I had read all about the procedure. I knew what to expect, for the most part. I even watched videos of it on YouTube. None of the videos I watched even came close to what I experienced, but that’s beside the point. I expected to be nervous and have anxiety over the procedure. That’s normal. I expected that, given my past and history, I would have more than the normal amount of anxiety over the procedure, and I was prepared to deal with that too. I anticipated possible negative outcomes, like the possibility I’d have a heart attack or abnormal heart rhythm, that they’d puncture a lung or I’d lose blood rapidly and need a transfusion. These are all super duper rare things, but I was prepared to accept that they were possibilities that might could happen. What I never expected was that I would go through all the pain and discomfort of having the procedure done, actually having it done, but not being able to complete it and get any useful data for the test. I went through the whole thing, and I got nothing to show for it but the bad memories, the bruises and the scars.
But I’m getting ahead of myself here.
The PICC Line
The whole saga really began in 2011, so for you to understand what happened on the day of the right-heart catheterization, you have to go back with me to the hospital stay I had a few months after my initial diagnosis if CTEPH. I had had a second round of massive pulmonary embolisms. The doctors wanted to try to get a PICC line in me at one point, and so we go into the OR, I get on the flat and cold table, where it’s hard to breathe while I lie flat on my painful back, with my arm strapped to a board while the nurse practitioner pokes away at my arm, trying to get a PICC line in. She was able to get the vein she wanted, but when she tried to advance the line, every time, she was unable to advance it. My arm was numb, and I didn’t feel most of what she did to me. But she did poke my arm 9 nines. We counted all nine holes the next day and the resultant bruises from them. Every time she’d hit the vein and it flashed back, she’d start to advance the line and it just wouldn’t advance.
On the second to last attempt, she hit a nerve. When that happened, it shot through me like a jolt of electricity had zapped me. One of the worst pains I’ve ever felt. I hate, hate, hate zapped nerve pain. It’s just the absolute worst. After that, my arm wouldn’t stop throbbing. She tried again, but at that point, I was able to feel every movement of the needle, when I hadn’t been able to feel it before. It was like that jolt of shock had sensitized me to feeling the movement, and I just couldn’t take it. I asked her to stop. She was visibly upset, of course, that she wasn’t able to get the line in, but she immediately stopped.
So that wasn’t the best of procedures. It was a situation where I went through the pain and trouble of a procedure, but got no benefit from it. This would become a pattern for me with UTMB procedures at the hospital, it would seem.
The IVC Filter
The next time I tried a procedure at that hospital, it was for an IVC filter. After multiple rounds of pulmonary embolisms, I was lucky I was still alive. In fact, most people who had gone through what I experienced weren’t alive. I’m a bit of an outlier when it comes to the medical stuff now, because I really shouldn’t have survived all that happened to me, and yet, here I am. I presented with an NT-pro-BNP over 10,000 (unheard of!), when normal should be around 50, and yet, in less than a year’s time, I managed to get it down to below 100, and at one point, even had it at 53. My heart went from severely enlarged to normal in size. I’ve lost over 100 pounds of fluid/water retention weight caused by the congestive heart failure. I’ve done everything my doctors have asked of me, and then some, to the letter.
So when my docs told me I needed an IVC filter, I was willing to listen. I wanted to know more about it, though. I was hospitalized, with an active DVT, behind my left knee, confirmed by sonogram, and with clots still in my lungs from the previous PEs. So timing was critical on this. The point of an IVC filter is to insert a metal filter into the inferior vena cava (IVC) that would block or stop any blood clots that broke loose from extremities from getting to the heart or lungs. The filter would catch the largest parts of the clot and hold it there, while anti-coagulants (loosely called ‘blood thinners’) would work on the clot to break it down and dissolve it. Thus, I would be spared a massive PE, and potentially it would save my life.
This all sounded good. But I’m the type who likes to read and research everything. I mean, here they want to put a permanent metal object into my body, so I really think I need more than an hour to think about this. But they came in and told me this at 7 in the morning on a Friday and wanted me to go get the filter inserted at 8am that morning. I said no. I wanted to read and learn more. So they said okay, and rescheduled me for that afternoon. I got on the internet and started reading everything I could about IVC filters, as quickly as I could. Then when they came to get me, they informed me that because I had not been without food for 12 hours, they could not do any sedation for the procedure. They could give me some pain meds by mouth before I go–some lortab–but that was all.
Well, that was it for me. No IVC. I was not going to go into a procedure like that wide awake with nothing for sedation. I asked them what they usually use, and the doctor said they use a combination of Fentanyl and Versed, to help with pain and to relax you. The papers they gave me about it even said they would be sedating me with those two drugs. So I cancelled the procedure, even though that meant I would have to stay in bed and not move over the weekend, and we rescheduled it for Monday, so I could have the sedation medications. Sunday night, I went NPO (Nothing by mouth) and Monday, they take me down to do the procedure. I’m also going to get a central line while I’m in there, so they don’t have to keep poking me.
The Waiting Area
My Buffy was with me in the waiting area. She’s my hospital go-to person. She handles the medical stuff with me better than anyone else, and I feel safe and comfortable with her. The docs know she’s my family and they are to tell her anything they would normally tell me. She also has medical power of attorney for me in case decisions need to be made, and she and I have talked at length about what my wishes are. These are things that are a good idea for anyone to do with someone in their life, but particularly important for someone dealing with a terminal illness. You never know, though. You should always be prepared for the worst. If something happens to you, your family will be hurting enough. Don’t add to their pain by making them have to guess what would be best for you.
So I’m in the prep area with Buffy, and we sign the papers, and I sign a paper specifically for administering the sedation and they discussed all the risks about sedation and how they administer it and what to expect. Then I give Buffy a hug and they wheel me away into the operating room.
The Operating Room
The room is cinder block, painted a dull grey color, almost white, but not quite. There is a distinct lack of sound in the room, like nothing echoes at all, no feedback. Not as bad as a recording studio where there’s all the foam and stuff on the walls, but close to that, in a different way. It’s cold in the room, which is a good thing for me, because I’m hot natured, except my toes are cold. I can really notice my toes are cold, above all else. I’m lying on a gurney, as the transportation people at the hospital call them, and the room almost feels like it’s spinning to me as I am wheeled through the double doors of the OR toward a table in the center of the room. The room is very organized, what I can see of it from my lying vantage point. I see lots of equipment up above me, lights, a couple of machines. There’s plastic wrapped over all the equipment. I find myself wondering why the plastic is there and wondering if it’s hard to keep the plastic from accumulating dust, because, in my house, it would be. But in an OR, I guess not. That’s sort of the point of a clean OR, I guess.
I am wheeled to the table. I feel a dizziness as they spin the gurney around. They push it next to the OR table, which looks impossibly skinny. “There’s no way my fat ass is going to fit on that thing and not fall off,” I think. But I say nothing as they tell me to scoot over onto the table. Moving at this time winds me, makes me breathless, so moving from the one gurney to the OR table knocks my breath out, so I can’t lay flat until I catch my breath. The nurse tells me to take my time, to catch my breath. She makes me feel better about being winded. I finally am able to get a deep breath in, and they help me lie down. Amazingly, my fat ass does fit on the skinny table, though I admit I felt like the slightest movement and I might fall off.
I’m seconds into lying flat on the table, and there’s a rush of activity around me. The gurney disappears from my side. I don’t see this, but feel the sheet my fingers were touching move away and hear the wheels. All I can see are the bright lights up above me and the funky machines hanging overhead, while blue capped people with masks pop heads into and out of view. Everyone is moving quickly, no one really talking. They are a team, a well-oiled team who obviously has worked together many times before, and they know what they are doing. There’s some comfort in that confidence and assurity, but I wish someone would talk to me.
Finally, someone does talk to me. But before I know it, someone is pulling straps over my feet/ankles, and another person is putting a heavy weight wrap around my belly and pulling it tight around me. Another person has taken my arm on the right-hand side and shoved it into a plastic sheath on the side of the table. And then my left arm is pushed into a plastic sheath on the other side of the table. Now, I’m lying there, strapped down at my feet, across my body, and both arms are in plastic containers. I can’t move. I can barely breathe, and no one said a word to me–no warning, no nothing, just strapped me down.
I begin to panic inside. My anxiety is going through the roof. What’s going on? Why isn’t anyone talking to me? Did something happen I don’t know about? And then someone puts a blue drape over my face. What the hell? Then a nurse pulls the drape back and she says, “How are you do Ms. Devon?”
Oh, thank God, someone spoke to me. “Terrified, thanks,” I said, trying to chuckle.
“That’s okay. It’s all pretty scary, but it’s going to be all right,” she said.
Then the next thing I know, someone is putting a mask over my face. I can’t move my arms or body, so I jerk my head to the side and asked, “Why do I need a mask?”
A woman with an accent says that the mask is for oxygen. I asked, “Why can’t I keep my cannula?”
She informed me, “If you want sedation, I have to put you on a mask, so we can keep your flow up higher.”
Oh. Okay. Makes sense. It’s just, with my chest and face drapped with the sterile cloth, only a small part of my face was able to see out, and they were wanting to put a mask over that small part of my face. It was a very claustrophobic feeling, but I figured they’d give me the sedation soon, and I’d drift off and relax, and wake up and it would all be done.
Boy. When I’m wrong, I’m really wrong.
[[to be continued]]
…….
Due to emotional reasons, I’m having to write this in starts and stops, fits and spurts. This is part one. Part two will be up later this afternoon, and I’ll link to it here.
