8.14.22: Staying over in Chicago to fly out early tomorrow morning. Staying in the ‘La Jolla House’ when we get out there — a place for long-term patients and their families. Believe it or not, hotels are expensive in La Jolla! (I was there about 30 yrs ago… ocean, mountains, beaches, always about 75 degrees… hope I’m not there too long!!). Thank you all so much for the wishes and prayers. Tomorrow mostly off… blood tests and ‘VQ scan’ on Tuesday, then cath and echo the next couple days. I’m scared, of course. But I don’t have a choice, as I have more and more trouble doing things. I love autumn, especially in Wisconsin — so that’s what I’m shooting for. I had a nice, spur-of-the-moment visit from my son this weekend. More later…
8.15.22: From emails I’ve received, I think I have more readers of this than I did back in the days of the ‘Talk Zone‘ … which is all good! We got to San Diego this AM… I pooped out in O’Hare and it was humbling being pushed in a wheelchair. I had the same thought though that I had at Disney years ago. They cut me into the security line — do people ever ask for a wheelchair when they woke too late to make their flight?
We are staying in a place that is basically part of a dorm for UCSD. No air conditioning, and every time I use a rock to prop open the door to our hall, someone moves the rock and closes the door. They must be on the cooler side of the building. Got here at about 9 AM so we drove down to the ocean for sushi. Such a different world. Surfers wandering around, little restaurants and dive shops, the constant smell of THC in the air… ‘just like in the movies’!
Testing starts tomorrow. My VQ scan was moved up earlier in the day, which is good. I keep thinking that maybe I’ll wake up and my oxygen saturation will be normal, but it is still at 84% – 88%.
The place where we are staying has several pages of rules, and warnings that violations will get us ‘removed’. Masks are mandatory; the communal kitchen doesn’t have dishwashers but it does have two ‘sanitizers’ that must be used on any dishes that we use… all surfaces that we touch must be wiped down before we leave the area.. it’s like we stepped back to 2020. The entry person even took the pen I used to sign the papers and said ‘I’ll clean this for you’. But it is about 20% the cost of a hotel, so what can you do?
Went to Whole Foods this afternoon and parked the car blocking two electric vehicle chargers, just for fun… (yes, I’m joking). But I did get a good-looking rotisserie chicken to take to the room for dinner.
Hope you’re all doing well. Thank you, again, for your positive thoughts.
8.16.22: Tough news. VQ scan shows clots in subsegmental branches of both lungs. The closer clots are to the heart, the larger the vessel and the easier they are to remove. The pulmonary artery has lobar branches, then segmental branches. then subsegmantal branches. I have clots all the way down, through both lungs.
The good news is that my doc is a pioneer in repairing these ‘defects’. This paper describes the patient selection process, and the primary author is my doc: https://www.atsjournals.org/doi/10.1513/AnnalsATS.201601-014AS
I meet with the team tomorrow. I’m obviously no expert in this field, but I understand the basic science – and I expect the issue to be whether I’m a good surgical candidate, given the extent of disease. The distal arteries are fragile, and if they tear one of the arteries, I’ll hemorrhage when they restart my circulation. They may suggest that I wait for a lung transplant – something I would not be a fan of, given the psychology of waiting and waiting for a pair of lungs to become available.
I’m 62 years old. I’ve lost so many good friends over the years — people who did everything right, who had brilliant pasts and futures. Most of you have heard about them over the years (as I have know most of you for 5, 10, or 15 years). My best friend from college, Dan Shanower — killed on 9/11 while reviewing intelligence about the attacks in NYC. (https://pentagonmemorial.org/biographies/cdr-dan-f-shanower-usn/)… one of the best people I’ve known. He had so much passion for life, for service… he died on the last day of my treatment for OUD, and I have a beautiful Dutch-Elm-resistant American Elm in my yard that was planted shortly after his death that keeps growing like crazy! The plaque on the trunk is covered more and more by bark each year, as if we’re supposed to eventually forget and move on.
My friend Todd VonBlaricom, a brilliant surgeon for small-towm medicine in FDL, who died in the mid-2000’s. Dr. Mike Strigenz, one of the nicest docs and best ENT’s I’ve ever met, who passed a couple years ago from a horrible, rare illness. My anesthesia partner Pontus, who died from a pulmonary embolus last year, 12 days after retiring. Ian, a great surgeon and neighbor, who died after a freak incident while visiting Thailand. And so many patients who shared their life stories with me… Larrie, Bernie, Joe, Nicole, Connie… all people who died prematurely.
Sorry – I know this is all pretty morbid. My point is that death is a part of life, and we all tend to see it as something that will happen to someone else, not to ‘ME’ — the person we are now. I think most of us think of it in the abstract, even though it is the one certainty in our lives. And that’s the gift from my current situation — as it provides a reality check, albeit with risk attached. I am ‘guilty’ of not appreciating every moment. Yes, I love autumn, I love a good movie, and I love watching the Packers on a wintry Sunday (especially when the Seahawks are in GB). But I’ve spent too many days THINKING about the things I wanted to do ‘some day’.
So if you’ve read this far, take a moment and think about what you’re grateful for. If you’re wasting time, consider taking the action you keep thinking about. I know and respect everyone who is reading this, and my wish for you is that this story adds a little something to your lives — maybe the decision to call someone you lost connections with, to stop wasting each night in a THC or alcohol haze, or to take that ‘boot camp’ in a field that will provide you a better life going forward.
I’ll check in tomorrow or the next day, depending on how things go. On a lighter note (always have to end on a lighter note or you lose your audience — blogging 101 — I’m watching ‘Fleabag’ on Prime. Not something to watch with mom and dad, but it is entertaining, at least most episodes. I preferred ‘Catastrophe’, another British series that is free with Prime. Of course I only watch the British nonsense if Liam Neeson or Michael Strahan doen’t have new revenge flicks out there….
A couple last thoughts…. I’ve learned that nobody will see you if you sit in a wheelchair. Even healthcare workers — they look at the person pushing, and ask questions as if the person in the chair isn’t there. Put on oxygen and you’re even less visible. I think of a movie from decades ago — The Doctor, with William Hurt (most of you have no idea who that is, I know…). He made the med students sit on gurneys and have enemas to help them understand the patients’ perspective. My preceptor in med school actually did something similar, even before the movie came out — he made us lie on stretchers and get pushed through the hospital to show us how humbling it was. I tell you — I HATE sitting in that chair, and I practically jump from it when I leave each day. I feel bad for joking about security a few posts ago. It is not fun to be pushed around, and I can’t imagine how horrible it is for those who CAN’T get up.
Finally, you all know I love dogs… and some of you have shared pictures of your fur-babies (some of you even bring them to appointments!). Send me a pic of your pups – or even your cats (I have both and it took me a long time to warm up to cats — but my Leo is over 20 yrs old, and he has grown on me!) I do get your emails, and I appreciate them!
8.17.22: Some cute pups out there! Today was a better day… although it started at 2 AM with a dream that some of you can relate to… in the dream the doc said that they COULD fix me, but they won’t because I did things to screw up my body, and I would probably do those things again so they would be wasting their time. I woke up with that thought and expectation. That didn’t happen, but the NP did ask about my history, as many of you have described with your own surgeries. ‘Many people do fine with Tylenol… with your history, do you think you should get opioids or midazolam? Usually the younger patients have more pain and need more pain meds than the older patients’.
I pointed out that the history was well over 20 years ago, and that I really didn’t want to be a hero about pain control when my chest is cut open and an endotracheal tube is in my throat. But the fear is there — that my complaints of pain will be interpreted as ‘drug seeking’. We have all talked about the issue many times — a piece of stigma that can’t be avoided. I’m going to teach Nancy hand signals so that she can advocate for me when I’m intubated — like a peace sign if the pain isn’t too bad, a fist if I am in pain, and maybe the middle finger, waved back and forth, if I’m really struggling…
The good part was that they think I’m ‘probably’ a surgical candidate pending tomorrow, which is considered the toughest day of testing. I have a right heart cath at about noon, and then a left heart cath/coronary angiogram later in the day. The PA said that ‘they were having problems in the cath lab today but hopefully things will be fixed by tomorrow’. Not sure what that meant exactly but he was optimistic about whatever was wrong!
This is becoming quite the document…. but you all know how I like to talk… I also filled out the Advance Directive form (although it needs to be signed by someone who isn’t my wife, so I’m technically still in control!). The questions really make one think…. would you rather be on a machine, unable to think, or at home with your pets? I’m exaggerating a little, but most of the questions were easy for me to answer. I had to write in my choice — ‘I’d like to go back to my office and keep doing what I’ve been doing’.
What else…. for lunch I only had a short time so we went to a place that was in a research park just north of the med center. The restaurant was for the people who worked ‘on campus’ , which consisted of a bunch of tech companies. The restaurant section was exactly like you would see in a TV series about California… very zen-like, with a vegetable garden for fresh produce (that we were welcome to walk through), a ‘quiet area’ for meditating…. and at the table next to us, about 20 people who alll looked about 15 yrs old, talking about (honestly) how to handle their company stock, and whether it is good to diversify or ride the wave of their employer. I thought they were all drinking beers, but I overheard that it was ‘Kombucha’, a beverage that only LOOKS like beer. Such a different world.
One difficult issue for me is when I’m at the hospital, and I overhear the chatter between anesthesia residents (which happened this afternoon when I was writing the last prescriptions people needed, which BTW were mailed an hour ago). I remember those heady days as a anesthesia resident, talking about the big trauma case the night before, and the feeling that I could, and would, accomplish anything I put my mind to… I struggled back then with the decision whether to stay in academia, or to instead move back to the Midwest to be closer to family, so that my kids would know their grandparents. We chose the latter, and most of the time that feels like the right call. But seeing the excitement at this place makes me wonder if we chose right.
The problem, of course, is rehashing and questioning a decision that I made… 30 yrs ago?? I would tell my patients that the questioning is the problem– something that cannot lead to anything positive, but can and will lead to all-things negative. So much easier to give advice than to take it! There is a whole study out there about the way people deal with ‘choices’ — about how some choices become more certain over time, and others become less certain. I don’t remember the details but maybe I’ll write more about that sometime.
I’ll stop because I’ve taken alot of your time today. But ‘TLDR’ – a good day.
8.18.22: today was a long day, and I’m supposed to keep a wrist immobilizer on my right wrist until tomorrow so I won’t type much. Most good news though. The right heart cath shows that my R heart is very enlarged, with high pressures — but good systolic function. The lung angiogram showed what I knew – lots of clots. My R upper lobe is infarcted and almost completely blocked from blood flow, explaining the shart pain I woke up with about 6 weeks ago. But they think I’m a good candidate, and they hope to clear enough clot to reduce pressures in my R heart. Then they did a L heart study/angiogram and my coronaries are clear, with good L ventricular funtion.
I used to put in ‘Swan Ganz’ catheters in a small room outside of the OR, without imaging or draping (for sterility). That was 30 years ago! Now it is so much safer, and the catheters are so much smaller… all done under flouro, with everything draped off. The coronary angio was likewise so much different.. through the radial artery in the wrist instead of the femoral artery in the groin. I’m grateful that things have improved so much.
I’m on for surgery, admitted next Tuesday and surgery on Wednesday. I will likley be a 10+ hour affair. I’ve read so many articles about the operation and I’m amazed at what they say they can do.
I keep hearing that my condition is likely 20 times more common than it is diagnosed. That’s a good lesson for everyone. But I keep asking the docs, how could this have been discovered earlier? … and the only way would be to have a VQ scan every few years, which is not considered a reasonable thing to do at this point.
We met a neighbor in our dorm — the wife of a firefighter from Louisiana, who had almost the exact history that I had. He is younger – 40 – and his surgery is two days before mine. As with me, he exercised and was in very good health, then developed dyspnea this year. He is filled with clots too… he (and another patient who was discharged last week for the same thing) blames his Moderna vaccine. It is a strange and frightening time right now, when getting the answers to such questions is impossible because of the need to ‘encourge vaccine use’, and even wondering about the issue labels a person as a ‘right wing nut’. The amazing vaccines that doen’t do all that much, but that must be used if you don’t want to be blamed for ‘extending the pandemic’. Amazing that so many people still buy into that story, and still blame people for exercising their own choices – even after triple-vaxed Joe and Jill caught COVID.
I’ve received great pictures from many of you. I’ll stop this ‘short’ post and see if I can figure out how to put up images of my own buddies,
Sorry to totally inundate you but I started going through them and it is hard to pick my favorites!
Dogs are a lot of work, but I can’t quantify the joy they have brought into my life — and that’s not even counting my childhood. If you have the room, two dogs are 10 times more fun than one. Don’t get me started with my videos, but it is so much fun to watch a group of dogs work things out, figure out who is in charge, decide when playtime starts and when it has to end….