Welcome to our CaringBridge website. We are using it to keep family & friends updated in one place. We appreciate all of your support and especially spiritual words of hope and encouragement. Thank you so much for visiting! Here is my story. (which I am copying, pasting and compiling from journal entries… yeah I did it wrong.) Read more…
THE SCHEDULE: December 7: Begin 2 weeks of strict quarantine December 17: Pre-surgery appointments and several more tests December 21: Check in at 5am for prep. 7am surgery starts with Dr. Samuel J Youssef M.D., FACS. Projected time in surgery is 5 hours. December 21,22: ICU (if things go smoothly this will only be 24 hours) December 22-27: Hospital stay, return home on the 27th.
DEAR FAMILY AND FRIENDS, As you may already know, I will be having surgery through Seattle’s Swedish Cardiac Surgery program. The Swedish Hospital website said that there is a way to post updates for family and friends. I have decided to try it by using “CaringBridge”.
I have had a heart defect since birth. I have known about it for over 30 years… I had hoped that I would be among the majority who have this problem, and that I would never have to do anything about it. But it did not turn out that way.
My official diagnosis: Mitral Valve Prolapse with severe regurgitation and severe bi-leaflet prolapse. It is congenital and degenerative. My specific valve disease is called Barlow’s Syndrome. (
Check the image gallery to see what my valve looks like compared to a normal mitral valve.) In the last 9 years my mitral valve has degenerated to the point that my prolapse and regurgitation have become severe and need surgical intervention. I am hoping that my valve can be repaired and won’t need to be replaced. Surgery is necessary because if I don’t go now, the next step is permanent heart damage, followed by cardiac events and early mortality at some point in the not too distant future. A few years? 5 years? Longer? Not sure. I have trouble functioning NOW. So, I gotta turn myself in. Dr. Youssef is optimistic but not totally confident that the valve repair (valve reconstruction) will be a success.
Here are the surgery plans: A, B and C.
A. 🫀To begin with, I am hoping that my femoral arteries are large enough to use for setting up the Heart-Lung machine. I had a CT scan done at Emmanuel Hospital in part, to determine whether or not my femoral arteries are large enough to cannulate (sometimes women’s femoral arteries aren’t large enough to use that site to set up the heart lung machine) But that test only showed that my femorals are borderline, so it will have to be determined in actual surgery. If they ARE large enough, then, the surgeon will be able to do a right side mini-thoracotomy. (In between the ribs)
B. 🫀If my femoral arteries are NOT adequate, then, I will have a sternotomy. If the valve IS repairable, it will be repaired. If it is not repairable, it will be replaced. That would be a real bummer because it is a big impact on quality of life and lifespan along with other possible complications -many of them. So, my FIRST hope is that I get to have a right mini-thoracotomy and my valve is repaired in a way that Dr. Youssef feels good about.
C. 🫀However, there’s another obstacle… once the surgeon gets in, he will know within 20 minutes if the valve is repairable or not. If it is not repairable, then they will close up that surgery site and open a new one from the front. It would be a sternotomy. And that would be an automatic mitral valve replacement.
Worst case scenario, of course death. But that is not likely. Next worst case scenario: I have to have my valve replaced and I end up with two heart surgeries on the same day. Also, brain damage… mild and temporary, I can live with. If it is worse, well then, paradise is coming soon. So anyways...
I will share some more vulnerability… I am having to steel myself against the thought of them stopping -and emptying my heart. (it will be a shrunken/emptied of all blood, non-beating prune while I am on the Heart-Lung machine) They will also deflate my right lung in order to operate. No heart beat… one lung with no air… It is hard for me to fathom. The heart-lung machine has its limitations as well. It cannot take the same kind of care of the brain or kidneys that the human heart can. The lack of oxygen to the brain can pose a problem. It is not uncommon for Heart-Lung machine patients to end up with some brain damage or cognitive dysfunction -from mild to more severe, and lasting for days, weeks, months, or longer. A lot depends on how long a patient is on the machine. Dr. Youssef is going to try to get what he needs done with the Heart-Lung hookup to within 1.5 hours. (The whole surgery is projected to take about 5 hours) Complications could lengthen the time needed on the Heart Lung machine. (Such as having to transition from right-mini thoracotomy to a sternotomy if the valve is not repairable.) I would really like to come out of this with my mental faculties intact. There is a real chance for some neurological damage because of the heart-lung machine. And kidney damage can also be a consequence. Dr. Youssef’s goal for the surgery is to get in and do a good job ASAP. And the percussionist will have measures in place to monitor cerebral oxygen levels and protect my brain.
Actually, a bigger concern for me pertains to the possibility of hemorrhaging, which is a serious risk factor. (Cardiac surgery typically carries high rates of blood transfusion for anyone who is not a part of a patient blood management program) Thankfully, at Swedish Cardia Surgery, the Patient Blood Management program team are strongly involved in their patient’s care. My decisions regarding blood loss are informed and have all been clearly and formally stated. All is in place. In the ICU, the risk of hemorrhage is twice as high. But, there again, all is in place to handle whatever might come up. What I am keeping in mind is that nearly ALL of my proactivity needs to happen in ADVANCE -in the form of patient education and asking all my questions regarding my surgeon’s commitment to bloodless medicine -and the lengthy list of much safer alternatives. When the day of surgery comes, my research, education, and self-advocacy in that regard will need to be all done. No further opportunity will be afforded.
So, as I move forward, I am continually dividing all of my concerns into two categories: First, things I can and should do something about. And second, things I can’t or shouldn’t do anything about. It has taken a lot of research to even be able to decipher the difference between those two categories. I appreciate so much Jehovah’s voice saying to me: “I will give you insight and instruct you in the way you should go. I will give you advice with my eye upon you.” (Psalms 32:8) So, that’s one thing I m doing… hope it makes sense!
Regarding my family… Somewhere in my reading, the point was made that the whole family has surgery -not just the patient. I can already tell that this whole thing is going to hurt Mark’s feelings pretty bad. He is bracing himself along with me, while we ride up the incline of the big hill on a rollercoaster. It is hard for him to learn the details of what is ahead. So please reach out to him -and encourage him to whine a little bit. He may need to be able to do that. Mark has signed up to co-author this with me. He will be able to post updates when I cant.
Also, Titus, Cassity and Brian -who have a grip on my heart, just behind Jehovah and Mark… any of you who are inclined, please reach out to them as you feel the urge. This will be hard on them as well.
No matter what happens, I want you all to know how much I love you. Also, please know that Jehovah has very obviously been helping Mark and me navigate this up to this point by helping us through a complicated process, with much in our favor. For this reason, I believe he will continue to show further loving kindness to us -either by helping the outcome to be optimal, or by helping us accept and live with a less favorable outcome, until Jesus takes over this sick and dying old system -which was not of Jehovah’s making and restores our beautiful earth and mankind. I look forward to gaining full health in the near future when the meek will “inherit the earth”, like the Bible promises at Matthew 5:5.
A few other verses that matter a great deal to me right now…
“And no resident will say: “I am sick.” The people dwelling in the land will be pardoned for their error”. -Isaiah 33:24
“For look! I am creating new heavens and a new earth; And the former things will not be called to mind, Nor will they come up into the heart.” -Isaiah 65:17
Thank you all for your loving concern and support. I am overwhelmed by all of it. 💔❤️🩹❤️