Wednesday, January 9, 2019

Consult with Surgeon #2 and scheduled!

Today I had the surgery consult with the second doctor, which is the one that I had initially chosen as my first choice. I have a couple friends in the valve research/clinical trials sector, and they both recommended Dr C. Additionally, my uncle's friend had minimally invasive valve repair last summer, and had a great experience with Dr C.

Today I arrived at the office, and I was given the same paperwork I've filled out several times before. They weighed and took my blood pressure (113/72!!) and took me back. I first met with the PA while Dr C looked over my echocardiogram and other information. Lori was really great. She had an excellent bedside manner and was very informative and engaging.

Eventually Dr C came in and we had a great conversation with him. We kept getting sidetracked because he enjoys photography as well (though he's a Nikon guy.  *sigh*) He impressed me with his knowledge and number of surgeries he does. He agreed with Surgeon #1 that the sternectomy route was the better way to go since I'll most likely need both my mitral and my tricuspid valves replaced. He said he's only aware of one doctor in the country that does both through the side of the chest. He's observed that surgery and feels like he could do it, but he hasn't done it. If I wanted, I could be his first. I politely declined. I'll go old school for this. I told him that my first priority is to have a good repair that will perform well and last a long time, and I'd rather have him start off in the center than decide to switch to that after a while. My only concern with the sternectomy is that the scar be straight. He genuinely offered to let me draw the incision line. I think I may take him up on that!!!

We scheduled the surgery for five days from today. I have been taking fish oil supplements, and it turns out they act a bit as a blood thinner, so I have to be off of those before he can operate. I will arrive at the hospital on Sunday morning. They'll do all kinds of pre-op stuff, and then I'll go into surgery Monday morning. They said it'll take approximately 5 hours to do the repairs.

I have to admit that as this has drawn on, my anxiety has ratcheted up, and I probably have been drinking a bit more than I should. I called my cardiologist and asked for her to prescribe something for that, so I picked up that prescription today. It's not Xanax, and I'm a little disappointed, because I've been interested to see what that's like.

After we met with the surgeon, we were able to say a quick hello to an old high school friend who happens to be a cardiac PA, as well as one of my hiking friends who also works on the clinical side at IMC heart institute. He had really great advice, insights and food for thought. While I am a good candidate for repair, I need to consider what I'd want for replacement if I can't be repaired. Do I want a pig/cow valve (more organic, no blood thinners, but doesn't last as long) or mechanical (probably last forever, but a lifetime of blood thinners and accompanying risks). It's definitely something to think about.

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.

Thursday, December 29, 2016

How I refinished my cabinets

I have seen a lot of information out there on how to do this. Before I started my project, I spent hours researching it. I've had a lot of people ask me how I did it, so I decided to condense my knowledge into one post.

We bought this house as a foreclosure. I loved the tall cabinets, but the cabinets were in rough shape. They were filthy, and the finish was wearing off in the areas that were touched often.

any guesses on how this happened? I'm at a loss.

 The very first thing I did was clean everything. I have a steam cleaner, but I felt that it was making the wood mushy and wasn't really doing a great job, especially on the areas where the finish was worn off, so I stopped using that. After that, I used an orange based cleaner that said it was good at degreasing. I felt like that really helped clean off the years of built up grime.

Next, I removed all of the doors and the hinges. I left the hinge in it's corresponding cupboard so that I would know where it went. Some people talked about how their hinges were specific to that cabinet and not interchangeable, so I was cautious. As it turned out, my hinges didn't care. In the groove where the hinge was, I labeled each door with where it belonged. The upper cabinets got letters and the lower ones got numbers. I started at the far left and worked my way around. It made putting the doors back up much, much easier. I wrote those notes in sharpie, then used a little bit of painter's tape to cover it. This served two purposes- it kept paint out of the groove (which would make the area smaller) and it protected my notes.

Once the doors were removed, I inspected each one carefully for damage. One door had the picture frame coming away, so I reglued with wood glue, and clamped overnight to dry. The holes and divots were filled in with a wood safe spackle.

Because I didn't know if the previous finish was water or oil based, I needed to prep the surfaces before painting. I ultimately decided to use an oil based primer that was compatible with water based paint. My pick was Zinsser Cover Stain. I ended up buying two gallons, but not only did I paint my kitchen cabinets, but I painted a 60" bathroom vanity and 4 more cabinets that were in the laundry room. I still have about 3/4 of the second gallon left over. Because I was painting my cabinets white, I did not tint the primer. However, when I painted yet another vanity black, I did tint that as dark as I could.

 I taped around the edges of the boxes so that I wouldn't have to deal with weird edges. We were planning to paint the walls, but I just felt it was better not to have overlap. The boxes here are prepped and ready to go.

I applied two coats of Zinsser Primer to the boxes and the cabinets, letting each one dry at least 18 hours before applying the next coat. I used a small roller for the most part, with a brush for the insets on the doors. The doors took longer because I had to let each side dry before I could turn them over.

My research led me to the decision that Benjamin Moore's "Advance" paint line was my best bet for my cabinets. It's a thin paint, which means it's self leveling. That means that you're not going to notice individual brush strokes, as it will settle itself. I chose the semi-gloss finish because I felt it was scrub clean easier, without being weirdly shiny. Did you know that Benjamin Moore has over 50 shades in the "white" category? I eventually settled on "Cotton Balls." Ultimately, I did 4 coats on the front and 3 coats on the back. I used a foam roller for everything other than the indented part, which I used a regular brush for. I noticed a lot of bubbles that I had to go back and pop. In talking with an expert, a foam roller is much more likely to create those. If I were to do it again, I'd use a very low nap traditional roller instead of a foam roller. After painting, I waited 24 hours before flipping over or doing another coat.

Once I was done painting, and had let the paint cure for a day or so, I put drawer pulls on the handles. I felt like paint would not hold up to the oils in the human hand as well as a stain, and that metal drawer pulls would decrease contact with the cabinets. I found these lovely birdcage pulls at Amazon and bought enough for the house. I also bought "pop out" drawers for the false drawers at the sink so that I could store sponges there. This photo shows the after. Once the new granite counters were installed, I reinstalled our cupboard drawers. I also installed the back splash, which was quite easy (definitely easier than it looks, but another blog post). The other improvements we made to this room were that we painted the walls and ceiling, and we took out that awful flourescent light and installed LED can lights and the three pendent lights. We also ripped out the improperly installed tile and put in "wood tiles", which look like hardwood, but have the durability of tile.

Wednesday, August 17, 2016

Back to School

Today the younger two went back to school. I can't believe how quickly the summer flew by. I swear they only had a week or two off. We did get to do a lot of fun things. S spent a week at Girl Scout horse camp. We spent a week at Zion National Park. We spent several days at Yellowstone National Park. We camped at a lot of local places. We swam. We hiked. We star gazed. We watched a lot of movies.

Their school requires uniforms. In theory, I don't like uniforms because I like to see my kids express themselves creatively through clothes (like the time when Z was in kindergarten and wore gray pants and a gray shirt and told me he had tricked me with the "No Costumes at School" rule because he'd dressed up as a rock). In practice though, when I'm walking around their school, seeing all of the kids in the uniform is almost too adorable to bear.

I see the first day of school as a milestone. I haven't gotten too weepy over my own children going back to school in a while, but seeing all of these darling children in uniforms, the impossibly tiny kindergartners and their parents trying to hold the tears in will almost make me lose it.

Wednesday, August 10, 2016

Minecraft Lunch Box

My kids have gotten into Minecraft in a big way. It seems like all of the kids nowadays love it. We're getting ready to go back to school, and S announced she wanted a Minecraft lunchbox. All right, given the popularity, you'd think that'd be easy. Nope. Evidently she is the first kid in the United States who had this idea. Not one to be discouraged, I decided to create one for her, and I'm pleased with how it turned out.

I didn't want to deal with sewing something like this (I HATE sewing zippers), I went to the local Wal-Mart. In the sporting goods department, I found a soft side soda cooler. It says it has a four can capacity. $4.97. I bought a couple containers of acrylic paint- two shades of green (I have white and a black at home, so I could create slightly lighter or darker shades).

 Once home, I used a seam ripper to remove the rubber penguin logo off the front. Then I used a ruler and pencil to make lines on the box. I used painter's tape to block off the eyes and mouth of the Creeper.

Painting the Creeper- I mixed some white or black paint with the greens I bought to give more color variation, but still have overall tone family match.  Then, I painted each square a different shade of green. The nice thing about the pixelated Creeper is that there's no particular pattern or order. As long as I didn't have two squares exactly the same color next to each other, it looked about right.

Once everything dried, I coated everything with a couple layers of mod podge to give the paint a bit of protection. Kids can be rough on their lunchboxes and I didn't want the paint flaking off after a month or two.

I'm pleased with how it turned out, and my total cost was well under $10.