Saturday, February 01, 2014

At The Moment, I'm Pretty Bummed



Things are not improving here. I'm not losing the water, or any weight. I'm on a low sodium, diabetic and restricted liquid diet here, and my weight may actually be rising a tad. It's hard to tell, because I have to use the wheelchair scales because I'm too freaking big for the other kind, and these are less than reliable. We can get about a fifteen to twenty pound spread depending on where I stand on 'em, so I've been trying to be consistent and be in the same place. One thing is clear no matter - I'm not losing a damn thing.

So what is going on?

Several things. I apparently have kidney disease. What specific kind or if there is one, I have no idea - they all just say I have have kidney disease brought on by diabetes. So, they don't function as efficiently as they should, and one reason why the diuretics are less than effective at times. Because of the risk of damage to my kidneys, they decided to stop one of the diuretics - but they've been injecting these rather than giving them to me orally like I have been doing. Thus the increased risk. The cardiologist apparently decided that I needed the other drug and risk damage to my kidneys, because he reinstated one of them today.

Plus, they think I was eating too much sodium. I didn't even have a salt shaker in the house until recently when I bought one for a guest. I do not salt a damn thing.

But apparently what I've been eating has been too salty.

Personally, it does not seem logical that would be the problem because I sure as hell ain't getting any salty crap right now, and I'm not losing the water. If that was the problem, less salt would be an effective strategy for the solution. But it's not working, regardless of the cause.

But what do I know.

The local cardiologist has been after me in the past and is definitely looking at a leaky heart valve as a major contributor to the problem. The cardiologist I've been seeing told me I wasn't leaking enough for it to be worth the risk of an operation, and it wouldn't be causing me any trouble. When I repeated that to my main doctor she pointed out immediately that I was back in the hospital for congestive heart failure within a couple months, so maybe that was a pretty good indicator that it was a problem. And that is why I'm here - my heart is surrounded by too much fluid. At least that's what the xrays show.

Kinda hard to argue with that.

I like this particular cardiologist, but his office calls are higher and he wants to see me a lot more, and his labs are all higher priced, etc. Above and beyond what my insurance would pay.

So, back in the past, I got tired of that.

My main doctor told me I could sure get a third opinion and had a recommendation for another cardiologist that does valve work all the time and is quite familiar with fixing 'em up. But it sure seems to me I'm looking at some sort of heart surgery. Maybe they can do that with scopes and not have to open me up, I just don't know.

I just know that after my last open heart surgery I swore I'd rather die than go through that again - my time in the ICU was one long nightmare I don't care to repeat ever, ever again.

I had to ask why the leaky valve was a problem in this case as well, because I had no clue.

Apparently, there is a sort of backwash in pressure when the valve doesn't close completely and that increased pressure causes fluid to be forced into tissues in the lungs. It ain't my lungs that are hanging way the hell over my belt or raising water blisters on my shins along with edema everywhere, but apparently it travels. And fixing the valve may or may not decrease that back pressure.

Remember when I had the bright idea of having lap band surgery?

That is all right out until this crap is straightened up. I'm too weak for that kind of stuff. So that is also out as a strategy for improving my overall health - not gonna lose weight doing that real soon.

And I have no clue what my future here is. I still cannot walk very far at all without becoming winded. I can get around my house ok, but shop for groceries or go to the Post Office?

It wasn't happening before, and things aren't improving now anyhow.

I haven't seen my main doctor yet today, so you can imagine I'm full of questions. I also need something different for diabetic neuropathy in my legs. Yannow when your leg falls asleep, and when it wakes up you feel like it's got tons of pins and needles pricking you? Now imagine this going on all the time, and instead of pricks the needles are being driven in, and imagine your legs involuntarily jumping from the pain.

Yeah, it's kinda like that. She's put me on a particular drug that worked quite well for a while, but it's a pretty short term thing now. So in order to sleep, I have been taking Percocet to supplement gabapentin. I'm not wild about taking that kind of drug considering my past, and we need to try something different. I don't like the idea of runnin' around half baked all the time. This all came on after my fall earlier this year - I don't have much feeling left in either foot, but those ol' nerves still fire in pain.

Then, the edema has the skin around my knees all full of water, so it hurts to bend my knees back all the way. The skin on my belly is tight - so full of water. Some patches are all red and quite painful - they're trying to start up some stretch marks. I've got some already, and they're all full and inflexible as well. The veins on the back of my hands have disappeared, and my feet don't fit into my house slippers anymore. I honestly think I get so winded partly because I've maxed out weight wise beyond my ability to haul it around.

So, I can't get out and walk in order to get some exercise. It does more harm than good - stressing my heart, for instance.

And while trying to write this post, my left hand cramped up badly. This happens fairly frequently. It's usually a potassium deficiency because the diuretics really use that up. I already take Klor Con, which is a prescription potassium supplement. I also have to take magnesium supplements. I ate a banana and one of my pills, and it seems to have subsided. It generally reduces me to cursing and pulling the cramps out with my right hand.. I have had both hands go south, and that is no fun at all. That happened during one of my visits here, and it took an Act of Congress before anyone would do anything. We had to call my doctor and have her authorize the pills as well as a banana - that had to come from  food service and was delivered when they were darned well ready. The nurses could lose their jobs if they don't go through channels, so it's really not their fault something like that takes so long. They weren't happy that I didn't wait when I had a solution in my possession already, but I got kinda testy about it and went ahead and did it anyways. I had some friends bring me several bananas and I have my weekly supply of drugs with me. So, yeah, sit there and watch my hand twist and shout, or take a pill I already had. Gee, what a choice.

So, whose fault is all of this?

Well, I'm the one who didn't take care of himself until apparently it's too late, so you won't hear me crying "Why me, God?!?" Nope, I take responsibility for it all, and I really don't feel like I deserve a whole hell of a lot of sympathy other than I have been trying the past few years, and it ain't cuttin' the mustard.

So, I'm bummed.

10 comments:

threecollie said...

There is no question of deserving or not deserving sympathy and concern among friends, and you certainly have a lot of both of mine. Your symptoms sound both terrifying and miserable and I wish there was some way someone could help. Meanwhile, I hope you get some answers that will help you plan and accomplish a wonderful recovery....hang in there. You have every right and reason to be bummed.

ShirleyJo said...

Jeff, most of us in our generation have not eaten what we now know we should. Don't blame yourself, or your parents who brought you up on fried salty food.
Look at the sodium content in everything you eat. I had to cut way back. Things like salad dressing, ketchup, mayo, lunch meat. Any processed food. Look for low sodium diet online. It's not pleasant! I was close to a heart transplant, but God had different ideas for me. Doing much better, but still careful about salt.

MorningGlory said...

This sounds like a crappy way to start the new year, Jeff. What a team we'd make though, as I can't walk from one end of the house to the other without oxygen. Forget grocery shopping, vacuuming, etc. By the time I take a shower and get dressed I need a nap, so I understand how frustrated you must be. Hang in there friend, and let the docs do what they do best.

creakypavillion said...

Assigning blame is not productive, Jeff. Besides, who knows why some get sick and others, doing the same thing, don't? "It's in one's genes" is not always true, either. When even doctors are not certain, don't assume you know; so don't blame yourself.
From what you describe, the logical thing would be to bring all these various doctors together for a discussion and exchange of opinion and let them come to consensus of course of action.
Would there be someone who organize that!

Hang on there, Jeff. You have to be strong mentally to get better physically.

Jeffro said...

Tatyana: They're on the phone talking to each other quite a bit, and they see each other a lot at the hospital. So they get together. My main doctor is a real facilitator when it comes to that sort of thing.

Jess said...

I can only pray the current treatment strategies work.

Hang in there.

CGHill said...

Weirdly, though I'm on a diuretic, I'm probably going to have to give up bananas: new med for the glucose has a tendency to screw with one's potassium levels something fierce. Oh, and it's $10 a tab. I got in on a marketing program, so it's cheaper, but still...

SteveK said...

Hi Jeff. Sure hope that edema starts going down and they'll let you go home real soon! I'll be thinking about you and hoping for the best. -Cousin Steve

creakypavillion said...

Here's to hope their collective brainstorming will work soon.

I can't imaging how difficult it all must be for you. It is amazing that you keep your sense of humor and your ability to rationalize.

Dad Bones said...

It sounds like a rough road, Jeffro. I remember when PT was diagnosed with cirrhosis in 1995. He started reading every box and every can looking for sodium content before he would take a chance on eating it. It paid off and kept him around almost another 20 years.