Wednesday, June 15, 2011

3284 Maelstrom

Wednesday, June 15, 2011

There is negative perfectionism and positive perfectionism.
Negative perfectionism is based on a fear of inadequacy.
Positive perfectionism strives for mastery.
-- Silk --


In the past few days I have experience a maelstrom of emotions, ranging from anger, sadness, discouragement, fear, and disillusionment to joy, happiness, hope, and excitement, and everything in between, sometimes in quick succession and sometimes all at the same time.

Early Monday afternoon I met with the urologist. I had looked up the ESWL procedure scheduled for this Friday, and I had a bunch of questions and concerns, and when the office help said I wouldn't see him before the actual procedure, I had asked for an appointment to talk with him.

When I was shown into his office on Monday and took the seat in front of his desk, before I had a chance to speak he looked at me angrily and said, "You went to the internet! You can't believe anything you read on the internet! It just causes trouble!" or something like that, it may not have been his exact words, but that was the gist of it, and he was VERY angry.

I responded something to the effect that I went to the internet for questions, and have now come to him for the answers. Doesn't matter, I guess. It's obvious he doesn't like questions either. He's Egyptian, I think, has a heavy accent, and I got the distinct impression he doesn't like challenges to his authority. He asked what kind of questions.

So, I sorta blinked twice, and said, "Well, the most important one I guess, is that I have fragile capillaries. Could that be a problem?" His face turned purple, and he said, "Yes. I will not do the procedure. Do you have any other questions?" Well, that response pretty much eliminated the rest. I asked if it was possible that the fragility was only maybe in my skin, not the internal organs, and asked if there was any kind of test, and he said no, no, no, and reiterated that he would not do the procedure. Period. End of discussion.

I asked what next, then? He said we'd take the stent out and then "play it by ear". Those were his exact words. I was dismissed.

I was stunned. On the way out, I stopped at the desk to get the appointment for the stent removal, and was told that the first opening was June 30th.

I pretty much crashed then. June 30th is two and a half weeks away! This useless stent HURTS! It's hurting more every day. And there's no reason for its existence, let alone to be tearing up my insides!

I wanted to cry. I wanted to kill somebody. After all this, there's been no headway. There's been nothing but deterioration since April 2, when they removed a stone blocking the distal end of a ureter, and put the stent in the wrong place.

Driving home, I wanted to cry, but I was too angry to cry.


You know, I got the distinct impression that it was not so much that I had questions at all, but that I said the words "fragile capillaries". One of the questions always asked is whether you have a bleeding problem or if you are taking a blood thinner. I always answer that I don't have a bleeding problem, I clot well and quickly and I heal quickly (in fact I have phenomenal healing ability), BUT that I do have fragile capillaries. I ALWAYS state that. And if it's not an interview, if it's the checkmark list, I always check "no" on bleeding problems, but then write in "I have fragile capillaries". So it was in my folder right there on his desk. It shouldn't have been a surprise.

(In fact, I suspect it's related to the blowout problem with my veins when anyone attempts to draw blood or set an IV. I just have thin walls, I guess.)

Now , here's the part that angered me more than anything else, more than his attitude, more than having to endure unnecessary pain for another two weeks, more than having no other avenue to resolve this -
I had the distinct impression that if I had not specifically asked, if I had not mentioned it to the nurse and she wrote it down as a concern when I made the appointment and if it had not been overheard by his office staff, no one would ever have asked, he would have gone ahead and done the procedure, and it's entirely possible that I could have started bleeding in and around the kidney, which is a life-threatening emergency. If I lived, I could have lost that kidney. If I had never mentioned it to him, he would have gone ahead and taken that chance!

By my actually bringing it up, he's now open to malpractice if anything went wrong.

And THAT's what made him angry!

That's not a conclusion I came to later. I had that impression right there in his office. Instantly.


So, I have a double kidney with stones in the lower collection chamber, one of which is blocking the lower ureter, no stones in the upper collection chamber, but a stent in that upper chamber that is tearing up my bladder and doing absolutely nothing else since it's in the wrong chamber, and possibly tearing up the kidney, too, who knows, and I've had only one day in the past month or so that I haven't bled. My stomach is sticking out like I'm seven months pregnant, and it's incredibly tender, there's a nyt-load of edema going on, and since there's all that edema, but the doctor's scale says I've lot four pounds in the last month, I've probably lost a lot more than four.

There's a lump just in front of the urethral opening "down there" which I suspect is the stent poking the bottom of the bladder. It hurts. It hurts when I sit. It hurts when I walk. Imagine a fork shoved up in there, and then the tines are bent every which way, and the handle is hanging out. Now sit, and walk, and bend over. That's what it feels like. It HURTS!

I tell the doctor it hurts. I tell the nurses it hurts. Everybody just shrugs. I don't think they believe me. I tell them I'm bleeding constantly, and we're not talking pink lemonade, we're talking BLOOD! But nobody asks for a urine sample. I think they think I'm exaggerating.

In the meantime, I haven't been able to do anything physical, I haven't been to the old house in months and if I don't get out of there soon I will lose the buyer who's interested, my back and stomach are losing tone, which is dangerous because I need those muscles to keep my spine aligned, and nobody seems to care. Like two and a half more weeks don't matter. And I still have half a double kidney full of stones and blocked. That can't be good....?


So, that was my status on Monday afternoon.

Late Monday afternoon, I got a call from the urologist's office. They had a cancellation Tuesday morning. Could I come in then to get the stent out?

Uh, yeah.


So, Tuesday morning. Yesterday. Stent removal. Office procedure.

On Monday, during the unpleasant office conversation, I had pointed out that we still didn't know how the ureters from the left kidney were arranged - whether both ureters emptied into the bladder, or whether they joined into one before reaching the bladder, and that it was important to know that because if they joined, the stent itself could be blocking the lower ureter. I asked if it was possible to actually LOOK into the bladder with a scope, and then we'd know if there was one or two.

Apparently he hadn't thought of that. And you know sumthin'? I think that had a lot to do with the "cancellation". I think I piqued his curiosity.

When I arrived the nurse asked for a urine sample. (The first one in this office.) I filled the little cup with blood. The nurse's eyebrows shot up, but she didn't say anything.

The procedure involved a topical anesthetic swabbed around the urethra, and then a scope was inserted. With men, they use a flexible scope, but with women they use a rigid one (according to the internet - HE didn't say a single word to ME!). There's also a lot of saline pumped in to clear it out and expand things smoothly. The nurse stood next to me and told me what was going on.

The urologist cranked that damn scope all around like he was digging a hole. Then he grabbed the end of the stent and pulled it out. That surprised me. The stent has curls at either end that are supposed to keep it in place, one end in the kidney and one end in the bladder. When it's put in, a guide wire is used to keep the curls straightened out. I had assumed a guide wire would be used to straighten out the kidney end for withdrawal, but if there was any wire used yesterday, I wasn't aware of it. There were a few slight pinches, and a short feeling of heavy pressure, and then it was done.

I think the nurse asked him if he saw a second ureter on the left, and he muttered something about too much edema, so I guess that didn't pan out. I wonder if he'll ever say anything to me about it.

I put my panties back on, and the nurse told me that there would be blood for a few days, that's normal, and some pain and stinging on urination. They gave me a prescription for an antibiotic (Cipro) and a pain killer (Phenazopyridine). Six weeks from now, we need a 24-hour urine collection to find out my urine's chemical composition, and then we'll "play it by ear".

As I was walking across the parking lot, I suddenly realized I was walking without pain. The pain had crept up so slowly, and increased so subtly over the past two months that I hadn't realized how really bad it was until it was gone. Also gone was the pain I'd had in the right lower back, that I'd ascribed to my spine, because it was lessened by changing position. (Now I'm wondering if the stent had been pressing against my spine and had thrown it out of alignment.)

I threw my arms up in the air and shouted, "I'm walking! I can WALK!" I startled a few people.

Since then, I haven't seen a single drop of blood, not from the instant the stent was pulled and I was allowed to empty the saline load. It's a clear pale yellow, like evening sunshine. There was a little stinging when I piddled yesterday, but that's gone. I haven't even opened the pain pills' bottle. (And after reading the info sheet on it, I don't think I'd have ever taken it even if I did have pain. That crap can do some really nasty stuff!)

Of course, I wonder. Is all this pretty urine coming from the right kidney, and the left isn't working? Was all that blood coming not from the bladder, but from the left kidney, and now without the stent it's just building up in the kidney and not coming out? Is there any way I can know?

But I can walk without pain. I can sit without pain. For now, I'm happy.

Later, I'll think about the stones, and the blockage, still there. But not now.


the queen said...

Never go back to that doctor again.

Becs said...

I'm glad that bit is over, but I'm with the Queen - stay away from him.

He's a dick.

rockygrace said...

Hoo boy - I am rapidly losing faith in the medical profession. But at least you're feeling better - yay!

Becs said...

Oh, as a future note - when Emma had an ovarian cyst twisting in her tummy, some 16 year old resident gyn was poking on her. He was leaning over her prone body, so she just reached up, grabbed what dangled and told him every time he hurt her, she was going to hurt him.