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Long Time No See & Surgery


I stopped writing in the blog for a couple of reasons–sometimes, it feels I’m writing in a lonely vortex. On facebook, I get feedback, comments, likes, smilies… I need the interaction. It keeps me strong. But I also stopped writing for a while because the blog felt like I was doing verbal emotional vomit. Everything felt so negative all the time, and that’s not who I want to be.

But being sick is hard. It takes a lot of slogging through negative stuff. So I took a break. In the meantime, folks were asking if I were still alive! I’m alive!

In fact, for about a year, I was very stable and was able to mostly enjoy my life. There were things that were hard, but there was more good than bad. I can’t say that any more. I ended up with pneumonia last year about this time, and it was bad enough I had to be in the ICU on an autovent to breathe for three days and then spent 9 more days upstairs in a stepdown unit. Unfortunately, I wasn’t able to get my oxygen demands back down to where I was before the pneumonia, and we didn’t know why. So they do an echo and discovered that my aortic valve, which is bicuspid (and should be tricuspid), but that had been stable and unchanging for years, suddenly started fusing together. The stenosis went from moderate to severe in a matter of months.

Quality of life took a nosedive.

I do not go out to dinner or movies or events. I rarely even go into the living room. I spend most of my time in bed. Cooking and playing piano or being on the computer are all things I love doing but haven’t physically been able to do. After I fell and broke the tibial plateau of my left knee, along with tearing the ACL and MCL, my mobility went down to almost nothing. I can’t have surgery on it because it’s not a lifesaving surgery, and that means my knee is unstable and it hurts quite a bit at times.

I use a bedside toilet that my family has to dump for me, because I cannot walk into the bathroom any longer. When I take a shower, I have to take the wheelchair part of the way in, but it doesn’t fit through the small bathroom door, so I have to use my walker to make it the rest of the way. There’s a regular chair in there halfway for me to rest–that’s how hard it is for me to walk. Just taking the two steps from the bed to the toilet knocks the wind out of me for a good full minute, with my sats down to 88 and my heart rate in the 130s… just for getting out of bed and taking 2 steps.

Throw in the plaques all over my body, especially those on my face and arms that people can see, from the psoriatic arthritis, the pain from that and the gout (which is the most excruciating pain I’ve ever felt), trying to manage the side effects of the harsh medications that are keeping me alive, the spewing from the chrons like symptoms, the malnutrition, the swelling and fluid retention, the adrenal insufficiency, the high blood glucose from the steroids, the weight gain then the weight loss, saggy and flaky skin, and it goes on and on. It hurts to move. It hurts to breathe. It hurts to live.

So now…

The best cardiology team in the country, at the country’s fourth best hospital in the the US and the best hospital in Texas, Houston Methodist Hospital, now tells me it’s time to finally do something about the aortic stenosis from the bicuspid aortic valve. They want to replace it in a scary surgery.

Surgery is risky for anyone. But for me, it is very risky because CTEPH patients have issues with anesthesia and coming off the vent both. They have to stop my heart twice during the procedure. My job is to keep breathing and wake up. It sounds easy enough, right?

Scary stuff. They talked about how if that happened, I’d have to get that throat thingy to breathe through probably for the rest of my life. Yeah, that would make life so much better, wouldn’t it? LOL nope. I’m thinking nope. I’ll just keep breathing, if that’s quite all right with them.

They think I have a great attitude and a strong will, so they tell me that is important. They said I was strong. The minute they said it, I wanted to cry.

I don’t feel strong. I am just going through the motions. I’m doing everything they ask me to do, because really, the only other choice is to give up and die, and I’m not ready to do that yet!

I have people I want to meet! I want to take that RV tour around the country and meet all my friends. I have books I want to write and get published! I want to see my kids have kids or get married or graduate from college! I have things I want to do!

So this past week, I’ve been preparing for surgery. I had a CT-TAVR scan, an abdomen and lower extremity scan, and a sonogram of both sides of my neck. They did pulmonary function tests (I was at 39% of expected–ouch), and blood work. Then, today, at the LAST MINUTE (okay, not quite the last minute, but late, still) they tell us we were supposed to meet with the anesthesiology team for an interview. Sigh. You couldn’t tell us sooner? So tomorrow, I have to go all the way back to Houston (it’s an hour’s drive)… that means getting up, getting dressed, trying to make it to the car, into the car (which is harder than you think since my wheelchair van is out of commission for a while), and then we drive one hour one way to go and talk to them for maybe 15 minutes. It’ll cost me 45 bucks and we’ll have to eat something in the cafeteria–and then we drive all the way back home one hour and reverse. It’s a lot of work for nothing, because it didn’t have to happen, since I was there TWO OTHER TIMES last week and could have just seen them at the same time.

Miscommunication my ass… they forgot to schedule it. If it weren’t for Lynn calling and bugging the surgical coordinator, I probably wouldn’t be ready for this surgery AT ALL. They scheduled nothing. She did all the work for them. It might sound like I’m complaining about them when I was just praising them so much. Maybe I am a little. But I was fast-tracked for this surgery, so they are fitting me in their schedule much sooner than most patients do. Usually, there’s a lot of time to do all this. I didn’t get that time, so it’s tough for her to keep up, I guess.

I want you guys to know though, I love my doctors. The cardiology team is amazing and I am litrally trusting my life to them.

I’m going to be okay. I believe it. This isn’t going to change my CTEPH status. But it will greatly reduce the strain on my heart, reduce my need for as much oxygen as I’m on (I’m on 10 liters per minute, which is A LOT), and it might let me move around without being so winded and out of breath. If it takes me back to where I was before the pneumonia, I was walking some then and my oxygen levels were at 5lpm. If I could just not be so tired so I’m not sleeping 16 hours per day, I’d be happy.

I need ya’ll to understand that this isn’t going to fix me. This is, hopefully, going to give me about 5 more years of life though. When you’re living day to day, 5 more years seems like an eternity. And who knows what new technologies they will have in 5 years that I might qualify for. They are already doing a new procedure for CTEPH patients I am hoping to qualify for…. there’s a chance I can outlive this disease until they cure it!

But nothing in life or death is guaranteed. The other day, a friend passed away in her sleep… just one year older than me. She had no known health issues. Just here one day and dead the next. It’s all so random. By rights, I should have died, but I’m still kicking. She should have lived and she’s not. I don’t presume to understand.

So all I have is my hope. I hope. I hope that this works and I feel better. I hope that I live long enough to get cured. I hope the surgery is easy and the doctors do a good job. I hope my family is comforted during the procedure. I hope you guys feel comforted while you pray or send positivity my way. I send gratitude back to you.

I don’t want or need miracles here… I just have a little hope, and that’s enough.

In the meantime, this stuff gets expensive. Deborah set up a GoFundMe account for me to help get some things I need to be healthy and safe… if you’d like to pitch in, even just a few bucks adds up. I’ll be sure to send plenty more gratitude your way. If you can’t pitch in, please share if you can. I don’t want anyone to hurt because of me, so only give if it’s safe and comfortable to do so.

I love and need you all.


Love and stuff,



PTSD: Does it ever really go away?


I’m sorry I missed posting the ending to the blog about the PTSD trigger. I actually passed out and fell on the floor, hit my head on a chair (it was cushioned!) and twisted my back, broke my big toe–again–twisted my ankle, and got a bruise on my hip and both my knees. It was hard to get up off the floor while shaky, I’m weak anyway, and then with the pain from the fall. But I managed. Was stiff this morning, but I actually hurt more tonight than I did when I woke. Still pretty achy. But I’m tough and I’ll survive–in fact, the cardiologist told Lynn after the wide-awake procedure that I was tough. Yay, me!

I have to go to the cardiologist tomorrow, so I’ll be sure to let them know what happened. It also means I need to finish this blog post up and get to bed. Yeah, we’ll see how that goes.

So where I left off, I was doing pretty good in the hospital. Been there over a week. More than ready to go home but happy with the progress we were making. I was expecting I was waiting for an open cardiac MRI, and along with the infection in my arm, we figured I was going to be there for a couple of more days, at least. (more…)

So I Went, And So It Goes


So after my last post about how I needed to go to the ER, I did, in fact, go. Believe it or not! No, seriously, ask Lynn. She’ll tell you. I was a good girl. It was an interesting experiencing too. After all the hell UTMB put me through, to see how a real hospital is supposed to handle ER services was interesting. I have this experience with hospitals back home that was not stellar but wasn’t bad, as far as hospital ERs go, and I’ve been to a few ERs in Dallas when I lived there, mostly with my son when he was tiny, and they always treat you differently with a baby, so it’s harder to judge. But I realize now I should have known something was wrong with UTMB.

First, there were the three bad procedures, two of them failed. (PICC line insertion and right-heart cath–remember these for later. They’re important) (more…)

Going to the ER


So I’ve been sick now off and on for about two ¬†months. I kept thinking I was going to get over it, and I’d start to feel a little better, then I’d get worse again. When my friend Rissa came to visit, I could hardly get out of bed and spend any time with her and after she left, it only got worse. now that Buffy is back from Colorado, I have no choice. It’s time to go in. We called the doctor, and the doctor’s office seemed a bit flabbergasted that I hadn’t gone in already. They basically said there was just too much going on at one time for a doctor’s visit to do anything. So the hospital it is. But this doctor can’t do a direct admit, which means I have to go through the ER.

I hate going through the ER. A lot of you guys and gals don’t know it, but with a direct admit, you get to go right to your assigned room and wait until they start doing stuff to you. But at the ER, you have to go through the trauma docs who decide what’s wrong with you and then they decide whether to admit you–EVEN IF the doc has orders. It’s their license and their name, so they have to do the work. That’s just how it is. Which means a lot of really unnecessary poking, prodding and needle punctures.

Also, I’ve never once met an ER doc who has ever even HEARD of CTEPH. I have, EVERY SINGLE TIME, had to explain what it was, and why they can’t give me a fluid bag (something they seem to do with just about everyone as a matter of rote). So while I’m lying there feeling like shit, I have to basically give the doc a lesson about the rare disease carrier that is me.

But so that you guys can understand why I’m going to the ER, here I will give you a short (ha! me, short, hahahahah) answer: (more…)

I Didn’t Want to Lie


This post has been a long time coming. I’ve written it in my head a million or so times, lying in bed in the early morning hours, but when the time came to write it down, I never managed to do it. Something else would easily distract me, and I’d forget to come back, mostly likely on purpose. I avoided it. But it was always there in the back of my mind and it taunted me as much as the stuff going on in real life, because I was needing to write about real life.

But when I first made this blog, I promised myself I wouldn’t do it if I couldn’t be completely open and honest about the experience I was having with my health. I’ve read so many blog where people try to be upbeat and you can tell it’s not real. Then other blogs where people are pleading sympathy or asking for money, whether they were truly sick or not doesn’t matter. For me, I was only going to do this if I could tell my truth, as I lived it.

And sometimes that truth got pretty dark and depressing. And when it did, it was hard to write about it, because it felt like all I was doing was complaining, like life was miserable and not worth living. (more…)

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