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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
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
Replies to "Hi Lori, Thanks for the positive vibes on our discharge from the hospital. We have been..."
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Hi Mary! I remember how it felt to finally be home again after hospital life. So I’m sure you and Dane are both sensing relief to be on the other side of transplant now and enjoying the comforts of being back home together.
He has my empathy with the persistent issues following mucositis. I didn’t have excess mucous all the time but certain foods were triggers which then created difficulty in swallowing for a while. My dietician gave me a list of foods that were potential culprits and when I avoided those, such as milk, protein shakes, cheese, etc., it helped. I’m not home right now so I don’t have access to that list in my files. But here is a link to a list of foods from lunginstitute.com which can cause excess mucous to form. https://lunginstitute.com/foods-that-cause-and-kill-mucus/
I also learned a trick from one of my transplant nurses on how swallow pills! Potassium pills were the worst. But some pills you can’t crush so the trick is to not tip your head back when swallowing. We have a tendency to do that when we take meds.
To avoid choking, take a sip and swallow of water to make sure the path is wet.
This next step needs to be done in one smooth motion: Place the pill in the mouth on the tongue. If it’s an oblong pill put it in the long way facing the throat. Take a swig of water, then keeping the chin level to the floor (not tipped up!!) swallow the pill! They go down every time! Keeping the chin level with the floor keeps the throat open to better accommodate the pill.
I hope this helps Dane out with his pills but it may take a little time yet for the tissue to remodel in his throat. Small bites of food, of course and just sips.
I know this is frightening for him to feel as though he’s choking, especially if theres a laryngospasm.
Remaining calm and holding the breath for 5 seconds may treat it. Also when that happens if he can hold his breath and put both arms up over his head that tends to add to the relaxation of the larynx.
His BMT team may have more suggestions when he checks in with them today.
One note I’d like to offer. When he’s able to switch over from mag infusions to oral, he may want to ask his BMT pharmacist if he can take Magnesium Glycinate. It’s much easier tolerated by the gut and has a good absorption rate. My Mayo Pharm was on board with my switch. The mag citrate gave me surprises I didn’t need. LOL.
Wishing him (and you!) continued excellent progress post transplant. He is still considered a babe in the land of BMT. So recovery will be a slow, but steady gain daily. He may have days he feels like a crazy puppy, full of energy and vigor but then crash for 3 days. The first couple months can be a roller coaster but the highs and lows start leveling out. He’s doing great! And Mary, so are you. Being a caregiver is a huge labor of love.
Sending you both air hugs!! Enjoy your new little grand baby and good luck with the return to the clinic today for the followup.