, nausea suppressants. It's actually a synthetic non-THC cannabis related medication. And it worked pretty well. If I would take that within an hour before I wanted to eat a major meal, it would quiet down my stomach to the point where I could eat pretty much as normal.

But far and away, the most memorable side effect was a level of fatigue that I didn't think was possible. I was getting a good night's sleep every night, eight, nine hours of sleep. I get up for a couple of hours in the morning. And if we weren't on the way to clinic, I'd have to take a nap by 11 o'clock in the morning. When we got back from clinic, I'd have to take a nap in the afternoon. Then I was good for a few hours before bedtime. It's deceptive to say I decided to take a nap. It's more like my body just said, "We're napping now." It was almost like passing out. I was so tired.

Fortunately, I had no obligations to do anything. So I just let my body tell me what to do. And so sometimes the Pinochle game was a little short if I got too tired. But that was by far... really the most memorable, the side effect. The one other worth mentioning is about a couple of weeks into this period of time at home, I've been down for my daily blood draw. And I think they called me the next day. And they said, "We detected something overnight in some blood tests that you have something called the Cytomegalovirus," which apparently is a virus that lives in most of our bodies, our entire lives. But if you have a healthy immune system, you never know it. But you take away that immunity and all kinds of things can flare up. My first-

Esther Schorr:

So, this was an infection?

Steve Buechler:

Right.

Esther Schorr:

Okay.

Steve Buechler:

My first round of induction, that happened with an E. coli infection. And at first I blamed the hospital. They said, "No, that's been in your gut your whole life, but we just took away your immune system. So now you have this rather ugly set of symptoms." And with this one, the Cytomegalovirus, it can be fairly serious, but if they catch it early and treat it promptly, it's manageable. And that's basically what they did. They put me on a high power antiviral medication. At one point, it wasn't clear if it was going to work effectively. And they thought we may have to bring you back into the hospital for some IV, antiviral medication. But the compromise was, they gave me some... what was it? Oh, growth factor injections to boost my white blood cell count. And eventually the antiviral medication worked and that side effect went away.

So they pay close attention and urge you to pay close attention. And that process continues really through the whole recovery period.

Esther Schorr:

Was there a point where you started to feel as though you were making progress?

Steve Buechler:

You know, in this first period, it's really hard to notice progress because it's so gradual and there are steps back as well as steps forward. And so it's a tricky thing. And in fact, when I talk with patients now I encourage them to really pay attention to even small signs of progress and even they can be tricky. And the one example that sticks in my mind within this 30-day period at home. Something prompted me to run up a flight of stairs in my home. And I ran up quickly and I realized I was short of breath and I thought, "Oh, that's not good. I wonder if that's something serious or some sign of a problem." And I thought about it for a minute. And I realized I hadn't ran up a flight of stairs in probably six months. And I was de-conditioned from these hospital stays.

And in fact this was quite the physical challenge to my body after what I'd been through. And when I rewired my thinking a little bit, I realized this is actually progress that I can run up a flight of stairs. And sure, I'm going to be a little short of breath given what I've been through. But I reframed it as something that I could view positively rather than negatively. But overall through the whole process, the indicators of recovery and getting better are so gradual. It's like Groundhog Days. It feels like the same day over and over and over again, that I'm encouraging the patients I speak with now, maybe even keep a weekly log. If there's anything that's better this week than the previous week, just make a note of it, because it really helps to see this very slow, incremental progress along the way. Otherwise, it can be pretty discouraging because it just feels like nothing's really changing.

Esther Schorr:

So it sounds like this first period of being home after a transplant really involves a lot of patience by the patient and by loved ones, because as you said, progress is incremental. That you have to be really keyed in on, are there any signs of something going awry, like seriously awry. But if those don't happen, you really have to look at it as maybe a marathon rather than a sprint. That every day is one more mile and that eventually you're going to get to a goal, but you have to be really patient.

Steve Buechler:

I think that's exactly the right metaphor. The best that can happen is a very slow gradual recovery. There's no way, I think, to speed it up. And they warn you about that. They talk about the first 100 days being a major challenge. And that's why you need to have these caregivers throughout the whole 100 days and things can go terribly wrong for the first 100 days. So getting through it with minimal side effects and manageable symptoms is really a pretty good outcome.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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