Jeff's Guestbook

Jeff V.  Hi Emily,

Olivia was 8 years-old when she had her MV replaced so there was really no choice in valve selection given her age. She is now 20. A repair was initially attempted but the surgeon was not happy with the result and ended up replacing with a St. Jude mechanical. Fortunately, her annular ring was dilated enough so she could support a "small" adult sized valve and will likely not require a replacement or repair for many years to come.

Olivia self tests her INR monthly with Alere INR home test equipment. Great program! The results are submitted monthly via phone/net and reviewed by her doctors. She knows what to do if she is running high or low and typically makes the adjustment with her meds before she gets the directions from her doctors. She rarely has to adjust and is consistently within therapeutic levels.

Olivia is very active. She spent the last year in Germany on an exchange with no problems maintaining her INR. She is now a college student in Wash., DC and has not yet had to deal with the pregnancy issue but she does hope to have children one day. There are ways a person with a mechanical valve can safely have a baby while on thinners through careful medication management. Obviously, this is a topic for discussion with your doctors. In the meantime, there was a very interesting patient success story on this topic posted last year (and below) that you may find interesting...

Let me know if you have any questions or would like to communicate directly with Olivia.

Jeff

Emily Rowley  Oh okay, she is only a year younger than me. Did her Surgeon say the repair wouldn't had given her the best long-term result?
That's great to hear she is doing well 😊
My Heart Specialist Team told me either pig's valve then replace after kids or mechanical valve which meant I couldn't have children.
I would like to communicate with Olivia, if that is okay with you and her.
Thank you Jeff.

Jeff V.  A repair is usually preferred when possible. Have you been given a percentage on the likelihood of a successful repair? Olivia's surgeon repaired her valve but when they took her off bypass to test the quality of the repair, the surgeon was not satisfied with the result. He believed that Olivia would need a second surgery for replacement in possibly 1 - 2 years and opted to replace the valve at that moment. So, she has had a mechanical valve for 12 years. 12 years ago, we were told that when she wanted to have children, she would likely need to have the mechanical replaced with a tissue valve... however - with medical advancements - it now appears that she can have children with the mechanical but under closely supervised conditions (similar to Shannon's story above). I think you are in Australia(?) so your options may be different and will need to be explored with your medical team. Feel free to contact Olivia direct if you have any questions: liv_valone@yahoo. com. Happy Holidays! Jeff

Bill Hendrickson  Jeff ,just met with Dr Pettersson,what a tremendous dept of application knowledge. Very interesting discourse between him and my RN wife about how different valves wear out and what happens at end of life and when reoperation is req'd. Bovine and pig valve leaflets operate quite differently in the aortic and mitral positions. As an engineer I would be interested in studying this topic in great detail.. I can't fathom the experience and knowledge Pettersson has .What a mental giant, great surgeon.

Jeff V.  Peter - I had my MV repaired and my AV was spared. I expected an AV replacement but the surgeon decided it still had some mileage. I am going to rehab orientation this Fri. and start on Mon. I was also curious about Fox's valve choice but it seems to be undisclosed. I know he had a stenotic BAV but I never did hear about his final choice. Regards - Jeff PS: I will wait until my doc gives me the OK to fire up the blower!

Jeff V.  Thanks for the update Terri! I have been curious about Cole's progress. It's been interesting to see several recent CC aortic repair surgeries. I take it that Cole's aortic valve was not stenotic but regurgitating. If Cole is up for an adventure tomorrow night, go to Little Italy for dinner. It is close by and nice to get out a little before your trek home. Good luck to you both and keep me updated on his progress. Why don't you join the community...? Take care and best wishes to you and Cole - Jeff

Jeff V.  Hi Terri, Having known Dr. Stewart for five years I have great confidence in his opinion and would follow his recommendations. He is keenly aware of each surgeons skillsets and makes his surgical recommendations based on what he feels is the best match to fix the problem. Frankly, I think it is the pick-of-the-litter when it comes to selecting a surgeon at CCF as they are all incredibly skilled. I am very thankful that I have Dr. Stewart in my corner. I expect that you and Cole will be very impressed by him. He's awesome! Do not be afraid to ask any questions or share any concerns with Dr. Stewart. In fact, this comment would apply to all personnel you meet as we did not encounter any difficult personalities. I would be very comfortable in Dr. Stewart's choice of Dr. Roselli for Cole's surgery. I felt so much better, anxiety wise, after I got to Cleveland and got settled in and completing my pre-op testing. You will probably feel much more confident and relaxed once you start the process and meet the doctors. I look forward to reading about Coleman's successful surgery and quick recovery. Regards - Jeff

Jeff V.  Bill, Let me know what details remain open and I will be happy to help where I can. Cleveland's Little Italy is 5 mins. east of the Clinic on Mayfield Rd. We went a few times and enjoyed Maxi's and Angelo's Nido... and the bakeries! Jeff

Jeff V.  Hi Bill, Dr. Pettersson is worth the wait. His experience and blessed hands are unsurpassed... in my opinion! I think it is unlikely that your MV performance will change quickly. Perhaps if your MV insufficiency was severe/critical I would be more concerned about waiting, but as you know... the progression of the problem is so slow you should be set for Jan. 29. My valve issues have been followed annually for 30 years. My MV regurgitation was moderate/severe in Sept. when my CCF cardiologist said he thought we should proceed. He assured me that it was not an emergency but indicated that I should have it done sometime in the next 3 months. I needed all 3 months to prepare and thank this website for bridging me from high anxiety to complete confidence. Like you, I waited and read patient blogs for a long time prior to joining. I normally would not participate in this type of public forum but I gained so much confidence and solace from HVS.com, I was compelled to join. Rest assured, Dr. Pettersson is a great choice for 2 valve surgery. I was in the hospital for 5 days following 3 days of pre-op testing. 2 days of pre-op is enough if you & CCF can make it happen. I stayed in Cleveland for 2 days after discharge and in hindsight, could have gone home, but wanted to stay in the area just in case any complications arose. I have been home for about 8 days and feel great. I think you are in better physical shape than me at the time of surgery and expect that you will have a similar outcome! Let me know if you have any more questions! Regards - Jeff V

Don LaPorte  Hi Jeff, I am scheduled for MV Repair surgery via robitic reapair by Dr. Gillinov at CC in eary February. I was concerned about traveling from Texas, and how long I should stay after surgery in case complications. Any other advice for a person coming from out of town or in general?

Jeff V.  Hi Don, My home is 2.5 hours from the Clinic and planned to stay in town for 2 days after surgery in case of complications. If I were coming from TX, I think I would plan on staying locally for 2 days max. post surgery. If you have complications that develop it should be no problem to extend at your hotel, however, you will of course have to deal with changing your flights. I would find out from Dr. Gillinov's office how long the "typical" hospital time is for a robotic repair. If it is 4-5 days, I would add 2 and book accordingly. I stayed at the Intercontinental Suites Hotel which is on campus and a 5 minute walk. Very convenient location and comfortable for up to 5 people with two separate rooms, kitchenette, large bath. The CCF rate is $155. per day if you book for 1 week min. (otherwise, I think the rate is $185.). Let me know if you have any other questions. Regards, Jeff

Don LaPorte  Thanks Jeff, appreciate the information. Figure good planning would be wise. Bringing ear plugs and eye mask was the other good tip for hospital stay I hear. Love hearing how well you are doing, and your optimism is contagious, so thank you.

Jeff V.  Kind of funny, I brought ear plugs, mask, I-pod, etc. but didn't end up using any of that stuff (except for my laptop!). Better to be prepared than to be wanting gear when you are in the ICU or step-down. I expect that Dr. G will do a great job for you and you will be impressed at how well you feel in the first 48 hours. When you awake in the ICU you will be connected to a pump that can deliver a pain med (Fentanyl) every 6 minutes. Only you can press the hand-held button for the pain med. I found that I would press the button, doze off and then wake in 15 mins. from being uncomfortable. It will be helpful if your wife manages your schedule and prompts you when it is time for more meds. By the way, Cleveland's Little Italy is only a 5-10 minute drive and is a good get-away for a relaxing dinner! Good luck - Jeff

Jeff V.  Hi Terri, Dr. Pettersson advised that the time to repair/replace a valve is 45 mins.-1 hr. per valve. Repair can take longer as my MV repair took approx. 1.5 hours as he had to do some extra work on my "sloppy" chordae on the anterior leaflet and install neochords and a Medtronic annuloplasty ring to improve my MV durability and to reduce leaflet stress. On the day of surgery, family members are given a beeper to keep them updated on progress. You will be told that surgery will likely be in the 4 - 6 hour range, however mine was about 2 hours total... so don't be shocked if you get buzzed early! The mitral valve repair is a VERY routine procedure at the Clinic. I was given a 90% chance for repair and was told my fix was involved but no problem. My MV residual regurgitation following surgery was classified as "trivial" (good). How old is Cole and who is his surgeon? Do you know the level of his aortic insufficiency? I was expecting an AV replacement but my surgeon determined that that my AV was in better shape than they thought and left it alone. He will do well and your trip from CA will be worth extra effort. Please call me anytime if you want to chat... my cell is 814-730-2204. Jeff

Jeff V.  Hi Terri, I live 2.5 hours from Cleveland. The return trip home took 3.25 hours because of a bad snowstorm. Aside from being a little stressed about the snow, I was very comfortable for the ride home and could have managed further travel with no problem. Heart patients are restricted from riding in the front seat for about 4 weeks unless you can disengage the airbag. I was surprised when I discovered that I could not manually shut the airbag off on the front passenger side of my 2014 Honda. I am familiar with flying from OH to CA and based on how I feel post surgery, think that your son will be able to comfortably make flight. When I am seated, lying down and even walking I really feel little to no discomfort. I feel a dull ache in the center of my chest if I am overactive or stretching the pain meds. but nothing close to being overwhelmed by discomfort. I won't be surprised if Coleman gets to the car in SFO and says he wants to keep going, thus avoiding any possible discomfort of getting in out of the car at the hotel, restaurant, etc. and prolonging the trip home. You might want to reserve the room just in case and see how he's feeling and cancel if he wants to continue. As far as staying in Cleveland after discharge, based on "my" experience, would be to stay in Cleveland for 2 days max. I know some patients leave the same day as discharge, but I think being from CA and staying a couple of days to get your bearings with a final close-out appt. is a good idea. 3 days would have been one day too many for me. Regarding the pain, the directions for my pain meds are to take 1-2 tablets every 6 hours as needed for moderate to severe post-op pain. I am currently only taking 1 every 12 hours and alternating with 650mg of Typenol. Everyone is different in how they manage the pain. The only point I am making is that I expected to be laid up in my recliner for a month and have yet to even sit in it since getting home!

  I too travelled home from the CC. A 5.5 hour drive, not including frequent stops and it was fine. Loaded up on medication and pillows. And Dr.Roselli was my surgeon and my daughter stayed at the Intercontinental suites which was very very close. She parked in the hospital parking garage as it was cheaper than the hotel parking charges and she just left the car there the whole time she and I were there. Plenty of places to eat in the hospital.

Jeff V.  Terri, I also did not meet my surgeon until the day before my surgery. However, I have had the benefit of meeting Dr. Stewart 6 times over 4 years. I have great trust in Dr. Stewart and followed his direction without a second thought. He has been a staff cardiologist at the Clinic for over 30 years and is an expert at knowing when to operate. Likewise, I believe his expertise at matching patient to surgeon is finely tuned! (If I am not mistaken, Dr. Roselli went to college with Adam Pick.) Give my regards to Coleman. Jeff V.

Jeff V.  Terri, I wanted to give you a hotel recommendation for your stay in Cleveland. We stayed at the Intercontinental Suites (8800 Euclid Ave.) which is about a block away from the Miller Heart Bldg. The suite set-up was ideal for me as we had different family and friends coming and going and staying with us so it was very convenient. There is one room with two full beds/TV/6-drawer dresser and another room with a fold-out couch, chair, kitchenette with sink/microwave/fridge/coffee maker. You will need silverware/plates. The bathroom is large with two rooms... a toilet/shower in one bath area and an adjacent room with a large sink/counter. One large closet. The CC room rate was $155/night if you stay a min. of 7 nights. There is a very convenient shuttle service which we used on bad weather days. There is mandatory hotel valet parking at $14/day with as many retrievals as necessary. There is a nice breakfast buffet but pricey. I only went once but my wife split her breakfasts up between the hotel and hospital. If you are not interested in the suite layout, there is an Intercontinental Hotel on the Campus with perhaps a 1-2 star higher rating. I was very happy with the suite set-up which can accommodate up to 5 people. The patient can break away and relax in private if necessary. The beds were comfortable and there were lots of pillows which came in very handy. Obviously, you can stay further away from the hospital if you want but from a convenience perspective, staying on campus cannot be beat!

Jeff V.  Hi Terri, I knew my aortic insufficiency was not significant but I fully expected a replacement and hoped for a MV repair. Though I was given a 90% chance to repair the MV I was skeptical based on an attempted repair of my daughter's MV here in Cleveland 11 years ago when she was 8. She is now 19, doing great and lives overseas with a mechanical valve (also installed in Cleveland). Your son will do great in Cleveland. I will be happy to talk to him or you anytime if you have any questions. Who is his surgeon? Regards, Jeff

Daniel Spurgeon  Hi Terri, hopefully your son will receive the same treatment I did during grand rounds while I was in the CVICU: "35 year old male status post aneurysm repair, no complications, let's move on to the next patient."

Jeff V.  Thanks Joan! Today sure has been a crazy one but I am relaxed and ready for an early morning! Take care.

Jeff V.  Alan-I've been seeing a cardiologist at CC for five years. On my last visit in Sept. when Dr. Wm. Stewart told me that it was "time", one of our many discussions was who would do the surgery. I was told that for an isolated repair or replacement, it really wouldn't matter which surgeon performed the procedure because they all have extraordinary skills and perform those procedures daily. His point was that any surgeon at CC could repair my mitral valve and replace my aortic valve, but because of my other problems including a mildly dilated ascending aorta (4.1cm) and mildly dilated left pulmonary artery he recommended Dr. Pettersson to address all concerns. Honestly, I couldn't choose and wanted my cardiologist with 30 years experience at the Clinic to choose for me. I don't think that we can go wrong with any surgeon in Cleveland. If you have not been to the Clinic yet, rest assured... it will surpass your expectations. I will follow your schedule and perhaps our paths will cross. Good luck!