Health Update

Where to begin?  Just chat, I guess.  I am propped in bed, Tashi on knees, a scene I sometimes feel is heaven.  I am icing my right ankle 20 minutes on, 20 off, and taking care to do the least possible walking because every step hurts.  Tom is in bed in the other room though it's only 8:00 pm here, and we're both hoping he's just tired, not getting sick.  Long active day, and he had to do all the driving.

What happened was that the transplant doc way last December saw my total cholesterol bump over  200 and prescribed a statin.  He made a good case for it, and I thought he knew what he was doing.  I took it for 3 days and ended up in the hospital being looked at for heart attack.  They ruled that out and released me, and nobody ever talked about the statin.  Then household calamities arose and somehow it was displaced from the box that holds my medicines, and had not yet gotten on my med list.

Two weeks ago I was somehow reminded that I was supposed to be taking the damn thing, so I started it again.  No one had ever connected the events of last December with the statin.  No one ever asked, "What's the last medication you started?" which I now know is always an important question.  This time, when I made a fairly urgent (next day) appointment at the clinic I use, nobody asked again, though the nurse went through the tedious business of updating my med list.

Wednesday I was worse off yesterday than I'd been in December: terrific edema in my legs and feet, and my right foot so painful I could hardly bear to walk.  Short of breath, by which I mean out of breath from tying my shoes.  Temp low, blood pressure low.  They took chest x-rays, listened very carefully to my lungs and heart, then sent me over to the hospital for a venous ultrasound and an echo.  These things showed no blood clots, no heart problem.  Home, relieved that I wasn't admitted.  I am really tired of going through so much to stay half-alive.

Thursday I had a message from the clinic that the urine sample showed some bacteria, so they are culturing it.  Meanwhile they wanted to throw Cipro at it.  I told the pharmacist I wouldn't be picking that up. Both my shoulders have torn rotator cuffs, apparently as a result of taking Cipro for a week when it turned out to be the wrong thing altogether, but it was Christmas and nobody checked the lab results...

Today I saw my really good doctor about the painful foot.  He is a DO who specializes in musculoskeletal-skeletal problems.  He x-rayed the foot six ways and said, "The good news is, nothing's broken. Your bones are fine." Once again, I was giddy with relief.  It has worn off.

He did say two other things.  One was something about how they now think statins do something else to lower cholesterol, and that's not good.  The other was that this is not classical rhambodyolosis, but I'm such a delicate balance he thinks the statin went in and upset everything.  He's going to be out of town next week, but made sure I knew to call the office it I have any questions or it isn't going well.  And asked me to check in the following week and let him know how I'm doing.

Tom thinks he and I can be excused for not questioning the transplant doc's prescription of this low dose of statin because of how learned and certain the guy seemed.  This is what he does, deal with kidney transplant patients. I think nobody has ever looked after me in my life and I am never again going to take anything without researching it thoroughly.

I had not read this article or heard about the book.  A whole goddam book against the most-prescribed drug in the world.  Then, leafing through Wired magazine, I read,that 30,000 people die every year in America from over-treatment.  At the same moment the evening news was,informing me that seven people die every day texting while driving.  I'm an English major - you do the math.

God knows how long it will take to get back in some kind of physical balance and be able to maybe walk without pain, and drive.  I talked today to someone I thought would care and she told me with veiled impatience that it's not the doctor's fault, it's the system.  And don't bother to try changing the system.  Or even think about a lawsuit.  And I am just thinking deeply about this idea, self-compassion.  Caring for myself as much as I have for other people.  It's a woman's problem.  In a good mood, I have a grip on it, how you're no good to anyone if you don't take care of yourself.  How martyring yourself is nothing to brag about. 
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I wrote this last night, propped in bed, the foot elevated, feeling my mood go down.  It is still doing that up/down, but is less predictable now.  I felt that what I wrote didn't begin to express how frightening this was, how low I felt. 

Just fielded a phone call from the clinic nurse, about how they want me to start Cipro.  I feel like the medical system has continued the abuse my father started, the utter failure to look at me as an individual or listen to me.  It's the patriarchy.  That's what he did, trained me to accept abuse.....I can't think of a title for this.  Just going to post it for the information of friends, I guess.

Pain and Suffering

(Newser) – The FDA today mandated urgent “black box” warning labels on Cipro and other antibiotics of the powerful flouroquinolone family of drugs. The antibiotics carry a risk of tendinitis and tendon rupture, which could leave patients severely disabled, the AP reports. Particularly vulnerable are those over 60 and patients who have undergone heart, lung, or kidney transplants. 

That would be me.

I might have written already that I have another UTI.  This one is responsive only to one oral drug, Cipro, which is much safer than putting a PICC in again for an IV drug. I really hate to take Cipro, which can weaken tendons.  I had it over Christmas 2010, and we suspect it is responsible for my torn rotator cuffs - one side effect is on tendons.  I really hope my Achilles tendons don't tear.  Cipro is a very big drug, and there have been attempts to lower its use.

The nurse who called about it suggested I call my transplant doctor to see whether they wanted to adjust the dose of my cyclosporine (Neoral).  So I called the transplant nurse.  She called me back to say that they don't like to be adjusting it all the time, they don't worry about it as much as the outside doctors do.

Thank to the internet, I learned that Cipro tends to elevate the levels of Neoral in your blood.  And the light dawned.  I have this big, stuffy achy head.  Eyelids more swollen.  A sense of looking at the world through confusion.  Just like post-transplant, when they had me on 150 mg a day. After they lowered it to 125 mg, then to 100 mg, I felt better.  Not terrific, but relieved of some of those symptoms of Neoral.

But here we are again.  The Cipro is for only a week, we hope.  But you know, a lot about all this is not fun.  Still hurting from the shingles that appeared in February.  Awaiting double nephrectomy May 9 and hoping it will put a stop to these UTIs, and the e-coli that are having so much fun in there evolving into strains that no antibiotic can touch.  I picture them having big festivals to celebrate their success. 

I don't think this is "complaining" on my part, though my parents certainly would have called it that.  And there's an excess of Think Positive out there, especially on Facebook. But I'm just getting used to the Lyrica, for post-shingles pain, and it's not certain that it's helping with that. Meanwhile, I am a walking compendium of side effects.


Damn it.  I get tired of this stuff.  But our task is to not let it ruin our lives.  The promise of Buddhism is that you can minimize these kinds of suffering.  Or, let me say, fear, pain, inconvenience - they don't have to be suffering.  They don't have to ruin your day when the honeysuckle are blooming right outside your study window.  And it's time to meditate.