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Double valve replacement story, 2nd surgery, 9 days post op

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cooperman

Member
Joined
Apr 26, 2019
Messages
7
I wanted to log my experiences for the sake of everyone who is looking squarely at having valve replacement surgery. I am a 40 year old male. I was first diagnosed with aortic insufficiency due to a bicuspid valve at age 19. I elected to have a Ross procedure in 2001, which was performed with success by Dr. Ronald Elkins of the University of Oklahoma. I was only in the hospital for three days, and was able to get back to 100% in about 5 months. Of course, I was young and fit to begin with. I knew it was almost certain that I would need another surgery at some point, but I had returned to a completely normal life and did not think much of it. I have traveled the world, lived overseas, worked three careers (some quite physical), and in general led an awesome life.

For 18 years my checkups were all normal, until the spring of 2019 when I again showed moderate leakage in my aortic valve as well as stenosis of the pulmonary valve. Over the next 8 months, my palpitations and energy level began to confirm physically to me that another surgery was imminent. I began researching surgeons and hospitals, and decided to take my case to Dr. William Ryan at the Heart Hospital Baylor Scott & White in Plano, TX, which is a sister hospital to the Cleveland Clinic. We decided that the best solution to my valves would be a homograft for the pulmonary valve, and the On-X valve for my aortic valve. There would also be some restructuring of the area between those valves (I forget the technical term for it). Dr. Katherine Harrington would be the assisting surgeon.

I did not receive a blood transfusion in my first surgery, and did not want one this time either. To help prepare my body for the blood loss, I received three injections of EPO. One a week, starting three weeks before surgery. The doctors would also used a cell saver to salvage as much of my blood as possible. My blood count was up an additional 50% by the time I got to surgery. Of course, there is a slight risk of clotting at these levels, but it was going to be short lived.

I won't lie. I was terrified of having the surgery done, mainly because of Covid-19. The weeks leading up to it were a test, but some good friends stepped up. I am single, and live alone, so a couple friends volunteered to quarantine for a couple weeks before the surgery. The husband would travel to Texas with me to be my man on the ground, and they would care for me when we returned home until I felt confident I was ready to go back to my house. She is a retired nurse. I am ever grateful for them.

Last week we made the trip to Plano. I had my pre-admission testing done (including covid) on Monday. The surgery would be on Wednesday morning. Another freind of mine had heard about my situation and volunteered hotel points so we had a suite with kitchen to hole up in. We brought along a UV ozone light to sanitize the room. We cooked food, watched baseball, and goofed off until early Wednesday morning.

4 AM came early, but I was ready. No nerves now. I had somehow managed to channel my inner 21 year old. "Let's do this!" After checking in, changing, getting shaved, and saying googbye to my friend, I was wheeled into a smallish stall outside the actual OR. There I met the anesthesiologist and two of the nurses. They all had a business like but exceedingly kind manner. A few minutes later I was taken into the OR, moved over to the table. The IV was started, and...

I woke up in excruciating pain. The breathing tube was still in my throat. The nurses were working on its removal. my mouth was full of congealed mucous. At one point I was asked to hold a suction device and my reply was "I can't move my arms." "Fair enough," was the reply. I also remember thinking "Why am I in so much pain?! What about morphine?!" I was hurting so much that I struggled to breath and had to force myself to slow down. I repeatly asked for medicine. Eventually things calmed down and I was back in the dark.

The next morning I was able to visit with one of the surgeons. He said it was the smoothest surgery he had ever been a part of, and that my post op x-ray was the cleanest he'd ever seen. My platelet count had dropped to 94, and my hemoglobin 11.4 post op, but they were back into normal ranges in 8 hours. I also found out, that due to unforseen circumstances, Dr. Harrington (not Dr. Ryan) actually performed my surgery. After talking with the nurses about the surgeons, three of them volunteered that if they had to have an operation, it would be by Harrington. Apparently her post op patients are almost always in good shape and almost never need blood.

I won't go into the details of every single thing that happened during my 5 day stay in the hospital. I was walking on day 1 (200'). The drainage tubes in my lower chest were causing a stabbing sensation in my lower right ribs that limited my breathing and my comfort. Day 2 I walked twice for a total of 400'. I am proud to say that the nurses and PTs couldn't believe it. I needed morphine to sleep the first couple nights, but that was it. My heart was in a steady rhythm, and I only had a fib once briefly due to low electrolytes. Day 3 was more progress, more walking, and starting to get my INR bridged with warfarin. I slowly checked off the boxes towards discharge. By Monday morning, my INR was at 1.8 and trending upwards, so I was given the green light. I went home.

Everyone I met at Baylor Scott & White was wonderful. Professional, caring, listening, experienced, and detail oriented. The nurses were all-stars. I found out that there was a quarantined covid arm of the floor where I was staying with 5 beds. Not exactly reassuring. On top of that, the hospital was unable to get n-95 masks between the months of March and July, so they had to use the same ones for two plus months, doubling and tripling lesser masks on top and even stapling and taping them when the elastic pulled off. They have some masks now, but they are rationed (we are talking like one a month). There is not enough testing for them to get tested unless they are symptomatic. So everyone masks up always. I kept my door closed at all times, also. As great as the care was, I could not wait to get out of there.

So here I am 9 days post op at my friends' house, typing this. The On-X valve is loud, like a ticking thump, but I don't mind it. I decided to stop taking tramadol because I get twitchy, so only on tylenol from here on out. I am tired and sore, and down about 12 pounds. Sleep is tough. But I know that it will get better. I have done it before. My INR was 3.3 two days ago when I went to my local cardiologist's office for testing, so my warfarin dose was adjusted. I have started a spreadsheet to track my levels as well as general diet. I will be able to start home testing in 81 days. My life will be different, but I am 40 after all. It seems to me like a new adventure with new possibilities. I just have to be more careful now.

Here is a pic of me the day I left the hospital 5 days post op:

Post op day 4 2.JPG

I will give more updates later.

TLDR: Had Ross procdure in 2001 at age 21. Perfect outcome, normal unmedicated life for 19 years. Needed valves replaced again. Had surgery last week, homograft pulmonary valve, On-X aortic valve. I highly recommend The Heart Hospital at Plano, TX Baylor Scott and White.
 

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PAN

Active member
Joined
Oct 17, 2019
Messages
39
Location
UK
Hi, great that you are through this one and recovering well. Appreciate the detail in the write up. Impressive scar :)

Glad the ticking is a non issue for you, hopefully with time the volume goes down a little.

Best of luck with the rest of your recovery (y)
 

cooperman

Member
Joined
Apr 26, 2019
Messages
7
My INR was 4.4 yesterday morning. So still working on my warfarin dosing.

Then in the afternoon my heart went into AFib with a rapid pulse so I ended up in the er. They got my rate down, and all my tests were good. Sent me home, but I’m still in AFib. Uncomfortable not having a rhythmic heartbeat. I dont think I’ll be able to tolerate it long term. Hoping to get a plan of resolution soon.
 

sylviayasgur

VR.org Supporter
VR.org Supporter
Joined
Sep 1, 2001
Messages
2,304
Location
Westchester, NY
Hi Cooperman, it is my understanding that from all the manipulation of the heart in surgery, sometimes a fib follows. My husband Joey went into a fib 4 days post op when he had his ross procedure in 2001. Prior to surgery he had several bouts as well and was on sotolol ( betapace) preventatively (successfully). After surgery, betapace no longer worked. They gave him amiodarone which did the trick. He was on this for years until he decided to have an ablation about 4 years ago. This solved the problem. Fast forward to Jan 2019 when Joey had his second ohs- avr and mitral repair- again, 5 days later a fib. We took him home on Coumadin hoping it would resolve itself- which it did. I believe it is a good thing when the heart goes back to sinus rhythm on its own.
hoping these are just bumps in the road and your recovery continues easily. All the best, sylvia
 

cooperman

Member
Joined
Apr 26, 2019
Messages
7
Just an update and answers to the above questions.

The pain when I was coming out from the anesthesia was because I had not been given any heavy pain meds yet. They wanted to get my breathing tube out before giving me anything that would put me back to sleep. Once that task was done they gave me something and I was out.
The most discomfort was from the drain tubes coming out of my upper abdomen. I had a stabbing sensation under my right shoulder blade and my breathing was limited until they were removed.

My Afib self resolved in 24 hours, fortunately. It went away as subtley as it arrived. As I understand it, 50% of valve recipients develop afib, but 95% of the time it self resolves within 6 weeks. (According a video I watched from the Cleveland clinic.)

My incision has healed completely, save for the two holes for the drain tubes, which should be healed in a week or so. The tubes came out 4 days post op.

Yesterday I had muscle spasms in my right pec and ribs. It was the worst pain I have had since being in the hospital. It brought tears to my eyes. I managed to find a postition to sit in that allowed it to relax in about 15 minutes.

I am walking 30 minutes twice a day. I want to do more, but I have decided to slowly continue to ramp it up since I get pretty tired in the afternoon. Maybe add a total of 15 minutes each week until I am up to a couple hours. I am eligible for cardiac rehab, but there is no way I am going with the pandemic raging here still. (I am in Arkansas and we have been at 500 new cases a day for 2 months.)

I go today to get my INR checked again. Last Wednesday it was 4.4 with a dose of 5 and 2.5 mg alternating days, so I was told to skip two days and come back. My INR was 1.5 when I returned Friday, so the nurse put me back all the way up to 5 mg per day (which I know is too much) and told me to come back in a week. I refused to wait a week to retest with that dosage, so I am going in today. I am expecting another 4+ INR. I am interested to see what they will say. I already feel like I am ready to take over my own testing and dosing, but I have to wait 90 days post op before I can get insurance to cover my home testing.
 
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tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
1,415
Location
MO USA
Cardiac rehab is a good program and really helped me. Three times a week and you can discuss all your issues with recovery. AK may be having 500 cases a day, but that's the whole state, it may not be that bad in your specific area. I live in KC MO right next to Kansas and the covid rates by state make kansas look good compared to MO. But by county makes my MO county look better than the adjoining Kansas county.

I've had lots of doctor's appointments, a mole removal and even dental work since June and it's all been fine. Just wear your mask, clean your hands and stay 6 feet away from others while in public. I also stay up wind if possible :)
 
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slipkid

Well-known member
Joined
Jun 12, 2014
Messages
163
Location
Schwenksville, PA, USA
I also give thumbs up to cardiac rehab. Helped me a lot on the road back plus got better info at times from them than the Drs even. Reassuring also to be doing the workouts as per a recommended exertion level while being monitored closely in various ways (EKG, blood pressure, etc). I hear you about wanting to avoid the germs though during this pandemic.
 

cooperman

Member
Joined
Apr 26, 2019
Messages
7
Checking in again.
I am doing well. I moved back home last week. I am driving again. My INR has been high (over 3.5) the last few weeks, but yesterday it was 2.9, so it appears we are getting my warfarin dose dialed in. In two months I will be able to apply for home testing.

The only things that regularly bother me are my shoulders and ribs. I feel dull pain in my back and shoulders at night while trying to sleep and when I wake up. I also have a little congestion in my lungs that seem to be linked with allergies. The smoke plume from the PNW is covering Arkansas right now.
 

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