Second week at the Weird Gym

I am happy to say that my real class at Cardio Rehab is nothing like my first visit for orientation.

Mostly, it is like going to a real gym. It is still a lot quieter, and you have an older population than 24 Hour Fitness. My class is mostly men and they wear gym clothes. They sweat. Well, mostly. They know how to work the machines and in fact, most of them, exercised quite a bit in their lives.

My class consists of 10 or 11 people. One day there were three women in it but most days there are two.

I have only met one other person who had a similar procedure as me, valve replacement. Talking to Meg ,she had many complications. I don’t want to scare anyone but it made me very happy for myself and very compassionate toward her. She seems fine now, but it has taken quite a long time for her to get back on her feet. She now has a mechanical valve that seems to be working, and she can once again care for her 3 year old. I think that gives her a lot of peace of mind and it is easy to root for her.

The others in class can be divided into open heart for by-pass procedures, people who have had a heart attack, and people who have not had a heart attack yet and are there to try to avoid one.

We don’t talk much about what happened that brought one here because it can easily turn in to “I can top that.” (If so, Meg would win and I mean crush.) Everyone just supports each other and treats all cases as equal. It is true we are all working toward the same thing. Getting our lives back to normal in a healthy way and learning how to deal with the new reality we face. For me, this is just getting back to normal in a gradual way. For others, it is learning new things.

The class also has a lecture one time a week. This week’s sessions was on anger management and how to control stress in your life. The lectures are optional. So far, I have not attended mostly because it would add an extra hour of waiting to whoever is driving me. Next week, I will drive myself so I might attend. Most of the classes do not pertain to me. My diet is pretty good. I understand a lot of what to expect because this is not my first time around. I already treat my mental health, for example, because I was depressed the first time. Now, I have a lot of resources for building my own resiliency.

I look forward to the class and got my heart rate up to 135 in my third of fourth class. That felt good and safe. I still have sternal precautions until next Wednesday so I’ll be able to use something other than 3 pound dumbbells.

I am off all my medications. That proved to be something of a roller coaster. I am having a bit of something like withdrawal from the beta blocker, mutoprolol. As a result, my heart rate is somewhat elevated at rest and a bit sticky. If I raise it, I have to really sit down and get calm for my body to slow it back down. And, my BP is hard for them to measure. At first, they freaked out a bit. They ended up taking it with a Doppler so they can really hear where the pulse changes.

After a bit of a tense day, and several calls back and fourth to my cardiologist, it appears to be a temporary condition that some people have and perhaps just a idiosyncrasy in measuring my BP.

My heart is loud. Other doctors and nurses have remarked on this too. It probably won’t change much and that’s just my physiology. I certainly can feel that my pulse if faster than normal. That did get my attention. However, I have been assured that it is normal in some percentage of people when they stop this drug. In the meanwhile, we keep tabs on it by measuring a bit more often, and I know what the numbers are when we call someone.

Talking to people in the class is good for me. Mostly it is just what you might expect. Guys who are a little bummed to have needed a bypass but grateful that it was caught in time. These two guys both look healthy and were athletic. One guy was actually riding his bike to prepare for STP when he noticed going up hills was a lot more labored. The other guy had a similar observation while hiking. So you never know. Keep tabs on it. Get check-ups and if you feel weird, go get it check out.

Both guys are not anything you would call fat. Both guys are in their 50s maybe early 60s. Neither is challenging about this. They both want to get back to normal and start doing things they did before and will work hard in class.

Some of the heart attack and heart disease people (non-surgical) are overweight but not all. They are not all as chipper about being there. I think it is a wake-up call and maybe a bit embarrassing but they do the work. One guy worries me. If anything he works too hard and occasionally is told by coaches to throttle it back. I don’t get it. There is some kind of denial going on there.

I will be a bit happier myself when my body works through the withdrawal. Then I’ll have a better understanding of where I am. And next week, maybe even 5 pound dumbbells.

First day at weird gym

[I hope this isn’t viewed as me making fun of “old” people. After all, I’m old in the eyes of my kids, nieces and nephews. It is more of an observation on a particular set of people who happen to be older than I am.]

I went to the first day of Cardio Rehab yesterday. It’s a very nice facility, filled with fancy tread mills, stationary bikes, and steppers. In the middle of it all is a rack of small dumbbells and some fancy medical equipment. Plus, around the perimeter, there are screens showing the Today show or some other day time TV. In contrast with a real gym, it is fairly quiet. No Zumba classes; no blaring music. No voice over a microphone saying. “10 more…and 9, 8…”

Just off to the side, is a circle of chairs. It looks like a nice gym that surrounds an absentee kindergarten class.

The other difference is that the people at the gym average 83 years old.

Almost none of them are wearing gym clothes. And not a single one looks like they are sweating. In fact, I don’t think they look like they can sweat.

There is one man. He is wearing blue chinos, a checked flannel shirt, white undershirt and blindingly clean white sneakers. They look brand new. His hair is white, full and combed to the side as if he is taken a shower and gotten dressed to go out in the world, not the gym. The only tip-off is that he has the Nikes on his feet. And for some reason, they look like they weigh him down. They look huge and heavy. They are tennis shoes, not running shoes and they look like they are somehow too big and heavy for his frame.

He has a walker so when he goes from the stepper to the circle, it takes 5 interminable minutes. I had the urge to get of my machine and just carry him to the circle.

M, W, Th are heart days. On T and F, it is lung day. It’s Friday and these people all had some kind of lung surgery or treatment. I didn’t see any oxygen tanks. Lung issues are not good. I’ve concluded this from my unscientific observations both here and in the hospital.

My job today is to give my medical history and learn how to use the equipment. Therefore, I’m just getting a private tour in the middle of a normal class. I’ve been shown how to put on the heart rate monitor. It isn’t like the Polar- one strap around the chest. It is like the hospital: four individual leads and a fairly large (think older, heavy cell phone size) transponder. You put that in a neck holder that you wear. Each person has one and there are stations where they monitor your ECG the whole time you are there. At the stations, you can see a list of 10 different ECGs.

I’m riding a recumbent bike for 10 minutes. The level was 2. I pumped it up to 3 and the therapist yelled at me. Ok. This is going to be a slow progression. She also takes my blood pressure three times, beginning, middle, end. They want to be sure that you don’t pass out or have some other issue. This is all my “base line”.

I also do a three minute cool down, which is hard to distinguish from my workout. But they are just showing me how it is going to go each time. This follows a long conversation about my heart history. As usual, they expected a much worse case. That means, most cases they see of AVR are worse than me. They deal from experience. That means, even though I don’t feel it, I’m the lucky one. I didn’t need my valve replaced because of some other big problem, which is more typical. As a single case, I don’t know that.

During the 13 minutes I am on the bike, I mostly get to see the class do their strength training. It is soooo funny. One lady looks like Madea-meets-Hillary-Clinton. Her hair is nicely done up but looks a bit like a gray helmet. She has giant glasses. She’s short but healthy looking except for the glazed look on her face. She never stops smiling but is the face of someone who looks a tiny bit lost.

Most of the exercises are seated. The teacher is younger than me. She cajoles and has a very pleasant way of leading. But if I were to take away your view of the class, you’d swear she was talking to a pre-school. Everyone looks almost surprised to be there. No one looks like anyone you see at a real gym. No one is in charge of their workout. It looks more like field trip of unwitting participants who had no idea that their destination was the gym. They go through the motions pleasantly but as if they find it more amusing than anything else. “Look Martha. I’m making circles with my arms!”

I don’t know if they just don’t have any experience at a gym or doing exercise for some meaningful reason or what? As time passes, I begin to think they all look like marionettes. They aren’t in charge of their actions; it’s the people who are pulling the strings. And it’s all just a beat too slow. And there is a noticable lack of eye contact with anyone. They don’t look at the teacher or really each other. Eyes are down or looking out the window in bit of far-off stare.

I finish up and remove my monitor. I don’t know what my class is going to be like. It should, at least, be amusing.

Two weeks, one day post-surgery

I remember this last time too. I cannot regulate my body temperature. I sweat like a pig at night. I’m cold other times. I sometimes go out in 4 layers and it’s in the 50F range.

Both my kids were here last weekend. And now both are gone. It was great to see Marc and Nathalie. Marc was here for the weekend and did some “lifting” for us. Nathalie was here from Friday to Wednesday. They helped out around the house. Nathalie took me on my first outing, then lost me in parking lot. I was walking around looking for her with two coffees in my hands and not knowing if I set them down would I be able to pick them up again. Eventually she found me.

It was great for Amy to get some relief after a tough week. Paul, Amy’s brother, was a great comfort in the hospital. Amy was there for hours each day. Paul came and spent several hours on different days just hanging out.

I get better everyday. And that feels good. I think I might be slightly ahead of where I was last time. I don’t know what that means but thinking about last time, we must have gone to the tulips a month or so after the surgery. I still couldn’t drive, if I remember correctly. I don’t remember being tired but I do remember not being 100% either.

I did better with the pain management this time too. But compared to brain surgery, this looks easy. You don’t actually have a lot of nerves in your sternum because it is where the nerves terminate. I get a weird pain in my leg that is referred pain from the “cut-down” where they attached the heart/lung pump to a vein in my groin.

I am only taking Tylenol now and at a fairly low concentration. But it still helps. If I forget or try to stretch too, too much, I feel it. And then it is tough to catch up for a while.

I have a cough, too. Also normal.

I feel good most of the day until about 8:00. Then my shoulders, neck, chest start to get a little achy and I really want to go to bed so I’m in bed by 10 and up at 6 or 6:30.

Today I thought I would see the surgeon for the final follow-up. Instead, I saw the nurse practitioner. That’s ok. I had my final sutures removed. And everything looks good. Therefore, I am “released” back to the care of my main cardiologist. I see him Oct 17 so not quite 2 weeks later.

This time, I’m going to do one thing different. I’m signed up for cardio rehab. I will go to some therapy where they get me on stationary bike and, with a lot of supervision, help me get back to some level of exercise. My doctor told me that I didn’t need to do this last time. He said that my exercise program would be good enough. I should insisted because I spent too much time thinking my heart would explode. In other words, the main point is to help you get over the mental hurdle that you are indeed healthy and that you can TRUST your body. That really took a long time last time.

The soonest I can start that is October 24. And that should go for 6 weeks. I also have been cleared to drive two weeks earlier than originally planned so that should make some of this easier.

I think this might be my last direct missive on the subject of my heart. Might be time to get back to my other giant thoughts. I think I’m gonna be fine, knock wood.

Nurses

I don’t know if this is different from last time, but nurses care for you. There are plenty of Nurse Practitioners, Nurses, and Care Assistants (Nurse Techs). Most of your contact in the hospital will come from a pair of people who will dispense your medications and help with bodily fluids over a 12 hour shift.

For the most part, you might see a Nurse Practitioner once a day; they make the plan. The nurse carries it out. The care assistant fills in gaps.

Nurse practitioner removes the chest tubes. The nurse practitioner is paired with a team. Nurses removed the v wires for the temporary pace maker I had. Usually they would assisted by another nurse.

A nurse or nurse tech would/could remove a failing IV line after 4 days. They might also give you a bath.

I also dealt with Occupational Therapy and Physical Therapy. Occupational comes form activities that “occupy” your day, not from the usual sense of your job. OT taught me to wipe my butt a new way to conform to sternal precautions. And how to shower. Very helpful young man named Henry.

PT checked that I could walk up stairs. Gave me a light exercise program. Reinforced the sternal precautions.

https://www.verywell.com/sternal-precautions-2696084

In ICU you have one nurse who stays with you, more or less in your room, at all times. They seem super capable. My day nurse is in training to become a Nurse Practioner, which in WA, as of 2014, requires a doctorate degree.

Compassion

I told a friend about this. He is studying nursing. He said they are trained to be silent and dignified. Never have two words captured a professional ethos, in my opinion.

And I needed it. I felt bad when I destroyed a bathroom and needed someone to clean my backside. In fact, I was quickly reminded that I was the one making it a big deal and my assistant was just there to do his job.

I encountered a bunch of specialists too. Phlebotomist, xray technicians, even transporters. They were all cordial, unflappable and a big help. I thought, “everyone here is smart. How is that possible?”

One Week post surgery

It is officially one week post-surgery. My days are pretty good. Though, like other people I know who have had big surgeries, the end of the day is the roughest. I am happy when my head hits the pillow; I feel the best when I get up. Showers are possible and good too.

After surgery, you have chest tubes that drain any fluid from the cavity that houses your heart and lungs. You can imagine there is minor bleeding for example. These three tubes press on your abdomen and diaphragm, making eating unappealing which means pooping is not happening. They are long tubes that take up a lot of space.

Each day, my first activity was a chest xray in my bed. This was to verify that my lungs were expanding and not full of fluid. The second thing was a visit by Chris Burke, U of M grad who was Dr. Verrier’s resident or a fellow. His hand was in a cast. He said he broke it and a bone in his neck and/or back in a motorcycle accident. He might be 30 years old but that’s crazy. Get off the motorcycle. Very nice guy who always called me Mr. Langlois.

I was at my psychological low point on Saturday when he told me that my tubes could not come out. They were still draining too much in two of the three. That meant I was there at least until Monday. It was now obvious that I would need to adapt to hospital a bit more in order to get some rest. Hospitals are not restful places. I knew that I would be better at home for sleeping and eating but that was not possible for another couple days. That sucked the wind out of me.

Surgery Success

I lived.

I am at home recuperating from AVR (aortic valve replacement) with re-do Sternotomy. It was a helluva a couple days in the hospital following nearly 6 months of jockeying around with an insurance company.

I won’t say I feel great. But considering how bad I did feel, I am really happy to be home with normal smells, tastes and the possibility of some more consistent rest.

I am in some pain but not much. I have an incision in sternum and an in my groin. The sternum is wired together as it will be for the rest of my life with either these wires or ones from another operation. I have had those other wires for 13.5 years. You have an initial period of limitations followed by none as long as you follow the program and not overdue it.

Basically you cannot move any more than 5 pounds in each hand for 6 weeks. And you can’t swing a golf club, do pull-ups, or swim for 3 months. I can manage all that.

Mostly I am tired. Your body is apparently smart enough to put it’s energy back into repair.

This is my second sternotomy so I know what to expect but the reminder that everything will make you tired is a bit of distant memory.

I am emotional. I’m reading Boys in the Boat and I get all weepy. Every little tiny human gesture makes me blubber, a bit and say “that’s humanity. that’s beautiful.” This happened before too but it feels a little more uncontrollable right now. I know this my mother’s revenge on me. Good one, Noreen. I never saw it coming.

Energy

The willingness to sit here and type this is minimal. I could not give a shit about “work” or really anything more indirect than the pure joy I get from a piece of fruit.

I also remember that feeling and my docket is pretty clear. In fact, if it took me three days to write this, what do I care?

The feeling of a supportive family and friends is a wonder and I’ll take what I can get. Just don’t expect much in return right now.

Time in the hospital is broken into 12 hour chunks. And Surgery is separate from Hospital. You are in surgery then you are in hospital. Nurses just want to know what day you are in. Second day post surgery might be one way to say it. When you say, “it’s my third day.” They say, “It’s only your second.”

It’s one of the first places you see them making things easier for you. I was in ICU Wednesday, following surgery. By late in the midnight, out came my breathing tube. Worst part of the whole thing.

Thursday, I was still there in “Day 1”. Before I could move, I had to have my Foley catheter removed and that means getting up to pee yourself. I got a reprieve until noon thirty. You are full of fluids so you will pee. But now, it’s on you to get up.

Friday I was downgraded form ICU to floor care. You get a different nurse, who have more patients and cannot pay as much attention to you, because you are not as ill. When a bed is ready, you get moved.

By Friday afternoon, I was moved to a cardiac care floor, out of ICU care.

I walked all the way from 5 South to 5 North, following me with a wheelchair. I got a sponge bath. I was soooo happy.

After that, I knew I was on a checklist. ~~Pee~~, poop (which means eat) , wires, tubes. Walking. Wipe my own butt.

Walking

My first attempt to walk was back in ICU. It was with a PT. I did everything right and in due time. Then I just passed out. It made a lot of people nervous. I just found myself back in bed with about 4 or 5 people over me looking really concerned. Probably dehydration.

I am now walking at home for barely 6 to 7 minutes at a time. This is one of those sober up moments. You can’t do more.

And that’s brings me to the end of today.

Schedule is set

This is the old good news, bad news routine.

Good news – my heart surgery is scheduled. Bad News – it will be the open heart variety that is invasive, not the TAVR that would have been minimally invasive.

The date is Sept 21. Why not? I’ll be 54 by then. So in thirteen years, I’ll be 69 when I need maintenance if this new valve lasts as long as the last one. And then, I’ll be older and the TAVR will probably be the magic bullet. So instead of waiting until my almost 70 to have a sternotomy, I’ll do it now.

The other upside is that I will get the maximum size valve now allowing for even more room in the future and good ejection rate now.

The downside is that the surgery is rough and a long recovery. I’ve waited about 3 months for something to happen so I’m glad something is happening.

On May 26, my original surgery for May 27 was cancelled. The insurance company, Premera, denied coverage for that surgery. Since then, I have been going through an appeal process. This has been tough but in the end, unsuccessful.

Because this TAVR procedure has been performed mainly in people in the upper age range. (average age is 86), the results are a bit skewed. They don’t really know how long the valve will last (called a performance characteristic). So the questions of cost, how long the valve lasts, the recovery time in the hospital (apparently this is a large chunk of the costs), this is all more heavily influenced by the older population receiving the valve.

In the older population, the average stay for TAVR is 5 days; The average stay for SAVR (so-called open heart) is 7. Not that different. So the cost doesn’t turn out to be that different. In my case, the stay would be 1 night with the TAVR barring complications. But no one really wants decisions based on one case. Otherwise that works for the insurance companies too. They could force you to have the cheaper option. What’s good for the goose is good for the gander.

The net result is Premera will pay for a sternotomy (crack the chest) surgery SAVR and not the TAVR.

Most likely that will also mean that future TAVR valves will be a no brainer option. They will advance in 15 years and the technique will become the norm. Plus, if I’m lucky enough to be alive then, I’ll be older. I’ll be chasing down the population in which the valve is the preferred option.

I had accepted this possibility a couple weeks ago when we were sent the official denial letter. It seemed inevitable that I would have the big surgery. But hearing it from the doctor was very different and a little bit tough. However, I’m glad I won’t wait to long. They said, “how bout next week?” Which was kind of amazing but also a bit too soon.

I hope to be out of the hospital by around Monday, Sept 26th. I can’t lift anything heavy for 6 to 8 weeks, including a tuba. Around Thanksgiving I’ll be back to being more like myself.

After I get out, I’ll let everyone know that I lived.

Intervention cancelled

My Cardiac Intervention was cancelled. So no surgery tomorrow.

I was told that the insurance company balked at the procedure. This is a definite set-back but also one that is beyond my control. I’m trying to accept it and move on to the next thing.

Once the TAVR was offered and I accepted, joy ensued. Perhaps it was a little too easy, bump, bump, buuuuummmmp. This offsets that a bit.

The next steps are a bit unclear. I’m told that the doctors will appeal and that I should appeal too. I was told that this will not be resolved for 30 days so that’s what I know.

My mental state is disappointment but more just utter confusion. Not sure what to do, what to focus on. It’s a bit like mental motion sickness.

I don’t want to go off in Premera. Yet. And I don’t know what the whole story is because I was told they approved it earlier. I was told by some other medical profession that they have seen this before where one person verbally approves it but then later, when confronted with the paperwork, the company balks.

I thought being in a study would make this irrelevant but the rules change all the time. I was also told that the procedure was recently approved for my specific situation, which should make it more of a no-brainer.

This too shall pass. And at some point they will either do the TAVR or tell me what else to do. In which case I will reluctantly accept it. Right now, the good news is that apart from the echocardiogram, I am unsymptomatic. Perhaps I will develop some good ones in the time until the surgery. To paraphrase Carl the groundskeeper, at least I got that to look forward to, which is nice.

Intervention on track

I will keep this one short and sweet.

I was approved for the less invasive heart procedure. May 27 is the date.

For some reason, this procedure is not considered “surgery”. It is performed, not by a surgeon, but by a interventional cardiologist. Whatever, they call it, it is surgery to me. It’s just a lot less difficult than a “open heart” procedure.

I have two minor tests before then. A pro forma meeting with a second surgeon at the UW so they satisfy some type of protocol; and the final meeting with the anesthesiologist.

The tentative date for those is Cinco de Mayo. I was hoping to trek up the Pass and ski on that day because it is a fun atmosphere.

Later this month, I go to Boston for a little over a week to visit family and attend Nathalie’s graduation. Then surgery. Then, a summer of thinking of what is important in life, most likely, if I had to predict.

I feel good about the whole thing right now. First, because it is the TAVR and second, everything is now scheduled to happen. There is never a good time for this type of thing in one’s life. But knowing when it will happen is so much better than the purgatory of not knowing what exactly will happen and when it might happen.

Heart in the right place

[I reserve the right to pull this down at any time. I tend to overshare personal details because I am naïve and despite my reputation, fundamentally optimistic. However, if it turns out to be stupid to have this information so public, I will take it down.]

Recently, on Facebook, through inattention and the vagaries of using my phone to answer a quick question, I unwittingly created a bit of a firestorm over my health. I’M SORRRY!

Thanks for the extension of all the good wishes. I really appreciate that. I had confided in some of my homey’s the current situation, which is a I need a new heart valve. Unfortunately, I overshared in the wrong place and that went haywire (gotta look up where that expression comes from).

First the facts, I had surgery to repair my aorta and replace my heart valve 13 years ago. I freely talk about this so at this point, I figure everyone knows. But everyone does not know.

That surgery happened when I was 40. It was very challenging for my family and well, me, too. It was what is called a Bentall procedure and my valve is a Carpentier-Edwards valve.You can read about my account here.

Past Heart Surgery

My current situation came to head in February and my routine echocardiogram revealed that my current valve had moderate to severe insufficiency. That lead my great doctor, Fendley Stewart, to recommend that I have a conversation with my previous surgeon, Ed Verrier.

Dr. Verrier quickly summed up my situation by saying it is disappointing that the valve did not last longer but that this is turning out be average. He recommended me to consider a TAVR and began me the process of getting me in the study.

I am now waiting for word on that. In the meanwhile, I am in the intermediate risk category. I probably could live another 2 years with no intervention. But I will get a new valve with this new procedure, in all likelihood before the summer is over.

I was at the hospital getting tests when I posted a status that said feeling optimistic at UW Medicine. I honestly didn’t think that would stir up as much as it did. It has been an object lesson in how to not use social media. I feel the love but I have been there so often over the years for routine stuff that I didn’t think that would be some kind of trip wire for people’s emotional concern. Thanks for caring and sorry for not thinking that through and saying nothing.

So far, the test results are good news because the new valve might possibly be placed without thoracic surgery. It is called a TAVR, transcatheter aortic replacement valve. I was on cloud nine with possibility.

https://www.youtube.com/watch?v=lQDVNPdEC0U

Normally these valves are reserved for people who would not survive thoracic surgery but the reason I might qualify is that I will need to have thoracic surgery at least one more time later in life and fewer is better. In part, it is because I am young.

After my first surgery, I went back to work and met a guy Sam. Turns out we were both have procedures on our aortas by the same doctor in the same week. We became walking buddies because that is something we both needed to do after our procedures.

Recently, I told Sam about my need for more surgery. When he asked me on FB about it, I just blurted out my recent news. I didn’t realize at the time that it was a Post on my FB wall for everyone to see. Somehow, I didn’t take the time to grok that I wasn’t responding directly to Sam. My bad. I take full responsibility for that. Sam is still the man in my book and I’m happy to have input from him about pretty much anything. Even politics.

As I get more news, I will put it here. It is a little bit more private and I’ll try and avoid giving everyone a heart attack. Thanks to one of my buds, I was made aware of the gravitas of having just half a story out there.