Day 35:
Had a clinic visit at 10:00a and felt sluggish and nauseated the entire time. I skipped doing a bag of IV fluids at home that morning because I knew I wouldn't have time to finish the bag before I had to leave for clinic. I didn't feel dehydrated but after vomiting the previous two days, I'm sure my body needed more fluids. Informed my NP that I still saw 'floaters' in my eyes and that my UTI symptoms had finally started improving. I was still struggling with the need to use the bathroom often but the pain had definitely diminished.
My NP advised we would go ahead with an endoscopy - a scope down my throat to take a look at my stomach. My stomach was aching up a storm and my esophagus was hurting too. I was given a dose of phenagren in clinic because of the persistent nausea and it left me feeling very tired and drowsy. Scheduled after my clinic was a one time breathing treatment to prevent a certain type of pneumonia and another chest x-ray.
After clinic, around 1:00p, I went to have the breathing treatment done and waited and slept in the waiting room for an hour. By the time I was back in the small room for the treatment, I knew I was in trouble. I felt very weak and was sitting down waiting on the respitory technician to start the procedure when I told her I needed a wheelchair and I needed to go home. She stepped out to find a wheelchair and I knew I was about to pass out. There was a small examination table in the room and I made an attempt to climb on it but never made it. I slid down the table in a dead faint and was told later my eyes had rolled back into my head, I had stopped breathing for half a minute, and I had made snoring/gargling noises in my throat. When I came to, I was spread eagle flat on my back with the technician calling my name and trying to get me to wake up. A rapid response team was called and two EMT's were there and started testing all my vitals including my blood sugar. I was eventually put on a stretcher and wheeled to the emergency room. It was around 2:00p.
A flood of nurses and doctors from the ER showed up, of course, to ask questions and check on me. They eventually hooked up a bag of fluids to just get me hydrated. I knew I was going to have to be check back into the hospital on 11 North but it took over eight hours to get processed from the ER to my room. I had not eaten all day because of feeling poorly in the morning. Had we known I would have been waiting in the ER for so long, my mother would have brought me food much earlier, but we kept thinking we would be moved to a room quickly considering my condition. As it happened, I didn't eat until 9:00p that night and still had to wait until 10:30 for a transport to wheel me up to the room. It was a very long and stressful day and even though I had to be re-admitted to the hospital, I was just glad to be in the safe sanctuary of 11 North.
Food and hydration were the key to my quick recovery and I was able to shower and get into bed around midnight.
Day 36:
After I had settled in my room, I was told my red blood count had dropped from 27 in the clinic to 23. That was probably another reason I had passed out. Around 2:15a, they started transfusing blood and I received two units. The transfusion lasted until about 6:00a and thereby much sleep was not to be had due to the constant testing of vitals.
I was also told I would have the planned endoscopy that day and could not eat or drink after midnight. Eating in the morning was not a problem for me, but having not eaten much the day before, I knew I needed food in my body to feel better. I was also told I wouldn't be released from the hospital until after the scope. Around 2:30 in the afternoon, the EDG people, who had been to see me a million times, it seemed, told me I didn't have enough platelets for the scope and it would have to be pushed back until the next day. Great. First order of business - my mother went to the cafeteria and got me a grilled chicken sandwich and fries. I didn't even care if I should eat something that heavy. I was hungry and needed food. Thankfully, it went down okay and I felt much stronger.
At this time, I had a small mental break down. I believe I had done fairly well mentally with the whole transplant ordeal, but having been admitted to the hospital for the third time, the constant state of my body not functioning and processing food as it should, left me feeling very down. The long days waiting in the hospital to have a simple test done were hard mentally. Not one to cry much, I found myself very weepy and downhearted. I did my best to distract myself from myself for the rest of the day but looking back, I can say that stint in the hospital was not a mentally good one.
Day 37:
I received platelets early in the morning to prepare for the endoscopy and was told it would happen around noon. The transport person finally came to get me around 1:30 and I was wheeled down to the gastrology department. I was put in a bed in a curtain-divided room with several other people to wait my turn. An hour and a half later, my turn was up and I went under sedation for the surgery. I felt no pain or discomfort upon waking from the endoscopy and actually woke up hungry and ready to eat.
Once back in my room, I had to complete the breathing treatment that started the whole mess and it was a fifteen minute procedure wherein I sat on my hospital bed with a sheet of plastic boxed over me and breathed into a mouth piece. My discharge papers were handed to me and I was finally allowed to go home. Thank you, Jesus, was all I can say to that.
My mom and I arrived home and ate dinner, I had a small nap, and then we went to a Hallmark store and Target. I needed to get out and be among the living.
I started a bag of IV fluid that night and noticed I had a weird headache develop at bedtime. Cyclosporine was a 10:00p medicine and I believe it was a combination of that drug and high blood pressure that triggered the headache. During my first hospital stay, my blood pressure always seemed to spike at night. Oxycodone took care of the headache and I was thankful to be able to sleep in a normal bed.
Day: 38
The night brought with it more esophagus pain. Just laying in bed and swallowing would cause a low pain in my esophagus and every time I moved or got up to use the bathroom, the pain would flair up. Knowing it was my stomach still not behaving correctly, I medicated as I was able.
I had clinic that morning at 10:00a and was told the results from my EDG were back and showed only redness in the stomach - no ulcers or evidence of GvHD. The results from my BMX on Sept. 14th were still pending.
Mother and I made a quick trip to Publix - a local grocery store and I spent an easy night at home. My stomach, for whatever reason, decided to feel a million times better and I was able to eat and drink. Not only drink, but drink bottles of water. Before, sips of water would just sit on my stomach and ache but now I could drink larger quantities and it didn't hurt. This was a major improvement as it is impossible to become stronger and healthier if you can't do the most common things in life - eating and drinking.
Day 39:
Felt awful in the morning as was par for the course. I did get out to three different stores that day and could tell it was helping me more mentally to be out and about than it was probably physically. After the excitement from earlier in the week, the last thing I needed to complain about was boredom. But after 39 days of feeling awful and listless, life seemed to be on a hold. Strength and energy were welcomed back anytime.
Day 40:
I spent the morning at the clinic with just a quick check in. Having received blood and platelets the day or two before my counts were good although I was given a few potassium pills to help that level. The evening was spent at home - working on a puzzle and keeping myself distracted from the mundane!
Day 41:
Stayed home all day long and felt miserable. Nauseated and I felt as though my head was fuzzy and full. A very long day spent trying to feel halfway decent. One I would not like to repeat any time soon.
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