Month 22, Part A
I’m way late with posting to this blog for the last several weeks, I had two major illnesses in that time, so I’m going to post 2 different entries roughly corresponding to the two illnesses. I’m also going to post them without much proof reading or editing, because if I don’t, it will be a while longer before they get posted.
A few months ago, I could go 6 weeks with very little happening. Since my last post was at the beginning of the month, one might think there won’t be much to report, but one thought that, one would be mistaken. A whole lot has happened and didn’t post because a) much of the time I didn’t have the energy and b) the amount to write built up so quickly, I became a bit disinclined to tackle such a large task. After about a week of being sick, I took some notes because I knew I’d have trouble remember the sequence. Much of this post is from those notes which were from memory at the time, so I won’t vouch for the precision, but precision may not be as essential as the general idea of how things went. When I last wrote here, I mentioned a cold and how it was reminiscent of one that had turned into infections that wiped me out. This cold did not follow that route, but seemed to manage to wipe me out anyway.
I last posted to this blog on Wednesday, 5/3, and the next night, I had cramping so severe that if I slept at all, it wasn’t until maybe 5 or 6 AM. On Friday, I felt pretty lousy in the morning, sleeping on and off. I can’t remember if I had a fever or if I even took my temperature. I managed to work 2 or 3 hours in the afternoon and then felt well enough to play bridge for about 6 hours in the evening.
Saturday, 5/6 – I woke up febrile and had a fever of about 102.3 most of the day, breaking to below 98 in the evening.
Sunday, 5/7 – I woke up afebrile and starting in the late morning, I started cramping way worse than I ever had before. The cramping was in my hands, my forearms, my back, my stomach, and my neck all at the same time and very intense. It seemed to come in waves a bit and the pain got so bad at times, I felt faint and/or nauseated by it. I took some narcotics (oxycodone) for relief and indeed it seemed to help. It didn’t stop the cramping, but the intensity was not as bad. I called the weekend number for the clinic and they paged the doctor on call who said that the oxycodone was a reasonable way to treat the pain. I asked him about muscle relaxants and he said they really weren’t indicated for cramping. He also said that cramping can be triggered by a virus and that Cellcept (one of the immune suppressants that I am on) can exacerbate it. My fever spiked at 104.2 later in the afternoon. However, out of a fear of being admitted to the hospital, I didn’t tell anyone about it at the time. I since decided that this was pretty stupid and I wouldn’t do that again. I took a couple of acetaminophen and at about 12:30 AM, the fever broke.
Monday, 5/8 – I had a low grade fever (about 101.6) all day along with pretty severe cramping. The BMT clinic called and wanted me to come in so they could check me out, so I went in. They took blood labs, including a culture to check for infections and had me get a chest X-ray. My blood counts were pretty good and my chest X-ray was clear, although the doctor heard a bit of wheezing in my lungs. Because of the wheezing and the fact that I still coughed up sputum occasionally, they prescribed an antibiotic (Levaquin), even though they didn’t think there was an infection. They just wanted to play it safe because an infection could quickly get out of hand. A few of the interesting comments they had were that they were skeptical of the theory of the on-call doctor the day before regarding the cramping being triggered by a virus and exacerbated by Cellcept; that indeed muscle relaxants are more for treatment of muscle injury for example, and that they impair things like driving more than narcotics; and that fevers breaking are indicative of a functioning immune system.
Tuesday, 5/9 – afebrile until late in the day, with a 101.0 temperature at about 11:00 PM. I had pretty severe cramping all day, especially in the afternoon. Although it wasn’t as bad as Sunday, it was bad enough that I took Oxycodone in the morning and afternoon. Ever since this recent illness first struck, I had been very tired and got winded at doing almost nothing. Not wanting to give up because I got tired, and thinking I needed to do more to stay active and not get more out of shape, I decided to bike over to my son’s house which is about a mile away. I figured that no matter how winded I get, a mile is nothing on an efficient machine like a bicycle. I was wrong. By the time I got to his house, I decided it was a mistake. I had to rest for about 15 or 20 minutes before heading back. I made it, but it felt like too much.
Wednesday, 5/10 – my temperature was 99.6 in the morning and about 95.6 in the afternoon. The cramping was pretty bad all day and late in the day, I noticed some mottling in my arms and legs. It went away by the next day and I never did figure out what it was from.
I also had a follow up visit with the pulmonary specialist I had seen in March. He did a spirometry test when I first got there to evaluate how well my lungs are moving air. It involves taking a deep breath and blowing out as hard and long as possible. They normally do it 3 times, but they let me stop after 2 because I was coughing through both of them and felt quite faint after both. I figured the results would be awful, but between the March and May tests, my percent of expected air movement went from 92 to 104!
The doctor also had the results of the CT scan and PFT (pulmonary function test) which he had prescribed, plus the chest x-ray which was done on Monday. The CT scan showed nothing in my lungs that couldn’t be seen in my pre-transplant films (there was some scarring pre-transplant that he said was probably from pneumonia which I’m not aware of having had). He looked up online the chest x-ray that I had on Monday and said it looked great. He even said sort of under his breath that he wished his chest film looked that good.
He was very pleased with the results of the PFT, including an oxygen saturation measure from the ABG (arterial blood gas test) of 92% before an inhaler and 94% after. These are not great levels, but they are acceptable, and are way above the 85% readings I was getting from the finger pulse ox measure, which he says he would have me on oxygen for all the time. He also mentioned that for now, the pulse ox readings via the finger sensor are useless because they are not coming close to measuring the true oxygen saturation.
As far as meds, this doctor said I could stop taking the Qvar (which he had prescribed) after I was past my fever, but he wanted to wait another month or so before starting to wean me off the Advair. He mentioned that he thought Dapsone could be the cause of the cramping (more about Dapsone shortly), and that he would tell my regular BMT doctor that he sees no reason not to continue weaning me off of my immune suppressants.
Thursday, 5/11 – when I first got up in the morning and was urinating, I felt quite faint and very nearly passed out. When I lay down, I was able to recover enough to shower, but then had to rest again. Every time I moved around at all, I got winded, and felt a bit light headed even when I was sitting and doing nothing. I didn’t cramp much in the morning, but it started up around noon. I called the clinic and told them about what was happening and right away they said they wanted to see me (for my second unscheduled appointment that week). I called my wife to take me in because I didn’t quite trust myself driving while feeling so light headed. At the clinic, they did a bunch of tests, but could find nothing wrong, so they sent me home.
Friday, 5/12 through Thursday, 5/18 – I was very tired much of the time. Sleep was unpredictable and erratic. At night, I sometimes slept some, and sometimes I slept almost not at all. During the day, I would periodically need a nap or rest. I continued to get winded very easily. I believe I went to work for a while on Friday, but worked from home the rest of this time.
Love,
Justin
A few months ago, I could go 6 weeks with very little happening. Since my last post was at the beginning of the month, one might think there won’t be much to report, but one thought that, one would be mistaken. A whole lot has happened and didn’t post because a) much of the time I didn’t have the energy and b) the amount to write built up so quickly, I became a bit disinclined to tackle such a large task. After about a week of being sick, I took some notes because I knew I’d have trouble remember the sequence. Much of this post is from those notes which were from memory at the time, so I won’t vouch for the precision, but precision may not be as essential as the general idea of how things went. When I last wrote here, I mentioned a cold and how it was reminiscent of one that had turned into infections that wiped me out. This cold did not follow that route, but seemed to manage to wipe me out anyway.
I last posted to this blog on Wednesday, 5/3, and the next night, I had cramping so severe that if I slept at all, it wasn’t until maybe 5 or 6 AM. On Friday, I felt pretty lousy in the morning, sleeping on and off. I can’t remember if I had a fever or if I even took my temperature. I managed to work 2 or 3 hours in the afternoon and then felt well enough to play bridge for about 6 hours in the evening.
Saturday, 5/6 – I woke up febrile and had a fever of about 102.3 most of the day, breaking to below 98 in the evening.
Sunday, 5/7 – I woke up afebrile and starting in the late morning, I started cramping way worse than I ever had before. The cramping was in my hands, my forearms, my back, my stomach, and my neck all at the same time and very intense. It seemed to come in waves a bit and the pain got so bad at times, I felt faint and/or nauseated by it. I took some narcotics (oxycodone) for relief and indeed it seemed to help. It didn’t stop the cramping, but the intensity was not as bad. I called the weekend number for the clinic and they paged the doctor on call who said that the oxycodone was a reasonable way to treat the pain. I asked him about muscle relaxants and he said they really weren’t indicated for cramping. He also said that cramping can be triggered by a virus and that Cellcept (one of the immune suppressants that I am on) can exacerbate it. My fever spiked at 104.2 later in the afternoon. However, out of a fear of being admitted to the hospital, I didn’t tell anyone about it at the time. I since decided that this was pretty stupid and I wouldn’t do that again. I took a couple of acetaminophen and at about 12:30 AM, the fever broke.
Monday, 5/8 – I had a low grade fever (about 101.6) all day along with pretty severe cramping. The BMT clinic called and wanted me to come in so they could check me out, so I went in. They took blood labs, including a culture to check for infections and had me get a chest X-ray. My blood counts were pretty good and my chest X-ray was clear, although the doctor heard a bit of wheezing in my lungs. Because of the wheezing and the fact that I still coughed up sputum occasionally, they prescribed an antibiotic (Levaquin), even though they didn’t think there was an infection. They just wanted to play it safe because an infection could quickly get out of hand. A few of the interesting comments they had were that they were skeptical of the theory of the on-call doctor the day before regarding the cramping being triggered by a virus and exacerbated by Cellcept; that indeed muscle relaxants are more for treatment of muscle injury for example, and that they impair things like driving more than narcotics; and that fevers breaking are indicative of a functioning immune system.
Tuesday, 5/9 – afebrile until late in the day, with a 101.0 temperature at about 11:00 PM. I had pretty severe cramping all day, especially in the afternoon. Although it wasn’t as bad as Sunday, it was bad enough that I took Oxycodone in the morning and afternoon. Ever since this recent illness first struck, I had been very tired and got winded at doing almost nothing. Not wanting to give up because I got tired, and thinking I needed to do more to stay active and not get more out of shape, I decided to bike over to my son’s house which is about a mile away. I figured that no matter how winded I get, a mile is nothing on an efficient machine like a bicycle. I was wrong. By the time I got to his house, I decided it was a mistake. I had to rest for about 15 or 20 minutes before heading back. I made it, but it felt like too much.
Wednesday, 5/10 – my temperature was 99.6 in the morning and about 95.6 in the afternoon. The cramping was pretty bad all day and late in the day, I noticed some mottling in my arms and legs. It went away by the next day and I never did figure out what it was from.
I also had a follow up visit with the pulmonary specialist I had seen in March. He did a spirometry test when I first got there to evaluate how well my lungs are moving air. It involves taking a deep breath and blowing out as hard and long as possible. They normally do it 3 times, but they let me stop after 2 because I was coughing through both of them and felt quite faint after both. I figured the results would be awful, but between the March and May tests, my percent of expected air movement went from 92 to 104!
The doctor also had the results of the CT scan and PFT (pulmonary function test) which he had prescribed, plus the chest x-ray which was done on Monday. The CT scan showed nothing in my lungs that couldn’t be seen in my pre-transplant films (there was some scarring pre-transplant that he said was probably from pneumonia which I’m not aware of having had). He looked up online the chest x-ray that I had on Monday and said it looked great. He even said sort of under his breath that he wished his chest film looked that good.
He was very pleased with the results of the PFT, including an oxygen saturation measure from the ABG (arterial blood gas test) of 92% before an inhaler and 94% after. These are not great levels, but they are acceptable, and are way above the 85% readings I was getting from the finger pulse ox measure, which he says he would have me on oxygen for all the time. He also mentioned that for now, the pulse ox readings via the finger sensor are useless because they are not coming close to measuring the true oxygen saturation.
As far as meds, this doctor said I could stop taking the Qvar (which he had prescribed) after I was past my fever, but he wanted to wait another month or so before starting to wean me off the Advair. He mentioned that he thought Dapsone could be the cause of the cramping (more about Dapsone shortly), and that he would tell my regular BMT doctor that he sees no reason not to continue weaning me off of my immune suppressants.
Thursday, 5/11 – when I first got up in the morning and was urinating, I felt quite faint and very nearly passed out. When I lay down, I was able to recover enough to shower, but then had to rest again. Every time I moved around at all, I got winded, and felt a bit light headed even when I was sitting and doing nothing. I didn’t cramp much in the morning, but it started up around noon. I called the clinic and told them about what was happening and right away they said they wanted to see me (for my second unscheduled appointment that week). I called my wife to take me in because I didn’t quite trust myself driving while feeling so light headed. At the clinic, they did a bunch of tests, but could find nothing wrong, so they sent me home.
Friday, 5/12 through Thursday, 5/18 – I was very tired much of the time. Sleep was unpredictable and erratic. At night, I sometimes slept some, and sometimes I slept almost not at all. During the day, I would periodically need a nap or rest. I continued to get winded very easily. I believe I went to work for a while on Friday, but worked from home the rest of this time.
Love,
Justin
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