Once again the year started off interesting: Tom got notice of a major comprehensive review of his disability status. Previously, concise two-page annual update questionnaire forms were submitted to Tom and his doctor. This year, it expanded to a full-day plus of neuropsychological testing. Exhausting. January also brought an opportunity for slave jay to participate in an intimate tribal hook pull with friends.
Meanwhile, Officer Wes had a couple of viral infections. Then an infection lodged under his left cheek and would not go away with topical antibiotics. A dermatologist injected the site with a steroid to reduce the inflammation and added systemic antibiotics. That helped.
The two big items in March were 1) Tom got hit by a driver who didn't see him, with the seemingly only substantial injury being two fractures in the right arm requiring a cast; and 2) our warm next door neighbor announced it was time to find a larger place for him and his fiance. The leatherslaves had been looking for a space that was closer to Officer and Tom and the neighbor was comfortable renting to these gentle souls he had already known for some time.
April – November: Officer Wes gets increasingly, extraordinarily, life-threateningly sick
April was an interesting month. An infection started settling in Officer Wes, and his neuropathy continued flaring. Each was tiring. April was also the first month that Officer Wes began utilizing Medicare Part D. WOW! What a godsend that program turned out to be, beginning just after Enron's prescription drug coverage ended several years after the company announced bankruptcy reorganization -- a total of 14 years after he went on long-term disability. Two family members were also able to share with mental health professionals about the leather community. Movie of the month: "Crash". Excellent.
May brought a visit to Dad by Tom. The leather family also gathered for a joyful celebration of dog's birthday. And Daddy Barry recuperated from a late-April motorcycle accident where someone pulled a U-turn in front of him. Thankfully he likes wearing leathers, so his own hide was spared as he slid. Nothing broken. "Just" major bruising and leg/knee pain. Meanwhile, the slaves continued packing for their June move. Officer Wes made his first HIV medication change in about 8 years, essentially replacing AZT with Ziagen to see if it might diminish the neuropathy side-effect. And Tom had his annual extreme sickness of 104 fever. The family gathered several times over dinner for restorative evenings through all of this. Movie of the month: "Capote". Exquisite portrayal by the lead actor.
July brought a joyful visit from Daddy & Charlotte, who got to spend time with their son and his partner, meet nearly-11-month old Opa, meet Daddy Barry and slave jay over cards, visit with longtime friends the Timans, and take a medical tourism jaunt to an audiologist in Tijuana. Officer Wes came down with what appeared to be walking pneumonia after they left, and was quickly seen by his doctor.
The remainder of July -- and into August -- Officer Wes and slave jay were sick for quite some time. The treatment for walking pneumonia -- a 5-day round of strong antibiotics, which was later extended to a second 5-day round -- is seemingly cheaper than a chest X-ray. When the tightness of breath and low-grade fever continued, waxing and waning, the doctor began wondering if the recent trip to the desert may be the possible but unlikely "Valley Fever" -- a fungus called coccidioidomycosis, which, quite naturally, responds to antifungals instead of antibiotics. We did a chest X-ray, which is the primary test to rule out Valley Fever, and later backed that up with a confirming blood test. The clear chest X-rays on both Officer Wes and slave jay indicate that the chest tightness may be some form of bronchitis -- inflammation in the bronchia above the lungs that makes it feel difficult to breathe.
Thankfully, in time the symptoms start to more clearly manifest as something viral: The coughing becomes "productive" -- able to get something up to look at it. The discharge is fairly clear in color. A bacterial infection would typically be accompanied by higher fevers and a darker, green discharge. Similarly, a low-grade fever around 99.0 begins between 3pm and 5pm, accompanied by body aches and headaches. Officer and slave jay pace themselves for weeks and weeks while healing goes on. Meanwhile, sleep is majorly disrupted due to coughing, the need for lung-opening albuterol (which can raise the heartbeat and make it difficult to sleep), gastrointestinal problems related to the rounds of antibiotics, and other oddities like the effective cough syrup seemingly working well for the cough but counteracting the usual sleep medications. Our concerned doctors work with us quickly with new office visits and suggestions when we don't respond to various courses of treatment until we all finally realize we're likely dealing with a particularly tenacious virus and the only real treatment is rest -- when able -- and palliative care such as albuterol to open the lungs, water to keep things moving out the system, cough syrup to try to rest, and ibuprofen for the fever, headaches and body aches.
We take in family meals, and plenty of movies like Conan the Barbarian, Conan the Destroyer, Scarface, TransAmerica, and Memento (delightfully different).
But Officer Wes does not improve. During week 5, the respiratory therapist notices something in what Officer Wes reports since the visit a week prior: Some annoying stomach acid had improved when we doubled Officer's raniditine (Zantac) dosage. Similarly, the cough had perhaps improved somewhat, but was still present. And the vexing issue where Officer would try to lay down to rest, only to be abruptly back up due to coughing, was helped a fair degree by a wedge pillow that Tom went out and got.
The sudden a-ha went like this: "Blow into this peak flow meter." A robust reading came out. Well, that was weird, I felt totally winded. The respiratory therapist said "It's not bronchitis at all. You have GERD (gastro-esophageal reflux disease) -- when acidic stomach contents move backward into the esophagus . One aspect of GERD is a sensation of being short of breath. Reflux is the source of most coughing. There are some lifestyle changes that can help with GERD (try not to lie down directly after eating, avoid certain things like tomato, etc, ) And there are some medication changes we can make that will help. You've been on ranitidine, an H2-receptor antagonist. We'll keep you on the new higher dose in the evening, but replace the morning dose with AcipHexTM, a proton-pump inhibitor. You will likely be feeling better by the time I see you again next week."
I had an ENT appointment directly after that. He took one look at the recap and said "He's probably right." I took a handout on LPR (laryngopharyngeal reflux). But just to make sure, he scoped the nose and confirmed that there was no infectious drip causing a reflexive cough. He also commented that I had a nasty case of thrush going down my throat and that Diflucan was in order for the next two weeks.
All of this got Tom to thinking: May 6 was the first day of my change from CombivirTM to EpZiComTM. That's when my sleeping disturbances began. And now we're hearing it may be reflux. Perhaps EpZiComTM changed my stomach more acidic. We'd originally made the change due to neuropathy, but later we also discovered that I had excessively high hemoglobin (The high end is 18.0. June 1 mine was 18.9. July 12 it was 19.4.) High hemoglobin can also exacerbate neuropathy. Perhaps that's what had really been bugging me. Perhaps a reversion from EpZiComTM to CombivirTM would resolve both the reflux and sleeping problems.
So, Officer Wes started checking into the EpZiComTM again. He remembered a product safety warning wallet card that is mandatorily distributed with anything containing one of the active ingredients (abacavir) in EpziComTM due to signficant issues with it. He'd kept it on hand for the first month, but when nothing seemed to happen, he tossed it. So, on to the Internet to retrieve the handout. Here's the synopsis from EPZICOM: Important Safety Information:
EPZICOM contains abacavir... Patients taking EPZICOM may have a serious allergic reaction (hypersensitivity reaction) that can cause death.
If you get a symptom from 2 or more of the following groups while taking EPZICOM, stop taking EPZICOM and call your doctor right away.
Nausea, vomiting, diarrhea, or abdominal (stomach area) pain
Generally ill feeling, extreme tiredness, or achiness
Shortness of breath, or sore throat
Over the months, and especially in the last 6 weeks, I have gradually experienced symptoms from Group 1 (fever), Group 3 (nausea), Group 4 (all: generally ill feeling, extreme tiredness, or achiness) and Group 5 (shortness of breath) – 4 out of 5.
What other safety information should I know about EPZICOM™ (abacavir sulfate and lamivudine)?
· EPZICOM, like other HIV medicines, can cause a condition called lactic acidosis and severe liver problems. Lactic acidosis occurs when acid builds up in the blood, which can affect how the body functions. In some cases, lactic acidosis can cause death. Nausea and tiredness that don’t get better may be symptoms of lactic acidosis. Women are more likely than men to get this serious side effect.
· The most common side effects seen with EPZICOM were allergic reaction, trouble sleeping, depression, headache, tiredness, dizziness, nausea, diarrhea, rash, fever, stomach pain, abnormal dreams, and anxiety. Most of these side effects did not cause people to stop taking this combination of medicines in clinical studies.
I stopped taking the EpZiComTM immediately and made an appointment to see my primary care physician when he got back in town in a few days. The symptoms didn’t go away immediately. In part I think it’s because the gastric reflux (GERD) is a correct diagnosis and the AcipHexTM hasn’t had a chance to fully work yet.
Meanwhile, I can share my experience, strength & hope with others: 6 weeks of sleep deprivation is survivable. But it is pretty surreal. Most nights I did not get more than 3 contiguous hours of sleep – and sometimes only that. It was worrisome to Tom, with his medical background, as he knew that inadequate sleep in and of itself can help trigger someone into different illness.
My HIV specialist was open to the idea that abacavir wasn’t working well with my body. (He did say, however, that he’s seen cases of the acute hypersensitivity that the handout is referring to – and that it’s much more intense than what I’m describing.) But he was hesitant to revert from EpZiComTM to CombivirTM . Why? “We moved you off the AZT component of Combivir to see if that would help your neuropathy. There’s another good medication out called TruvadaTM. It’s a combination of the Epivir that you’ve been on, and also tenofovir (marketed as the stand-alone medication Viread). It is metabolized through the kidneys instead of the liver, which gives the liver a break from all the other medications it processes. Your kidney-function-tests are consistently good, so it is a viable option for you.” Succinct, which really helped because I wasn’t processing new information clearly due to the great lack of sleep – now fully spanning 6 weeks.
What to do about the sleep? Somehow, I don’t know how, this was seemingly off his radar as a major issue. Thankfully due to writing things down ahead of time, I’m able to help my care givers give quality care that otherwise I’d be S.O.L. I recapped: For 6 weeks I’ve been ill, and not sleeping well. In the beginning it was interesting. But now I am about to lose my mind. Last night I got about an hour and a half of sleep. We must address the sleep TODAY.
He heard me. He suggested Lunesta (comes in different strengths 2mg or 3mg) or Ambien CR (usually dispensed in one strength, 12.5mg, except for special populations such as elderly patients where it is dispensed in a 6.25mg form). I was skeptical. He said they do work. Quickly. He had samples. It was a Wednesday, which meant I could try one that night, the other on Thursday, and still contact him Friday before the weekend if neither worked.
That night I had a sense of peace that things were going to work fine. Tom and I got ready for bed, I gave one of the medications a try, and within 15 minutes I was asleep. I next awoke a few hours later, briefly – perhaps Tom had just come back to bed as he was awake as well – and I simply said “wow” before drifting back to sleep for the remainder of the night.
1. + AcipHex (a proton pump inhibitor, a form of acid reducer)
2. + increased Zantac / ranitidine (an H2 blocker, a different form of acid reducer)
3. – EpZiCom
4. + Truvada
5. + Diflucan / fluconazole (antifungal, on for 2 weeks to address the thrush-down-the-throat caused by antibiotic treatments when we thought the shortness of breath was pneumonia, and later bronchitis – before finding out it was stomach acid)
6. + numerous sleeping medication changes, testing out Lunesta and Ambien CR (which work fine unless there is painful constipation preventing sleep)
7. + 6 ibuprofen (Advil, Motrin) / day for pain related to all of the above
Once the ever-increasingly-toxic-to-Officer-Wes-EpZiCom left his system, the six weeks of sleep deprivation were over within 1 week.
But wait. There’s more. It turns out that at least some antacids contain corn starch. Having been recently told that he had too much stomach acid, and that coughing was a sign of that acid, in the week after stopping EpZiCom, Officer Wes started taking two antacids after any cough. Now, he didn’t cough much. And the directions said “Up to 2/hour, every hour, as symptoms persist.” What he didn’t realize is that corn starch is a thickener. In short order, he was bound up tight with painful constipation. It required a deep cleaning enema to get rid of. That took 2 hours. If he hadn’t experienced one 15 years prior, he would have been S.O.L. and in the emergency room. But he eased into the process and when things finally, um, shifted, out came this hard clot of antacid muck, followed by other stuff that needed to come out. And he was EIGHT POUNDS LIGHTER. So, if you didn’t know it before, at least some antacids can cause horrible painful constipation.
The lifting of all this muck gave Officer Wes the opportunity to go to the Mardi Gras1-style celebration of life service for boy tim, who had died 11 days prior.
(1Mardi Gras: An occasion of great festivity and merrymaking.)
September still had one more freaky incident: One evening Officer Wes’ body went into a tight contraction that made it difficult to speak and move. It lasted for about 2 ½ hours. One medical professional present felt, in his opinion, that Officer Wes had suffered a stroke. Another suggested it was a drop in electrolytes.
As we headed into October, Officer Wes’ energy began dropping further. Painful headaches would suddenly appear. His knees hurt to walk. It was hard to stand. Three naps a day wasn’t restorative enough. And he was ready for bed at 7:30. What was going on? Thankfully, once again, Tom knew: polycythemia (elevated red blood cells / hemoglobin) likely caused by my testosterone replacement therapy. To address it, my physician had already reduced my testosterone replacement therapy dosage in July but Tom realized September 26th that the remaining polycythemia – in conjunction with a new round of antibiotics -- was causing this consortium of issues. We lined up a therapeutic phlebotomy October 4th and November 3rd to drop the red count quickly. When the first quarter liter was drained very slowly, the phlebotomist stated the obvious: Your blood is QUITE thick. Translation: Had this been left untreated a heart attack or stroke was quite possible. About the same time, the annual winter depression hit. We let it ride for a bit to see if it the situational component with boy tim’s death – fresh again with new, angry correspondence from one of the survivors -- would pass, but it did not. We increased the antidepressant when it got paralyzing.
But November also brought a special treat: We got to see Barbra perform live in concert.
In December we discontinued an anabolic agent we’d been using for 16 months to help Officer Wes prevent the annual recurrence of weight drop -- and related onset of pain when sitting. Energy naturally fell. But the discontinuance may help reduce or avoid the increasing need for therapeutic phlebotomies.
And, after a second antidepressant increase, the depression lifted like a fog disappearing to reveal a sunny day.
We are thankful.