@bcrandall and @djcrandall Hi again and welcome dj so glad your both here on connect. Some advise i would give both paient and caregivers is to be paient with each other. Some of the things i remember most were how much stress can develop over little things. Of course myself was dealing with the pain and trying to always have the awareness to either clutch the pillow or I had a new device they were just starting to use it was a strap-type item you could push 2 handles together to put the pressure on your chest. It worked well and it was always there for a quick grab. The pain was also an ongoing thing if i waited to long to get the meds going i would have to deal with the pain usually for about 45 minutes before it would kick in. I also was getting concerned that i may be getting hooked on oxycodone so i tried to back off and alternate with Tylenol but if i didn't take it regularly the pain would get a.little intense.
The other thing that really botherd me was the lack of good-tasting food. The meds really caused a problem there and i know it bothered my wife to make a nice dish and me not like it. Some of my favorite foods just tasted bad. And some even made me nauseous it seemed mostly meats and salads were the worst. I could handle se soft food like mashed potatoes and podding well. Even eggs were not easy to eat it was weird the things that i loved so much now not desirable any more. Ot did pass and i think it was mostly the prednisone which is rather funny simce they warned me it.would increase my appetite but.for.me.it.did the opposite.

Now mine was in Jan 2018 so covid was not an issue but my wife was adamite to maintain a clean environment especially at. the hotel we stayed at we would not do maid service except to get changes of bedding and towels.
One other thing that i remember well was how weak i was. Just taking a shower would get me really.tired and even things like putting my socks on was a chore. But its important that he does as much as possible and being my wife was a retired nurse was actually a blessing. She was used to caring for the physically challenged and knew how importatant it was to push to get better. I remember one evening especially how you can go to far. My wife was at the store getting some supplies and i really wanted to get some things done on the computer. It was in a suitcase on the floor and not thinking i kneeled down to get it. Well i could not get myself back up and luckily i was near a closet and used a low bar you hang clothes on to pull myself up. Things that were no problem even a few weeks ago were difficult. Realize in my case i was hospitalized for about 6 weeks prior to my transplant and had loss a lot of muscle mass. Super important to get to physical therapy as soon as the Doctors ok it. Well there a bit of the things i remember. Everyone is different tho so be ready to take life a little different for now. By the way i now almost 3nyears later walk on avg 4 miles a day and can do more than i could before the transplant. Eat right and get plenty of exercise and the skys the limit. Please keep us updated and as he feels up to it I would love to chat more on the little things.
Dana

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