Day 42:
Clinic in the morning was met with great news. My bone marrow is officially 100% donor! I didn't realize it would be this soon before I was completely donor, but my NP informed me it was to be expected. I complained about the day before, how I felt miserable and nauseated all day, and my NP thinks it probably has something to do with the oxycodone I take at night to help with the headaches from the cyclosporine. I told her I would try not to take it all and see if it helped with the fuzzy headedness I usually feel the day after. She also told me my cyclosporine levels were too high and reduced my dose - another possible contributing factor to the fuzziness I had been feeling. Hopefully lowering the doses of both medications would make me feel better. Spending half the day just trying to feel decent and normal has become quite old.
Apparently, I had started to drink too much plain water and was told to incorporate a power drink of some sort to help improve my electrolytes. What a complete turn about. Before I couldn't drink enough water to stay hydrated, and then I was drinking too much and it was flushing my system of needed nutrients.
Day 43:
I was able to do some winter clothes shopping and attend a church service at night because I felt very well and strong that day.
Day 44:
I spent most of the day at home feeling very fatigued but blamed it on the shopping trip from the previous day. It is amazing how I can go from feeling 'great' one day to being completely wiped out the next. Each day holds its own surprises. My stomach has settle much more than before and the esophagus pain has definitely diminished.
Day 45:
Started the day with a routine clinic visit but ended up spending all (until 5:00p) there. My doctor wanted to give me an immunity booster called IVIG and it was infused for an hour. The immunity booster was to be given about once a week and it's supposed to help push my immunity along and it get developing more. No side affects were felt from it but because it is a human compound I was given a good dose of Benadryl and Tylenol to ward of a reaction. Benadryl = nap time.
My eye appoint to check into the 'floaters' I was seeing was today and I received good news from the doctor. Apparently the eye is full of a jelly like substance that the medication I'm on can solidify. The 'floaters' are just solid jelly and will eventually go away once I stop the medications. I was also told my retinas were in good shape and there was no damage to the eye itself. The doctor even told me my vision was 20/20 and I was surprised to hear that. I had worn glasses for years but stopped about two years ago. My eyesight improved when I stopped wearing glasses!
After the eye appointment I was told I would need to receive blood since by RBC dropped to 24 which meant I had another four hours of clinic visit in front of me. I sent my mother (caretaker) off to run errands and go relax at the apartment since there was no sense in both of us sitting around. Patients are given a big recliner type chair to sit in while caretakers are stuck in a simple upright chair that are not very comfortable. They hit me with another round of Benadryl as a premed for the blood so I spent the first two hours asleep.
Another concern was my low sodium levels. I was not to drink plain water at all and needed to drink energy drinks to improve my electrolyte counts. I was told to salt everything I ate and find salty things to eat too. I never thought I would have a doctor advise me to eat more salt! Needless to say, it was a very long day at the clinic.
Day 46:
I was asked to go back to the clinic to check my sodium levels again. A quick visit showed my sodium level rose a little but still needed to salt everything. Felt good all day and made a trip to a few stores. Started feeling puny by the end of the day and ended up vomiting breakfast and lunch. A call to the after hours clinic was made and I was advised to visit the clinic in the morning for a check up.
Day 47:
Felt much better by morning and the clinic visit at 9:00 was pretty much what I expected. They made sure I looked and felt okay and advised I should continue taking Reglan, a motility drug that helps move food from the stomach to the gut. I was able to make it to Sunday morning church services too and felt good the rest of the day.
Day 48:
My regular clinic was still to be kept for Monday, even though this was the fourth time in as many days that I had to go in. Sodium levels were still improving and my counts were decent except for low platelets.
I was to meet with a physical therapist at 2:00 for initial meeting to set a baseline for my strength level, and stamina. I did a few walking exercises and was measured for my current flexibility. PT was to be twice a week for an hour and to consist of moderate exercises and stretching in a group setting with other transplant patients. The meeting went well although my blood pressure dropped a bit and I became weak and dizzy.
We went to a few stores after the PT and I noticed I became very weak shopping in the afternoon and started to feel very weak in my muscles and fatigued in the rest of my body.
Day 43:
I was able to do some winter clothes shopping and attend a church service at night because I felt very well and strong that day.
Day 44:
I spent most of the day at home feeling very fatigued but blamed it on the shopping trip from the previous day. It is amazing how I can go from feeling 'great' one day to being completely wiped out the next. Each day holds its own surprises. My stomach has settle much more than before and the esophagus pain has definitely diminished.
Day 45:
Started the day with a routine clinic visit but ended up spending all (until 5:00p) there. My doctor wanted to give me an immunity booster called IVIG and it was infused for an hour. The immunity booster was to be given about once a week and it's supposed to help push my immunity along and it get developing more. No side affects were felt from it but because it is a human compound I was given a good dose of Benadryl and Tylenol to ward of a reaction. Benadryl = nap time.
My eye appoint to check into the 'floaters' I was seeing was today and I received good news from the doctor. Apparently the eye is full of a jelly like substance that the medication I'm on can solidify. The 'floaters' are just solid jelly and will eventually go away once I stop the medications. I was also told my retinas were in good shape and there was no damage to the eye itself. The doctor even told me my vision was 20/20 and I was surprised to hear that. I had worn glasses for years but stopped about two years ago. My eyesight improved when I stopped wearing glasses!
After the eye appointment I was told I would need to receive blood since by RBC dropped to 24 which meant I had another four hours of clinic visit in front of me. I sent my mother (caretaker) off to run errands and go relax at the apartment since there was no sense in both of us sitting around. Patients are given a big recliner type chair to sit in while caretakers are stuck in a simple upright chair that are not very comfortable. They hit me with another round of Benadryl as a premed for the blood so I spent the first two hours asleep.
Another concern was my low sodium levels. I was not to drink plain water at all and needed to drink energy drinks to improve my electrolyte counts. I was told to salt everything I ate and find salty things to eat too. I never thought I would have a doctor advise me to eat more salt! Needless to say, it was a very long day at the clinic.
Day 46:
I was asked to go back to the clinic to check my sodium levels again. A quick visit showed my sodium level rose a little but still needed to salt everything. Felt good all day and made a trip to a few stores. Started feeling puny by the end of the day and ended up vomiting breakfast and lunch. A call to the after hours clinic was made and I was advised to visit the clinic in the morning for a check up.
Day 47:
Felt much better by morning and the clinic visit at 9:00 was pretty much what I expected. They made sure I looked and felt okay and advised I should continue taking Reglan, a motility drug that helps move food from the stomach to the gut. I was able to make it to Sunday morning church services too and felt good the rest of the day.
Day 48:
My regular clinic was still to be kept for Monday, even though this was the fourth time in as many days that I had to go in. Sodium levels were still improving and my counts were decent except for low platelets.
I was to meet with a physical therapist at 2:00 for initial meeting to set a baseline for my strength level, and stamina. I did a few walking exercises and was measured for my current flexibility. PT was to be twice a week for an hour and to consist of moderate exercises and stretching in a group setting with other transplant patients. The meeting went well although my blood pressure dropped a bit and I became weak and dizzy.
We went to a few stores after the PT and I noticed I became very weak shopping in the afternoon and started to feel very weak in my muscles and fatigued in the rest of my body.
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