Monday, December 17, 2018

Consult with Surgeon #1

I had my consult with Surgeon #1 this morning. This is the surgeon that my cardiologist would like for me to use for surgery. We had to wait for over an hour to talk to him. Walls were thin, so we could hear him talking to the patients in the room next door, and they were getting some very difficult news and had lots of questions. He took his time with them, and I respect that.

When he finally did come in to meet with us (because of COURSE Jim was there to hold my hand), he also took his time, and I thought that spoke well for him.

He told me that it appears that the best fix would be to put rings around the perimeter of the two valves, and that I was an excellent candidate for repair, as opposed to replacement.

There are two primary ways to access the heart for the repairs I need: thoracotomy approach vs the sternotomy approach. The thoractomy is where they make a small incision between the ribs, and a couple of keyholes. Some find that this is less invasive and an easier recovery than the sternotomy approach, which is where they cut the sternum and open the chest up in the traditional way.

This surgeon doesn't like the thoractotomy approach because the surgery takes 25% longer, is more damaging to muscles, and he doesn't get as good of a view of the heart. In addition, he says it's not a good approach if the tricuspid valve also needs repair because you can't get a good angle to work on it from that way.

So, if I go with Surgeon #1, I'll definitely end up with the traditional scar down the chest.

Surgeon #1 said that the approach to these repairs has changed quite a bit in the 20+ years he's been doing it. He said when he first started in the field, the approach was to wait until the patient was seeing major symptoms and the heart was showing major damage. He feels that the more proactive approach gives the patient a much higher chance of living a long life and reversing any heart damage, so he's pleased that we're addressing this now, before my heart is irreversibly damaged.

My priorities when it comes to this surgery are:

1- A good repair that will let me lead the active life I want to live and minimize future surgeries.
2- A recovery that is as quick as possible
3- Less visible scarring

I'll be interested to see what Surgeon #2 says.

Wednesday, December 12, 2018

TEE and heart catheterization

I had a very fun and relaxing vacation to Morocco. I came home ready to get to the bottom of things going on with my heart.

In the two weeks leading up to the trip, Jim and I attended the Google School of Cardiac Medicine. We learned quite a bit. I think it also helped me come to terms with my situation. The first few days, the idea of open heart surgery scared the daylights out of me (it still does, to be completely fair). I researched techniques to repair the valve that don't require the traditional open heart surgery. I was desperately searching for a less invasive, less scary sounding fix. I discovered a high school friend actually works on developing valve repairs, and he has been a valuable resource to me. My research led me to conclude that if I want a long lasting, high performing fix, one that will let me backpack and run and do other crazy things, I want the invasive surgery. It shocked me to the core to realize that I'd prefer the cracked open chest to the venous repair. I want a true fix, not something that will just keep me alive.

Dr N ordered a TEE (trans esophogeal echocardiogram) and an angiogram (also known as a heart catheter) to obtain a better picture of what was going on. Due to the esophagus' close location to the heart, one can get much better images through a scope than through the chest wall. When heart surgery is being contemplated, doctors also like to do an angiogram to see if there are any blockages or stenosis (narrowing) of any of the vessels prior to surgery. That way if there are, they can repair those issues while they are in there. Since surprises during heart surgery sound like a very unfun thing, I was enthusiastically on board, if extremely anxious.

The TEE and the angiogram were scheduled to take place one right after the other. Because I would be sedated, I was to have nothing by mouth for 12 hours prior to the procedures. I was warned that there was a possibility of having to spend the night if there were unexpected findings or complications. I was also told I would not be able to drive home.

When I arrived at 8am, I signed an initial consent to treat. They took me back, had me take all my street clothes off and put on a hospital gown. They then put 6-8 stickers on to do a quick EKG. I was also asked about my advance directives. (I've printed out our state approved form, but haven't signed it. I really do need to do that) I was also asked if I had a uterus, but no follow up questions. I was also asked if I'd been out of the country in the past 30 days, but no followups to that question either. The RN then set an IV (truly the most painful thing about the whole day) and took a bunch of blood samples. Dr N was going to do the TEE and Dr H (who is listed online as a cardiologist and cardiac interventionist) was going to do the angiogram. They both came in, explained the risks and the why in very clear and easy to understand terms. I signed another consent that said I understood that I could die. Dr H told me that I could choose to have the angiogram go through my wrist or through my femoral artery (thigh). I told him that my personal preference was my wrist, but that getting really great pictures/video was paramount. He said it would be easier to get better images through the femoral artery, so that's the way we would go.

They wheeled me off to the procedure room, and this was when I said goodbye to Jim. Parked the bed outside because I asked if I could use the ladies' room first. I then wandered into that procedure room. There were half a dozen techs and nurses in there who were absolutely hilarious and fun. It felt more like a party than a life or death situation. I'm not sure they would have been that casual with everyone, but since I'd started the conversation by asked for a pole to pole vault onto the really high bed, I set a more casual tone. Because they wanted me as comfortable as possible, they wanted to numb my throat first. The throat numbing stuff was a very thick gelatinous substance in a big syringe. They had me sit with half of it on the back of my throat for two minutes. Then swallow. Dear Reader, it is not delicious. I then had to repeat the process. I told the nurse that she doesn't get to mix my cocktails. She promised if we ever got together at her house, the cocktails there were much better. While I was numbing my throat with the Very Nasty Goo, they were setting up this warm air bed tube thing around me. It was really nice to keep me toasty warm for the 8 minutes I was conscious enough to care. The mattress was also a very comfortable memory foam. 

Dr N came in and chatted for a bit. She had a numbing spray that she was going to spray as well, just in case. Gagging is not an ideal circumstance. She told me that GI doctors have a similar wand that goes down the throat, but it has a camera. It makes it easy to see if there's any anatomic abnormalities or blockages. Because they need the ultrasound wand, she has to go down the throat blind. She told me if she encountered any resistance, she would stop. However, if I am anatomically normal, it should be very easy.

They had me lay down and gave me a canula with oxygen for my nose. They also put a bite guard in my mouth. Then, they announced it was time to give me the sedation. They gave me the first push into my IV. Within about 15 seconds, I could feel it. I felt nice and dreamy. I took the mouth guard out to say that THAT was great and he could definitely make me coctails whenever he wanted and then stuck the mouth guard back in. They decided I was a bit too with it and gave me another hit. night night

When I came to (and remember it), it was 2.5 hours later. Evidently Dr N talked to me before this, but I have no memory of it. Because the incision in the femoral artery needs a few hours to heal, I had to lay flat on my back for 5 hours before they'd even consider releasing me. They had leg squeezy things on my legs to prevent clots, and they were kind of nice. I wished I could make them squeeze harder to really get a good massage in, but oh well. There was a tv in the room, which helped alleviate the boredom.

Now Gentle Reader, I bet you are wondering what happens if one has to go to the bathroom? I can't stand up or move. Well. They have a thing called a Pure Wick. I know this sounds like a plug in air freshener, but it's not. It's this weird She-wee thing with suction so that you put it along your vulva, nurse turns on the suction, and you just pee. It literally took me a half hour to relax enough to do that. All that toilet training as a toddler paid off, I guess. It worked though, and was a very strange experience that I have never read about before. So there's your TMI for the day.

After 5 hours, I was finally able to go for a walk around the floor. I think it was mainly to make sure that I wasn't a fall risk anymore. I was then able to sit down with Dr N. She told me that the angiogram showed my vessels were nice and clear, and no bypass is needed. The TEE showed more details on my valves. It looks like I will probably need to have both my mitral valve and my tricuspid valve repaired. She couldn't say for sure, but she felt like it was probably a birth defect that degraded over time. While sedated, the regurgitation wasn't as severe, and the pulmonary hypertension wasn't as bad. I still need surgery, but it's not immediately emergent.

I am going to have a bubble test done to see if there are any holes in my heart. I will also have a lung function test done, given the pulmonary hyptertension.

I have a consult with Surgeon G on Monday. I am also going to have a consult with Surgeon C, and then choose the doctor I feel best about.

My heart is broken

I have decided to resurrect this blog so that I can document my latest adventure. I think it'll help me organize my thoughts, and maybe it can be informative to others.

I am a very active person- I am constantly on the go. I hike, walk, backpack, run, work full time, and have my fingers in a lot of pies. Over the last couple of years, I have felt increasingly tired. Short of breath. My weight has ballooned. Hikes that I previously did without trouble were incredibly difficult. I blamed my failing energy and stamina on the weight gain, and there was a lot of self flagellation. I would talk to Jim about it, but didn't mention it to doctors because I thought the cause was obvious- I was getting fat because I wasn't working out enough, hiking fast/far enough. I would still hike, but a lot of the joy was gone because it was so hard, and I was so ashamed of myself for how slow I had gotten.

In my family, we have a strong family history of high blood pressure. While we usually die of heart attack or stroke, it doesn't happen terribly young, most of the time. My parents are in their 60s and healthy, though both are on high blood pressure medication. My grandparents lived to their 70s-80s (my grandma is still alive and kicking!). Two died of a heart attack and one of a stroke. Similar story going back to the greats. My paternal great grandmother died of a heart attack in her 50s, but that was a couple generations ago, so doesn't count, right? My maternal great grandfather died of a heart attack at age 48, but he'd also had black lung from working in a coal mine, so most of us figured that contributed to his early death. I also had a great grandmother on my father's side die So I fully expected to need blood pressure medication at some point, and for a heart issue to eventually kill me, but not for a really long time.

All that is to say that when I went to give blood in July 2018, I was startled but not entirely shocked to hear my blood pressure was really high. It had been fine at the end of May when I donated. I don't remember the exact reading, but it was high enough that I couldn't donate. They suggested I relax in the office for a few minutes, and then we'd get another reading. This time, we got 148/85, which was acceptable and donation went as planned. When I got home, I called my family practice doctor to get in to be seen so I could get on medication. I knew that untreated high blood pressure can be deadly and wanted to get going. It took about 3 weeks, but I got in. Long story short, we tried a couple medications before we found something that didn't make me violently ill. It felt clunky though- I'd leave messages that the medication was making me sick, or making my feet bloat to double their size and it would take days to get it resolved. Even after it was "resolved", my feet were often too swollen to even fit into my hiking boots, which was deeply upsetting.

At Jim's urging, I researched and found a cardiologist.When I called to make the appointment, the receptionist was a little surprised and implied that garden variety hypertension didn't really warrant a visit with a specialist. I insisted. Quietly, I thought to myself that I was glad I wasn't a *real* cardiac patient and that I was just being indulged. Ironically, I was able to see the cardiologist far more quickly than my GP. She did a couple tests, found that things seemed ok. However, given my family history and the pre-eclampsia I had with my fourth child, decided to order a stress echocardiogram to check for damage, just in case. I have great insurance (after a massive deductible), so I thought this was fine. She also switched over my blood pressure meds because she could see I was really upset by the fact that I had cankles.

On November 16, I was scheduled for the stress echo. Basically what happens in a normal situation is that they hook you up to a whole bunch of wires with stickers (I'd wager around 15-20). They do an ultrasound of your heart while at rest, laying on your left side.Then, you get on a treadmill. They slowly increase speed and incline until you scream uncle. Then you rush back to the table and they do the same ultrasound, but this time when your heart rate is high.

So, things started out the way described above. However, the tech seemed to take a long time with the initial images. Then, she says she's done with that part, and is going to let the cardiologist know the first test is done and is ready to go to the second part.

Uh oh.

I appreciate Tech trying to not panic me or anything. However, my cardiologist is a very busy woman. I felt very confident she wasn't just hanging around her office, wondering how my stress test was going.

Tech comes back in the room and announces that Dr N will be there soon. Dr N arrives, and she looks over all of the images. She then decides to stay for the stress part of the echo.

Bigger Uh OH.

I know that I'm hysterically entertaining and funny (ha), but not so much that a busy cardiologist is going to hang around and visit with me about my upcoming trip to Morocco and life in general for 11 minutes and 45 seconds while I huff and puff away on the treadmill.

I reach my personal breaking point (which, honestly was partly mental. I think I could've gone to 12 minutes but I was pretty freaked out by this point because something is pretty clearly WRONG with me. I was scared that I would have a heart attack or something there on the treadmill, so when my anxiety got the best of me, I stopped).

They did the second part of the echocardiogram. The tech did part, the cardiologist did part. Dr N asked me if I had trouble swallowing. Uhhhh, well, I never did until you asked me and now I'm convinced I do!

Once she finished, she turned to me and told me that my mitral valve has moderate to severe regurgitation. As a result of the extra work, the right side of my heart is enlarged and I have pulmonary hypertension. She seemed worried that I will be angry with her for sharing this terrible news. She felt that I am stable enough to leave in 2 weeks for a week vacation to Morocco, but wanted to schedule further, far more invasive testing for as soon as I get back. She urged me to not worry too much about this, and to enjoy my trip. I pressed her for more details- "Will I need surgery?" She admitted that yes, most likely. I ask if it'll be open heart surgery and she nodded.

I walked out to the car kind of in a daze. I'm a heart patient. I am sick. Maybe all of the horrible things I have been saying to myself about my lack of cardiac stamina were unfair.

I am upset and scared. Learning your heart has some big problems is terrifying. However, I am so, so grateful that my cardiologist decided to order that stress echo. As weird as it sounds, I'm glad that first blood pressure medication I tried made me really sick. My dad takes the same medication and he does beautifully on it. If I had started taking it and my blood pressure dropped to normal and I felt fine, I am absolutely sure I would've left things at that. I probably would have been out backpacking with Jim and died of a massive heart attack, hours from civilization. I can't even fathom the trauma that would've caused him. Our family. I am 42, which isn't exactly a spring chicken, but too young for people to expect me to die of a heart attack.