Tuesday, February 16, 2016

Un-break My Heart

Back in July, when the doctor gave me the results of my first follow-up ECG, he told me that my left ventricle (or more specifically, my mitral valve) was not working properly. It was not pushing the blood back out of my heart efficiently, or really, at all. At the time, the doctor said that if I had walked in off the street the week before, and got the test results I had, he would have sent me to a surgeon to have a valve replacement. But since my heart function had improved since the prior test in the hospital, he was hopeful that my heart would continue to improve and that my mitral valve would start working.

I had my second ECG in the beginning of December and saw the doctor for the results a couple of days after Christmas. I knew what he was going to say. I saw my primary care doctor for a diabetes follow up before Christmas and she told me that the results showed my heart at the same 40% - 45% functionality. It made sense to me that if the function was the same, there had been no change. That is exactly what my cardiologist told me. He said that to get my heart as healthy as it could be, I needed to have that valve replaced to stop the mitral valve regurgitation. I needed open heart surgery.

Valve replacement surgery was something I always knew was on the table. It was in the realm of possibilities, but I didn’t tell anyone about it. Why worry my family unnecessarily till it was a sure thing?  Now that it was a sure thing, I made an appointment with the cardiac surgeon, and my sister-in-law and I went. She is my second set of ears, and always thinks of questions that I may not think of, so she is my go to person to bring with me to all important doctor appointments.

After contemplating everything he had to say, mulling it over, researching the procedure and the surgeon, and freaking out a bit, I called and scheduled the surgery. So, the second week of March, I’ll either have my mitral valve repaired or replaced. The surgeon won’t know which till he actually gets in there and sees what is going on. But, more than likely, I think it’ll have to be replaced.

Repairing the valve is actually better because once it’s done the possibilities of needing future surgeries are slim. If it’s replaced, the pig or cow valve is only good for fifteen or so years, and I’ll need subsequent surgeries. My life expectancy is already reduced by fifteen to twenty years with the cardiomyopathy alone, adding in more surgeries and more risk is, well, shitty. I also have the option of a mechanical valve, which will last for the rest of my life but will require me to be on blood thinners to avoid clots. The surgeon and my cardiologist both preferred the pig or cow valve, because of the long term PIA of having to constantly get my blood checked when on a blood thinner.

Now I wait. I have three weeks or so till surgery and as time goes on I’ve gone from terrified, to freaked out, to resigned. I’m planning things to knit and crochet to cover the healing scar in the warmer months. I already have a ton of shawls and such for when the weather is cooler.

As an aside, I won’t be ashamed of my scar, but as it heals it doesn’t need to be exposed to the sun. Nor do I want anyone staring at it. I know it will eventually become a thin white line (which is what happened with the scars on my right knee and back), but until then, and after it heals, I’m going to make every effort to cover it up with fabric and sun block.

I’ll post when the day comes and when I’m back home again. Please keep me in your thoughts and prayers, good vibes, whatever works for you works for me.

Now that you’re all caught up, you can look forward to lots more boring cat and knitting/crocheting pictures in the weeks till my surgery.

Sunday, February 14, 2016

Tuesday, February 9, 2016

A few months later...

I’ve been agonizing about what to write about next. The biggest developments happened in the autumn, and not much else happened in the spring and summer. In March I had to do a couple of sleep studies, and it was determined that although I normally wouldn’t need a CPAP machine, I needed to use one because if you stop breathing while you sleep, you stress your heart. Picture below is of the cool funky machine I used for the sleep study.

I had my second ECG in July and my heart function improved to the 40-45% functionality I currently have. The doctor adjusted my medications (upped my dosages) since I responded so well, with the hope that my heart would continue to get better. SPOILER ALERT - it didn’t.

September rolled around and with it, football! Not only the pros and college, but my nephews both play for their high school team. Which meant three games a week!  Monday, Wednesday, and Friday I was in the stands cheering on one, the other, or both of the boys. It was at one of the games that I noticed my eyesight changed. The year before I was able to see the down markers on the other side of the field, but this year, blurry. So off I went to the eye doctor.

He did all the tests. My eyesight changed dramatically. I told him about my heart troubles and thought maybe there was a lack of blood flow to my eyes which may have caused it. He was very through, asking all kinds of health questions and even took a photo of all my meds so he could look them up when he had time, to see if any of them could possibly mess with my eyesight. After the exam he determined that it most likely was that I have the beginning of cataracts developing in both eyes. I’ll probably need surgery to repair that in a couple of years (yippee). The most likely reason my eyesight changed is because the location of the new developing cataract is such that the light hits it and warps it so it screws with my vision. New glasses and new contacts. Ka-ching.

I was also having severe pain in my left thumb, at the base where it meets with your wrist. I had an x-ray and it was determined that I have arthritis there (this was not a surprise). So I was referred to a rheumatologist for a cortisone shot. After seeing the list of medications I was taking, and correctly assuming I had CHF, he asked if anyone had tested me for autoimmune diseases. No one had. He told me that some times autoimmune diseases can cause CHF, and if I was okay with it he’d like to test me for them. Sensing there was a possible solution to the mystery of HOW DID I GET THIS, I agreed to the tests.

One cortisone shot and ten big vials of blood later, I was on my way home to wait two to three weeks for the results. The doctor told me that some of the autoimmune tests were very involved and would take a while to get the results back. A few days later he called me and told me that my vitamin D level was very low (it’s common) and so another Rx was called into my pharmacy. Then he asked an odd question:

“Is your blood sugar usually high?”

“No. But when I was in the hospital it was a little high a couple of times. The doctors told me it was because I was on such a powerful diuretic it was messing with my sugar levels.”

“Is anyone in your family diabetic?”


“It’s probably okay. We’ll check it again the next time you come in.”

All righty then.

I went about my day, not thinking anything about it till that evening when my primary doctor called and gave me the same results (they’re part of the same medical group) and asked the same questions with a totally different outcome.

“Your glucose level is high. You need to see me as soon as possible.”


“I’ll switch you over to make an appointment.”


I saw him 36 hours later, he did a glucose test which came out very very high. For those of you who don’t know about these things normal range is 70-140.  I was over 470. He put me on oral medication and sent me to “diabetes school” at the local hospital, where I had to learn how to be diabetic.  Truthfully, I broke down in the doctor’s office. How many things can go wrong with one person in a year?  When I got up to follow him out of the office he hugged me. I needed it.

The next week, I went to learn all about diabetes and how to manage this new wrinkle in my life. When I learned how to use the glucose meter, the nurse took one look at my machine, told me to wait a minute and left the room. When she came back she told me that my glucose was so high the machine didn’t register it and she had to download it to her computer to get the actual number, which was 660. Obviously the oral med was not working. Her protocol dictated that she walk me over to the ER where they would give me an insulin shot. My eyes bugged out. Then she told me she wanted to talk to my doctor first and she left the room and called.

Luckily, she got one of the two doctors I see on a regular basis. She happens to be a specialist in diabetes care, so the nurse was able to change the diabetes school order with the doctor to include an insulin shot so I didn’t have to go to the ER.  I learned how to inject myself, and got samples of my insulin, needles, and all the other stuff I needed.

Over the next few weeks my doctor and I were in almost constant contact, adjusting medications, adding in another injectable drug, changing doses and doing a lot of blood work. I also noticed that I couldn’t see out of the new contacts and glasses, and I went back to the eye doctor, told him about the diabetes. He had initially discounted that for the cause of my vision change since I have no history of pre-diabetes, nor does my family. I was able to return the contacts and get the old diopter back again. My next visit to the rheumatologist included me telling him I was shocked he didn’t think my glucose number was a problem. I don’t remember what he said about that. He did tell me that I have no autoimmune diseases, or rheumatoid arthritis.

So how did I all of a sudden become diabetic? My doctor told me that if you are using a lot of steroids, oral or inhaled, it can screw up your blood sugar. I was using a lot of inhaled steroids when I thought that I was having breathing problems before I was admitted to the hospital. 

To sum up: More medications. I do still have the beginnings of cataracts, so I have those surgeries to look forward to. I don’t have any autoimmune diseases. I do have plain old arthritis. All my other internal stuff works just fine since we’ve been doing blood tests all along.
I know this one was kind of long and I hope it wasn’t whiny. There was a lot to talk about. The next time I post it will all be about the ECG I had in December!  I know you can’t wait.

Or maybe it’ll be another kitty picture.

Or knitting.