Tuesday, January 19, 2016

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?”


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.

Saturday, January 16, 2016

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.

Tuesday, January 5, 2016

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?

Saturday, January 2, 2016

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!