Husband is 9 months post allo BMT and still struggling

Good morning, @wife2025. No, you’re not blowing any of this out of proportion. Being the caregiver for your husband, who has had a bone marrow transplant, already puts you in the position of being hyper-vigilant to any changes in his health. Plus being a nurse gives you some added insights as to what is and isn’t ‘normal’. Ok, for clarification, you’re right, nothing is ‘normal’ right now. Especially in the first year post transplant. But there should be a gradually increasing sense of stability, predictability and eventual lowering of the guard, so to speak.

Continued fatigue and shortness of breath isn’t normal for 9 months post BMT. It IS perfectly ‘normal’ to have a string of great days and then maybe a day or two of needing to just sit and veg to recoup. At least in my experience and chatting with other BMT friends. We equate it to feeling like puppies: All hyper with the zooms and then just crash.

But, personally, I feel you’re absolutely justified in being concerned with this shortness of breath, especially considering he’s has some issues with fluid around his heart. This certainly could be happening again and as a nurse, you know how critical it is to be evaluated. If his BMT team or cardiologist aren’t on board to at least check to see if there is fluid, there’s nothing to stop you from a visit to the ED. At least he’d get a responsive team! How is his hemoglobin level?

With a BMT, there is always the risk of a graft vs host reaction as well. Any source of inflammation is a potential trigger. So it’s also important his lungs are checked, along with his heart.
Has your husband had any issues with GVHD? What was his latest chimerism?

@loribmt thank you for your response. His Hemoglobin last week was 10.9. His last chimerism was 100%. The only sign of GVHD that he has experienced is some mild skin rash on chest which cleared with use of a steroid cream. He has not had any rash lately. He did see a pulmonologist for discussion of his post transplant PFT results … he was encouraging and said that he has seen worse PFT results with post transplant patients and he would continue to monitor. If needed, there are medications he can add but feels that my husband will improve. We are planning on contacting the cardiologist tomorrow to report symptoms. I do want to say that he did “more” activities this week then he has in the past and may have overdone it but it’s always hard to know. But still plan on contacting cardiologist tomorrow. I knew this transplant would be hard but all the complications have made it super hard and I always feel like I’m waiting for the other shoe to drop. I pray for some normalization soon. Thank you again

@wife2025 I know from my own experience with a BMT that recovery, even into the next year can sometimes feel like a roller coaster ride with health swings. The ‘ride’ does level out with fewer crises and surprises as time goes by.

Having the 100% Chimerism is excellent. With your husband’s hemoglobin of only 10.9 though, I wonder if that might be adding to his fatigue. For adult men hemoglobin is usually between 13.5 and 17.5. I still think it’s a really good idea that you’re contacting his cardiologist today. It’s better to be safe than sorry if you’re concerned he’s retaining fluid around his heart again.
Besides his shortness of breath is there any discomfort when breathing lying down? Or chest pain?

@loribmt No chest pain. No problems lying down. Appetite is good. No sudden weight gain you would see with heart failure. He definitely moves slower, more deliberate. Says he is not dizzy and not in pain. His thought processes are slower, I’m not sure if that is age related or transplant or chemo fog… or all above. No signs of infection. This has definitely been a roller coaster, just when we think we are leveling out, something pops up. Adjusting meds today per cardiologist and go from there. Thank you

I get it. It’s been a ride for us as well. My husband had his BMT in September for AML. He didn’t do well mentally with the long hospital stay. Couldn’t sleep, couldn’t walk around due to their safety protocols. Needed a staff member to walk him even tho I was there. Didn’t understand that. After we got him home, everything looked great, then he got a lung infection, spent weeks on heavy pain meds bc of the chest tubes then had to detox. Lost so much weight he couldn’t stand on his own. Got through 2 weeks at a rehab hospital then 2 1/2 months of rehab. He gained back 25 pounds. Now we find out the transplant has stalled- they detected some blasts in his bone marrow biopsy so back to chemo. You are right. It’s like living a nightmare. Just when you think it’s going ok. I don’t blame you for worrying. I don’t think you are over thinking. I wish I knew half of what you know. If we don’t advocate for ourselves and loved ones who will? My husband also had fluid around his heart, has had echocardiograms, MRI’s. That is slowly clearing up, but it sticks in the back of your mind. What if it comes back? His body has been so busy trying to heal. We both get really apprehensive when we have doctor or clinic appointments, it’s like “What are they gonna find now?”
So it’s an adventure. Trying to read between the lines with the doctors. Not panicking when his picc line leaks. Trying not to think the worst with every odd grunt he makes. Living from blood test to blood test. It’s not easy.
I hope your husband recovers fully. I dream of when mine is cancer free and all this is in the rear view. I’m going to make the biggest bonfire of all the clinic reports and med supplies I have accumulated.

Hi @rsbyko You and your husband certainly have my empathy for what he’s been experiencing post BMT. As his caregiver I know you’re right there sharing the roller coaster ride with him. Most of the stress falls on your shoulders as you worry about every little detail. Your husband, as the patient, is pretty much along for the ride as he copes with recovery, following the instructions of his doctors and BMT team. Both of you have tough jobs. I watched my husband age while he was my caregiver for the same AML/BMT journey. It was taxing. But please hang in there! The rewards of having a 2nd chance at life can make the struggles of the first year or so worth the effort.

I am sorry to hear that he is showing signs of the blasts returning. You mentioned he’s now back on chemo. What are the results of his latest chimerism?

Last I saw it was in the 90’s. For whatever reason I can see all his test results but not that. Doc says it’s the “ interface.” So we know it took. They think weaning him off the anti rejection medication will allow the transplant to take over faster. He did not have any graphvhost symptoms which I thought was odd but maybe was a sign the new cells needed a jolt. So fingers, toes and eyes crossed things start clicking. His other numbers are ok, he started to improve with his WBC and hemoglobin numbers but now they are in flux with the chemo. We will finish the first cycle this week then a bone marrow biopsy in 2 weeks when I hope we see no blasts and better numbers. Thanks for the encouragement.

Hi. @rsbyko I was just going to ask that question… wondering if your husband was still on his anti-rejection meds and if he’s had any signs of gvhd. We do need to have a graft vs host (or graft vs leukemia) effect with the new immune system. Often allowing the new cells to be a little more aggressive may be all it needs to boost the new immune system into the last nudge to get that chimerism up to 100%. Also the transplant doctor may elect to do a DLI. (Donor lymphocyte infusion), which is another infusion of cells from the donor. You can read more about that here: From Cleveland Clinic regarding DLI
https://my.clevelandclinic.org/health/treatments/10343-donor-leukocyte-infusion
Actually, fellow member @dwolden posted a discussion for her husband with that experience of DLI. This was several months ago and it made an enormous difference in his recover.
https://connect.mayoclinic.org/discussion/dli-after-allo-transplant-maintenance-chemo-after-transplant/
I’m sure this feels like a setback and a bit disappointing for your husband to have another round of chemo. But it’s just a little bump in the road. It’s not unusual for patients with AML who have undergone a BMT to have maintenance chemo for a little while post transplant. AML can be a problem child depending on the mutations driving the disease. Some of those mutations allow for the cancer cells to hide out in the body, basically going dormant during chemo. Later, when they ‘feel’ the environment is safe, they can reemerge. That’s when maintenance chemo can continue to do a sweep until those rogue cells are gone!

So please, try not to be discouraged. Your husband is still in a very early period of recovery. There will be ups and downs, twists and turns. I went through my own issues. I remember telling my husband three things people need to have with BMT… A sense of humor, a sense of adventure and the ablity to just roll with the punches. Because for the first year or so, not much is predictable. It was always said in jest, but honestly, every morning we’d get up and my husband would say, “Well, let’s see what fresh hell awaits today.” LOL. Remember the TV show, Fraisier? Dr Crane used to say that.
Anyway, one day at a time and life eventually evens out. In the meantime, doctors and medical teams become your family members, life doesn’t have a definitive ‘new normal’ quite yet, and most of your trips are back and forth to a doctor’s office. But, there is life on the other side of transplants that can make these early efforts and sacrifices worth pushing forward!
I hope you’ll keep me informed with his progress! My heart goes out to him because I know none of this is easy.
When was he diagnosied with AML? Do you know what mutations he had with his diagnosis?