Skipper's Journal

Thomas Brusstar  Sounds like a good report. I had ruptured chords on my mitral valve also. They didn't need to put in artificial ones, because the broken ones had been attached ... Read more

Thomas Brusstar  Sounds like a good report. I had ruptured chords on my mitral valve also. They didn't need to put in artificial ones, because the broken ones had been attached to the leaflet that they just removed anyway. Then they sew up the cut where they took out the bad actors and voila, tighter valve with fewer chords.

Susan Lynn  I also had to have chords repaired. I didn't have anything cut or removed, however. The annulplasty ring was sewn around my leaflets to close the gap and ... Read more

Susan Lynn  I also had to have chords repaired. I didn't have anything cut or removed, however. The annulplasty ring was sewn around my leaflets to close the gap and the broken chords were reattached. Good question to ask your surgeon.

Susan Lynn  Piece of cake! They're both very quick procedures. You probably won't remember either one. Enjoy the short naps and give yourself a big pat on the back ... Read more

Susan Lynn  Piece of cake! They're both very quick procedures. You probably won't remember either one. Enjoy the short naps and give yourself a big pat on the back for checking two action items off the pre-op list! You've got this, Skipper!

Beth Majerszky  Skipper - you’ll get through this. It’s a fairly quick procedure and does feel like a nice nap. Just know you’ll need to lie flat for several hours after ... Read more

Beth Majerszky  Skipper - you’ll get through this. It’s a fairly quick procedure and does feel like a nice nap. Just know you’ll need to lie flat for several hours after the procedure. I had an incredible nurse that helped with some pillows where needed to make me more comfortable. (I don’t usually sleep on my back, so it’s not a comfortable position for me.) Sending well wishes for a smooth morning.

Thomas Brusstar  If they can use the wrist for the angiogram, you don’t need to lie flat after. Your wrist will just have a big pressure bandage bracelet. I’m told big ... Read more

Thomas Brusstar  If they can use the wrist for the angiogram, you don’t need to lie flat after. Your wrist will just have a big pressure bandage bracelet. I’m told big vessels in the arm is the key, so men are more likely to get away with wrist entry. I didn’t need a TEE trans-esophageal echo, the regular external TTE trans-thoracic echo was good enough because — im not proud of this — my “flail” mitral valve predicament was so obvious the TTE images were fine. They knew what needed doing from a mile away.

Skipper Kagamaster  Well, I'm now home post-procedures. Hated every minute of it, but it really wasn't that bad. WAY better than I expected. I'll probably post a separate entry ... Read more

Skipper Kagamaster  Well, I'm now home post-procedures. Hated every minute of it, but it really wasn't that bad. WAY better than I expected. I'll probably post a separate entry for those doing Google searches on people's experiences.

Skipper Kagamaster  Thanks, Susan! I don't feel all that brave, but I did make it through. New year, new experiences, eh?
Mom, we'll be taking a bus to NYC. It's quicker and I ... Read more

Skipper Kagamaster  Thanks, Susan! I don't feel all that brave, but I did make it through. New year, new experiences, eh?
Mom, we'll be taking a bus to NYC. It's quicker and I don't have to worry about navigating the craziness of the city (I'll have to do that enough post recovery!). I'll update with how it goes.

Jennifer Winslow  I had my 2nd TEE this past Tuesday. They aren't too bad. They put you in a twilight. I was more awake this time then the first. The worst for me was gargling ... Read more

Jennifer Winslow  I had my 2nd TEE this past Tuesday. They aren't too bad. They put you in a twilight. I was more awake this time then the first. The worst for me was gargling with that gel numbing stuff prior to the test. I didn't have to do that last time (that I recall but it was 12 years ago). I haven't had a catherization yet but I suspect it's coming.

John O'Neill  I thought the TEE was a piece of cake. They've come along way with twilight anesthesia: I didn't feel or remember a thing during the procedure. When I came ... Read more

John O'Neill  I thought the TEE was a piece of cake. They've come along way with twilight anesthesia: I didn't feel or remember a thing during the procedure. When I came to, I wasn't groggy, but I felt like I'd had a couple beers.

Marie Myers  I was totally asleep, and remembered nothing of the TEE. Many anesthesia people use propofol for sedation like this, and there is no hangover. I was worried ... Read more

Marie Myers  I was totally asleep, and remembered nothing of the TEE. Many anesthesia people use propofol for sedation like this, and there is no hangover. I was worried about both the TEE and the cath, but they were both so much easier than I thought. I think you will be pleasantly surprised! Just tell the anesthesia team about your fears and bad experiences. They can really help.

Skipper Kagamaster  I'm not usually good at disclosing my fears to others; looks like I'll have to step outside that particular box on this one. I told my PCP about this and was ... Read more

Skipper Kagamaster  I'm not usually good at disclosing my fears to others; looks like I'll have to step outside that particular box on this one. I told my PCP about this and was given a prescription for Xanax if I wanted to use it, but Lord willing I'll be able to get my attitude adjusted and go through it without.

Jill Mullikin  Most likely it will feel like time travel. Granted, I’ve not had this done but was with Sebastian during his entire journey. He was 19 when he was diagnosed ... Read more

Jill Mullikin  Most likely it will feel like time travel. Granted, I’ve not had this done but was with Sebastian during his entire journey. He was 19 when he was diagnosed with severe regurgitation. He was pretty wound up for this one and they called in anesthesia’s. He doesn’t remember any of it.

Thomas Brusstar  The catheterization is easy. They were able to use my right wrist; but if they can't get a good superhighway they'll use a groin vessel. They sedate lightly, ... Read more

Thomas Brusstar  The catheterization is easy. They were able to use my right wrist; but if they can't get a good superhighway they'll use a groin vessel. They sedate lightly, so I was just kind of dazed with no sense of time, but I was awake. I could see the live TV showing the dye illuminating the arteries as they injected. I couldn't feel anything going up my arm or anything. I've donated blood a lot, so I'm find just sitting still while they insert the needle; but it all happens fast. For all the prep and shaving for the cath, it's over super-fast. Then you just have to chill for a long time while they make sure the entry site is properly healing. I couldn't eat all day until the procedure, then it was at like 1:00 -- I was starving afterwards. They gave me some fried chicken, which wasn't great because you kind of need two hands for fried chicken and one hand had the big pressure bandage on it. But the cath is no big deal, it just takes a long time. No pain.

Skipper Kagamaster  Thank you both for making me feel a good deal better about this. Doctors and medical procedures are basically my kryptonite. Baby isn't due until August, so ... Read more

Skipper Kagamaster  Thank you both for making me feel a good deal better about this. Doctors and medical procedures are basically my kryptonite. Baby isn't due until August, so for now the only pictures are blurry ulrtasounds full of noise.

Ann-Marie Dassler  Both of those procedures were easy for me; I told them I was scared; the doctor sat down with me and reassured me, and then the nurse did the same. Every step ... Read more

Ann-Marie Dassler  Both of those procedures were easy for me; I told them I was scared; the doctor sat down with me and reassured me, and then the nurse did the same. Every step that I was still awake for was explained prior to anyone touching me. A perfectly orchestrated experience.

Thomas Brusstar  One surgical prep note for men on the topic of "manscaping:" they put electrodes and pipes and tape plenty of places, and need to be prepared to put that stuff ... Read more

Thomas Brusstar  One surgical prep note for men on the topic of "manscaping:" they put electrodes and pipes and tape plenty of places, and need to be prepared to put that stuff everywhere else. So for the cath, they plan to do the wrist, but beforehand they shave the groin area in case they need to use the femoral vessels or whatever. For the real surgery, they put tape and other stuff on arms and every square inch of the chest and abdomen, plus they shaved the inside of my legs in case they decided to use some grafts of veins (even though they did NOT plan any bypasses for me, and didn't do any, they seem to ready everything just in case). They will shave the right areas in the prep; but because I have electric clippers to tend my own hair anyhow, I took off arm and chest hair and some groin hair near the femoral veins/ arteries beforehand. Maybe I just felt like I was helping, but my tip would be to do some pre-clipping if convenient, because that's a time-consuming and messy task lying on a hospital bed.

I didn't think they'd shave the inside of my legs, but they did, so I discovered a shaved landing strip all down my legs afterwards -- I clipped the rest of the leg hair afterward so I didn't feel quite so much like Pepe LePew. It all grows back fast.

Skipper Kagamaster  Good tip on manscaping; I'm a veritable forest, so it's a non-trivial issue. Ran into that with my EKG with assistants who seemed to have never encountered ... Read more

Skipper Kagamaster  Good tip on manscaping; I'm a veritable forest, so it's a non-trivial issue. Ran into that with my EKG with assistants who seemed to have never encountered chest hair before. It was a very awkward experience.

Mike Roskowinski  Hey Skipper your story is very similar to mine and so many here. I found out last February about my condition. I turned 40 in December and I remembered that ... Read more

Mike Roskowinski  Hey Skipper your story is very similar to mine and so many here. I found out last February about my condition. I turned 40 in December and I remembered that when I was a kid I had an echo. Decided to go to the doctor and ask to have one done again. I did all the physical and wellness checks that our company likes us to get done. Found out I had a monocuspid valve and an aneurysm of 5.3. I had surgery in May. I understand your feeling of going from 0-100 in 10 seconds. It really left me some sleepless nights and fears throughout the day. I found this site and the many people on here that were dealing with the same as me and it helped a ton. If you have questions feel free to ask we are all out here to help answer them. As for surgery I would try to get it done as soon as you can.

Jeffrey Dyer  Yeah...these things take us by surprise when we're "asymptomatic"...which means we've gone downhill so slowly that we don't realize that we're out of breath ... Read more

Jeffrey Dyer  Yeah...these things take us by surprise when we're "asymptomatic"...which means we've gone downhill so slowly that we don't realize that we're out of breath because of our heart problem, not because we're getting older...etc. Don't overload on info...it'll play with your brain. I finally had to stop watching Youtube videos...they consumed me. And I can tell you, the experience of surgery and recovery will be nothing like you think. Spend your energy doing things with your family. Also, I would encourage you to get into the best shape you can before you have your surgery. It'll speed your recovery. And ask every question you have. Prayers...

Skipper Kagamaster  Thanks, all! The advise to not overload on information is something I'm going to take very seriously; I want to be informed and make good decisions, but sometimes ... Read more

Skipper Kagamaster  Thanks, all! The advise to not overload on information is something I'm going to take very seriously; I want to be informed and make good decisions, but sometimes I suppose enough information is enough. When it comes to exercise, is there anything I should avoid right now? I've been taking it easy because I now feel the symptoms, but I've been wanting to lift and do some HIIT type work. Too stressful on the heart, or is that OK pre surgery?

Jeffrey Dyer  I'd talk with your Dr...I'm a tennis player...I was told not to play competitively (Yeah, right!), but to work on cardio. Get your heart rate up. What I noticed ... Read more

Jeffrey Dyer  I'd talk with your Dr...I'm a tennis player...I was told not to play competitively (Yeah, right!), but to work on cardio. Get your heart rate up. What I noticed was that when I played tennis my BP would come down...which was exactly what I was needing. I didn't see if you had an aneurysm or not. I did and that's what I needed to protect...didn't want to increase pressure which could burst or dissect the aneurysm.

Skipper Kagamaster  No aneurysm; just good ol' mitral valve prolapse on the posterior leaflet. I asked the cardiologist who did the diagnosis, but he was less than helpful (I'm ... Read more

Skipper Kagamaster  No aneurysm; just good ol' mitral valve prolapse on the posterior leaflet. I asked the cardiologist who did the diagnosis, but he was less than helpful (I'm currently also looking for a cardiologist, but may have found a local one). I asked the diagnosis cardiologist if I could lift weights, and he just said, "... sure ...". He didn't really want to talk over things with me, which was a bit disappointing; but that's why I'm looking for a cardiologist! There's another doc in the practise who I really liked (guy doing my catheter on Wednesday); I might reach out to him. In the meantime, I'll keep on doing my usual walking the dog, walks with my pregnant wife, and keeping up with my seven year old (so, a little running, climbing, biking, and nerf-sword fighting).

Thomas Brusstar  Welcome, Skipper. Sorry you're here, but you've come to the right place. I knew since I was 20 that I had a mitral valve prolapse, and I had an echo every ... Read more

Thomas Brusstar  Welcome, Skipper. Sorry you're here, but you've come to the right place. I knew since I was 20 that I had a mitral valve prolapse, and I had an echo every couple years since I was like 40 to watch it. Then at 54 one of my posterior leaflets (I think P2) went rogue and became a "flail leaflet," along with some ruptured chordae that had been holding things together. So it went misdiagnosed/ undiagnosed first as pneumonia (why the shortness of breath, coughing, and deep chest tightness?), but upon echo it was clearly repair surgery time. I also had a severely enlarged left atrium as a result, which you say you have.

I see your guy is Dr. Robotic Surgery. I cannot evaluate the pros and cons of robotic vs. open, but my surgeon in Chicago is one of the great mitral valve surgeons (McCarthy), and he preferred open heart. It gives him better access / vision and flexibility to do what he needs, and he says he actually cuts / damages fewer muscles etc. by just going in through the midline of the sternum, where nobody has any muscles. He says less pain. I only know my experience. I was on plain tylenol 48 hours after surgery, so not a big deal. So up to you, but my open heart procedure was easy: I went in Tuesday and was at home for dinner Friday night.

You won't be lifting any babies for a while, though, I'm afraid. Like 90 days? (My son was 13 when I had surgery, so lifting him was luckily off the table. He was just my recovery walk companion.) Running will be fine by 90 days post, I would guess climbing not so much. Nerf probably fine!

On exercise, I think being fit is good, as you'll need fitness to recuperate. You don't have anything particularly fragile (like an aneurysm) going on; and your enlarged left atrium isn't, as I understand it, going to be harmed by some increased heartrate from exercise. Definitely find a cardiologist whom you like. Your case is super-routine, but the docs should give you all the time you want and make you feel special.

My left atrium volume was like 180 pre-surgery (instead of normal more like 45), so totally ballooned up. My "flail" condition probably persisted for a year before identified and surgery done, so my heart had to cope with that for a long time, explaining the severe dilation. I hope yours isn't that bad. The good news is that by the end of the surgery, still passed out on the table, it was like 90. It's down to 70 now (18 months later), and probably done shrinking. Closer to normal. So your heart will recover immediately! At your young age, get it done as soon as possible. The faster your heart muscles can start to heal and re-model, the better. The backpressure up into my lungs was getting severe, and that pulmonary hypertension is bad.

I was skiing out west again just now, and I even think I was better at altitude (10,000 feet) this year than last, so 18 months vs. 6 months post. So my heart has gotten better.

You won't miss your "good ol' MVP" at all. Keep us posted on your questions/ plans!

Susan Lynn  Skipper - After weighing all the pros and cons, I opted for a mini-thoracotomy from Dr. Scott Goldman at Lankenau's Heart Pavilion in Wynnewood- I think that's ... Read more

Susan Lynn  Skipper - After weighing all the pros and cons, I opted for a mini-thoracotomy from Dr. Scott Goldman at Lankenau's Heart Pavilion in Wynnewood- I think that's pretty close (50 miles or so) to you down the ole' Pennsylvania Turnpike (construction notwithstanding! 😉). Definitely check out his YouTube video. Call Samantha at his office - she'll answer any questions you have. You can tell her Susan sent you!
Go to as many consultations as necessary - confidence going into surgery has everything to do with your comfort level with your surgeon, nursing staff, and facility. They'll do the work - you'll enjoy the one minute nap.
Best of luck!

Skipper Kagamaster  Thomas: thank you for your testimonial! It really helps to hear others who have gone through similar things. It's possible that I won't be a candidate for robotic ... Read more

Skipper Kagamaster  Thomas: thank you for your testimonial! It really helps to hear others who have gone through similar things. It's possible that I won't be a candidate for robotic surgery, so it's very encouraging to see someone have such great success with a traditional sternotomy. I'll definitely keep that in mind when weighing options.

Susan/Jill: We've had Lankenau recommended to us from a few friends of the family; definitely on our radar. Lord willing we'll find out where the surgery is to be done in a matter of two weeks or less.

Julie M  Almost one year ago (January 16), I was where you are, Skipper. Well, I'd known for 40 years that I had mitral valve prolapse with some regurgitation, and had ... Read more

Julie M  Almost one year ago (January 16), I was where you are, Skipper. Well, I'd known for 40 years that I had mitral valve prolapse with some regurgitation, and had recurring symptoms (arrhythmia), but was shocked to learn how things had deteriorated and that I needed OHS to replace the mitral valve and repair the tricuspid. Also LAE. At 67, I always considered myself a "medical minimalist" .... No doctors unless absolutely necessary, etc. Never had even minor surgery or been hospitalized. (When I go, I go big, apparently). I had the surgery on April 23 ... Waiting a bit gave me time to accept the situation and prepare for the long recovery. So very thankful for supportive family who came from out of state to help for the first few weeks (and amazing friends who helped cover my lost wages). Most importantly, put your trust in God... Realizing it's all in His hands regardless of outcome, I pretty much put myself on autopilot and with every step, was in a "Just do it" mode. As others will tell you, the waiting is the worst.

Be patient especially during initial recovery weeks. You'll really see your progress in retrospect, though I've learned eight months out, it's still a process. I'm much older than you but oh how far I've come! When they said I could mow my lawn after only six weeks, I was surprised but chomping at the bit to get out and do it. Took it slow, took more breaks, but felt so grateful.

You may develop A-fib post-op; I did, and was a bit discouraged that it took months to completely resolve but never gave up hope that it would, and it did. It's no surprise if the heart is irritable after such an ordeal! It's going to be somewhat different for everyone. but listen to your body, respect your limitations while you recover, and be thankful even through bumps in the road. You'll really note the difference in how you feel. I knew for years prior to surgery that I was far more tired than seemed "normal," and finally learned why. Since the surgery, the difference has been noteworthy, more so with passing time. You will be pleasantly surprised!

Prayers for smooth recovery... God bless. Jehovah Rapha! He is our Healer.

Skipper Kagamaster  Thank you for sharing your journey, Julie! It's sometimes so hard when going through things to see any progress. When I lived in Colorado, we used to love to ... Read more

Skipper Kagamaster  Thank you for sharing your journey, Julie! It's sometimes so hard when going through things to see any progress. When I lived in Colorado, we used to love to go on hikes almost every weekend. Often you'd plod on and on, looking in front of you, and feel like you were getting nowhere. But when you turned around, you'd find that you gained 1000' in elevation! The steps are always small, but put enough together and you can climb mountains. Good for me to remember; thank you for the reminder! The post-op recovery has me a bit intimidated at this point, and I don't even have a surgery date. God is good, and I need to trust that He'll carry me and my family through.