Six days ago I had surgery to move some internal organs around and to repair the muscles that keep them where they are supposed to reside. No, this will never happen to you unless you are one of the lucky 2 in 100,000 people in the world, like me. It was neither minor surgery nor was it so major that there was a large chance of failure. And fortunately it seems to have been successful. I had two goals, one was to fix the problem because it had around a 25% chance of killing me if left unresolved and the second was to possibly free up space for my heart and lungs to perform as designed, giving me a little more stamina on my morning runs and afternoon tennis matches.
The first goal was achieved, everything is where it should be now, yay me! The second will be weeks or months in finding out because I’m not allowed to do any extreme physical activity for at least five more weeks. My diet is restricted to liquids and soft foods but wine is OK again and fish and its infinitely better than the pre-surgery week of clear liquids only!
By way of warning the rest of this post is going to describe my experiences in perhaps more detail than anyone wants to know, but it is my blog, so be forewarned.
I have had this condition for eight years or longer and had put off trying to get it fixed because the medical journal articles I had read indicated a fairly high death rate and a high dissatisfaction rate among the patients who had the surgery. That turned out to be a very smart move on my part. Over those eight years a very few talented surgeons developed a way to do the procedure laparoscopically instead of cutting patients wide open and that makes a huge difference in terms of recovery time and in terms of reducing the probability of the main thing that kills surgical patients, infections.
The week before was basically planned starvation. In order to move my stomach back where it belonged my other organs that had enjoyed occupying the extra space had to make way for a new roommate. One way to do that is to shrink them. By eating almost no calories, especially no sugar or carbohydrates my glycogen levels dropped like a rock. And apparently, according to my surgeon, that shrinks the size of your liver, making it easier to move out of the way. And you would think drinking broth and eating sugarless jello for a week is no big deal. To me it felt like a big deal and also like the longest week of my life because at the end of it, wasn’t relief, but fear and uncertainty.
I went to Denver to get this done and that’s a two day car drive from Arkansas. The reason was that this is an extremely rare type of a fairly common surgery, so there are not many surgeons who have done it and a precious few who do dozens of them a year. I had spent some time researching the procedure over the last eight years and there was nobody in Arkansas who had enough experience in my opinion. In fact, my GI doc here told me it was impossible to do laparoscopic surgery in a case like mine. I knew otherwise and the fact that a non-expert like me knew more about it than my specialist told me I needed to find someone truly special, and I did.
We used to call the super specialized and qualified welders that we would bring in to weld exotic alloys in our chemical complex “brain surgeon” welders because they were so elite in their skill sets. Well, my surgeon, was a “brain surgeon” surgeon when it came to my problems. They were routine to him. And if you have to get anything done medically that is more than simple, do yourself a favor and find a “brain surgeon” doctor to do it. Its as simple as spending some time on the internet.
As the morning of surgery approached I got over my nervousness and just focused on the potential benefits I was going to reap, especially the one about avoiding a 25% chance of sudden death. I was very calm right up until they rolled me into the operating room. I’ve had colonoscopies and endoscopies and knee surgery in the past so I was familiar with OR’s, or so I thought I was until my gurney rolled into this one. This room was surreal, even the lights over the table looked like something out of a science fiction film, like a cross between giant sunflowers and LED’s. And the eight or nine robotic arms hanging over me were pretty intimidating as well. Plus there had to be a dozen wide screen computer monitors surrounding me, I felt like I was in the Best Buy TV section. It was so bright and I think I counted at least eight people on the surgical team. The thought that kept coming at me was that this must be what its like to be abducted by aliens and probed!
Fortunately that’s all I remember until getting to recovery. Its not unusual for people to have a partial lung collapse in surgery, at least my CRNA daughter in law says so, and that may have happened to me. I was stuck in phase one step down for the next eight hours because my blood O2 which has to stay above 90% for a patient to be released, wandered around in the 70’s and 80’s and stubbornly refused to return to normal unless I was fed oxygen. Eventually they sent me home with some oxygen to get me through the night. I hung around Denver in the hotel for two days and weaned myself off the O2 after the first day. And then we came home. I stopped taking the opioids after the first day even though I had more of the pills. Tylenol and Ibuprofen were more than enough.
I started on my new diet, which is pretty much anything soft or liquid, much better than the pre-op and all my internal systems seemed fine. My O2 levels stayed good, I bought an oximeter thingee at Target that you put on your finger to self monitor.
I’m walking a mile in one stretch each day outside and doing a lot of internal laps in the house every hour I’m awake. I have to eat a bite of food every hour to exercise the area that was worked on, but who doesn’t like snacks? And that’s about all I can think of to say about that.
I was very pleased by the information given me leading up to surgery, by the hospital’s care and by the surgical team. I was less pleased with the post-op information we were given, they didn’t expect me to need oxygen and did not help us much in figuring out how to arrange for it or to return the equipment. They totally changed the post-op diet for the better, which was good, but we had to call the surgeon’s office team several times to figure out the details. Its not exactly like they dumped us once they had done all the work they were getting paid for, but it felt kind of like that. I’m guessing as a Medicare patient they saw me as a liability, because Medicare reimbursement rates are not as good as private insurance. But that’s OK, they did the surgery, and he made some changes on the fly based on what he saw when he got inside me, that put me in a special prized class of patients who have way better than average outcomes.
So, I’m extremely happy for how things went. I’m very glad I did the research and got a true expert instead of some generalist who was going to do the best he could with limited experience and knowledge. On a scale of one to ten that’s worth a million. The post surgery kerfuffles were maybe a two, so they don’t matter at all in comparison.
My takeaways? In today’s world you can still get world class medical care even if you are on Medicare. I worry that won’t continue to be the case, but so far you still can.
It pays to research your condition and who you go to for care. You can take your car to any mechanic and they’ll say they can fix it, but if you’ve got a Lambo do you really want a shade tree mechanic working on the supercharger? To me my body is my Lambo, enough said.
The medical team that took care of me before, during and immediately after surgery were angels, each and every one. They were compassionate and selfless and so kind. And I’m nobody special, they did not know me, yet they made me feel like I was important to them. God bless them, and how in the world can they be so nice when they face an environment of scared and hurting people every day?
Oh, and if anyone ever offers me a another bowl of chicken broth, I’m sorry but I’m going to scream.
What about you, have you had a health experience that affected your view of the medical community?
Have you ever researched your way into much better care than just staying with a local provider?
Are you toying with elective surgery, and if so how do you weigh the risks and benefits?
As usual click on the title of the post if you don’t see a comments box
What an experience–glad to hear it went well. Generally speaking, COVID was a wake up call as far as making sure I’m not slipping on staying active and keeping all the pipes and plumbing in good working condition.
I have health insurance through an employer and recently cut my coverage to the cheapest option, unknowingly taking me out of coverage from my primary care physician who I like and am comfortable with. I have since switched back to the slightly more expensive insurance with a reminder to myself not to cut corners on health care expenses–frugality can prevail elsewhere!
Also a good reminder to schedule a check up.
Those are good points IF, health care decisions should rank up there as some of the most important ones in our lives. There are no do overs if you make a fatally bad decision. I think being able to shop wherever you need to for specialized care, if you need it, is critical. There was literally not a single doctor in my entire state that was qualified to fix my problem I went 1,100 miles to find the expertise I needed.
Hey Steve, happy to hear you made it through and everything turned out pretty well. Also glad to hear that you made the extra effort to find the expert and not trust your life to a generalist. Question: when did you figure out that your innards were improperly arranged? I could definitely see some people not knowing that for their entire lives.
I’ve always had asthma and my pulmonologist noticed it on a chest xray. I got it diagnosed eight years ago when it was bad, but not to the point where it was critical to get it fixed right then. Since I wasn’t having much in the way of symptoms I put it off hoping new tech would arise to make the surgery less lethal and more successful. Fortunately it did and I think I hit the sweet spot in terms of timing.
Glad to hear your surgery went so well Steve!
I applaud your research of finding the specialist in Dallas. Love your analogy about the welder – in some situations you need the expert.
A few years back I needed a hernia operation. To be honest, I was absolutely terrified. Fortunately I had a amazing doctor who understood and reassured me. Plus he did a great job fixing me up.
Shannon, I’m glad your situation resolved. All surgery is pretty scary. There are real risks just from general anesthesia and very real risks of infection with antibiotic resistant bacteria. The trick is quantifying the risks of your particular situation and making the best choice for you.
I was very glad when you sent the message post surgery that things had gone well! I figured it was on Aug 30 or 31 so I had been praying for you! It’s good that your surgeon was in driving distance, even if it was a long drive. That’s really good information and advice about doing the research and finding the right person to get the job done. It truly can be a matter of life or death. That was an interesting description of the operating room!
Thank you Sue, that was sweet of you to pray for me and I very much appreciate it. I have a dear Christian friend who I don’t see often and had not mentioned the surgery to at all. The day after the surgery she texted me telling me she had been praying for me so I assumed someone else had told her. I texted her all was well after the surgery and she asked, “What surgery?”. She told me she had prayed for me only because she had dreamed I was sick the night before and needed prayers! Isn’t than an amazing “coincidence”? God is good all the time.
Glad to hear everything went well and that you’re on the road to recovery! And yes, having experienced both the military medical system, Medicaid, the US HMO system, and the German medical system, I have some very strong opinions about getting the best care, particularly with respect to having a baby (Germans win by a landslide). But agreed, getting educated, doing research, asking questions, advocating for myself, and being willing to drive a little ways away has generally been key. And I’m stealing that line about my body being a Lambo :).
Steal away Mrs. FCB, I’m always getting great ideas from your posts and comments! You have seen it all on health care systems. I remember when we had one of our three babies that there were two small hospitals in our town and they were having a price war on baby deliveries. One place had an all in fee of $1,500 total for a normal delivery. Even back then that was pretty cheap, we took it!
Glad to hear that everything turned out well for you. Good that you were on Medicare and could go to another state for the procedure. Most of the ACA plans seem to only cover a few counties or at the most a state. But I am assuming in a situation like yours they would allow an out of network doctor/facility, but who knows!
I’ve been in the hospital 17 days over the last decade (once for a catch scratch and once for a random virus that was never identified). One thing I really learned to appreciate was how amazing nurses were in the healing process. They really got me through both of my hospital stays. The good ones knew how to play traffic cop and keep the distractions to a minimum (especially at night!). I never understood how you can get good rest to recover when you were interrupted every few hours to do vitals or take blood or do some other test!
Well of course you’d have an affliction that Ted Nugent sang about, Dragon. Nurses are very close to being real live angels in my opinion.
I’m so glad to hear you had a great experience with your surgery. I’ve had mixed experience with medical care for myself and my family. I definitely agree with your point that you should do your own research and proactively select where you get care, and I would add to proactively select what care to get. One of my quibbles with the US healthcare system is that it seems much more focused on surgery and drugs v. other forms of healing and care.
I agree Caroline. Eight years ago after reviewing the facts available getting surgery looked like a very bad statistical choice. Now with more studies having been done and laparoscopic surgery being available for my situation the odds overwhelmingly supported getting it fixed. I shudder to think how much worse my outcome would have been if I had gone with my doctors recommendation back then.
I’m sure I speak for everyone when we say we’re so glad you made it out of the surgery safe without any infections.
Isn’t it frustrating when a non-expert knows more than so called “experts” with their fancy degrees, certifications, etc.? You try to tell them what they’re doing wrong and their fancy degrees prevent them from admitting that they don’t know something.
One doctor told me to get surgery for a simple ankle sprain. One of my friends mom just gave me an ankle brace. My ankle sprain healed beautifully without any complications at all whatsoever.
I have to be very selective in choosing which doctor to trust and listen to.
David, it is sad, but it is understandable. Doctors get very generalized training in medical school but not so much in residency or in fellowships. Most of then are siloed into narrow areas of expertise and they don’t necessarily retain much about the other silos. And like most all of us do in daily life, they will express an opinion on anything you ask them, the trick is to know when they know and when they are guessing. And to find studies that have real statistics on mortality and patient satisfaction.
Yep, it is absolutely understandable as well.
Glad you made it through okay. 🙂
I have never had a serious surgery or a stay in the hospital, but I did have a 3-4 month period where I could not keep down food. I was on a bread, white or light blue Gatorade, and watermelon diet cause those were the only things I could keep down. They eventually realized it was a bacteria issue and gave me meds to take care of it. Was nervous/scared to eat for a while after that, but mostly good now. I totally get never wanting to eat chicken broth again. I was that way with watermelon for over a year. lol
Thanks Geek, fortunately they did a two week phone check up on me yesterday and greatly relaxed the diet and exercise limitations! I think your experience was far worse than mine. I knew ahead of time mine was for a very limited time period while you had to worry about how serious the root cause of your symptoms might be. I think dealing with a known, even if it is unpleasant, causes far less anxiety than dealing with an unknown. Maybe because our imaginations always want to go to the worst case scenario. I’m so glad your situation resolved. And yes, in my case, I don’t think I will ever consume another cup of chicken broth! I’m still a fan of watermelon though.
Glad you came through it okay!
And don’t worry, I won’t offer you any chicken broth 🙂
Froogal Stoodent, thanks, broth, the Horror!