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Michael CassavaughParticipant
Esperanza,
I’m sorry it’s been so hard on him, and I’m sorry he’s declined hospice- they have been amazing. We spend 3 weeks on home hospice care and Monday it just became too much and I admitted him to hospice house. The last 12 hours he’s kind of reawaken. He hasn’t talked much in 5 days and all of a sudden he’s communicating clearly… But he hasn’t eaten in 6 days and hasn’t had much in the way of fluids. He’s lost the ability to walk and had been bed ridden since Saturday basically.
I know the end is near- I hope for his sake it comes quickly because he really is miserable. I’m afraid with this “reawakening” that he could hold on for weeks longer…
Anyways, enjoy the time you have and I hope your grandfather finds a way to be as comfortable as possible!
Michael CassavaughParticipantAmy and Pat- thank you both. He’s still putting up a fight but he’s struggling more and more. Today he only spent 90 minutes out of bed and tonight he coughed up some blood. I pray the end comes quickly- he’s so unhappy being a burden and has told me goodbye a hand full of times now.
Michael CassavaughParticipantWe started with a local oncologist and ended up seeking a second opinion with Moffitt Cancer center- who actually found the p53 variant that made his case of MDS severe. Best thing we did. We also started emailing his doctor with questions and typically received answers with in a few days. We haven’t had an issue with results, they have printed them for us weekly so we could track progress- which was great when things were improving but not great on the decline. I question how much good having the results in hand every week was for him, he really felt good/bad based on what he read, not how he truly felt
Michael CassavaughParticipantSW Florida has had a blood shortage, so red blood has only been given when he drops below 7 and only a single bag. Platelets have to be less than 10 to get a bag.
He stopped transfusions about 2 weeks ago and joined home hospice care- the transfusions were lasting the week but he wasn’t feeling well and was tired and not eating much. It’s a tough decision to decide to stop, but in his case the transfusions were keeping him alive but no longer allowing any quality of life.
(79 year old high risk mds with TP53 gene variant)
- This reply was modified 3 years ago by Michael Cassavaugh.
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