I'm approved! 2/25/2011

Hi All,

It's a good Friday! I just got notification that I was approved for Social Security Disability. This is awesome because it means that will be eligible to apply for Medicare in about a year. That is fantastic, because if I need a transplant in the future, Medicare will help with the bills immensely. Fantastic.

My monthly disability payments won't increase, because my private disability insurance will decrease by the amount of SSD I get, but it is more secure than the private insurance, and now that I am approved, there are way fewer hoops to jump through.

I was approved in about 5 months, and didn't have to appeal. That is pretty rare, as most of the time Social Security denies the petition at first, and several appeals become necessary. I guess I am lucky (?) enough to have a condition that is completely documented and my labs are all well within the approval standards.

I was jumping for joy when I got the letter this morning. Ok, I didn't jump but I did do a mean Jersey Shore fist pump. Crossing this off the stress list is such a relief. Nick was a little less excited. To him, it's just another reminder of how sick I am. I told him that nothing has changed. I'm the exact same as I have been, we just have more financial security now. It's definitely a good thing, but I understand it's just another dose of reality. Blech.

On the health front, I'm doing pretty good. I stopped the Amiodarone about 6 days ago, and I am pretty sure the jerking is becoming less frequent. One bummer is that I have felt some strange heartbeats and racing the last few days. It kind of feels like I got the wind knocked out of me and breathing is hard for a few minutes. I'm not sure if it could be a result of stopping the Amiodarone. That drugs stays in your system for at least a month, but it still could have something to do with it. I called my doc and she'll let me know if I need to stop by to have Sparky interrogated. I'm sure it's nothing, but I always like to make sure.

I can't remember if I told you I was going into the hospital to start Sotalol on Monday, March 7th. They were going to have me come in on Friday, the 4th, but I have fun plans that weekend and I have no desire to miss them for a stay in the 4 star resort that is UWMC. So Monday it is!

Well, I'm off to go stare dreamily at my social security approval letter. It's gorgeous. : )


It's a date! 2/22/2011

Hi All,

Alright, I've got the switch to Sotolol scheduled! I will go to the hospital on Monday, March 7th, and stay for 3 days while the drug is started. The docs will watch my EKG to make sure my QT waves don't widen (don't ask me what that means exactly, but that's what we're watching out for).

I'm so grateful there is another medication out there for me. There is so much about this condition that I have absolutely no control over, so it feels awesome when I have a concern about a problem and can do something about it.

The good news is I will be in the hospital but I won't feel lousy, so I should have plenty of time to scope out the hospital drama. You'd think the cardiac floor would be a real snooze-fest, but it's surprisingly interesting. Stay tuned!

Love to you all,

And she's off! (well, about to be off) 2/11/2010

Hi All,

Got some good news...I get to get off Amiodarone!! That's the drug with all the awful side effects like the jerking and the cataracts (and 38 additional serious side effects that I haven't seen yet, but am constantly worried about).

I just talked to my nurse practioner, and she let me know my cardiologist and my electrophysiologist had a pow wow, and they agreed I can come off the drug. The next step is figuring out the best way and time to get me on the replacement drug (Sotolol). I can't just stop the Amiodarone; I have to switch right away to Sotolol. And that is a little tricky.

Sotolol can sometimes cause dangerous heart rhythms, but the good news is the rhythms show up right away if they are going to make an appearance. So I will probably have to be admitted into the hospital for a few days to start Sotolol, just so the docs can watch every heartbeat and make sure the bad rhythms aren't occurring.

I go see the doc on Tuesday, and hopefully we'll have a game plan then. So, if all goes according to plan, I may be off Amiodarone within the next week or two. Hot dog!

Well, that's all the news I have for now- I'll keep you posted on the next steps. I can't wait!
: )

Effects on the side, please- 2/3/2010

Hi All,

It's been so long! I've been lucky enough to have a really good run of it for awhile, and I haven't had much to tell you. Sparky 2.0's pacemaker continues to be the best thing that has happened to me in the last year and half. My heart is beating strong and regularly, my blood pressure is back where it should be, and my energy is much better than it was for the month or so I was dealing with the terribly low heart rate.

So in general, things have been really good. The only snag I've run across is I'm starting to see some lousy side effects from my drugs, and they may have become kind of serious. I think I told you guys a long time ago about this drug called Amiodarone. It's the drug that stops the dangerous rhythms that caused Sparky 1.0 to shock me. Well, the drug is working perfectly for that purpose. I haven't had one bad run of heart rhythms since starting it. But I'd been warned about the nasty side effects of the drug from the beginning. Lung deterioration, kidney problems, vision problems, neurological problems...the severe side effects lists for most drugs includes 3-4 conditions. This drug's list includes something like 40.

Well, a few months ago I started noticing I was having muscle jerks sometimes. About 5-10 times a day, my whole body would jerk, like a reflex. The jerk originates from lots of places- my calf, my arm, my neck, my stomach. It doesn't hurt, it's just surprising.

I mentioned it to my doctors, and they referred me to a neurologist this month. After his exam, the neurologist said he thinks the jerks are likely from the Amiodarone. To be sure it's not something else, he sent me for an EEG, which is where my head gets hooked up to about 20 electrodes and I lay in bed with my eyes closed for an hour. The results haven't come back yet, but the most likely answer is still the drug.

The other odd thing was what my optometrist told me at my eye exam a few months ago. He said I was developing the beginning stages of glaucoma and have some cataracts. He said this wasn't 100% attributable to the drug, but that it was likely. He scheduled a follow up test for later this spring, so we can see if the disease is progressing.

My nurse practitioner and I discussed all of these things this week at my appointment, and she said the vision problems can get serious, and that may very well mean I have to come off Amiodarone. There is another drug called Sotolol that can be used instead of Amiodarone. It's not quite as good at suppressing the bad rhythms, but it has far fewer side effects.

If I go on Sotolol, I'll have to go to the hospital for a few days while I start the drug, because I need to be observed for adverse reactions. But I really think it's worth it. The Amiodarone is a great drug, but I'm way too scared of the side effects.

That's the thing that's hitting me with this situation. Until now, I've been able to push the thought of side effects out of my mind, and just focus on the task at hand. But I'm starting to feel like it's time we pay close attention to the long term effects, because I want to be around for years and years, and I'm going to need my vision and kidneys and lungs. I know my doctors have the best interest at heart, and are going to watch out for all of those risks. So if they say we need to try Sotolol, let's do it.

I'll keep you posted on what happens. My guess is we will know which direction this will take in a a few weeks. But yay for solutions to lousy problems!

Love to you all,