As many of you know, I was diagnosed with CTEPH last year after a lengthy hunt for an accurate diagnosis. I have put off again and again doing an update since things continue to evolve. Briefly, CTEPH is the nifty acronym for Chronic Thromboembolic Pulmonary Hypertension, which is essentially hardened blood clots in my pulmonary arteries (the big veins between heart and lungs). It’s tough to accurately diagnose in a living person because the symptoms are often the same as those for asthma, COPD, emphysema, etc. It took about 2 years to correctly diagnose and then another 8 months to get to surgery. CTEPH is rare (tho they think it occurs more often but goes undiagnosed) and only a few places in the country do the surgery. I went to UC-San Diego for my surgery and I highly recommend it. Dr. Madani was my primary surgeon and I was very impressed with him and his staff. Just prior to surgery, I was given a 50% chance of living 3 years and a 30% chance of living 5 years without this surgery. So, obviously we decided on the surgery.
The short version is that the big surgery was a success. I passed my 6-month post-surgery tests. Not with flying colors, but I passed. They want me back in another 6 months to go through the tests again before they declare me good. However, I do still fatigue very easily (which they say is normal). Also, my memory is a bit unreliable and my concentration is all over the map. I talked with the pulmonary hypertension specialist about this during my 6-month check, and he believes I have some cognitive dysfunction due to the surgery. Fancy term for a wee bit of brain damage. So, I’m still working that to see just how bad and permanent this new condition is. I rather be daft than dead so no regrets.
I wanted to put some info out there. When I was searching for info on what to expect while recovering from the PTE (pulmonary thromboendarterectomy) surgery, I found very little. I found some info on post-cardiac surgery recovery, which is the closest I could find. I went into the surgery expecting that I would be very sore along my breast bone (since they have to cut that in half) and that I might have a drainage tube. I expected that I would be breathing easier within a day or two of the surgery.
Ha! I was so very wrong. When I asked the nurses about this, they told me that the staff and doctors don’t want to scare the patients by giving them too much info beforehand. I’m a biologist, a practical person, and once had a little farm complete with birthing animals and butchering them as well. I think I would have done a little better with this info up front as it would have given me some realistic expectations. So here I am providing chunks of my own experience in case it helps others in the future.
So here are the gooey bits of post-PTE surgery recovery. First, briefly this is what was done done during the 8.5 hour long surgery. My body was put into a hypothermic state, my sternum cracked open, my heart and lungs put on bypass. Most of my blood was removed. When the surgeons were ready to cut into my pulmonary arteries, they stopped circulating my blood. This was done twice (one for each main branch of the pulmonary arteries) with my blood circulated briefly in between to keep my brain alive. Once they are done, my body temperature is slowly raised. That done, I was taken off heart & lung bypass, my sternum wired back together, and sewn up. Then I was kept in a mini-coma for a day or two (I’m totally not sure about how long that was and my husband doesn’t recall since he was busy being relieved and worried at the same time).
OK, so I recall being wheeled into the operating room and then my next memory is lying on my back with a wedge pillow under one side in a lot of pain. In fact, that was my new 10 on the pain scale. I kept writing PAIN on my husband’s palm throughout this because I didn’t understand why I was in so much pain. Some well-meaning person kept telling me it would be easier to communicate once they got the intubation tube out of my throat. That was a No Shit moment. When they removed the wedge pillow, I discovered a new 10. Then they rolled me completely on my side. Yet a new 10 in the pain scale! Then they sat me up and wanked out the tube. Wow! Fuck, that hurt. It wasn’t like the movies at all. That is now my new 10 on the pain scale. Turns out that I was on morphine the entire time. My memory goes blank directly after that and the next thing I recall is discussing pain medication options. Apparently I was sucking on ice chips and watching TV for hours with Bill in between, but I don’t recall any of that.
The pain was a moving target the entire time. I had expected my chest to be a mass of pain, and it was. But I wasn’t expecting all the other pains and discomfort. Even on morphine it was tough. Bill massaged my feet and my neck often and that helped a bit. I needed to cough often (I was coughing up bloody mucus as per the norm after this surgery) which was a special kind of pain. Sneezing was a new type of mini hell. I was put on heparin and had to have regular blood draws (every 6-8 hours) while they dialed in my new blood thinner, Coumadin (aka Warfarin). My body went from not minding needles to outright rejecting them (they would hit a vein but then it would split; the nurses said this is a natural defensive tactic the body sometimes employs when it’s had enough of needles). This was an unexpected pain I did not enjoy as it lead to several attempts for each blood draw. My second IV was a leaky thing that caused me much grief. One day with yet another antibiotic injection through this IV, it was that which broke the camel’s back and I had a bit of a sob over the amount of pain I was in. I think that was Day 8 or 9.
A friend sent me a silly gift box for my lengthy hospital stay. This was a box of fun, each little silly gift wrapped. I also received some cards and Bill got me a shirt that says Yay! I Pooed Today! because that seems really funny when you’re on heavy pain meds and haven’t pooed for a week.
I had tubes everywhere. There was a central line in a vein in my neck. I had a PIC in my wrist artery. My other arm had an IV. I was on a pee catheter. I had 2 electrical leads in my chest just in case they had to zap my heart. I also had 3 drainage tubes coming out of my lower chest that fed into 1 larger tube that went to a goo box that marked off how much fluid I drained off. A long almost-rectangular bit of blue rubber kept my incision sealed. It was attached to a little suction box that I had to keep on me. We called it the fart box, since it farted occasionally in it’s efforts to maintain suction. The suction kept my tissue pulled tight close together so the incision could heal. I also had telemetry leads all over that monitored all the important stuff.
The electrical leads and PIC came out fairly soon after I came out of my mini-coma. The central line came out perhaps on day 4 or 5. I recall that the nurse thought the stint that holds the vein open was in the closed position, so we were all surprised when it wasn’t and I bled perhaps 2 shots worth of blood onto my hospital gown. Since it was messy, I got my first towelette bath post-surgery. I think my catheter came out that same day. I was in the ICU for 6 nights and a second IV had to be put in before they would release me to the telemetry ward. On day 7, my rubber incision cover and fart box were removed along with my drainage tubes. Each tube was 18 inches long. Yep. 54 inches of tubing in my chest cavity – that is one of the reasons I had so much trouble breathing easy. Life got much better after Day 7. Removing the drainage tubes meant cutting the few sutures holding each in place, having me recline back, and the doctor then steadily pulling them straight out. It didn’t hurt but it did feel very strange, like slithering aliens escaping from my body.
The breathing exercises started early and they were a personal hell. These exercises were nothing new to me as I had done them previously when I was getting over pneumonia in early 2016. However, they were now extra painful. Not only is it the sternum that has to recover, but also all the incisions made internally. Plus now that the hardened clots had been removed, blood was flooding the field so to speak. Some patients develop pneumonia-like symptoms because the body needs time to balance out the new blood flow. I was on and off bi-PAP (a high flow vent that helps forces air into the lungs) and then the respiratory techs came twice a day to practice breathing with me. Add in that 54 inches of drainage tubes inside my chest pressing on lungs and heart and doing these simple exercises don’t seem so easy now.
Getting my lungs to happy was complicated by my kidney disease. I have early stage 4 kidney disease, which I could live with quite OK for the rest of my life provided I don’t take up cocaine or undergo major surgery. So, here I was doing one of the biggest surgeries we have. We all expected that I would be going home on dialysis and possibly on the kidney transplant list. I am happy to report that my kidneys were quite happy with the surgery and within a week had even improved a bit. Still, I could not have any diuretics due to my kidney disease and normally they do issue diuretics post-surgery to help keep the lungs clear of fluids. My kidney disease is also the reason I am not on any of the new blood thinners which take a lot less monitoring than Coumadin (I have to go have my clotting factor tested every 3-4 weeks for the foreseeable future and my Coumadin dose adjusted according to what the results are).
I think it was on Day 3 that the ICU nurses took me on a short walk in the hallway. They wanted me up and moving as soon as possible but it was tough. This was the first time I had an entourage – someone to push my pole with my various IV drugs and my pee bag, another to carry my goo box, a nice lady to wheel my oxygen tank with us, one to push a wheelchair behind me just in case, and yet another to walk along beside me carrying my fart box & keeping a close eye on me. I had to get used to people being around me all the time which was an adjustment for me. And folks had to do everything for me in those first days. I mean everything. Yep. Yeah, that too. And that also.
They had this bedside commode they would help me over to when I needed to do my thing. Folks were always popping in and out while I sat there waiting for my body to do the natural thing. I’m so glad that hospital gown was more like a mini tent which covered everything. They encouraged me to have a bowel movement but without pushing at all… hmmm… well, that turned out to be impossible until Day 7. They were getting a bit worried since it was unusual for there to be no bowel movements after this surgery. I was on 2 or 3 stool softeners. I guess the bright side is that the nurses had that many fewer days of wiping my butt for me.
On Day 8 or 9 I finally got that second IV out. It had caused me all sorts of grief. Day 10, I was finally allowed to shower. Yay! That was when I finally started to feel like a real human. On day 11, I developed the sniffles and thought I had an allergy flare up. Only later after the symptoms continued on my drive home did I realize I had caught a cold. They could only give me antihistamines and pain medication. Due to the pulmonary hypertension, I couldn’t have any decongestants. Sleeping got harder those last few days in the telemetry ward. On Day 12, they released me with my new drugs and instructions on how to care for my still healing incision. The weight of my breasts had pulled the base of the 8 inch incision open and they warned me to be especially vigilant for abscesses in that area. So they also gave me a very fancy bra that had velcro in odd places to help hold the weight of my breasts yet keep them separate to minimize sweat pooling there. I was still on supplemental oxygen at this time, yet one more thing to lug around with me.
Bill and I had about a 20 hour drive home to NM. We took 3 days to do it as traveling was incredibly uncomfortable. On the other hand, it also gave me three days to acclimate to higher elevations as we traveled from the coast to the high desert mountains. I think flying in one day with a sudden acclimation would have been much rougher on me.
I was on 24/7 supplemental oxygen for another 2 months. In late March I was able to start leaving it off if I was sitting quietly. Then in April I was able to walk from bedroom to bathroom to kitchen without it provided I wasn’t carrying anything heavier than a tea mug. Also I had 2 months of no driving or lifting anything over 5 pounds as my sternum healed. In May, I was finally able to shower and go to the movies without it. I still sleep with it because it’s unknown if I have sleep apnea. I’m awaiting yet another sleep study to see about that. In late May, we traveled to Seattle for my sister’s wedding. The trip kicked my ass but I’m very glad I could make it there.
On the cognitive dysfunction, I’m sure you’ve all experienced these symptoms before: lack of concentration, forgetting what you just read, misrembering dates and events, forgetting people (faces and names), can’t recall a specific word, forgetting conversations, not recognizing an email you obviously sent, swapping whole sentence fragments around when you try to read, forgetting which toothbrush is yours, unable to multitask, driving past the neighbors driveway even though you’re looking for it, forgetting if which is your favorite kind of onion. OK, so maybe not that last one. I have these every day and they affect my daily life. My greatest frustration is reading – it’s difficult to do except in very small chunks. Even this post, my own writing, has been created over several weeks. Thanks to audiobooks for keeping me sane.
Still, I rather be daft than dead. If you interact with me and I have forgotten who you are or why we know each other, most likely I will eventually recall. Sometimes I don’t. This may or may not get better but I’m told it won’t get any worse. Until then, I won’t leave the kettle on if I intend to leave the house… unless I forget.
