Thursday Night Health Care Series: Here We Go Again

Promoted by TheFatLadySings

THURSDAY NIGHT IS HEALTH CARE CHANGE NIGHT, a weekly Health Care Series (cross-posted at ePluribus Media and Tikkun Daily).

My doctor walked in to the examining room and just looked at me.

"We need to talk" she said.

"OK, about what?"

"I am concerned about your viral load, really concerned" she answered.

"Why? Today's supposed to be the day that you tell me that once again, now, that for over a full year, that it's undetectable. What's the matter?"

"It looks like you have had a viral breakthrough" she stated, somewhat sadly.

All I could think of was that if she was right, I was completely screwed.

Follow me past the jump...

I recently went up to the Russian River for a day with two of my closest friends. One of my friend's brother lives there so off to his house we drove. That week had been an exceptionally hot one in the city and the Sunday at the River proved to be the same. It was a great escape, and it was beautiful up at the River. We went to the flea market, bought a few groceries for lunch and dinner and ended the day with a great Bar-B-Que.

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I should note that when I was working, one of the areas of advocacy I focused on was safe drinking water. Cryptosporidium ("Crypto") was very much in the fore at that time having killed several people in Las Vegas and Milwaukee:

In 1993, cryptosporidium took root in the public drinking-water system in Milwaukee and caused the largest waterborne human epidemic in America this century, severely sickening 400,000 people and killing more than 100.

Most of the fatalities in Milwaukee were people with AIDS, but not all were. The deaths also included elderly people and very young children, and the very sick included people of all ages and descriptions. source: Dallas Observer News

NAPWA questions safety of drinking water in major cities. National Association of People with AIDS.[snip]
AIDS: The National Association of People with AIDS (NAPWA) released a May 2, 1996, report stating that the tap water in the nation's major cities places people with weakened immune systems at risk for contracting cryptosporidium. Cryptosporidium is a potentially life-threatening microscopic parasite. In people with compromised immune systems, the symptoms of diarrhea, headache, abdominal cramps, nausea, vomiting, and fever can persist for months and lead to death. Twenty-two of the thirty-one cities surveyed had no testing or notification policies in place to reduce an outbreak of cryptosporidium. NAPWA recommends that people with HIV disease in extremely high-risk cities (Atlanta; Dallas; Minneapolis; Newark, NJ; St. Petersburg, FL; and Washington, DC) refrain from drinking tap water. Another 22 cities were found to be at high risk for an outbreak. source: AIDS Policy Law

I have known several people who had crypto and who died from it; I also have a few friends for whom the current triple combination therapy seems to have helped them successfully combat crypto. The fact remains that I am terrified of crypto and with it, also terrified of a host of other water- and food- borne infections.

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Anyway, the day at the river was great and we returned back to San Francisco. However, it was not too long after that when I got sick. Really sick. The kind of sick when you sleep for days, barely getting out of bed to barely make it to the bathroom to barely make it back to bed after changing your nightclothes yet another time because you sorta didn’t really barely make it to the bathroom successfully again. The kind of sick where you know you need to change the bedding because you just had yet another bout of night sweats – the kind that soak the entire bed all the way seemingly through the memory pad of the bed, the kind of night sweats that make you feel as if you’ve just run a marathon (which I have before) and sat in a sauna (which I have before) and just crawled under sheets that have been soaking in cold water. The kind of night sweats that make you ache and feel so weak and so wet and so vulnerable.

It was the diarrhea that scared me the most, the diarrhea that never ended, never abated, never stopped. It was the fact that I had finally hit a point where I was afraid that I didn’t even have the strength to fight off any accidents that scared me enough to finally call my doctor.

The office told me to get into a cab and get to the emergency room right away - which I did. Three full days of constant diarrhea (not to mention the night sweats) dehydrated the hell out of me so I was given an IV right away to help rehydrate me. Of course I had to undergo the required tests and exams and what-not, and then had to have more blood drawn, etc. etc. etc. - just another routine time in the E.R.

The doctor in the E.R. came by and after the usual Q and A gave me the first diagnosis – giardiasis. Since sexual contact was not a risk factor for me acquiring giardiasis (trust me on this...), I had to have picked up giardiasis somewhere, at some point, either through contaminated food or water. Regardless, there is treatment for giardiasis, although nasty and not pleasant, and a treatment that would prove effective -- flagyl. One of the side effects rarely mentioned about flagyl is that it makes one rather unpleasant to be around, especially because it makes one very crabby, very moody and very ornery. I was put on a five-day regimen of flagyl (1 pill 3 times a day) for the giardiasis and eventually sent home. The ER doc also suggested that I could possibly have shigella but that for now, pending the labs, best to take the flagyl and see my doctor as soon as possible and go from there.

A family emergency (which still is too difficult to talk about) required me to fly to Seattle a few days later (with permission from my doctor) and so I managed to get through most of my flagyl regimen without being too mean or too moody, just too sad and too heart-broken.

As luck would have it, the day after I got home from Seattle I had my regular standing appointment with my doctor. I was supposed to have had my full labs done before seeing her but with the giardiasis and Seattle, I did not – all the labs we had were those from my afternoon/evening in the ER.

Oh yeah, I forgot to tell you about the phone calls I got while in Seattle from the doctor and head nurse in the ER – calls that came at the most inopportune times when I was in Seattle but which I finally returned while taking a walk with my one family member through Volunteer Park the day before I flew home.

“Shigella.”

On top of the giardiasis it seems I also had shigella.

Oddly, we discover as I am sitting in my doctor’s office that the labs from the ER that were sent to my doctor were not complete and did not show me having shigella. A few phone calls later, this oversight was rectified – and the diagnosis of shigella stood. The treatment for shigella? Ciprofloxacin.

Shigella, it seems, is a gram-negative bacteria, which in the world of bacteria means it is a nasty spud. But treatable.

So, I was sent off to the lab to have my usual blood-draw, including the test to see how my diabetes was doing as well to determine both my HIV viral load and to check to see if I was still undetectable for Hep C. I was to see my doctor in a week and until that time, take my ciprofloxacin and rest.

Fast forward now to last week...

My doctor walked in to the examining room and just looked at me.

"We need to talk" she said.

"OK, about what?"

"I am concerned about your viral load, really concerned" she answered.

"Why? Today's supposed to be the day that you tell me that once again, now, that for over a full year, that it's undetectable. What's the matter?"

"It looks like you have had a viral breakthrough" she stated, somewhat sadly.

All I could think of was that if she was right, I was completely screwed. If I had a viral breakthrough, my HIV treatment options were not just limited, they were exhausted (this reality was the subject of a diary of mine in this series last year...)

I had been totally compliant with my meds, even when sick as a dog, I still took my meds. They were working and I had finally had almost a full-year of having an undetectable HIV viral load. Over the past few months, my T-cell count had climbed from the very low 200s (actually a bit lower than that I should add) to the mid-200s which, to me, was a miracle.

My doctor was duly concerned and I was duly freaked out.

There were a few silver linings to this gray cloud though:

* I remained undetectable for Hep C;

* That my liver functions (another way to measure liver health and Hep C impact) remained in the lower range of normal – when I started interferon, my liver functions were 5X the high-end of the normal range and now were in the very healthy and very low-end range of normal;

* That my diabetes was truly under control (for those in the diabetes world, my HbA1C was now at 5.6); and

* That my T-cell count had broken 300 (323 to be exact).

The gray cloud was that I had an HIV viral load of 1,000 copies.

The only hope I was given to hang my hat on from my doctor was that possibly the giardiasis and shigella had teamed up to really limit the amount of my HIV meds that I was taking to be absorbed by my body and that the lowered amount of absorbed meds in my body was what caused/allowed/could explain the viral spike. Not so much a long-shot, but not a sure-fire thing either. Only the labs would tell.

So, once again, off to the labs I was sent, this time to have not just my blood drawn for my HIV viral load but also to check the extent to which my meds were being absorbed. I take 5 HIV meds twice a day (one for the meds is actually two HIV meds in one pill) so we had quite a few vials of blood to draw for these tests. I am a phlebotomist’s worst nightmare when it comes to blood draws and bear the scars of some of the worst blood draws ever attempted (note – not all phlebotomists are created equal – some are a godsend, others are just simply not that good). Luckily my regular phlebotomist was working when I had to have this round of blood drawn and we managed through the nine-vial draw with little difficulty.

Needless to say, between the giardiasis and the shigella and my family crises, this possible wrong-turn regarding my HIV proved to be really crushing. Had it not been for a long-planned trip to visit my best friend and her daughter in NYC and to spend time with them and to celebrate Yom Kippur with them, I am not sure how I would have managed through this funk.

I needed to, as a dear friend of mine wrote me just the other day, just “float.” And so I have been.

So, now, here I am, in New York City, where it is just too damn hot. Too damn hot. Anyway, last night, we went to the Met to see an exhibit, only to find that the museum was closed because of the United Nations meeting – President Obama was hosting a dinner or reception of some kind at the museum. My friend and I stood on the sidewalk (we think we saw Gordon Brown entering the event) hoping to see Obama (he entered through another side of the building one of the NYPD graciously told us) and as we were hailing a cab to go home we are fairly certain we saw the car carrying Libyan leader Gadhafi.

It had been a week since I had my frightening doctor’s appointment so, given the time difference, I called back to see if my labs had come in. “No,” said the staff there, “we’ve been calling every hour and still nothing but we will call as soon as we get the results.”

Once in the cab, my cell phone rang. It was my doctor’s office.

“I’ve been calling the labs non-stop today,” said the one staff, “and finally they have your results.”

“And...?”

“Undetectable” he said.

I can’t tell you how relieved I was, how elated I was, how lucky I was, how exhausted I was. I dodged another bullet, plain and simple. The off-chance that I was mal-absorbing my meds because of the diarrhea proved to be correct. I am a lucky, lucky man.

Night has finally fallen here in Manhattan and it is finally cooling down. My best friend’s daughter will be arriving tomorrow night and until my best friend gets home from work, I have the apartment all to myself. It is quiet and while I am still floating, I do so a lot more tethered and a lot less frightened.

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One of the fundamental rights I think that we all have is to have access to a health care system that takes care of us, one that does not cause us to be worried about being denied drugs, tests, services, referrals or even denied well-trained and knowledgeable physicians, nurses and the likes. I have never assumed that my health care was a given (although I am adamant that health care for all is a basic human right), but I have noticed lately that since I have MediCare (I am only 46 mind you) I do not routinely fear that I will have tests or medications or referrals denied. I say this in part because I have one kick-ass primary care doctor and a fantastic constellation of friends and advocates and providers who help me take care of me.

I reiterate – I am a very lucky, lucky, lucky man. This sense of security is, I believe, an essential component in my care-taking and in my trying to stay healthy. This sense of security should be the norm for everyone, regardless of their current health status, or preexisting condition, or ability to pay, or geographic location, or even familiarity with the health care system itself.

When we go about the business of reforming health care, I believe that relieving people of their fear of inadequate health care is one of the most basic of goals we hold as non-negotiable because this fear –- born-out time and time again in reality –- is an incredible disincentive to seek care. And not seeking care because one knows intuitively or is afraid practically that they will not get the care they need and deserve is unacceptable. No one should fear that their health will not be taken care of if they seek help. No one.

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Post-script:

I am just about to post the diary when my cell phone rings. It is my doctor. She just wanted to call to make sure I knew the good news.

I indeed remain a very lucky, lucky man.

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