Earl's Journal

Anyone have experience with autologous blood donation prior to surgery. It seems that I am the only person on the planet that has ever asked UW Heart Institute about donating prior to surgery "just in case"...

Had a stent put into my leg today...  Went just fine!!!  The stent was needed due to the invasive cardiologist messing up my iliac artery while working me up for hvs...  So now we will continue with our regularly scheduled program...  Currently my insurance is telling me they will not cover the hsv because I am asymptomatic, so doctors are trying to find additional evidence that my stenosis is affecting my heart...  Currently, I do not have any of the more obvious symptoms such as shortness of breath, chest pains, etc...  This has been fascinating experiencing healthcare from the "other side"!!!

So today I went to see a vascular surgeon about my leg. Looks like they are going to have to put a stent in my leg which will delay my heart valve surgery for at least 1 month. The leg issue was brought about by a heart cath that was done as part of the work up for the hvs.

So I met with my first cardiac surgeon today. Like him a lot, and learned some new things. He is the first and only person that has told me that he would not recommend a mechanical valve, indicating that 30% of people in my age group ultimately require a replacement during their lifetime. He is recommending a biological surgical replacement indicating that it will provide an excellent platform for future TAVR replacement as needed. He further suggest that he believes that this heart "team" will ultimately recommend TAVR for me. We will see what they say. I have an appointment with UW Heart Institute on December 9th so I have time to think things through.

On another note, he did indicate that he believes the blood flow to my right leg is compromised and has referred me for a flow test tomorrow. It is pretty obvious that I am having trouble as I can't walk more than about 100' before my back and right leg become painful and I am having trouble keeping my right foot warm enough that it does not hurt. Kinda pissed at my heart cath doctor right now as he seems to be completely ignoring this problem.

Well, I thought the heart cath went without any complications, but that does not seem to be the case.  About 4 days following the procedure I started to notice that my right leg was cramping up and my toes were going numb when I would go for walks.  On November 23rd I was schedule for a CT scan as a workup for my heart valve replacement and one of the things that it showed was that I had a slight tear in my iliac artery.  So, I spent 5 hours in the ER only to be sent home by the doc on the hope that the issue clears itself up.  Today is November 26th and I am still having issues.  I have an appointment with Dr. George Carlos, a TAVR surgeon at Providence Medical Center on November 28th and I will discuss with him.

My heart cath went just fine with the hardest part being that I had to lie flat on my back for 6 hours post cath. The doctor indicates that my arteries are clear which is a good thing and actually a little surprising to me.  Next week is the CT scan which I believe is to see if my aorta is enlarged and then we just have to decide what repair procedure will be used. It is looking like the actual surgery will be in late January so that I can spend the holidays with my family!

Interestingly, I just found out that my 2nd cousin on my father's side also had a bicuspid aortic valve requiring repair.  His was done in 2010 and he recently died in 2021.  He had a biological valve. I am unclear regarding his death, but will be finding out soon.

Today marks 3 weeks on my South Beach diet and I am down 14 lbs.  I have 5 lbs to go to hit my first goal of 200lbs and then on to my next goal of 195, then 190. I don't think it is possible for me to get down to 185 by my surgery date, but 190 is better than nothing and I suspect that I will drop a few pounds during the surgery recovery period.


This Wednesday is my heart cath and then CT the following Wednesday. 

Hey Gang - Doing a lot of thinking about life-long Coumadin.  For those that are on it, can you tell me the pros/cons from a user perspective.  I don't want my life to be about going to the doctor every week to have my blood tested.  Your thoughts will be appreciated.

Yesterday I met with Dr. Christina Chung a Interventional Cardiologist with the UW Heart Institute...  The visit was excellent...  She spent an hour with me explaining my diagnosis, prognosis, various approaches to heart valve replacement, and recommended a course of action at UW that meets my needs...  She is referring me to Dr. Gabriel Aldea, the Chief of Adult Cardiac Surgery at the UW School of Medicine...  Heart valve repair is 80% of his practice and he has conducted over 10,000 cardiac surgeries, 5,000 valve replacements and is doing 325 TAVR's a year currently...  I am looking forward to meeting with him after my heart cath and CT...  

So today I go to meet with a cardiologist at the University of Washington Heart Institute to get a second opinion...  I'm positive that she will tell me that I need to valve done, so really what I am looking to see is if I like the UW system better than the Providence system...  If I need to change to UW, I will also have to change my insurance - which I have found out to be a pain in the rear trying to find out whether or not specific doctors are on specific insurance plans...  It just should not be as difficult as it is...

So one of the things that has really been playing with my mind is a concern about becoming addicted to the pain medications they may have to give me...  I don't even know what procedure they are going to be using to do my valve replacement, but I know there will be pain involved after the surgery and I have seen so many lives ruined by opiate addiction...  Have any of you gone through a valve replacement and not needed to use opiates?

My efforts to lose weight are off to a good start... So far down 10lbs, but still have at least 15 to go... I have started to identify/get things that I think I will need during my recovery... One of the things that I ordered that I am really impressed with is the CallToU wireless caregiver call button... We are fortunate to have a fairly large house and this will make it very easy to let my wife know that I am in need of something... I tried to get her to let me use it before the surgery and you can imagine the look she gave me!!!

Just finished my first read of Patient Guide To Heart Valve Surgery...  I know I will read it at least 5 more times...  There is so much to learn in the book...  Interestingly, I found the post-surgical sections to be the most enlightening...  It is easy to over focus on the technical details of the surgery, but the truth is that the majority of the "hard work" appears to be after the surgery...  Given this new information I plan to find a Cardiac Rehab program prior to my surgery, as well as find some way to give my wife support as we go through this... It is going to be as hard on her as it is on me...

Feeling like I need to get things organized for my wife and boys... I have always been pretty organized for them, but now it seems even more pressing... Just sold a truck that I have been meaning to sell for 3 years... Have a spare boat that I don't use that I have listed... Have a car trailer that I will be selling/consigning as I will not be drag racing anymore... And lastly, I have a book called the Answers Book, that has all the information my family will ever need in the event of my death... I usually update it every year between Christmas and New Years, but I might not be able to do that this year...

Hey Gang - Does anyone know if blood is commonly required during heart valve surgery? If it is I would like to begin coordinating blood donations for myself as soon as possible.

Today I began seriously learning about my condition and the techniques used to treat my condition.  I have read four of the ebooks offered on this site, and purchased Adam's book and have gotten about 1/4 of the way through the book.  I have learned a lot and will be sharing the book with my wife and son's so they can better understand what I will be experiencing.  One thing I learned that floored me is that now there are minimally invasive surgical approaches to valve replacement.  In my mind, they either cracked open your chest, or the did a TAVR.  This is exciting news for me.  The other thing that I learned is that often there are aortic conditions related to BAV.  My initial cardiologist did not mention any of these things.  Lastly, I was given some comfort in reading peoples responses to life-long blood thinners.  Perhaps the mechanical valve is a good choice for someone as "young" as I am.  So much to learn!!!

So, I have been overweight for at least 15 years... 225lb @ 5'11"... My cardiologist recommended the South Beach diet and in all honesty it is a reasonable diet to be on... It is amazing how many carbs we get in our food supply that we don't even realize or understand... Frankly, I think our FDA has done us a huge disservice in regulating our food... As of today I am weighing 212lb... I have a lot to go, but my goal is to be to 200lb by the end of December and then keep losing weight until my surgical date which has not yet been set.

Today I spoke with Paul at UW Heart Institute. He is getting me "in the system". Paul is a nurse and serves as their coordinator. In looking at my ECG, he seemed to think that I do need to have surgery sooner than later. I am disappointed as this will mean that I cannot go down to AZ this winter. But I guess on the bright side, having this done during the sucky season is better than having it done during the summer.  Hopefully we will not have to cancel our Hawaii trip.

I guess today begins my heart valve replacement journey. Diagnosed with BAV 18 months ago, had my second ECG a week ago, and now my cardiologist tells me I need to have the valve replaced. So happy that I found this website and the information herein. I hope to find answers, understanding, as I try to "take charge" of my situation.