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…)

How to Know When to Sue for Medical Malpractice


I’m in a quandry. Ya’ll know how I sort of spiraled into a depression a few months ago? And I’ve been struggling to get out of it. Well, I’m mostly on the other side of the fence and I’m starting to feel and be me again, and that’s fantastic. But now I have to face the things that brought me to the point of being depressed, or else I risk it happening again. And writing things out is one of the ways I work through things in my head. So here’s what’s going on right now with me, and at the end, I ask for your opinion on it, so please read this and give me a considered opinion. I would really appreciate it!


I don’t know if I should sue for medical malpractice for several things that happened to me at one facility that caused harm to me and resulted in surgeon-2-391476-mPTSD and other physical trauma as well, which persists some to this day–including a scar that will never go away. It was, in my opinion, obvious malpractice. I’m running close to the statute of limitations on this, so I have to decide if I want to move forward soon. But how do you know when it’s right to sue versus when you’re just ‘sue happy’ as many Americans accuse others of? I don’t want to be one of those people that others blame for rising healthcare costs because I’m suing for something, but at the same time, I was emotionally, mentally, psychologically and physically damaged due to incompetence and error–as well as a marked lack of compassion–and I do believe I deserve some sort of a recompense for that. Note I didn’t say compensation, because really it’s paying me back for the damage caused, not giving me something in exchange for it.

After it first happened, I could barely even talk about it. I was wheeled out on a gurney and burst into tears the moment I saw Lynn standing there. She held me, hugged me, cried with me in the recovery area. I mentioned it at the time and was assured nothing like that should have happened, but I was unable due to my emotional state to stand up for myself. I know that sounds like a cop out. Anyone who knows me online would think that I am this strong, outspoken person, and for the most part, I am. But when YOU are the VICTIM, it changes things. You are in a vulnerable situation, and you feel raw and exposed and violated. And it’s hard to stand up for yourself when you’re like that. And for months after I COULD talk about it, I couldn’t talk about it without crying. To this day, I have to choke back tears whenever I tell someone the story, and I’ve tried to write it on this blog several times and I can’t get through it.

I can’t write it….

That’s how you know it was REALLY traumatic for me. I can’t write it.

But then, about two years later, I decided to allow them to do a second procedure, something different this time, but something I was assured would be very easy, in and out, everything would be fine.

And it wasn’t. It wasn’t fine at all.


Yep, they did this to me….

I was left feeling exposed and violated again, used, lied to, manipulated… I feel they made me sign things with the promise of doing things one way just to get me to sign the papers, but then once you’re in the operating room and strapped down to the table, anything can happen and you are literally powerless to do anything about it. Once they have your legs and arms and belly strapped to the table, arms out at the side, unable to move, difficult to breathe or talk, they can do just about anything to you they want–and I liken it to being tortured in my brain now.

And for a long time after the third and final time things were bad, I decided that it was just me. I mean, when I talked to anyone about it and started to cry, I was almost instantly invalidated. They don’t understand me though. I cry when I’m angry. I hate it. I hate it because everyone misunderstands and wants to comfort me, and I want to punch them for it!

But when I would tell people, I was get the consolation, “There, there…. it’s all right… everyone is scared during medical procedures, that’s just how it is…” and they actually convinced me that this was just how it is, that I was just dealing with my own active imagination and anxiety, and that I was the one being unreasonable.

They almost made me believe it.

Until I finally decided enough was enough, that I deserved better. I went to a new facility, a whole new facility with all my treatment, and I had the same three procedures done there with absolutely flawless precision and zero complications and a hell of a lot of understanding and compassion for my anxiety AND my past trauma. They talked me through everything, just like I asked them to, they gave my anxiety medication to help relax the anxiety I had about the procedure, and they did everything they could to make it as easy on me as possible. And when I realized how easy it really WAS and was supposed to be, I got even angrier at the other place for the trauma I had experienced.

If I’d never known anything better, I’d have never known the difference, and I would have died thinking *I* was the problem.

I sometimes wonder if that’s the case with some domestic violence situations too. The victims just don’t know that it’s supposed to be better than that. They just don’t know an difference. There’s a line in a song that is poignant to me about that… it says, “She never even knew she had a choice/ And that’s what happens when the only voice she hears is telling her she can’t…”

Anyway, that’s for an entirely different blog and different theme, but that’s where I was. I was a victim, and I finally KNEW that. It took me a while to get there, but now that I’m there, I’m angry.

But it’s worse than that. You see, after getting the results from all these tests finally being done at the new facility, it becomes increasingly clear that the REASON I have CTEPH and had the PEs that caused it in the first case is THEIR FAULT! THEY MESSED UP and I nearly paid the ultimate price for it. I’m fortunate that I lived through it, but in exchange, my life, my body, my existence has been radically altered in a nega924207_angrytive way.

I’m fucking angry… you have no idea. And I want them to pay. I want them to pay for every medical procedure I have to have from now until the day I die. And if I die early, which is pretty easy to do with a chronic terminal illness, then I want them to pay my family for the loss of my life.

But it’s not about money. I don’t need or care about money, though I’d take it if they offered it to me. What I want is for them to fix it–to take me back in time and make me well again and fucking listen to me when I tell them something is wrong and not just pat me on the back and tell me that I need to lose weight! When I tell them I think I’ve thrown another clot, don’t just patronize me and tell me that the warfarin (which I failed on) is at therapeutic levels–fucking test me! When your own x-ray doctor tells you the V/Q scan shows active NEW clots, don’t send your patient HOME and blow them off and say they are nothing, while the other doctor looks at the patient and says he won’t be responsible for sending me home! I was sent home! I could go on and on… but the clencher is, I am 100% certain that I and a good malpractice attorney can prove that I did not have to get CTEPH, that I could have prevented both the first and second and third round of clots that were thrown, and I if I hadn’t prevented the PEs, I could have easily treated them and had them resolve instead of getting CTEPH, if the doctors had listened to me at several key steps along the way and actually TESTED me for the things I said were wrong instead of blowing me off.

But I can’t go back in time and going to court and suing will never make me whole or healthy again.

So what I care about now is this: This place was a TEACHING facility. THIS TRAUMA I experienced is what they are teaching the students there. THAT is what’s going out into the world and one day might treat you, your children or grandchildren, and they are learning to be with them the way they were with me. And this is a world-class facility that people would come to from all around. It’s a public university system, which also means it treats some of our poorest patients too, people who don’t often have a financial leg to stand upon and fight from.

But I have that financial leg to fight. I can do that.

puzzle-heart-1440815-1-mWhat I wonder is if I have the strength to fight.

And it’s more than just the emotional strength, because in a normal world, I am emotionally strong enough to withstand what they throw at me. But it will be HARD. I mean, damned hard, under the best of circumstances. But I’m sick. Physically, I have to have oxygen 24/7. Some days, getting out of bed is hard, and I don’t think court is going to care that I am not feeling well–I’ll be expected to be there. It means being called dramatic. It means them using all my weaknesses against me, such as blaming the difficulty of the procedure on ME for things like the fluid overload (lifestyle) or my weight (I’m obese–most people are there days), or they’ll blame it on my ‘anxiety disorder’, which I didn’t actually ever have until this first procedure failed so miserably. I can prove my case, I know it, but it will mean having to defend myself.

That fight will take a lot out of me. And I don’t know how much time I have left or what the quality of that time will be. It’s already deteriorated quite a bit this year, and I worry it will just keep getting worse from here. Do I want to spend what’s possibly the last years of my life fighting in court systems? Is my life worth saving other lives along the way and will it really make any difference to hold them accountable for what they did? Will it change anything for the positive? (more…)

It’s Been a Long Time


I will be doing an update this week. It’s been hard to write here, because… my emotions have all been a jumble. I think I’ve decided to consult an attorney about some of the things that happened to me medically at one of the facilities I went to, so I can’t talk about a lot of that publicly until I decide, but once I do, I will be writing about it all along the way, because people need to know what they are getting into if they choose to hire an attorney to protect and defend their rights and interests.

In the meantime, here’s a post I put up on Facebook, unedited, about something that happened to me today when I went to have my pulmonary function tests. I’m supposed to have them done once per year to measure how much things are changing, but it’s actually been four years since I’ve had them done (just another thing this other place did wrong). But the new place is doing it right, and I had them done today. I’ll talk more about PFTs in another blog post (PFT – pulmonary function tests).

For now, here’s my post from FB:

So after taking a header off the end of the wheelchair ramp in my 320 pound electric wheelchair (which thankfully Lynn managed to keep from coming down on top of me when the chair and i went off the ramp), I knew it was going to hurt…. later. Right at that moment, I tucked (which must have been quite a sight, indeed), threw the oxygen canister one way, my cellphone the other way, and I went a third way and rolled. Thank goodness I did, or I’d have landed on my hands and knees, and I know better than to do that–the butt is padded (and how!), land on it! I rolled from my hip to my butt, and managed to miss any major damage (or so I thought).

I ended up lying flat on my back in the middle of the valet parking driveway. There are three lanes. I was in the middle one, just, you know, laying around, staring up at the concrete pillars above me.

My friends, there was a brief moment when I thought: I can just close my eyes, lie here and not get up. Just…. never get up.

But before I knew it, four valet attendants, one hospital attendant and people from their cars waiting to be parked were all getting out and coming toward me. The only thing worse than falling a foot or so off a ramp is having a bunch of strangers all running toward you to put their hands on you–and you’re an anxious introvert! Nooooo! I can do it, thanks, nope, don’t touch me, thank you, all right, I’m fine, I’m good, I’m getting up, see, nothings broken ow, no, it’s ow, i’m ok-ow-ay!

It took three tries for me to get back into the chair from the ground, as I discovered that 1) I probably broke my big toe but at the least I dislocated it 2) the part of my foot and toe that I broke two months ago, though i thought was fully healed and was no longer hurting… when you flex the toes and put all your weight on them to lift your body off the ground, you realize those breaks aren’t quite fully healed and still hurt and 3) it’s really hard to get up off the ground using your hands are leverage when several people around you all are grabbing your arms and trying to ‘help’ you. I know they meant well, but they didn’t know HOW to help and I almost fell over again! LOL

But I am actually quite grateful and pleased to see how kind everyone was. They were apologizing to me over and over, like it was somehow their fault I took a header off of MY wheelchair ramp with my chair. The ramp malfunctioned–that is in no way their fault.

But it got me to thinking about how we frequently apologize for things that we didn’t even have a hand in. I think what we’re trying to say is, I feel for you. I’m sympathetic to what you’re going through. I’m grateful it didn’t happen to me, even. We don’t REALLY mean we’re sorry when we say it over something like this. But to a near stranger, saying anything else feels too intimate and personal.

But we do it to our friends and family too. I’m sorry. I hate those words.

it doesn’t mean I don’t want someone to apologize when an apology is necessary, myself included, but I’m taking the words: I’m Sorry–out of my vocabulary.

From now on, it will be something like, “I’m grateful you trust me enough to share your pain with me.” instead of “I’m sorry you’re hurting.” Or maybe, “Thank you for cleaning up the mess I made.” instead of “I’m sorry you had to clean that up for me.”

Because I’m sick and not able to do everything I want to do, a lot of times I feel guilty when people have to do things for me. I’m changing the dynamic of that and moving to a place of gratitude about it instead. No more being ‘sorry’ for what I can’t do. Instead, I’m going to be grateful for what others do for me. i always HAVE been grateful, but the guilt gets in the way of gratitude. Maybe if i change the language, the feelings inside will change too. I’m a writer. Language is everything to me. It’s powerful.

This was what Lynn and I were discussing in the meditation room at the hospital today. I spent two hours in the meditation room, thinking, crying, talking. I needed the sensory deprivation that the quiet, cool room gave me. Away from my usual reality. I am so grateful to Methodist hospital for providing that to us. It’s a lovely small room in the outpatient clinic. They have a chapel and a healing garden that are lovely too–but this little room was what I needed today.

Of course, this was also after I learned that my lungs are working at 51% capacity of expected. It was 67% four years ago, so this is not good news. Also, four years ago, I showed only restrictive lung disease with perfusion defects. Now I’m showing both restrictive and obstructive lung disease will both filling and perfusion defects. Which all pretty well sucks.

But it explains a lot too. The question is, why? Why are things getting worse without any acute ‘events’? Hopefully we’ll find out when I see the pulmonologist. But that has been postponed because they wouldn’t let me do the 6 minute walk test after the fall. I’ll have to reschedule it for next week and then see the doc the week after.

In the meantime, i start with the lymphadema clinic on Thursday for my initial assessment on getting the volume overload and fluid off my body. I’m ready to get rid of all this excess weight and fluid now!

So pardon my ultra long post. I was going to put it on my blog (probably still will) but no one reads my blogs any more (pout) so I have shied away from them. Maybe because they are too long. Hell, maybe no one will read this, but it sort of feels good to write it out. So thanks for letting me have a venue to do that, and thank you so much for listening/reading and caring.

You guys posting and commenting as i go through these things… ya’ll are the reason I get through them. Ya’ll are the reason I keep going and don’t just leave appointments sometimes. ya’ll lift me up when I’m lying on the ground staring at pillars thinking I’m just going to lay there and never get up again. You guys get me up again.

And I love you for it.


love and stuff,



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