Hello fellow heart warriors. It’s been a while. I had a successful Mitral Valve repair at Mayo Rochester in March 2017. All had been going well until last March when the pandemic hit. Up until then, I had been working out 3 days a week with Kettlebells, as well as many other strenuous activities. I was in the best shape of my life up to that point. Then in March, all the gyms closed and it was no longer safe to work out in groups. We live in Florida over the winter with year round biking so from December until early May, I put on over 1000 miles. We live in Minneapolis for the summer and we arrived about 3 weeks ago. As soon as we arrived I came down with a UTI. One of the drugs prescribed was an Alpha blocker (Tamulosin) to help with “flow”. Some of the side effects of this drug is lightheadedness and dizziness upon standing (check) but I don’t know if it affects heart rate. Which leads me to my latest issue.
I’ve been sidelined since arriving due to the UTI, and it’s been the hottest June on record with every day well into the low to mid 90’s well into the evening. Needless to say, my fitness level has all but disappeared. And now, for the last several days, I’m experiencing some bouts of Tachycardia. Just walking the dog down the block gets my heart rate up to over 130 bpm. My normal pulse for that is around 108-110. I was walking around at a flea market on Sunday and my Apple watch registered a pulse of around 148. It’s an IWatch 5 with EKG capability and no AFIB was detected. Could this be a simple case of de-conditioning? Could it be caused by the Alpha Blocker? Or could it be something more serious like my repair failing or another heart issue? Has anyone else had similar symptoms 4 years out?
Hello fellow heart warriors . I was recently contacted by another fellow Mitral Valve repair patient wondering how I was doing and suggested that I update my journal. Well...I'm still here!
As you all know, I had a stroke 3 months after my repair which gave me a minor setback. I was admitted to the hospital on Tuesday June 6th and was back to work the following Monday. My HR person thought I was "nuts" but I was determined to not let it stop me from living my life. Fortunately I was admitted during the "golden hour" and the clot was removed via a thrombectomy and made a complete recovery with minimal after effects. I notice that my left side is somewhat weaker than my right but that should improve with time. I started back with Kettlebells in July and gradually getting stronger. It will take at least a year to start feeling normal again. I lost almost all the muscle gain that I worked hard to attain in the last 9 years. I'm also temporarily sidelined with a back injury caused by going too heavy on some barbell deadlifts (180 lbs) during my training. I'm still worlds ahead of where I was 3 months ago.
I also met with a thrombosis exprt to help determine when I can get off Warfarin. He determined that the clot that caused the stroke came from the valve because I got off blood thinners too soon. When blood hits an artificial surface it clots. That's why you're on them fo life with a mechanical valve. The artificial ring in my repair hadn't fully healed.
I was admitted to thechospital today for a stroke. . My valve threw a bloodclot which caused extreme dizziness I had the oresence of mind to call 911 and they administered TPA in time. Fortunately there is no permanent damage. I was doing so well with my recovery I never imagined that this would ever happen.
It's now exactly 2 months since my Mitral Repair at Mayo Rochester. I finished my Cardiac Rehab last week. I started playing Table Tennis again to help with my recovery and really starting to enjoy it. I'll probably start doing Kettlbells again next month. The first time I started playing Table Tennis I noticed I was extremely exhausted after about an hour and was light headed for the rest of the day. I was almost gasping for air after about a half hour of drills. I played yesterday and I noticed a big difference. I was hardly tired at all after 90 minutes of skill drills and about 8 or 9 doubles matches. I'm also now noticing that I don't get light headed when getting up from the couch like I used to. My blood pressure is holding steady at around 100/76 and I've been off all heart meds and Warfarin for about a month. Life is starting to get better!
I'm now 7 weeks post op from Robotic Mitral Valve repair at Mayo. My incisions have healed nicely and now completely off Warfarin and Metropolol. My post op blood pressure is still much lower than before surgery (130/86 vs 110/ 78 now) Hopefully that will last. I'm 5 weeks into Cardiac Rehab and the exercise techs are very pleased with my progress.
Although I'm feeling better since surgery, my stamina has taken a huge hit. Pre-surgery I was doing very rigorous Kettlebell workouts 3-4 times per week plus lots of biking. Now all I can do is walk on a treadmill. I've gotten back into Table Tennis that I did a lot as a kid. I was on an adult league about 10 years ago and could play for hours. Now I get completely out of breath after a few low intesnsity games. I do adult drills on Saturdays for about 90 minutes and I'm nearly useless for the rest of the day. I played a few short games at work (they got a table to help emolyees blow off steam) and was out of breath after about 20 minutes. It's as if I never worked out before and it's driving me nuts!
How long does this lack of stamina last after Mitral Valve repair? Does it eventually come back in its own or do I have to tough it out and rebuild it from scratch?
Met with my Cardiologist this morning for my 6 week post op follow up. It was right about now exactly 6 weeks ago today that I was being wheeled into the OR at Mayo Rochester for my Robotic Mitral Valve repair. He said that I could stop taking Warfarin, Metoprolol and chewable aspirin as of today. What a whirlwind ride this has been. I'm just glad I came through it with minimal complications
My recovery is moving along nicely. Just did a 2.5 mile walk this afternoon. Now completely off pain meds. Going back to work on Monday.
I'm still getting lightheded when standing up too quickly (thanks to my low dose Metropolol). I'm taking less than 10 mg of this stuff per day and it's still dropped my BP by 30 points. I'll be off Warfarin on 4/26.
Hopefully can start back on Kettlebell in a few months. I have 4 more weeks of Rehab to complete first.
For those facing Mitral Valve repair, there is light at the end of the tunnel. I may have had an easier recovery than some, but I'm not unique. In most cases, the anticipation is far worse than the actual procedure and recovery
For those of you wondering what the incisions look like for Robotic Mitral repair, here are mine 2 weeks out from surgery
What do you do if you need emergency dental work?
Journal posted on March 26, 2017
I started noticing some pain in my back molar on Friday night. I chalked it up to just increased sensitivity. Last night it started getting worse and by this morning, it's starting to develop into a full fledged toothache.
I just had my mitral valve repair 10 days ago and I'm on Coumadin. I know my surgeon would prefer that I wait 6 months for any non emergency dental work. I obviously can't wait that long. I'll probably need a root canal.
Will I need to stop Coumadin before any procedure. I know that I'll need to take an antibiotic at least an hour before the procedure.
Has anyone else required emergency dental work so soon after surgery? What is the protocol?
I am healing and all seems to be well. Still feeling some pain from the Thoracotomy and the groin incidion for the heart lung machine, but it's managable.
The only other concern is I'm getting lightheaded after standing quickly from a lying or seated position. Once I had a full syncope event which scared my significant other. I'm thinking it's due to side effects from the Metropolol and Warfarin.
Anybody else ever have this issue post Mitral Valve repair?
How many of you were put on Coumadin after your MR repair?
Journal posted on March 19, 2017
I just got discharged on Saturday evening. They put me on Coumadin for the next 6,weeks and I need to get my INR tested. I tried making an appointment at a local clinic but nothing is open on Sunday. How much trouble would I be in if I wait one more day to get my INR tested?
I was feeling really good so I pushed myself to walk a bit more. Then the nerve block wore off and now I'm quite sore. The right thoracotomy is now barking pretty good. Need to lay low and not push myself so hard. Once they pull out the drainage tubes, it should start feeling better. One step forward, two steps back
Started using my incentive spirometer (I asked the PA if it doles out cookies if I reach a certain level :-) ) I'm up to 1500 on day 2....not too bad
Day 2 post surgery
Journal posted on March 17, 2017
Making some progress but the tube from my thoracotomy is really impeding my progress...hurts like he!!. Once they pull that out, I hope that I'll progress rapidly. It feels like 2 steps forward, one step back.
It's 6:00 AM and about 10 degrees outside. We're headed off to Rochester for my preop tests and final consult before going under the knife tonorrow. I'm hoping for a succesful tepair and quick and uneventful recovery. I know there are several of us on this site having surgery tomorrow. My thoughts are with you as well
And two days from now I 'll be heading into surgery at Mayo Clinic for Robotic Mitral Valve repair. These 2 years have gone by very quickly, yet the last 3 months seemed to tick by a minute at a time. Funny how that works when you're facing a major life event. I wish everyone in the same boat a safe an uneventful journey
My surgery at Mayo is coming up on Wednesday. Getting 1 last Kettlebell workout in. Here I'm swinging a 24 Kilo Bell. Sure gonna miss my Kettlebell classes for the next 2 months
1 week to go
Journal posted on March 8, 2017
Exactly one week from today, probably about this time, I'll be laying on a gurney at St Mary's Hospital in Rochester MN and being wheeled into the OR for my robotic mitral valve repair. I'm feeling surprisingly calm considering what I'm facing. Maybe it's because I have faith in the skills of the doctors and nurses that I've chosen for my care. It's been almost 2 years to the day that I joined this site. Good luck to all on the same journey
I wonder why The Mayo Clinic isn't emphasized on this site
Journal posted on March 5, 2017
You would think that an institution ranked second nationally behind Cleveland Clinic for heart valve surgery would be more prominent and have doctor interviews and profiles showing. Even Abbott Northwestern in Minneapolis is profiled and they're not even in the top 30 nationally (I think they're ranked 32nd). Do valve centers have to pay to be profiled on this site? You would think that an institution as revered and famous as "The Mayo Clinic" would come up more often in hospital and surgeon searches in this site. What gives?
In about 7 days, my significant other and I will be heading off to Rochester MN for my Mitral Valve repair. The three months that have gone by since scheduling the date of March 15th have flown by, yet the waiting seems to make time stand still (funny how that works) I ferl very calm yet somewhat fearful of the unkown. I've never had major surgery before and still have no symptoms. Hard to fathom subjecting myself to this, but echoes don't lie. I know this is necessary to preserve my life and hopefully allow me to have a long and healthy next chapter in my life. Looking forward to comparing notes with other heart warriors on the same path
This was my workout at Kettlebell last night, starting with 12 snatches on the minute for 10 minutes! I used a 12 and 14 Kilo bell. My training weight is 18 K. Keeping it light due to pending surgery in 10 days
My heart rate after my Kettlbell session this morning
About 2 weeks until surgery
Journal posted on February 24, 2017
Starting to get real now. My surgery date is March 15th and the "FUD" (fear uncertainty and doubt) is starting to build. I know I'll be in good hands at Mayo Rochester but it's still my first major surgery (other than having my vericose veins removed while still in high school in 1974). How do other heart warriors deal with the anxiety just prior to surgery?
In about 30 days, I'll be heading off to Mayo Rochester for robotic surgery to (hopefully) repair my leaking mitral valve. I've been on vacation in Florida for the last 8 days and have felt great the entire time. My average resting heart rate is 55 and my max was about 140. My 60th birthday will be on the 14th ( next Tuesday), hard to believe I need OHS! This is going to be an interesting year. I'll probably be posting more often as the date comes closer
I spoke with my cousin in Atlanta who's husband had AVR replacement and an aneurism repair at a local hospital about 20 minutes from their home. About 2 months after being discharged, he developed a pleural effusion that needed to be drained. He was able to go back to his provider to get it taken care of.
My surgery is scheduled at Mayo Rochester, about 90 miles from my home. If this happens to me (it occurs in about 20% of OHS patients) going back to Mayo may not be feasible.
For those of you that travelled out of state or more than 90 minutes for your procedure and developed some kind of complication, what did you do? Did you go back to your original provider or get it taken care of close to home?
I came home to find a large envelope in my mailbox. It had an education booklet on minimally invasive and robotic surgery, my pre-op schedule for the day before and some presurgery instructions. We're now making hotel reservations for the night before and for the few days after for my significant other while I lie in ICU and stepdown.
Starting to get more real. Hopefully I'll hold it together for the next few months. In the meantime I'll keep doing my Kettlebell 3 times per week to maintain my strength and core. (Our routine tonight included a 10 minute 1 arm swing sequence...10 right 10 left every 30 seconds with a 24 Kilo bell).
When I called the billing office to get an estimate of charges, they said around $3600 for the CT and $320 for the surgical consult. The actual charges were over $8000! The charges include $3389 for angio of Abdomen, $3030 for CT of heart, $1298 for angio "post processing,$323 for contrast and $320 for consult. I may be a newbie but this seems excesssive to me. Thank god for insurance. Do these charges seem high or is this typical?
I'm still trying to find another patient that had a robotic mitral repair done at Mayo Rochester. I've read several accounts in this site of patients having a robotic mitral repair done at Cleveland Clinic and not all of them were very flattering. Several reported significant pain for months after discharge and seemed to be met with indifference from CC docs when they reported their concerns. I also think that they do it differently at CC than at Mayo. CC patients report 6 incisions where Mayo uses 3. The surgeon I'm working with said that most of their robotic mitral repair patients were discharged in about 3 days and back at work in 3-4 weeks. I would really like to corroborate that with an actual patient. Can anyone help me with this?