“Every patient is a doctor after his cure.”

“Every patient is a doctor after his cure.” Irish Proverb

With all my ego, I would paraphrase it and say: “Every GOOD patient should be a doctor after his own cure.” This is by no means a discount to the medical profession; this is just to say that every patient or “advocate/caregiver” should try to be as knowledgeable about one’s health issues as possible. I think I have said this before, but bears repeating and I probably will say it again as it almost cannot be understated. I would never suggest that I know more than my doctors, but as much as medicine is a highly studied profession, it is also a very skilled craft. As a patient, the more I know about my health challenges, the better I can participate in deciding my treatment and understand the prospects of my recovery.
Sorry it has been a few days since writing, It is so easy to get wrapped up in a little project and all the sudden the day is gone. The last couple of weeks I have been catching up on my regular and recurring doctor visits (most are quarterly now). I do see quite a few but, sometimes the HMO’s or setup, and care is dissected into many small pieces. As a result, it usually takes a minimum of 2 doctor visits to get a diagnosis. I see my primary care physician only to have to obtain a “referral” to see a specialist. The specialist will often require lab work of some kind (where I have to go somewhere else to have it performed); and then a follow-up visit for diagnosis and prescribed treatment. Depending on the ailment, it then may require a follow-up visit to validate recovery (may even require additional lab work to confirm). So it becomes very easy to feel like I am seeing doctors all the time as I often am.
It seems you almost never can schedule more than one doctors visit in a day. What a waste! They are not in the neighborhood, they are over the hill as we ever so politely describe by living in the valley verses living in Hollywood/Los Angeles “proper”. So with traffic, parking (gas and parking fees), it is at least a half day affair to see a doctor, and of course if there is lab work to be done, it is usually another trip as most of my tests require I fast prior to drawing my blood (glucose tolerance test usually). So with the significant number of Dr’s I see, it is a lot of medical trips.
I had my annual physical a couple of weeks ago and as a whole, everything went well. My blood work was good (triglycerides were a little high). High cholesterol has never been a problem, thyroid tests were OK. I had been a little concerned about my thyroid levels as I have been a little more tired lately and I have felt I have become even more sensitive to temperature extremes. Being on Amiodarone which is highly toxic, it sometimes can affect thyroid function in particular. It seems there are no problems in that area for now.
My infectious disease doctor’s lab work was also OK. It showed that my viral load as still being undetectable and my CD4 counts are still in the low to mid 100’s. Normal CD4 count of 700-1000 is generally accepted as being the normal range for most folks, and anything over 400 or 500 would be considered healthy for someone with HIV. I have known folks with counts significantly higher than “normal” as well as those with virtually 0 CD4 counts. My CD4 count has been as low as 10-15, but has remained pretty steady at the low to mid 100’s for the last year or so. I would love to see it go higher, but at least it has remained stable, and I am otherwise healthy.
Besides the impact that AIDS/HIV has on the immune system, the LVAD implant apparently complicates the picture where immune response is concerned. There are the concerns of infection with the implantation of the LVAD (open heart surgery and percutaneous exit tube that comes through the stomach wall and through the skin is a long term risk entry point for infection) combined with a patient with an existing immune deficiency as a result of AIDS. This alone is a cause for concern. But, the LVAD seems to also have a negative impact on the body’s immune response. From what I have read, it does not aggressively destroy the body’s immune system like AIDS, but it does seem to suppress its response in some way. I guess it would be something akin to take one of the crutches away from a man with a broken leg, resulting in further hampering his mobility.
I also had my one year follow-up for my LVAD. Received a 2-D echo test (sort of like a sonogram), a 6 minute walk test with blood pressure and blood O2 saturations monitored; all with good results. I won’t need to go back for a couple of months now unless I have a problem. I actually miss them when I don’t see my “cardiac gang” at Cedar’s as they are a key component of my support; not just the medical side of things as they also feel like family to me and I feel connected with them on many levels.
To finish things off, I had to also go to a dermatologist. It seems I have picked up a fungus of some sort on my left hand. I tried a couple of different “over the counter products” without success. So it was off to another doctor. The dermatologist was young, professional, and attentive. As a result of in office examination, I am using a stronger antifungal crème (prescription) as well as an oral antifungal treatment. The unusual thing is I only have it on my left hand and not both. He thought it was unusual as did I and had no idea as to why. He also froze/burned off a couple of precancerous skin lesions. Need to keep those in check due to my compromised immune system and some of my medications make my skin ultra sun sensitive. He now wants me to come in annually for a skin examination.
Well that is it on catching up with most all my doctors; I do still need to see my electro-physiologist to review my pacemaker interrogation and settings. One of the pacemaker leads belongs to a recall of potentially defective pacemaker leads, but the risks are greater (for me anyway) to replace it than it is to monitor it closely. They have adjusted the sensitivity of the malfunction detection for that lead and I am comfortable with that. My pacemaker activity is transmitted nightly, so any irregularities would be picked up on very quickly.
Otherwise, it is situation normal…all f***** up. Thinks could be better, but they actually could be a whole lot worse. I least am alive, with a partner I have had for almost 17 years, and will be here for another sunrise tomorrow.
Namasté