Ouch!

Quick update: I'm home from the hospital and the surgery went better than expected. My mitral valve was repaired which was the best scenario. No future surgeries will be required as they would have been with a replacement. I may even be able to get off of all the cardiac medications I've been taking the last year, which is great news!

One of the coolest things I got at the hospital was a pillow. It's a very sturdy heart shaped pillow that I use to "hug" when I need to support my chest/sternum (sneeze, cough, laugh, stand up...).  What's so cool about that you ask?  Here is a picture of it.

My surgeon personalized it with the type of surgery, the date, and he signed it (like a Rock Star! LOL) He also drew the repair on the heart.  I love it and have got a lot of use out of it.  I'm sure I'll still be hugging my heart for a few weeks to come, but the personal touch will have me keeping this for a long time to come.

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.

Look what Fanny got for Valentines Day!

That's right. "Pre-worn" wool socks!

Valentines Day

This was posted in Facebook by Elizabeth Gilbert and it is beautiful. It is by graphic designer Emily McDowell. Wishing you all love and happiness.

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?”

“No.”

“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.”

“Really?”

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

YIKES!

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.

Scary Stuff #2

I left a little tidbit out of my last post. I knew that after a long and boring weekend, I’d be having a cardiac catheter procedure to figure out why I had Congestive Heart Failure. For some reason this freaked me out. I knew I’d be sedated during the procedure, which I translated to being conscious. Dental work is bad enough, and I’m talking about fillings - with Novocaine - and I’m still stressed out and fearful. Can you imagine how freaked out I was for this procedure?

The time came and I was wheeled down to the cardiac suite prep area. Two nurses were assigned to me and they were like a comedy team. They had me at ease (-ish) and then they started checking through all my paperwork, asking me the usual questions; name, birth date, etc. It was then the theater of the absurd started…

“Is there any chance you’re pregnant?”

“No.”

You have to realize that I had been irradiated every day I’d been there, at least once, since I was admitted to the ER. Every single time I had to go through the “name, birth date, etc” and “Any chance you can be pregnant?” routine. I’m sure the answer had been recorded every time, not to mention it hadn’t changed in four days.

“Are you sure?” one of the cardiac nurses asked me.

“Yes.” I tell her.

“Well, has anyone done a pregnancy test on you since you’ve been here?” she asked me but was looking at the nurse with the computer and my records.

“No. No one has done a test.”

“Can you get up and pee?” she asks me.

“No. I went before I came down here, so I won’t be able to go again. Besides… I’m not pregnant.”

“We need to do the test to be sure. We only need a little bit.”

I laughed, incredulous. “I’m fifty-three years old. I am single. I am NOT pregnant.”

“Are you telling us that you won’t let us do a pregnancy test on you?”

“Yes. I’m telling you that.” I mean, seriously. I know the whole “House” quote, “everybody lies”, plays into their thinking, but you’d think that what was good enough for the rest of the hospital’s technical staff would be good for these two.

“Will you sign a document waiving our responsibility if in fact you are pregnant?” one of them asked. Now they’re all business?

“Yes.” I said and laughed incredulously, again. Honestly. Crazy pants!

They brought the form over and I signed it. The joking and putting me at ease ended since I was now a pain in the ass patient. They wheeled me into the procedure room, I shuffled onto another table, which the doctor and technicians could move, tipping me in different directions to get whatever they needed right. Then came the sedation, and thank God, I was out like a light.

The Cardiologist saw me the next day with my results. The cause of my CHF is cardiomyopathy. (Here is the definition from the Mayo Clinic: a condition where the heart muscle is abnormal. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body.)  The doctor told me that there are three causes of cardiomyopothy, heart attack, blocked arteries, and a virus. The cardiac cath ruled out heart attack and blocked arteries, which means this was caused by a virus.

Basically, sometime in the prior year to eighteen months, I caught a bug of some sort. We can’t pin down the exact time frame because I didn’t remember having a bad cold and definitely not a flu or anything. The virus that I caught decided to attack my heart and my heart won, although it took on a lot of damage. The poor little muscle was working at 25% of it’s normal capacity.

Don’t worry it’s better now. Through medication and time, my heart is working at 40-45% of normal.

The weird thing is that I don’t have viral cardiomyopathy, which is very rare and I only know the term from Beaches. It’s what the Barbara Hershey character dies from in the movie. I was envisioning needing a heart transplant, not getting one and passing away on the deck of a beautiful beach house. I told you I was bored. My imagination went crazy.

The rest of my stay in the hospital was incredibly boring. I looked forward to the daily visits from my family and for the times that the parade of crazy roommates would be out for testing or asleep so I would have some peace and quiet.

I was released from the hospital on January 19th. So today is a sort of anniversary, too.
So goes the beginning of my crazy year.

Scary Procedure #1

As I was getting sicker and sicker I was to the point where I couldn’t sleep because if I laid down I couldn’t breathe. Being an insomniac and in a very busy hospital unit, with an old lady who yelled everything she said, and was confused on top of it all helped contribute to me staying awake during most of my stay in the hospital. The next morning my primary doctor came in to see me (I love my primary doctors. LOVE THEM!) and told me I was retaining a lot of water, so much so that I had water on my left lung which needed to be drained. It was part of the reason I couldn’t breathe or speak much above a whisper. I knew, from watching medical dramas on television, that this was going to be painful, they’d have to slice me open on my side, feed a tube in me and wait for the fluid to come out. That freaked me out.

NEVER base any supposed medical knowledge on what you see on TV.

I was taken down to a relatively small procedure room for the fluid draining. They crammed my bed into the room, which already had a bed in it as well as a crap ton of ultrasound and x-ray equipment. Then three people crammed into the room with me. There wasn’t much room to maneuver, I had to sit up for the drainage, and they were able to get me situated and the extra bed back out in the hall. They described the procedure which involved a very long needle being shoved through my back, between my ribs, into the area around the lung that was full of fluid. Then came time to sign the release.

“Blah, blah, blah… dangerous… blah blah blah… lung could collapse… blah blah blah… death.”

“Yeah, but you’re going to make sure that doesn’t happen, right?” I asked the guy who was going to do the procedure. He just stared at me. “Right?” I asked again and he kept staring. I took the pen and signed the paper. Oh well, I guess I could die.

He took up his place behind me. Another gentleman stood in front of me and held his hands out for mine. “If it gets too painful, feel free to squeeze.” I took his hands. The third member of the team took her place at the controls for all the machinery.

Then there was pain. A lot of pain and it got worse and radiated from the center of my back to my waist. I yelled and never squeezed the hands that were there for that purpose. They talked me through it and the pain eased. As soon as I caught my breath the pain came again, I yelled more and then they were done.

I was brought back to my room, got back in my bed and pretty much stayed there for the weekend, where nothing happened. I watched the NFL Wildcard games, had constant blood draws and vitals taken. I had to call the nurse every time I peed (so crazy, right?).

There isn't much more to the tale of my hospital stay. So I'll be back soon with the excitement of the next procedure they put me through!  I know your on the edge of your chair.

MOM! SHE'S TOUCHING ME!

So this is how it all started

On December 11, 2014, I went to the doctor because I’d been using my rescue inhaler a lot more than the normal once in a while I had been. I was wheezy enough that the doctor put me on nebulizer treatments and referred me to a pulmonary specialist.  I saw the specialist a week later and by then I was using the nebulizer the maximum amount of four times a day. My ankles and feet were swollen and I could barely make it from room to room without having to stop and catch my breath. He put me on a stronger inhaled steroid, and casually said he had half a mind to send me right to the ER to be admitted.

January 8th, was my follow up with the pulmonary doctor. The time between my first appointment with him and this follow up was nothing but a waiting game as I got worse and worse. When the day came I knew the doctor was going to send me right to the hospital from his office, so I brought a few things with me, to make any stay in the hospital a bit less boring (power charger, iPod, book, etc).

When the day came, I didn’t feel as though I could drive myself to the appointment and called my sister-in-law, who was able to leave work to drive me to the appointment. She had to help me out of the house and to the parking lot, where I ran out of breath and clung to a handicap parking sign heaving in breaths. With the help of a neighbor and a police officer who responded to my sister-in-law’s 911 call, they got me into the car and she drove me to the hospital (the police officer canceled the responding ambulance).

We got there at three in the afternoon. I saw a pulmonary doctor and a cardiologist, who ordered tests and scans, which took place while my brother (who arrived straight from work) and sister-in-law waited and worried. I was finally taken to a room at one in the morning. They made me step on a scale before I got into the room and I was shocked to see what I weighed. It had to be wrong. But I was too exhausted and caught up between nurses, nurses assistants, techs, orderlies, and my brother to really worry about the exact number. Later when I was settled in my bed, I did the math. 50 pounds.  I was 50 pounds heavier. That couldn’t all be the swelling could it?

The next morning the doctors came in one by one and explained to me what needed to be done as far as tests. They all told me I had a problem with my heart, that I was retaining fluid that I had to get rid of, and that they needed to do more tests to see what exactly the problem was with my heart. I was also informed that all my fluids, in and out, had to be measured and that I needed to be weighed every day. I was put on a diuretic and my heart function was constantly observed (which was a pain since I had to pee every half hour-ish and I had to deal with a monitor and wires).

I’ll leave you with all these awful images, I promise I’ll post something happier next time. Like the pair of socks I’ve been knitting that I’m almost finished with. Just a couple more inches to go and I’ll have another pair of wool socks just in time for this freezing cold weather.

Wasn’t it warm just a few days ago?

Happy Anniversary to ME!

It's not a great anniversary really. I've been living with Congestive Heart Failure for a year now. The one year anniversary means a lot to me because when I was released from the hospital late last January one of the first things I did (after laying on my own bed surrounded by my kitties), was pull out the computer and look up all the info I could on CHF.  There was a lot of information on the Mayo Clinic site, and I read about my disease there. I figured they were a lot more reliable than WebMD.

What I found out was that nearly 50% of newly diagnosed cases don't survive the first year. Now I know I'm way to young to even have this disease and most of those 50% are elderly. But HOLY SHIT! That's bad. I was going to link to the information, but I can't find it on the Mayo Clinic website now. The only thing that comes up is an article on WebMD and a couple of other sites, that says 90% of new cases die in the first year and 50% die in the first five years. So I guess I have another four years till I can really celebrate. (Thanks WebMD! Gah!)

I decided to start this blog because I need a place to share with friends and family. If you want to keep on checking in, please do.  It's the best way I know of to share without broadcasting to all of Facebook, and not bugging people who just don't want to bother with it all. I might get a little whiny and dramatic - fair warning. I want to post the good that's going on too and I'll make sure it's a good balance of the two. I'm going to share what happened to me, how the whole CHF diagnosis came to be, how I got sick, what I'm dealing with now and all that.

So that's what happened last January... I was diagnosed with Chronic Heart Failure.

How was your year? Much better I hope!