(My days are less eventful so I will be posting a week's worth of posts at a time)
Day 21:
Woke up feeling very weak and tired. I met with the doctors and they decided to do more to get my bowels to move. They also ordered a x-ray to make sure GvHD or any type of blockage wasn't interfering. During the x-ray, I became very light headed and started to black out. Once back in my room, my nurse took my blood pressure and I was orthostatic - suffering from low blood pressure. They gave me a full bag of IV fluid and I immediately felt much better. I was simply dehydrated. Eventually, my bowels kicked in and I was so thankful. The nurse had threatened a suppository. No thanks!
My mouth is almost completely healed and my stomach feels a lot better. Fluids were increased that night and I spent a restless night going to the bathroom often.
Day 22:
Received platelets in the morning because my counts had dipped a bit - down to 17. WBC was 1.1 and my neutrophils were .500. I was told it was normal for counts to dip and that it should be expected. My stomach started behaving again and it feels almost normal. If all goes well, I'll get to go home tomorrow. A week after having been re-admitted, I was a bit apprehensive. There was security in having the nurses and medicines at instant disposal.
I was switched back to the the pill form of cyclosporine in preparation for my return trip home. I felt well enough to walk for half an hour. Around 8:00, I noticed a rash turned up on my arms but had dissipated by 9:30. The nurse was also concerned that my blood pressure had went up. It seems to go up in the evening hours.
Day 23:
Discharged today with news that my counts had recovered a bit. They were high enough that I didn't need to have blood product. Made it to the apartment around 1:00p and and snuck in a nap. Made my first trip to a store in almost a month that evening and it felt good to get out among people. My stomach is still achey and not back to full working order but I felt a hundred times better than the week before when I was released.
Day 24:
Spent the evening before in a real bed even though sleep was difficult. I spent the night going to the bathroom and had a sneaky suspicion I had developed a bladder infection of some type.
My first clinic appointment was today and I had to be there at 8:00a for a blood draw and to check my cyclosporine levels. I didn't need any blood products but I did need magnesium and it was administered through an IV over an hour. My first visit to the clinic was what I expected; a long wait. I informed the nurse practitioner of my constant need to use the restroom and they gave me a prescription to help treat the symptoms. The urine sample I had given to test for infection would take several days before results would be available but I was so uncomfortable I needed something to help me cope until they could get a diagnosis. I also had to have another chest x-ray. No big deal there.
After the clinic, I met with a lady that offered a free wig and tried several wigs on. I choose to be a brunette!
Day 25:
Today was my first full day at home and it felt good to not have to go to a hospital. The mornings are usually spent nauseated but I felt better around 1:00p. My symptoms of a UTI worsened around 7:00p and I was fully miserable. A call was made to the after hours clinic to see if I could take another pill to help the symptoms but was advised I was already taking a high dose. The doctor on-call advised a take oxycodone to help with the pain.
Day 26:
Woke up extremely nauseated and ended up vomiting my early morning medications by 8:30a and my dinner from the night before. I was so hoping my stomach would have corrected itself but apparently it had not.
I arrived early at the clinic and was told my counts had really jumped. WBC 2.3, RBC 35, Platelets 25, and my neutrophils were in the thousands. I did not need blood products but I did need more magnesium. Cyclosporine is known to lower magnesium levels and the low level left me feeling like I had flu-like aches in my bones.
My urine sample came back negative for an infection but I was still in misery so I was also given another prescription for my UTI symptoms. The nurse practitioner believed I had what is known as the BK virus. The RX they gave me wasn't a cure for the virus but was the only go-to medicine to treat the symptoms. I was told only time and higher WBC counts were cure it. The agony.
Day 27:
No clinic visit today and I spent most of the day praying the drugs would help my UTI symptoms and sleeping.
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