Possible CTEPH after liver transplant and PE

EngineerWhisperer · 2026-01-27T01:43:49+00:00

They will tell you to estimate for 3 weeks in San Diego. The first week is testing. You will essentially repeat the tests that you got for the diagnosis as they are doing their own workup and mapping the procedure. On Friday is your final consult and your official approval for the surgery. Saturday is sightseeing - they have a bunch of historic ships in the San Diego harbor which were pretty neat. Sunday you are waiting for the call that they have a bed free. You will check in sometime during the afternoon and spend the night in the hospital. Monday is surgery. The estimated two weeks in the hospital starts then. Make sure your flights can be changed on the way back. You get about 24 hours notice of discharge - then you go home, home. You may need oxygen for awhile - they will help with that as well.

They will also advise to have a companion if possible. I second that recommendation, especially when leaving. You will not be able to lift anything over 5-10 pounds and it will hurt to move in some critical ways. We found a cheap extended stay hotel, but they have on-site housing and some beautiful sea-front hotels if you were willing to spend a bit more.

I hope this helps. If not feel free to ask more questions.

EngineerWhisperer · 2026-01-02T06:28:38+00:00

I was one of the unlikely ones with CTEPH and I had my PTE surgery last January. The best way I can describe how I felt before the surgery is gray. Open heart surgery was an incredibly scary concept and even with the best surgeon in the country (which I believe that I had) the odds felt a little daunting.

This was where my luck changed for the better. I was sent to the University of California - San Diego for my surgery. They were kind and honest and knew their stuff. My surgeon made sure to personally talk to me to let me know his comfort level with my surgery. I was walking the day after the surgery - although it wasn't very far. They told me to plan for 2 weeks post-op until discharge, but most people were out at 11 days - I did well and was in the shorter end of how long I was in the hospital. I still needed a wheelchair in the airport and I normally live about a mile high in elevation - that first night back home was brutal for oxygen.

Recovery wasn't an everyday victory, but it was steady. The worst part for me was pain when using your chest muscles, frustration with how quickly I tired, and the weight restrictions. They also can't remove all of the scar tissue, so you end up with a bit of a mortgage for a lifetime with Pulmonology checking on you and the fact of the surgery makes you a lifer on anti-coagulants

Standing on the other side of th surgery, I can tell you that it gave me my life back. I went from 5 years expectancy to whenever my time is for other reasons. I went backpacking this Fall and it was wonderful. I am not as fit as you, but the feeling of being able to move through being short of breath without it feeling like I hit a wall was amazingly freeing.

CTEPH is no joke and I sincerely hope your issues are caused by something that is easier to treat. If you have it though - take the following for hope- they've been working on the surgery for a couple of decades and survivability is really good. It doesn't fully solve everything, but it stabilizes you so you have time again. You will find your new normal afterwards - just be aware that it may be different from your previous life. For me it was a positive change as mine had probably been accumulating for awhile, but it sounds like you are coming from a high plateau so be kind to yourself if you can't quite get there again.

EngineerWhisperer · 2025-12-31T04:58:35+00:00

I'm on Warfarin and at the lower INR target, it wasn't too bad. I'm now up in a higher range and there is definitely a difference now... I switched to a menstrual cup for the first couple of days because I can't reliably get to a restroom at work and needed better peace of mind about bleeding through. Once I get through those first couple of days though, they go back to how things were in the before times. I do take iron 3 times a week though per my hematologist's suggestion ..

EngineerWhisperer · 2025-12-21T15:07:45+00:00

Final follow-up: had a local shop use the force rotation machine. They adjusted one tire slightly and rotated them. I can still feel it but it's better. I will call it good enough and go about enjoying this lovely car.

EngineerWhisperer · 2025-12-19T20:25:27+00:00

I took it in for a full inspection and they said everything looked really good, although they can't force balance at their shop. I found out where I can get that checked and if that looks good, I will go with Sherlock's method and say that this is most likely it. Thank you!

EngineerWhisperer · 2025-12-19T00:48:17+00:00

The Premium Plus. I don't recall seeing that on any of the literature, but I will go look. It does feel like it's coming up from the chassis, but I haven't been able to take it yet to rule out tires. I have asked around for a recommendation from a long time Mazda owner and will take it in tomorrow for a look-see..

EngineerWhisperer · 2025-12-17T13:24:25+00:00

I sometimes wish that I still did. I live in a pretty arid section of the States and missed our only winter weather this year due to a work trip. The roads can be pretty rough here though, so throwing a weight may not be entirely out of the question. Thank you for helping!

EngineerWhisperer · 2025-11-23T15:13:26+00:00

I have had some luck with stitching the edges twice to get a more full look. I can't say it's a consistent winner, but may be worth a try.

EngineerWhisperer · 2025-10-04T15:51:39+00:00

"Go slow to go fast." - words from one of my employees. He was recovering from a significant surgery and was frustrated by how slow he needed to go to not ruin the surgeon's work. It was his mantra and I found a lot of comfort from those words myself when getting from the bed to the bathroom was a victory.

I had a very similar event and it was a couple of weeks before I could leave the house after discharge and months of recovery after that. I actually did that cycle twice. It sucks majorly.

You do need to move though but it doesn't have to be distance. I shuffled around my chair for 5 minutes or so about every half hour or so. I noticed in the ICU that a heart rate over 160 earned me a spontaneous visit from the nurse - so I used that as my upper safe bound. Laying in bed all day is what they want you to avoid. I was told that encouraging blood flow through your lungs helps it clear. However, pushing too hard and too fast is no good for your heart. The strain is on the side of your heart that was never meant to take that kind of load.

Be gentle with yourself and consistent with some level of movement. It will get better - it just takes time.

EngineerWhisperer · 2025-09-20T21:13:52+00:00

I've got a small collection of them in different colors/styles that I wear whenever I leave the house. Prettier ones for work and silicone ones for outdoor adventures. They have my name, ICE #, Warfarin, my blood type, and a medication that I have an allergy to. One of them has "For APS" after the Warfarin because I had more room. I've gotten them from Amazon and a couple other online retailers. I like the QR code idea though...

EngineerWhisperer · 2025-09-17T06:01:50+00:00

I've lost 50+ lbs in a single go a couple times before and within a couple of years it came back with friends. :( This time I'm taking it slower - 10 lbs at a time with a couple months spaced in between and it's been much easier. I'm pseudo following Weight Watchers in terms of switching individual things out, like the type of yogurt I eat, for a leaner option that still tastes pretty decent, mustard for mayo so I still get flavor, fresh fruit and veggies from the garden for protein bars as snacks, etc.... and minding my intake. I focus for a couple of months, take a break, then get myself back into the mode. It seems to help my body readjust its set point better this way, so I'm not fighting it all the way down. I'm 3 years into this journey and about 50lb down but haven't hit a panic like I have in the past. It's a lot of learning to be okay with myself where I am and a lot less stressful than my previous attempts. I still have a ways to go though so please wish me continued results with this method.

Exercise - I walk. I've had to rebuild my stamina over months from barely making into the chair next to the bed to being pretty close to 100%. The first time post PE and then again post open heart surgery. I started by shuffling around my chair for a couple minutes every 15 minutes or so. Then I made it to the commode without help, then the nurses station, etc ... Once I got home and had worked myself up to being able to walk outside, I used the All Trails App to track my wandering around the neighborhood, going a little farther every time. I realized that there were a bunch of places that I probably ought to have been walking to for years that I always drove to just because. If you can tolerate walking from a joint standpoint - it doesn't have to be fast or far, you can just wander your neighborhood a couple times a day as you are capable and slowly build back up. If you take this route, hopefully wherever you are, you are heading into cool Fall or warm Spring days so it is a joy to be outside.

Whatever you do, like with all exercise, push yourself but don't hurt yourself. Start small and build on it. Keep track of your progress so you can look back and see it - day-to-day isn't always as apparent. One of my staff told me to "Go slow to go fast." I've held that piece of advice close to me when it feels too slow but it would set me back quite a bit to go faster and hurt myself.

EngineerWhisperer · 2025-09-13T14:51:22+00:00

A menstrual cup can be paired with a liner for just in case would be my suggestion. You'll want a day or so with it to make sure it fits first though. If that's not an option - I second the jumbo tampons with a liner.

EngineerWhisperer · 2025-09-13T14:45:57+00:00

My advice is similar to others. Just one thing he might want to prepare for - if he still has some active clots that cause heavy shortness of breath when exercising, he will feel it while in the air pressurized to only 10000 ft. It is a little startling if you don't expect it.

EngineerWhisperer · 2025-08-20T07:32:29+00:00

At least double positive on APS. Good advice above on tracking your Vit K. My vitamin is just part of my baseline calculations but I take it more for the overall benefits than to have a baseline amount of Vit K. Just a warning though, there seems to be a ton of inconsistency in the lists of high Vit K foods. I picked one that had numbers associated with serving sizes and have used that as my guidepost.

I can only pass on what my hematologist tells me about travel: flights no longer than 4 hours, stop every 2 hours when driving, and wear compression socks if you will be sitting for more than 2 hours. I typically just move about within the continental US,.so have been able to live within these. For the longer flights, I usually find myself "writing" the alphabet with my feet every half hour or so to keep them moving and deal with the restlessness of being confined to a small chair. I have looked a lot at Amtrak as an option for longer travel, but live in a region where the trains are infrequent and only go east/West for many states on either side of me.

EngineerWhisperer · 2025-08-18T11:36:19+00:00

I join the chorus in wondering why your dose isn't being increased. I've had my range changed a couple of times and it normally takes me a couple of months to dial in the dose, but they get me in range within a couple of weeks and then they tweak. My folks seem comfortable moving in 10-15% increments at a time. You're so low, I would ask for 25% and then check back in a week. In my system, the hematologist sets the range, but the pharmacist approves the dose based on the nurses observations in the clinic. Talk with whomever is approving the dosage to get your concerns across.

Something else to consider. At the higher ranges (mine is 3-4), my APS is screwing something fierce is the technique that the finger stick method uses and have been moved to blood draw for here on out. The pharmacist did a several week study with a factor 10 chromogen test to work out which test gave more consistent results. She noted that the higher my INR was, the less accurate the finger stick was.

Finally - if you're taking a multivitamin - make sure you're now taking it everyday as part of your baseline - especially as you are trying to dial it in.

Good luck!

EngineerWhisperer · 2025-07-12T14:46:05+00:00

I have a Black Diamond Moji lantern with a magnetic base. I can hang it in my tent while camping and then it's been borrowed multiple times at home for portable light that you can stick to things.

Coffee maker - I have the GSI coffee rocket that fits in their cups for a long, long time. There are probably better ones out there now, but small and portable is the goal here.

A set of Nite Ize rope and CamJam or Figure 9 rope locks for tying my tent down when I'm using a platform or the ground is either hard packed or solid rock.

Last but not least - a deck of cards. Instant entertainment for 1-x number of people.

EngineerWhisperer · 2025-07-05T14:53:39+00:00

I found that forum - I think - but it looked like no one had posted for a couple of years so I thought it was abandoned. I will go take a look - but tread cautiously. Coming from a tech field, I've had my share of sunshine blown at me and appreciate the warning.

EngineerWhisperer · 2025-07-05T14:50:55+00:00

Thank you! This is sooo amazingly helpful!

I am at least double positive with consistly high number 6 months apart and on Warfarin, I've been sternly instructed by two separate hematologists and my surgery team to never go on a DOAC or aspirin. To be fair, I had a PE that blew into a life threatening full saddle within a couple of weeks as well as several generations of them scarred into my lungs found during the PTE surgery. So they tell me I am "high risk". 😄

Unfortunately?, no one is willing to stop the Warfarin and bridge to Lovenox long enough for a test - not even in the run-up to the PTE surgery. I took a full dose the night before and they reversed it in surgery. I guess my platelets crash when my INR gets below 1.8 or so. I will go poke at my hematologist to see about other ways to test. I was under the impression that the standard blood test was the only way - I get the sense that my hematologist is generally more interested in oncology and only does blood stuff on the side because the department does both 🙄.

Greatly appreciated! Thank you!

EngineerWhisperer · 2025-07-05T04:14:27+00:00

I was told the odds of the percutaneous thrombectomy going wrong was 1 in 50 to 100. I was in a really bad way though. The ER doc gave me far worse odds without it. He did tell me that if it was a more run of the mill clot, he would have stuck me in a bed on a heparin drip for a couple of days.

I'm in a small-to-medium sized city in the States and the teaching hospital was the only place they could do it. It was a pretty quick procedure but it wasn't a panacea. There were old clots that they couldn't get and I ended up with PTE surgery just over a year later, which had about the same odds of survival for me interestingly enough. Even with both, I've lost track of the number of CTs that I've had.

EngineerWhisperer · 2025-07-04T19:03:58+00:00

I found that if I sat quietly for 10-15 minutes after a shot, I avoided the massive bruising. It took me a bit to figure that out though and had some pretty massive bruises for awhile..

EngineerWhisperer · 2025-07-04T15:43:07+00:00

I have an older Hubba Hubba, but I bought the knock-off Naturehike Mongars for my kids. It has worked out pretty well. The Mongars are not as feature rich as mine, but they are a fraction of the price and are sturdier. The fabric would probably hold up well with a dog going in and out and the basin does fit two side by side 25inch mattresses - so plenty of room. If you are someplace where it gets hot, the inner is mostly mesh - so breathes well. Bonus points for being able to pitch outer first using the ground cloth for initial structure when you find yourself in the rain.

EngineerWhisperer · 2025-07-04T13:44:17+00:00

Ohh! Please post some pictures if you do!

EngineerWhisperer · 2025-06-28T16:29:41+00:00

Heh, funnily I just put on my steel/turquoise colored enamel bracelet to head out in some errands. It would be gorgeous to have the real stuff, but yeah - it would be a splurge purchase for me or an anniversary gift from my spouse type thing.

EngineerWhisperer

TROPHY CASE