Yesterday was my one-year anniversary of a successful mitral valve repair surgery.. I am so grateful for my different tribes of support during the pre and post op phases. I’ve had a couple of echoes since the surgery and all still seems good. I met a fellow mitral valve repair “table host” who not only went through the original surgery 3 times the first time (robotic, then 2x OHS to fix what robotic missed) but then the repair was leaking severely subjecting him to another OHS 9 months later! So so important that you pick the right surgeon and support team/facility! Many many thanks to Dr. Gary Ott and Providence St. Vincent hospital in Portland. Keep on ticking!
For many people, this is what upcoming heart valve surgery seems like! But remember, a rear-view mirror also shows what you are moving away from. I can tell you from experience that if you focus on the second image and not the first your outlook will im
Getting a bunch of the EOB's from my surgery, x-rays, lab work, hospital stay, etc. My health plan enables an on-line look at the details. Biggest surprises were: 1) my pharmacy charges were more than the room/board ($0.53 per aspirin, $11 per pain pill, and lots of IV's that I don't remember); 2) this is the most expensive room I've ever stayed in ($1,862 per day); 3) the annulplasty ring goes for $3,375 (totally worth it!); 4) being able to see a level of detail in the charges that I thought I was going to have to twist arms for.
So grateful for insurance. At some point I'll add it all up. Anyone done that yet? What did you come up with and for what procedure at what facility?
I got my first full cardiac rehab visit in yesterday. At the initial visit when they hooked me up to the monitor it showed I was in A-fib, so I got a pass. But my cardiologist re-started my Metoprolol which seems to have helped the frequent spikes I was getting. Anyway back to yesterday -- only treadmill, recumbent elliptical bike and some stretching. But it made a huge difference in my glucose levels. I knew if I could just get more active I'd get back closer to normal. I'm so pleased! Looking forward to stepping it up though, I never got much beyond my resting heart rate.
Today the roller coaster is at the top of the hill, hoo-ray!
Since leaving the hospital, I've been back once in the ER for A-Fib treatment (a week after my initial release) and nearly again yesterday, when at my first visit to cardio rehab, I went into A-Fib again. This time, I had a scheduled appointment with my cardiologist about an hour later, so decided to keep that (had a bag packed for the hospital just in case). Getting the EKG done in his office and he tells me that although I was in A-Fib for a short period earlier, I now had Atrial Flutter, A-Fib's less well-known but still synchronized cousin. Meaning it's still an irregular heartbeat but not quite as intense as A-Fib.
So result of that is I'm back on Metoprolol (which I was taking pre-surgery, but was taken off of). Back there again in a month to see if the A-Fib and the A-Flutter are contained as my heart heals, otherwise I may see a specialist (electrophysiologist) to map the electrical signals and determine possible ablation or pacemaker.
I guess these are the things that are considered extraneous to the usual description of open heart surgery. I was hoping for a quick return to my regular activities, but it'll apparently be a slower road for me.
I'm still thrilled about having a new, stronger beating heart. It's just that my heart isn't thrilled yet with the new arrangements. I can be patient though. I can still focus on healing the scar, the sternum, improving blood sugar, and being more independent every day.
It's been a bit of a roller-coaster this last two weeks.
The first week post-surgery spent in the hospital with initial low blood pressure, high blood sugar and somewhat irregular heartbeat.
The second week was the typical "3 steps forward and 2 back" although some days only 1 back, that is until Friday when "the Perfect Storm" hit.
Drugs prescribed post-surgery were keeping my blood sugar too high, I was dehydrated and the high glucose pushed me into diabetic keytoacidosis. Didn't feel too well but it was time for a shower, so started upstairs, but only got about halfway before I felt dizzy and faint. Sat down for 10 minutes or so, then felt more like lying down than the shower. But I'm not a serial napper, so got up after around an hour and finished the shower. As Danna was helping me, I started getting dizzy again, had a few tics and threw up. Took blood pressure and way below my normal, took blood sugar and way too high. Felt like A-Fib, so Danna took me to the ER and they did what is called a cardioversion (shock heart back into normal rhythm).
They ended up admitting me for the night for observation, but back home again and feeling better. I definitely need better glucose control, seeing my doctor this week about that. By the way, for anyone thinking about cardioversion to come out of AF, I highly recommend it.
For those of you who've been through surgery, you may know what I'm saying when I say it's always a new adventure every day with a new heart.
For those of you who are looking forward to coming out on this side, know that every day you are continuing to heal and sometimes it just takes figuring out what is right for YOU, not what others say or what the averages are. It's great to ask others about their experiences to try and plot your path, just don't forget we all experience this journey a little differently.
OK, not so original but it's how I feel today. Surgical PA came in this morning and said they'd looked through the last 3 days of pacemaker data and came to agreement with the cardiology team that I could stay another day if I wanted to but I could leave with a heart monitor. So back home with a temporary recliner, swollen ankles and feet (cankles are the official name I'm told) a bunch of prescriptions, clean hair (no hospital selfies here), and a whole lot of gratitude to God and those at Providence St. Vincent's, people who do this every day.
I'll write more over the next few days about the experience...
I'm still in the hospital, now awaiting opinions of cardiologists and surgeons if I need a pacemaker.
Wednesday I had a few episodes where my heart didn't fully complete beating. You know, dub but no thub. So I've been hooked up to internal surgical wires since then to monitor. Only happened one overnight on Wednesday so thinking was all ok.
Thursday I decided to take the PT 's advice and picked up the pace on walking around the floor. That was a mistake, threw me into A fib. So now I'm sitting with a long 2 days now) IV drip of amiodarone which brings me back slowly to normal sinus rhythm. Now waiting for the surgery team "he's fine, he just needs time to heal" and the cardiology team "he's gonna need a pacemaker " to get on the same page.
Will be here at least another day. At least the view and the care team are top notch!
All in all this was not what I expected. Doesn't mean it's wrong or not working though. None of us are average, average is just the mix of all our outcomes. I'd encourage all of you with upcoming surgeries to be ready for anything but always pray for the best!
Meredith here again. My dad is doing well today. Last night his blood pressure was going down too often, and he was pretty uncomfortable. It was hard to watch. But the nurses gave him more volume (liquids?) which helped put a little more pressure on his heart. The nurse said that before the surgery, his heart was used to feeling more pressure. But after the surgery, with his heart working better, there was less pressure on his heart, thus making his blood pressure wonky.
He looks and sounds so much better today. In more pain, but is overall much better.
He is getting moved to the Telemetry Unit in about an hour.
Thank you for all your continued prayers and support. As he puts it, you are one of his tribes.
Jim's daughter, Meredith, here. Just wanted to give you all a quick update on how my dad's OHS went.
Surgery went very well with Dr. Ott and lasted about 5 1/2 hours. They did a repair instead of a replacement, which is great news.
My dad is in the CICU now, starting to wake up. He is in a great deal of pain, so please keep him in your prayers. Hoping that we can get the pain management under control quickly. I will continue to post updates for him until he is ready. He is supposed to be sitting up by tonight.
Thank you for you all your support for my dad, it really is comforting to know that he has so many people who can relate to what he has gone through.
Here's one other thing I did recently to learn more about what's happening to me. I asked my doctor what kind of valve they'd use (artificial) if he cannot repair my MV. I got the manufacturer and the brand, which I was then able to look up and read more about.
So much more confidence and less anxiety when you have knowledge.
We pulled this out of the ground last year when replanting a large pot. Kinda looks like a heart, but the anatomical sort, not the valentines sort!
Angiogram - Last scheduled test
Journal posted on April 4, 2018
Monday morning was my angiogram, the last scheduled test prior to surgery. 6am arrival time at the hospital, ugh. But I hear it's better to be the first on the schedule so small sacrifice of a few hours of sleep.
I won't go into detail of the test here other to say it involved accessing a pulsating artery, snaking a tube from my wrist up to my heart, and shaving in a place I'd rather they hadn't shaved. But the biggest deal is I passed! Which just means the "possibility" of additional time on the heart lung machine in order to do bypasses just dropped off the anxiety list.
(noun): tribe; plural noun: tribes
1. a social division in a traditional society consisting of families or communities linked by social, economic, religious, or blood ties, with a common culture and dialect
I am so blessed anyhow, but so much more so with this surgery coming up in April.
This journal has been a conduit to better communication with family and friends. Some of my friends I see once or twice a week where we play pickleball for a few hours. (If you don’t know what pickleball is, google it). I’d already told a few of them about my upcoming surgery.
So the other night when I was sitting out between games, the play stopped and everyone gathered around (there were 12). Craig explained to those who didn’t know that I had this upcoming surgery, and explained that in the bible, God told Joshua (Joshua 4:1-7) that as a way for the 12 tribes of Israel (did I mention there were 12 guys there?) to remember what they had been through and God’s goodness that they should have someone from each tribe take a stone from the Jordan river and put it on the bank as a memorial, and so that their future generations would know as well. (These were BIG stones). Back to pickleball - then a bag of small stones was passed around, and everyone took one, with it being a reminder as they carried it around to pray for me. The men then all gathered around me and prayed. I can’t even begin to describe how it felt, this “tribe” of mine, with a recreational sport in common who all are praying for me and my upcoming surgery.
It made me remember, I have other tribes. And I have other people who are coming alongside me.
Brad and David, who pray for me each step of the way.
RTM, who although miles away would drop everything to be here that week.
My kids and their spouses, who will be our most helpful hands-on support for Danna.
My family from church, who are walking with me through this and will also support Danna and I in recovery.
My family in both N and S California and Jeanne too..
My good friends from FFCC, and my good friends representing the “local competition.”
I can’t leave out my website valve tribe either, we are all so caring and supportive for a virtual tribe.
And there are others...
To conclude, could I ask each of you to do something for me? Find a small rock and carry it around in your pocket for the next few weeks. When you remember, please say a prayer for me, for Danna, and for the skilled medical professionals at Providence St. Vincent’s hospital who will be in charge of my operation and care.
I write this not only to express my gratitude to my tribe, but to encourage others going through heart surgery to seek out your tribes, share your story and navigate your way forward. My fellow tribe member here Gina just wrote about the many positive changes that occurred in her life as a result of going through this. I couldn’t wish the surgery on anyone, but I could wish them such a journey.
In the practical sense, mental preparation for me might be different than how other people facing heart surgery prepare themselves. Some people swear by meditation for example. I’m already enough of an introvert that meditation might just push me too far down that spectrum.
No, for me it’s practical. Here are a few things that help me see beyond the actual surgery rather than being filled with dread and anticipation.
1. First and foremost, my faith. I know I’ll wake up somewhere, this isn’t necessarily my only option.
2. I’ve been going back and forth on buying a new driver for golf. I think I’ll do that before April 9th.
3. I’m going to make sure we have some green bananas here before I go under the knife. (Some people might not understand that, ask someone).
4. I made a dental appointment for a check-up in September.
5. I’m taking new clients for work beginning the week after I get home.
6. I have an appointment to have my car detailed on May 1 (OK, well that one could be done without me I suppose).
7. I asked Danna to schedule a week in Manzanita for us sometime in June.
I know there are a few other “advance” actions I’m taking, but you get the idea…
First pre-test (beyond all the lead-up to this) was the CT scan today at Providence St. Vincent's hospital. Danna went with me as although I had some idea of what to expect, some of the instructions were a little vague. Anyhow, other than the length of time they left the needle in my arm, which made me a little queasy, it was over and done with pretty quickly.
The CT scan is done with an IV of iodine in the bloodstream, which adds contrast to the pictures being taken of my heart. From this they can see any potential blockages that might be there (I guess that's the case with the angiogram as well, but measured a different way).
I saw my cardiologist last week; he invited me to see him, it wasn't something I expected since he had referred me to a surgeon for the valve surgery.
The visit was essentially to talk about what was happening, but he spent more time than I expected on the angiogram. I had been told that this was a standard pre-surgical procedure to help map out the blood vessels around the heart so the surgeon knows where things are, no surprises, etc. Seemed like a good idea.
So there is that... then there is also the opportunity to look at the degree to which any blood vessels may have blockage. Why you ask? Because while we're in there, we might as well fix whatever else needs fixing! Apparently there is an element to the angiogram of using a tool that measures blood flow (degree of blockage). If it's >50%, they will also do a bypass "as long as the hood is open."
And oh by the way -- sometimes the heart doesn't like the "pre-op" procedures. Heart attacks, strokes, "D", all the things that add anxiety to this adventure.
Valve jobs...hoods...no one has offered any warranties yet. I was hoping maybe there was a loaner program while my body heals afterwards!
Getting more information... so much better being more inform
Journal posted on March 16, 2018
I saw my cardiologist yesterday, approaching 3 weeks pre-surgery. One thing I am finding very useful is asking different experts the same question. For example, I had in notes from first meeting with my surgeon that an artificial valve could be replaced through a vein without second OHS. But had heard elsewhere that was not the case. Anyway, my cardiologist took me through it in detail that although it has taken longer to perfect that with the mitral valve that it is being done, and by the time an artificial valve in me (if MV cannot be repaired) would need to be replaced, it will be much more common place.
I also learned a whole lot more about my coming angiogram. In addition to mapping blood vessels, it will tell my surgeon whether or not he should do a bypass of any sort while I am "open and available." I had no idea that 1) the angiogram was also intended for that and 2) that it was something that could occur during my surgery. But makes perfect sense.
I also talked to him about the robotic approach vs. OHS. In a case of the possibility of a valve repair, but fallback position of replacement after evaluation of 'repair-ability', it is better to already have the chest open. My cardiologist also mentioned studies of robotic vs. OHS efficacy of repair and replace, and said at Providence they ended up seeing faster recurrence of leakage after robotic surgery vs. OHS. His take was that when a surgeon is "hands-on" their tactile capabilities are greater, and even being able to stitch in the annulplasty ring for example yields better outcomes for the patient.
I'm still skittish about going through all of this, but also certain in my faith and where I see God's faithfulness, having first alerted me with an a-fib incident back in 2016 that got me on a regular regimen with my cardiologist, who established the MVR "watch" through the baseline of the echocardiogram. I've learned so much about the human heart and how we are "fearfully and wonderfully made."
Friday my surgeon called me to answer a few questions I had as I prepare for MVR in about a month. Highlights:
1. At the hospital (St. Vincent's in Portland) they used to use the DaVinci robot, but no longer do because the patient stays under anesthesia longer than with sternotomy. Increases risk without beneficial outcome.
2. They typically do not do mini-sternotomy because it requires cutting muscle, which can cause more pain in recovery. Also does not provide as much operating area.
3. The SternalockBlu device for sternal closures has been looked at but he feels is inferior to wire closure, and restricts future access.
4. He says there is a national data base for heart surgeries that records every surgery. Haven't found it yet, but it also shows how many surgeries your doctor has done. If I find it, I'll post here. If anyone else knows this already, please post.
5. He's going to attempt a repair to my MV, but says the tissue may continue to stretch afterwards, causing new regurgitation. "Game-time" decision as to whether to attempt the repair or go with replacement.
When I told a good friend of mine about upcoming MVR, he connected me to his next door neighbor, a retired cardiologist and surgeon. Great guy, even invited me over to his house to talk. I brought copy of my last echo, and after he reviewed it, we talked about a few specific questions I wanted to confirm after first hearing from my own cardiologist and then the surgeon he referred me to. (Then we looked at his classic car collection, but that's for a different journal.)
This is not so much about the advice or consult he gave as much as being able to talk to someone else who's done this for many years and shared perspectives, experiences, offered advice, etc. I know others always talk about getting additional opinions, and I can tell you even though the news doesn't change -- I still need the operation -- it's good to get more and more educated.
I've asked my wife to take some time to read Adam's book as well as get more familiar with the details. When the surgeon comes out and needs to discuss something with her, I want her to be able to feel confident what she's hearing and understand it.