handing off

Odd timing that last night was the Scrubs episode when a pateient was handed over from medical to surgical, to medical, to surgical, etc. Neither wanted to treat him, so they would change the diagnosis to warrant ferreting the patient to the other ward.

The cardiologist is ready to ferret me out to a metabolic doctor. Basically it was "despite the months of hypertension and tachycardia, your heart is tolerating it pretty well. So there's not much I can do to treat you. But this might be a metabolic problem, so you should see this metabolic doctor."

Granted, he finally gave me something to try and slow down the heartbeat. But he also wants me to wear a holter monitor to see how fast it really is. I can only say "resting for an hour in front of the TV and my pulse doesn't drop below 96" so many times to him. Or the classic line "I haven't had this problem for long," seems to have fallen on deaf ears.

Office didn't have any holter monitors available. So by the time they get one and call me, hopefully the medicine will kick in which makes it useless. Needless to say I'm filling the script tonight and crossing my fingers.

I'm being very proactive about this because Sunday I think I had my first blackout. While driving the car. At 80 miles an hour. I also mentioned this to doctor, and he didn't seem that concerned about it since I didn't crash my car into a million pieces.

Seeing the metabolic doctor, I'm kinda mixed about. The cardiologist didn't seem that convinced that he'd find anything. But if there is a metabolic problem, this doctor will supposedly find it.

If the doctor treated me like that, so did the office staff. After telling me there was no copay "Uhh, yeah it says so on the card," and then getting a bill for said copay. Then they wanted me to sign paperwork for a study that the doctor wasn't going to have me to, so I refused. Then they asked for a copay after leaving when I paid for today and the last one.

This cardiologist originally tried to tell me that first my brain pacemaker was causing this. Then it was stress. Then it had to do with my celiac. So I'm just tired and frustrated with him and his excuses.

Yes, it was good to hear that my heart so far isn't ready to give out (even if it feels like it at times). And with the exception of the med that lowered my blood pressure (and hopefully the med that will lower the heart rate), it was pretty much a waste of time to get talked down to.

halfway done

I finally got to re-hook up with Medtronic. It has been about a year and a half since I had seen one. My biggest concern was that my I could have sworn that when I got my motor cortex stimulator put in, I'd have about four years before having to change out the battery for the generator.

Well, June was four years. I get a rough idea of when the battery is about to go with my remote, but I don't know how long that would be in terms of time. My remote was still saying I was good, but I wanted to get a more concrete number.

Medtronic has a fancy hand held unit that can talk to my generator. From there, they can reset my limits, get how many hours it's been on, and how much battery I have.

The good news is that I still have 46.8 months at current useage. Yeah the power is a bit high and it's feeding three electrodes. But the rate is low, which is what is my saving grace. For some reason, for me, keeping the rate low and the power high works.

She reset my power limits higher if I need to. I don't see the need often - I do good at my current settings. But it's nice to know I have the option if I need it again.

We spent the rest of the time chatting about what I went through, and how I'm doing now. I said I hate to sound like one of those testominals, but it's true for me.

She told me that the current battery technology is rechargeable, and gives the patient about nine years before needing replacement. Granted, the placement of my generator might make battery recharging a bit more akward. But it's good to know that when I'm finally ready for replacement, there's new developments out there.

no news

Wish it was no news is good news.

Finally got my blood pressure under control, but still dealing with my pulse racing faster than NASCAR. My doctor still can't offer an explanation why. But my chest partly feels as if it's about to explode.

Somehow I was able to get my work done and all caught up.

I'm not having a pity party. Just that I don't have much energy to do much else besides get through work and run to these doctors appointments.

I also quickly made my annual deductible of $1,000. At least living expenses are still low so I can come up with that much money in a hurry.

from left field

*wham*

I'm still coming to accept it. But it was a surprise to me.

I was still having high blood pressure, fast heart beat. Then chest pain started about two weeks ago. It feels like a pulled muscle across my chest where my heart is. So I went to the cardiologist yesterday. I haven't had good luck with them in the past, but I have to get something to help.

First of all, he was "I wouldn't have put you on that beta blocker," made me feel a bit at ease. Then as he was listening to my heart, he said to his intern "do you hear that prolapse?"

What?

Yup, mitral valve prolapse. Pretty pronounced. So I immediately had to do a stress test. I did very well on that, so it doesn't look like I'm in any immediate danger.

But the pronounced flutter with the chest pain isn't good either.

As we were wrapping up our plans for the immediate future, he mentioned that this could be from my celiac.

*thud* I've never heard of it.

So doing some quick literature searches said it could happen in conjunction with Celiac Artery Compression Syndrome. Basically it means that when I eat gluten, there's abdominal pain from compression of abdominal arteries. Well, that happens.

In the immediate future, I need an echo to see how much blood is seeping backwards (not sure if they're going to look for Celiac Artery Compression Syndrome). I'm supposed to cut back the caffeine, and not push myself too hard.

I think I'm more bummed about the caffeine bit. Since I don't know what (if anything) needs to be done, I'll focus on what I can do.

At least I don't have to quit alcohol too. Thank goodness I had a bottle of the cat label red wine to drink from last night.

designated parking spot

At this rate, Scottsdale Healthcare is going to give our family it's designated parking spot. For the last six weeks, we have been there for almost everyone in the immediate family, including a day at the hospital for boyfriend.

Now it's my turn. Though I don't have to be admitted, I have to go back to that hospital for some special tests.

My annoying blood pressure issue isn't going away. And the pulse is too high to boot. Even on beta blockers. So I have to go through some tests to check my adrenal glands.

Joy.

as if there wasn't enough

I have a new health issue to tack on to my other issues. And I'm finally getting ready to deal with it.

I have high blood pressure. And I can't blame pain, but rather think that I was getting throbbing head pain FROM the high blood pressure. And it was more of a dull throbbing pain instead of a "take your breath away sharp intense pain".

With the help of my ob-gyn, I got hooked up wtih a great primary care doctor. Yes, I was there to start dealing with my high blood pressure, but I had other issues he could help me with.

At least the EKG showed my heart is tolerating my high blood pressure very well. I have to get blood drawn tomorrow morning to check cardiac enzymes and make sure my kidneys are okay.

He was generally interested in my story of how long it took to get my final celiac confirmation. He agreed that I should get a bone density scan because their scale also think I'm now an inch shorter than I was for 15 years. (That and the broken bones I've suffered during diagnosis.)

He sent me home with something to lower the blood pressure and a beta blocker. I have to get the blood drawn tomorrow morning and I see him again Friday morning.

It's great that since I can say I work on a clinical hospital floor, and explain all the hell I've been through he seemed to respect where I was coming from.

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The hard part is not having my mom find out. She's got enough to worry about since my dad is having problems. He goes in for a CT tomorrow. There's a problem where the feeding tube was, and he's showing signs of dumping syndrome (enough said).

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Then my sister had an outbreak of a strange rash. Her doctor thinks it's shingles. At least it isn't causing her pain (yet).

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I won't say "what else can go wrong?"

under the radar

Geez, and I consider myself someone that keeps up with news events. This story slipped past the radar of the sites I commonly read. But it sure made me laugh.

Apparently, Viagra can possibly lower male fertility.

So now can we get past this "Viagra generation" and move on to something more important?

Oh please, oh please

Still recovering from another tough weekend. Got back to Tucson after 5 on Sunday and crashed early to try and recover. And yet, I still feel run down and crappy. And I forgot my travel coffee cup full of fresh coffee this morning.

But I was doing some searching to see if there's any celiac research going on in the valley. Figured I could use my celiac as an advantage. Came across a scary article about a case study involving a patient with celiac only testing anti-gliadin positive and had NK cell lymphoma.

I knew that celiacs in general have a higher risk of lymphomas.

I need to find a good doctor for my follow up care relating to my MCS. I also want to get the basic tests done for vitamin levels and a basic CBC (to kill the lymphoma possibility).

Once I gave up searching publications, I came across a website about the Mayo Clinic in Scottsdale being part of the Alba Therapeutics clinical trial. They're testing a pill you take before wheat consumption and it prevents the immune response from it.

I called and left a message for the clinical nurse. I think I can qualify. So it's time to chant "oh please, oh please, oh please" until I hear for sure that I can get in.