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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)Comment receiving replies
Good morning, Mary and Dane! Ah, I see your husband is an overachiever. Haha Doesn’t surprise me a bit! 😉 Home is the reward! It’s quite a motivator! LOL.
It’s wonderful news that he’s engrafted ahead of schedule and doing so well. Those first two weeks are a joy, aren’t they? Giggle. But it passes and then it’s just a slow recovery period with moments of feeling exuberant like a puppy with a burst of energy and then sleeping for 3 days! Slow and steady wins this race!
Being home will help him recoup faster. That’s what I appreciated about my experience at Mayo where I was an outpatient. I find languishing in a hosptial room, no matter how nice, to be a psychological downer. Had 8 weeks of that with my AML journey. So being able to recoup at ‘home’ (in our hotel suite) was so much more positive and normal feeling. Less like a patient.
I don’t envy you at all being the caregiver. Everything is falling onto your shoulders right now. Believe me, your husband is aware and I’m sure it bothers him greatly. I know how guilty I felt when even little things I used to be responsible for, were now too much for me. But unfortunately the transplant recovery takes all our personal focus and we become pretty ‘me’ centered for the first 2 months. Slowly, Dane will be able to pick up some normal activities.
With the new little bundle of joy arrival, I do want to caution you about visitors and exposures during the next few months when Dane will be extremely vulnerable to infections. Bacteria, viruses, molds and fungi will be the threats for the near future. Getting ill during the first 100 days or so can impact the potential for chronic GVHD issues as an aftermath.
Wish Dane a belated Happy B-day for me! And to both of you, a warm congratulations on the birth of your little grandson! June is an incredibly big month for you and your family with your anniversary, BMT odyssey, birthdays and BIRTH-days! The rest of the summer will be pretty anticlimactic! 😉 Enjoy ‘going home’…be it ever so humble, there’s no place like it. Air hugs to you both.
Replies to "Good morning, Mary and Dane! Ah, I see your husband is an overachiever. Haha Doesn’t surprise..."
Hi Lori,
Thanks for the positive vibes on our discharge from the hospital.
We have been home 4 nights already. Day 22 today. Home health nurse has been here a couple times. He needed magnesium IV. All other labs are stable. Tomorrow we return to NW clinic for the first of the weekly visits with the Stem cell team.
Dane has lots of fatigue, as expected. But he is walking outside at least once a day for up to a mile. He had swelling in his legs from the IV fluids given in the hospital. That’s improving. Little appetite, but he is at least getting some real food in him at least 3 times a day. Protein shakes to supplement. One thing that is bothersome and I’m a little concerned about, is he is having swallowing issues especially with water. He coughs a lot every time he has to drink water or take pills (which is all the time). This seems to be lingering from the mucositis.
His throat anatomy was changed 5 years ago when he had surgery to remove tonsil cancer. He also had radiation to his throat and that left him with a lack of saliva and some difficulty swallowing. Ever since then he has had to take special care with having enough lubrication to get food down but he was managing really well before the transplant. It didn’t interfere in his life or ability to eat whatever he wanted to normally. Until now.
This is the top priority to discuss tomorrow with the team.
It’s hard to see him this way. I know the progress is slow - this is a marathon, is what everyone says. I guess I’m having a moment of reflection now that we are home. My fears creep in (and likely a little PTSD from 5 yrs ago and the difficulty of being treated for throat cancer) when I see how hard this ordeal has been on his body. And I’m just now starting to look beyond the transplant to what lays ahead for us.
I know we can’t live in fear of the future. But some days that’s easier said than done.
Your story, and so many others who’ve gone down this road, is such an inspiration.
Holding my head up with hope,
Mary
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Hi Lori!
Thanks for your positive energy and kind wishes!
We plan to be extremely careful with Dane’s exposure to any possible threats to his health. It’s a nice thing that it’s summer time and he can meet his new grandson out on the porch in the fresh air. Washing hands, surfaces and washing everything he comes in contact with on a regular basis is my mission.
I know he appreciates my role as caregiver and he will do even better when he gets home.
Hopefully just a few more days and we can start the next phase of recovery. His electrolytes were a little off yesterday so they want to get that stable for a couple days straight.
Despite all the stress and how worn out I feel, I remain grateful for every day.
Hope you have a great week!
Mary