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In the Hospital, Heart Catheterization, Day Two

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So I checked into the hospital last night. Got here about 8pm. We brought sandwiches from Schlotzky’s with jalapeno kettle chips. Not my usual fare, but it’s what I wanted. I had to eat it quick, because they wouldn’t let me eat after midnight. I even had a lemonade. I like lemonade, but my homemade lemonade, made with lemon, raw honey and a pinch of cayenne–well, nothing beats that.

So… I live at home and everything is great, no home health, do my own thing, etc. The heart cath was supposed to be done outpatient today. Come in the morning, do the procedure, and then go into recovery and then go home. Same day, in and out. But the hematologist says he doesn’t want me to not be on blood thinners at all. So okay, check into the hospital the night before, and when I would usually take my Lovenox (blood thinner injection), I would instead go on IV heparin. I’m not sick. There’s nothing wrong with me. The right-heart cath is diagnostic only, so there’s really no need for anything fancy–just heparin IV and let me sleep until it’s time to go get the cath done.

But noooooo…….. (more…)

Hard to Wake, Hard to Sleep 9/24

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I have a doctor’s appointment tomorrow with a hematologist. I went to see him for the first time a few months ago, three years after I was diagnosed with CTEPH and massive PEs. When my best friend had PEs even less severe than mine, they had a hematologist come visit her in the hospital. I never saw one. I had another round of blood clots and PEs, severe enough to spend another week in the hospital after the first round, and they put an IVC filter in, without consulting a hematologist. Then I had two more rounds of PEs that I documented, and a couple more that I know because of how it felt that they were PEs, but I didn’t go in and get them documented.

All of this while on therapeutic levels of coumadin (warfarin). They tried to blame me, the doctors did, by saying my PT/INR was off, but I had a home machine. I took mine weekly, which was more than most people do. My PT/INR was always high–in fact, it was always high enough that they sometimes said I was a bleeding risk. So high that one time I was bleeding so badly internally that I was hospitalized for it and put on fluids and IV bags of potassium and magnesium and a week later, a bag of blood.

Warfarin failure, I discovered it was called.

How did I discover there was such a thing as warfarin failure? By reading Google search result links. Apparently, though it is rare, there are some people who report therapeutic on coumadin/warfarin, but they do not have a stop in clotting from it. And I seemed, after repeated breakthrough clots, to be one of those people. Then we ask the doctor at that point if it’s possible the warfarin wasn’t working and that we could have had warfarin failure, and he at first said no. Then he sent me for another V/Q test that showed active PEs, new ones, smaller than before, but definitely new, that confirmed it. He had no choice but to admit what I’d been telling him for two years at least.

Even so, still no hematologist and no change in my meds. For two 1/2 years, I’d been having chest pains and throwing clots, for two and a half years I’d been telling them…. but they never listened to me until that V/Q scan.

That hematologist said he wished they’d never put the IVC filter in. He said that sometimes clots form on the top of the filters and cause small blood clots to the lungs. Lovely. They never told me that when they asked for my permission to insert it. He wasn’t consulted. Would have been nice to have all the information before I made that life-long affecting noninformed decision.

There were so many things done wrong that I can’t even keep up any more. And the truth is, I don’t

 

What Not to Say to Someone Who is Dying 9/10

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Since I’ve been sick, since I’ve been chronically ill, and then later, learning it was expected to be a terminal condition, I’ve had a lot of people say a lot of things to me. Some things, I don’t mind so much. They are meant well, and they are kind things from kind people. But there are some things that just get on my nerves. And I’m not the only one. It’s not just terminally ill people, but really any chronically ill person who is likely to feel this way.

If you’re friends with someone who is terminally or chronically ill, there are certain things you should not say to them. Depending on sense of humor of the person who is ill, there can be jokes and sarcasm about the illness, if you know the person well enough to know they will like the jokes. Those things are all fine, and in fact, usually welcomed, because it helps normalize the illness. Which is really what I think most of us want–to ‘normalize’ our lives, so that our illness isn’t always the main topic of discussion or worse yet, a topic to be avoided and ignored and danced around. I don’t mind jokes about death and dying, just because I have terminal illness that might kill me any day. In fact, I tend to make some of the funniest jokes myself.

The other day, I was laughing so hard I couldn’t breathe (which takes on a whole new meaning when you’re on oxygen therapy, let me tell you) at something my son said and I told him to stop being a dork and making me laughing, ’cause he was killing me, and he’s feel really guilty if I literally died laughing. I’ve made jokes about Lynn cleaning up my computer for me if I were to drop dead suddenly. Sometimes, when I’m in a pissy mood, I’ll make morbid jokes that aren’t at all funny. Fortunately, my family won’t let me get away with it and instead of looking at me with pity and worry in their eyes, they call me on it and tell me to snap out of it. Good for them! (more…)

9/6 Another Bad Day

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Today was worse than yesterday. My arms are going numb. My fingers won’t work like I tell them to. Typing is hard. I’m sick to my stomach from the pain. Took Zofran to help with the nausea. I can barely keep my eyes open from the pain pills making me sleepy and groggy. I wanted to write today. Not going to happen.

I’m going to go back to bed and pass out. I’m drenched in sweat and trembling. This really sucks.

I hate pain.

I’m trying to focus on my gratitude. It’s so hard when you’re in pain.

I’ll come back and try to be grateful when I wake from a nap.

Love and stuff,

Michy

 

9/5 It’s All About Control

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This is the third or fourth day of waking with intense pain so bad I can’t think or even talk well cialis aus eu. I had to wake someone up to get me a pain pill at about 5:45am. I couldn’t sleep through it. When it happens in the morning early like that, I try to sleep through it, but I couldn’t. I took a whole pain pill this morning, when I usually take a half of one. I was able about 20 minutes later to go back to sleep, and when I finally did wake around 9:15 or so this morning, I was doing better.  I managed to get up and make breakfast. We’re doing a managed calorie and nutritional diet, but my family doesn’t really know that. I manage it through MyFitnessPal.com. I’ve been enjoying using it. I’ve lost 20 pounds since I started using the website. I love that. The family has loved the food. Everyone who has needed to lose weight has with it. That’s awesome. If you want to see my recipe for breakfast this morning, you can see it on my food and recipes blog here.

The reason I do the food stuff is because it’s one thing I can control about my health. I can’t change the fact I have CTEPH. I can’t change having congestive heart failure. I can’t change having the Factor V Leiden gene mutation. I can’t change having hypothyroidism. I can’t change having adrenal insufficiency.  I can’t change having any of the other conditions or disorders that I have that come with being who I am and living with a terminal illness.

What I can change though is other aspects that might have contributed to my being sick. They didn’t make me sick, per se, but they contributed to my being sick. And I can’t go back and change the past. But I can change the future. (more…)

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