Philip's Journal

2018 valve repair at the cleveland clinic. 2019 looks leaky, we will monitor you. 2020 looks like we will have to open you up again at some point. Headed back to cleveland this week for my 2021 appointment. The 1st surgery was pretty hard. I'm not looking forward to doing it again. Hopefully not this year.

Yikes! My valve bicuspid aortic valve repair is not holding up. my leak has returned to the severe category. Looks like I'm going back to the cleveland clinic for open heart surgery... to install an animal valve. Original surgery was Dec 2018... No immediate schedule for the re-surgery.

Today was my last day at work. I have a couple of vacation days to take before driving to Cleveland on 12/4, Preop testing 12/5. Surgery 12/6. I'm kinda excited to get this behind me.

Cleveland is thinking they can repair my Bicuspid valve instead of replacing it. Thoughts?

looks like I got the ole bait and switch. Thought my surgery would be with Dr Roselli. Looks like it's Dr Johnston. Anyone have any comments on Dr Johnston for me?

I have a surgery date (finally) 12/6/2018!

I originally called the Cleveland Clinic back in JULY. If they wanted something I got it pronto and sent if off to them. Took until Mid October to get my face to face appointment. I resigned myself to that. FINE. So last week when I went, they were pretty firm that I needed to go under the knife pretty quickly based upon my enlarged heart... Yeah I get it... that's why I was so disappointed to be delayed until October in the 1st place. They also offered a better surgical option (repair instead of replace) so I was stoked! The clear expectation was that I was going to hear when my surgery is scheduled this week. what did I hear? Crickets. So I gave em a few days and then called. Oh... the Dr is out for the week, he needs to review my file so they can schedule my surgery. I should hear next week. So I wrote my cardiologist at the cleveland clinic hoping that he remembered me and the urgency he left me with. I asked if there was something I could do better to advocate for myself. He's also out of the office but I got an email back from his nurse. Throughout this process I've noticed something and it's the opposite of what I expected. It's not limited to the Cleveland Clinic even my local providers exhibit the same thing. The actual doctors give me the straight poop and create a sense of urgency, but outside of appointments you are dealing with gate-keepers. Gate-keepers are people who control access to and communications with the doctors. I'm sure if my note to the cardiologist actually made it to him, he's be like "Oh yeah" that guy... he needs to seen. But the gate-keepers (generally nurses) work hard to minimize that access. So you don't think I'm picking on the Cleveland Clinic, here's an example from my local cardiologist. Back in June he told me... "It's time, we need to do this". When I got my appointment with the Cleveland Clinic and it wasn't going to be until October, I called the office and wanted to leave a message for the doctor asking whether or not I'm screwing myself by waiting (I know that waiting too long could give your heart more time to enlarge and that is a bad thing). The nurse tried and tried to brush me off saying... he will be ok with you getting a 2nd opinion. Yeah I know that... that's not my question. I want to know if I'm screwing myself. I persisted and she promised to speak with the doctor. Wanna guess what I heard back from them? NOTHING. She may have asked the doctor, but based upon her initial reaction I'm suspect.

Other than that I feel GREAT (still no symptoms). My weight loss is going great. I scaled back my weight lifting based upon the recommendation of the cleveland clinic cardiologist. Just would like to know that I'm doing everything in my power to move this forward.

The scheduling person was not available last week. She's back in this week and I expect to hear when my surgery will be. I expect that it will be soon based upon the interactions with the cardiologist and surgeon last week. They didn't like my heart heart size too much, but I'm still asymptomatic so...

Well, I guess I'm more urgent than I feel. I still feel pretty great... Apparently my heart is a little bigger than they wanted. Good news is that my valve appears healthier than they expected (no stenosis). Cleveland is suggesting a new procedure that my local hospital didn't suggest. They want to repair my bicuspid valve. It will still be bicuspid, but it will also be my own valve. I signed up for it. I think I'm going to get a call from them more sooner than later due to the size of my heart. I liked everyone I met. My mother's family is from the Cleveland area it was kinda cool to meet someone on the staff whose last name was spelled almost exactly the same as my mom's maiden name. Can't wait to get this over. Now I have to research repairing bicuspid aortic valve repair since I know NOTHING about it. Anyone have any thoughts on that?

2nd opinion is tomorrow with Dr Roselli. I've watched several videos on youtube of him. I'm a reasonably smart fellow. It's humbling to realize how little I know. He was talking thousands of feet over my head.

It took a month, but I finally have my 2nd opinion scheduled. I'm super excited! It will be 10/10 with Dr. Roselli. Getting here was a little bumpy. Keto breakfast today was onions fried in grass fed butter, free range eggs from the farmers market, and grass fed cheddar cheese. Breakfast wasn't until noon as I wasn't hungry till then.

I have not posted in a while so here is the timeline to get a 2nd opinion:

7/30 - using the list if records they wanted I started gathering the info several doctors. One doctor was going to mail it to me the rest I went to pick-up in person.
7/31 - Called back the CC because no one from the "undecided" department called me back. The "undecided" department got back to me but referred me to the heart resource center. So I called them and after asking a bunch of questions I decided I'l like to meet with Dr Roselli. I really liked his video on the website.
8/2 Thurs - I called the "undecided" group back and let them know my surgeon of choice. She told me to send the info I was collecting directly to Dr Roselli's office.
8/3 Friday- Received the last item needed for the CC in the mail
8/4 Saturday - organized all of the medical reports and headed to the post office. Mailed everything registered mail.
8/6 Monday - Verified package was rec'd before 9am
8/13 Monday - Since they had set my expectation of a week or two, I decided to call after a week, just to make sure they had my stuff. YES THEY DID! It got to the Dr's office on 8/9, but the Dr. had not yet reviewed it. ME: Cool! I expected that.
8/16 Thurs - Dr. R read my file and wants me to come into the office. They will call me back within a week or two to schedule my appointments... They will schedule everything the same day. Don't be surprised if the appointment is not until Oct/Nov. ME: Hmmm. My local guy told me it was "time" not sure if I can/should wait, but I do feel pretty good. I guess I'll reach out to my local guy when once I have my appointments scheduled.
8/20 Monday - Had my annual physical. Bottom line is the Dr was impressed with the 50 lbs lost in a year, also was happy with most of my blood numbers. BP DOWN. Trigs DOWN. HLD UP. I asked for an HSCRP test. I expected a VERY low number and it was VERY LOW. I love this way of eating!
8/20 Monday - Cleveland genetics called trying to schedule me for a single appointment. ME: Hmmm I expected a bunch of appointments on the same day. I accepted the appointments but left a message for the Dr's office explaining that due to travel I was led to believe that all my pre-testing could be done on the same day.
8/21 Tues - Dr Roselli's office called... yep it was a mix up, she is on the case and will get someone to cancel the genetics appointment and get me everything on the same day. Expect a call within a week.
8/28 Tues - No call back yet? So I reached out. The person I'm working with at Dr Roselli's office said she would try again for me.
8/29 Wed - I've been scheduled! 10/10/18 Everything is coming in the mail.
8/30 Thurs - Everything arrived in the mail! Overnight! That was really good service!

I have to say I was a little disappointed that it took a month to get the 2nd opinion scheduled. I did work very hard to stay on them. I think the thing that held me up was not knowing which surgeon I wanted. I think I could have cut 2 weeks off of the delay had I known. The Cleveland Clinic doesn't probably read these posts and I left out some of the back and forth with people being out of the office, messages, and callbacks. But if they do read this, it might help them to enhance their processes. I kinda do a bunch of process work at my full time job so I know how valuable this information is.

Now I just have to get some help trying to put together some info about my family's medical history for the genetics folks at the Cleveland Clinic. Uhg.

Keto dinner today was a low carb leek/tomato/chicken casserole and dessert was a low carb chocolate mousse with raspberries. Probably 35 gross carbs in total.

Lets roll back 2 weeks. I met with a local surgeon from St. Joes hospital in Syracuse. They are a great regional heart surgery hospital but I still knew I would never forgive myself if I didn't get a 2nd opinion. I decided to get my 2nd opinion from the cleveland clinic for a few reasons. Aside from the excellent reputation and top notch surgeons, it's only about 5 hours away and I have relatives in the area. While meeting with the local surgeon he told me he wanted a CT scan and got me in right away. The bad news was that both my vena cava and my ascending aortic artery were enlarged. The good news was that they were not so enlarged that they needed a surgical correction. I was a little frustrated that it took them until Friday at the end of the day to get back to me because that essentially brought me to the weekend. Anyway, I called over the weekend and got someone to take a message. I got the return call on Tuesday. The lady was nice but suggested that since the decision was made already in favor of surgery, I'd need a surgical 2nd opinion instead of a cardiac 2nd opinion. I didn't realize that there was a difference. She said she'd get me enrolled in the process and then transfer me to someone that could help. So after taking all of my information she transferred me to the surgery 2nd opinion department. Now I'm cooking with fire I thought. Not so fast. Whatever system the 1st person entered me into the 2nd person couldn't find everything she needed so I ended up repeating much of the info. No big deal. Now I'm ready. Now they are going to set me up with a date to drive to cleveland. She asks... "OK which surgeon?" me: Uhm... I don't know. I read about a few of them and quite frankly they all seem pretty fantastic. "Oh so you are undecided?". me: Yeah I guess... I mean Svensson, Roselli, Gillinov seem like they might be good fits... who specialized in exactly my surgery? "I will have to have someone get back to you from the 'undecided' department. 24-48 hours." me: Uhm ok. So I wait the 48 hours and call back... it's Thursday now I get the same woman. me: I was waiting for a call back from the 'undecided department', it's been 48 hours. "I'll go ahead and leave them another message for you." me: OK sounds good. No call back before the end of the business day on Friday. So that kills that week. Come on people I want to get this process moving forward. So what has this weekend brought? Well I got an email with a checklist from the Cleveland Clinic on exactly what medical information to bring for the appointment that I do not yet have scheduled. I also noted a new symptom... I came in from mowing today and promptly fell asleep. That's new... largely unsymptomatic for a year.

procedure is looking like: aortic valve replacement and 1 bypass for a side artery that is 60% narrowed.

thoughts?

Keto meals today: Onions/Eggs/Cheese for breakfast. Chicken, Asparagus, pickled egg for dinner.

Got the results of my CT scan today. Vena Cava is enlarged but only 4.3. Ascending Aorta enlarged but only 3.7. Looks like the surgery is shaping up to be a replacement of the aortic valve and a single bypass. Next step is to get a 2nd opinion... thinking that is at the Cleveland Clinic.

So if you read my journal you know I'm keto. This is what I ate today. No breakfast (it's a weekday). Black Coffee. Lunch was a big salad, with sardines and an avacado. I forgot to pack my homemade olive oil salad dressing. DARN. Dinner was spinach, butter, ground goat. Goat you say? YES it was my 1st time with ground goat, but I have had it curry a few times. How was it? It wasn't that special honestly. Really indistinguishable from beef. I'd rotate it into the lineup periodically I guess. It's grass get and I bet it has a different nutrition profile than beef and I'm all about mixing up nutrients a bit. If you are considering goat, don't be afraid it didn't have a strong taste at all. So what do you think about the keto eating for today? It's really not as radical as some outlets want to portray it.

I was surprised that I really liked the local heart surgeon. Dr Nazem at St. Joes in Syracuse. He was very curious about keto and said he would not limit my menu choices in recovery (but I'd have to remind him later). That's important to me because my body is accustom to this way of eating and if I flood it with CARBS it won't be as efficient at metabolizing them... kinda of a withdraw if you will. Anyway he ordered another TEST so I still don't know the extent of the surgery. Apparently the CT scan will determine whether I need to replace some other part of the system while they are in there... I could be wrong but would that be the aortic root? I kept using that term and he didn't correct me, but now I'm questioning it.

So my surgery is looking like: Aortic Valve replacement (bicuspid), a single bypass, and maybe this other part (root?). I think the other part was 3.5 in size (not sure of unit of measure) when I had my echo. The tech said that it was a good number as they don't like them when they are 5.0 or above. I dunno someone here will probably set me straight. Anyway the CT scan will give him the info he needs. After I get that info I'm going to get a 2nd opinion from the cleveland clinic. So who should I choose from there for my kind of surgery? taking recommendations...

Lets start with the less controversial parts of this post.

I had my cardiac catherization last week in prep for my valve surgery. I have not met with the local surgeon so I don't have a surgery date. I meet with the surgeon TODAY! Yikes! I have a list of questions. We will see how that goes. The CATH went well... I left the procedure with an all clear message, but in recovery the Dr came in and said "just kidding, upon further review of the recording there is a 60% narrowing of a 'side artery'. I don't recall which one. He said that 60% is the lower limit to treat, thought that would be a topic with the surgeon. A little nervous about today's meeting.

Here is an interesting topic for anyone reading this... I'm keto. If you don't know about this, it's a popular but controversial way of eating. Generally it means keeping your carbs super low. Moderate protein, and high fat. Here is my story... back a year ago when the Dr found my valve problem, he also told me to watch two things... watch my sugar, and watch my cholesterol. But he really didn't explain what watching these things meant. I had no exercise restrictions. But I was a little scared to do too much exercise, so I decided to start out mildly... I started with walking. OMG is there anything more boring than walking? I suppose walking on a treadmill might be (lol). So I decided to fill in the holes of what it meant to watch my sugar and cholesterol. I began listening to nutrition videos on you tube. Vegan, vegetarian, anything and everything.... KETO aka LCHF (low carb high fat), intermittent fasting.

So a year into this way of eating (the last 6 mos without really cheating) I'm down 50 lbs, I started a facebook for local (syracuse ny) ketoer's, and I had a year in blood test. The big fear everyone has is related to the fats and whether I'm causing other problems... It's hard to tell from the CATH whether the 60% narrowing is related to the new way of eating or the old one. I'm guessing the old one (3-6 beers a night). But I also got the blood test back... Triglycerides are down 22%. HDL up 12%, LDL about the same. Trig/HDL ratio is 1.41. That's a risk marker for heart issues and it's now VERY VERY good.

For any folks that are curious what meals really look like... I have a big salad at lunch with salmon or some kind of fish and homemade olive oil dressing. I usually skip breakfast on weekdays. On the weekends I skip lunch and have breakfast (bacon and eggs, no toast, Coffee with heavy cream). Dinner is protein (Fish, steak, lamb whatever I feel like) and vegetables (broccoli, spinach, aspiragus whatever I feel like). I stay away from heavily processed foods like sugar, breads, pasta etc. I also stay away from rice, potatoes and most fruit except berries... I have berries everyday. Honestly I feel great and I eat more vegetables now than I did with my old way of eating

Keto will be a subject I bring up with my surgeon. Have a great day everyone.

Anyone concerned about the hospital food prior to going in? I've lost 50 lbs in the past year eating a well formulated ketogenic diet. The diet has a lot of evidence for it but many folks are still unfamiliar with it. Doctors particularly because they have to stick with the standard of care. Anyway in this diet your body gets used to burning FAT as energy. Now if I eat something higher in carbs my body rebels a little. Here is what I'm concerned about... I imagine that I'll be given a heart healthy diet which includes a lot things that I prefer not have. Additionally, I have concerns about any glucose included in any IV's or such. I don't know much about hospitalizations as I never have experience an overnight in the hospital. Does anyone have any experience with this topic?

OK so looks like open heart surgery to replace a bicuspid aortic valve. Not sure when yet. Still trying to schedule the Catherization, then a meeting with the surgeon. Right now it's not looking worse or better than most of these surgeries. We will see. I've ordered the book and will prioritize it once I get it. I have lots of questions... I'll start with two: 1. Local or at one of the big centers? 2. I was assigned a local doctor. How do I decide if that is right?