Month 23

On Monday, I had my regular clinic appointment. My regular doctor was seeing inpatients in the hospital, so I saw another doctor whom I have seen before and liked. Also, I found out my PA, whom I liked very much has left and won’t be back. Apparently, her brother was killed in a pedestrian vs. SUV accident in Manhattan and she left to take over his business there. I’m trying to find a way to contact her to express my condolences and say goodbye. Aside from these things (and having to change a flat tire in the rain), the appointment went well.

My counts were as follows:

..... previous current normal

..... -------- ------- ---------

WBC.. 5.6 .... 4.8 ..... 4 – 11

Hgb.. 10.0 ... 12.1 ... 14 – 18

Plt.. 284 .... 262 ... 150 – 400

These are good counts – my WBC is down a little (probably because I’m not sick), and my hemoglobin is up a bit which is good. Also, my pulse ox reading was 97 again which is really good for me (although in the low normal range). I talked to this doctor about methemoglinemia (see last post about problems with Dapsone), and while he had heard of it, he said it is very rare and is the kind of thing they have to study for board recertification tests, but hardly ever see.

Everything else he looked at he was happy with, so he said I could stop taking Cellcept (an immune suppressant)! That leaves 5mg of Prednisone as my only immune suppressant left (and it is a very low dose)! I asked him when we could think about reducing my other meds, which are really just prescribed because of the immune suppression, and he said I could stop taking the penicillin. That leaves me with just the Prednisone, Acyclovir (anti-viral), and Protonix (for stomach, etc.).

There are many milestones in this process. For example, in August, I will hit my two year anniversary (which will require another bone marrow biopsy/aspiration). But of all the milestones, getting completely off of my meds will be one of the biggest, probably second only to surviving the transplant and coming home, and it may happen next month when I go in again. I’m not sure how I will celebrate, but I will.

A couple of other interesting things the doctor said, which I am writing here partly for my own sake:

• He warned me that people that are sensitive to Dapsone are sometimes sensitive to Bactrum (a fairly common antibiotic) as well.
• I mentioned to him that my taste was still not fully returned and wondered if getting off meds might help with that. He said that while one can never rule out meds for something like that, the more likely cause of the taste problems is still the chemotherapy, which he says often causes taste problems and that some people recover the taste quickly and some take a very long time. He says two years is not unheard of. (Did I just end a sentence with a preposition or not?) I still believe that my taste is improving, albeit VERY slowly.
  

Finally (for now), I woke up early this morning (3 AM) needing to blow my nose like crazy. When I got out of bed a few hours later, my sinuses were still kind of full and I felt a little crummy, and it continues into the afternoon without getting much better or worse. I sure hope I’m not heading for another cold virus wipeout like I have a couple of times already this year.

Until next time, love,
Justin

Month 22, Part B

Thursday, 5/18 – I fell asleep mid morning and woke up at about 12:30 with a growing feeling of nausea. The nausea got worse through the afternoon, and when my wife got home for school at about 3:15 (and was planning to leave in a very short while for a three day conference she had been helping plan for), I really felt like vomiting, but I resisted because I didn’t want her to feel like she should stay home with me and not go to her conference. When she left, I felt so bad that I tried to vomit, but I failed. However, I did start in with some diarrhea. I soon fell asleep again and slept for about an hour, after which, the nausea had subsided quite a bit, although I had no appetite at all. The diarrhea continued for the next 2 days.

Sunday, 5/21 – No diarrhea with a small amount of solid stools. My appetite started to return, although all food continues to be repulsive to some degree because everything tastes terrible to me. My taste has been off since my transplant, but this is much worse than it’s ever been before.

My pulmonary doctor called in the evening (from a pulmonary conference in San Diego as it turns out) and said he had been thinking about my case and decided that Dapsone might be the cause of my low pulse ox readings because it can turn the skin blue. He said I should stop taking the Dapsone, and since I really dislike taking any meds, I readily complied.
I had been taking Dapsone since the transplant, and was never sure what it was for. The pharmaceutical sheet that comes with the prescription says “Dapsone is used to treat leprosy and other skin diseases.” When I later asked my other doctors what it was for, they said it is to prevent a type of pneumonia they refer to as PCP (pnuemocystis carinii pneumonia), which is an opportunistic disease that is one of the more common causes of death for HIV/AIDS patients. They are quite wary of it in all immune suppressed patients. I did some research on my own and found out that Dapsone can very rarely cause methemoglobinemia.

WARNING – this paragraph contains a simplified, but somewhat techinal explanation of methemoglinemia which I got at http://www.emedicine.com/EMERG/topic313.htm. You may or may not be interested. Normally, hemoglobin (red blood cells) contain iron molecules in a state that they can combine with oxygen by sharing an electron, becoming oxyhemoglobin. When oxyhemoglobin releases the oxygen to tissues, it can again comgine with oxygen. Sometimes the hemoglobin becomes oxidized, the iron becomes incapable of transporting oxygen, and it is then called methemoglobin.

History:

• Normal methemoglobin concentrations are 1% (range, 0-3%).
• At concentrations of 3-15%, a slight discoloration (eg, pale, gray, blue) of the skin may be present.
• At fractions of 15-20%, the patient may be relatively asymptomatic, but cyanosis is likely to be present.
• Signs and symptoms at fractions of 25-50% are as follows:
  Headache
  Dyspnea
  Lightheadedness
  Weakness
  Confusion
  Palpitations, chest pain
• Signs and symptoms at fractions of 50-70% are as follows:
  Altered mental status
  Delirium

Physical:

• Discoloration of the skin and blood is the most striking physical finding.
• Cyanosis occurs with the formation of 1.5 g/dL of methemoglobin, as compared to 5 g/dL of deoxygenated hemoglobin.
• Seizures
• Coma
• Dysrhythmias (eg, bradyarrhythmia, ventricular dysrhythmia)
• Acidosis
• Cardiac or neurologic ischemia

END WARNING.

So Dapsone can cause methemoglobinemia, which can cause some of the symptoms I had been manifesting, such as cyanosis (blue lips and skin), weakness, anemia, etc. It apparently can also have more serious conseqences, such as coma and death. I didn’t get my methemoglobin levels tested until after I had been off Dapsone for more than a week and was feeling much better, at which time it was normal.

Monday, 5/22 through Saturday, 5/27 – I had diarrhea throughout this period and still got winded very easily. I finally went back to work on Thursday and Friday.

Saturday, 5/27 – no diarrhea since about noon and energy started to return. My taste also started to return to pre-intestinal virus levels.

Sunday, 5/28 – rode my bike to church and back, and hit tennis balls for a little less than an hour.

Tuesday, 5/30 – regularly scheduled BMT clinic visit. My counts were good:

...... current normal

..... ------- ---------
WBC.. 5.6 ..... 4 – 11
Hgb.. 10.0 ... 14 – 18
Plt.. 284 ... 150 – 400

Most surprisingly, my pulse ox readings (via finger sensor) were 97 – 98! I would have been happy if it had returned to 91, where it was in the winter before it started plummeting. I don’t ever remember levels that high. The doctor and PA were both very happy with counts, and were smiling because they said I looked so much better. I had some color other than white or blue I guess. Even when I was cyanotic, I couldn’t see the difference, but my doctor said that I’ve been on Dapsone since long before she started seeing me, so she never knew what my normal coloring was before.

They cut one of my immune suppressants (Cellcept) in half – from 2 to 1 (and down from 4 a while ago), and my Prednisone from 7.5 to 5. The doctor also explained that anemia can be caused by a virus (there were other corroborating indicators), and that diarrhea can be caused by an antibiotic and sometimes there is even a delay.

As we were talking about my history, the doctor mentioned that because they have lowered the generally accepted criterion for AML (acute myelogenous leukemia), which is what I was headed for, if I came in now with the same level of blasts in my bloodstream as I had a year and a half ago, I would probably be given chemotherapy treatments to get them down to a lower level before doing a transplant. She says I was lucky that the graft versus leukemia effect was strong enough in my case to kill off the diseased bone marrow.

To catch up to today (6/10), I’m still feeling quite good, with my appetite returned and a good level of energy.

Love,
Justin

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