Tuesday, 31 July 2007

What an excellent machine...

What an excellent machine a computer is, particularly when you have CFS. I can write a sentence, or sometimes only a half, save it to some later time when I feel a little better, go back, write more, rewrite, find words or information in small bits and pieces to add, and then, after a while this kind of coherent text appear! I don’t know how coherent I am in my thoughts, but at least it looks quite impressive to me when I see this growing after a while! Hehe...

To continue my story: I guess I had my moments with my doctors, since I am a cell biologist by training and fascination. I’m not a medical doctor, just a Ph.D. who have worked with cells, how they are built, look like, grow and function, so I know some details about life in general that doctors don’t know! (Hehe...there I got it!). Of course, this was a problem as much as a strength. I probably got in conflict with half of the doctors I met, because they couldn’t take a patient knowing more about some details that they didn’t understood. The rest half could grudgingly accept my questions – and order some more tests – and then there were one or two that really could talk and discuss with me what was going on, what they knew or not, and even come up with new ideas to test together! I guess I was lucky after all! But the first such doctor came to the cardiology department I spent a lot of time at, only 2 or 3 years after I became ill the first time.

During these first years, I had numerous ultrasound tests of the heart, gamma-camera tests, and coronary angiograms, not to mention all kinds of regular blood tests. None of these showed there was really anything wrong with me.

I had my mitral valve prolapse, but that I knew of before, and probably have had all my life, and it was perfectly constant, so it hadn’t change and wasn’t an explanation to my sufferings.

OK, they could see some smaller areas in the heart muscle that had ‘some’ sort of disturbed micro-circulation from the gamma cam pictures; the capillary vessels didn’t allow the blood to flow properly at times. But this finding was varying from time to time, different areas and different extent, so they really didn’t know what to do about it. Anyway, at this point, I got a diagnosis: negative angina or spasm in the capillary blood vessels in the heart!!! The older female cardiologist explained it as ‘sometimes we see patients with the same symptoms as with angina pectoris, but they don’t have any blockages in their big coronary arteries’. Later I learned that up to 10-30 percent of angina patients are in this group!

Well, this prompted the doctors to put me on beta-blockers, calcium-blockers, digitalis and a few other conventional heart medications. Of course I didn’t get better, but I took them for years anyway, silly as I was. Sometimes I had as many as 12 to 15 different pills to take every day! And, ohh yes, nitro-glycerine in various preparations: fast working pills under the tongue, slow releasing to swallow, drip when I was at the hospital, even a paste to put on the chest twice daily!

Well, at least they tried to find something that would help! What a guinea pig I was, but THAT I didn’t mind! Better try something than being ignored!

4 comments:

darklyfey said...

I hope you get some joy and pleasure out of your weekend. :)

ZenMaster said...

Thanks, darklyfey!

Nature Nut /JJ Loch said...

{{{HUGS!!!}}} I know the frustration of having a disease no one can heal. At first you have hope because you have a string of doctors to see and you think ONE of them should figure things out. Then you come to the end of the line and know you're STUCK with your poor health. That's me after two carpal tunnel surgeries gone a muck and scar tissue making a huge mess. I have voice-activated software and am determined to make a fiction writing career happen.

I have times when I can't think from fatigue, but each day I try to move forward.

Our lives are only just beginning on a beautiful plane where we see more than we ever would have seen before.:D

Blessings to you and thanks for visiting my blog. :D

JJ

Terrie said...

My husband thinks he may have CFS or something similar and the doctors agree with him, so I understand your frustration and the difficulties you're having. Apart from the sheer exhaustion and the ability to think coherently that he's put up with since 1990 he's recently developed agonising stabbing pains in his side which the doctors are currently putting down to idiopathic intercostal neuralgia and something he'll have to live with for the rest of his life, but can't explain how its developed.

I hope that things improve for you.