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.
Good morning Lori,
Thanks for the swallowing tips! He is already trying some of them. He has a swallow study scheduled for next week. His regular doc inaction so we saw a NP in clinic yesterday. All counts are stable and in the normal range. I will be giving magnesium IV every other day for the next week.
I will ask about the oral magnesium option you suggested. As of now they have prescribed oral magnesium stearate with protein that he hasn’t started yet.
It’s the dysphasia - coughing and swallowing issues, especially with more slippery liquids - that continues to be our biggest challenge every day. It’s hard enough to have an appetite but when he starts coughing because the liquid isn’t going straight down his throat, that brings on a gag reflex 🤦🏻♀️. Looking forward to getting the swallow study done and getting him help with this. Hope the healing of his throat tissue also improves it as well.
He hasn’t had any big energy days like a new puppy yet. He does get up and walk up to a mile every day so that’s been fairly steady. Today is day 24 so he’s still a newbie.
One day at a time.
Enjoy the weekend.
Mary