Kim's Guestbook

Judith Collins  9 weeks post op for AVR and feeling great. Started cardio rehab last week and already up to 1 hour work out. Slow but getting stronger. Had echo 2 weeks ago and got good post op results. I am very blessed. God has answered my prayers.

Kim Schurman  I chose my surgeon, Dr. Svensson, due to his credentials and since he is a pioneer in the minimally invasive surgery and sent all the paperwork over to his office for record review. His office contacted me within a week to make an appt to meet him, a cardiologist, and to get repeat imaging which included CT, EKG, CXR, and 2D ECHO. Unfortunately i needed surgery sooner then anticipated and i returned 2 months later (I was waiting for summer due to work schedule) for him to perform my surgery. I have no regrets with my choice and would go back to him if i needed any further heart surgery. I hope that answers your questions. Feel free to contact me with any other Qs.

Sonny Abbasi  I sent my paperwork to Cleveland (did aortic valve replacement two weeks to the day today--due to bicuspid aortic valve) and they assigned a doctor. I got Dr. Douglas Johnston who was outstanding. First make sure they have all your paperwork. A program administrator checks to make sure you have sent everything. A few days later a cardiac nurse will call you once the doctor has reviewed the file. I was happy with anybody I would get with Cleveland because they were the best in the world. Two local surgeons told me I didn't need to go there because I was not high risk. I said I am going there precisely because they see high risk people all the time. If you get Johnston, I wholeheartedly refer him. Adam Pick, the founder of this board, knows him and he put me in touch with him prior to me making my decision. Otherwise, you would meet the surgeon the day before the surgery. Read my review on Dr. Johnston. You have to believe in the Cleveland Clinic system, that is they are the best in the world because they have a process. I can say I was very happy thus far (two weeks afterwards). The rest remains a prologue. I was so impressed with them that when I posted my picture on Facebook, my tag for Dr. Johnston and Cleveland Clinic was #bestintheworldforareason. Meaning there is a reason they are number in Cardiac Care for 21 straight years in the US by extension, the World. Basically, my motto was if you need heart surgery you go to Cleveland; if you need special forces you get Seal Team 6. In short, this is what they do as a team--but you have to believe in their team approach i.e. each person has their part so you may not get as much face time with the surgeon. But yes, worst case you will meet them the day before surgery and best case, Adam Pick will know the surgeon.

Ihn Kim  Thanks Kim and Sonny!!! Your kind answer means a lot to me. BTW, how are you maintaining contact with the surgeon after you come back home? I would guess there will be times that you want to ask questions directly to the surgeon who touched your heart after the surgery.. Also, I read it's usual to schedule a post surgery check-up appointment with the surgeon after 1 month. How many trips does a patient need to make back to CC after the surgery? Did you feel it was quite safe to take a flight after the surgery?

Thanks, and here goes my prayer for your eventless recovery.

Sonny Abbasi  Inh Kim, I sent a thank you note to Dr. Johnston and he responded to my email saying to let him know off any follow up issues. He also stopped by my hospital room after a full day of surgery to personally check on me. I can't say that is the norm per se at Cleveland Clinic but it was a nice personal touch on his part. They have a toll free number where the cardiac nurse triages the issue. You also follow up with your primary care physician to check on basic stuff like wound healing etc. If you really want to talk to the doctor, I am sure they will oblige but honestly, despite Dr. Johnston's kind gestures, I haven't felt the need. My mother is a physician and she was pushing me to use a local surgeon because of follow up. My uncle, a cardiologist, also suggested the same. When I was done with Cleveland, they both changed their tune very quickly. As my uncle said, there is not a better place in the world you can go to. He quickly started deferring to their advice at Cleveland, something he was not doing with the local cardiologists.

I am going back to Cleveland for a 5-6 week check up but that is with the Cardiologist, who met with up there, Dr. Stephens, and really liked as well. To be clear that is an option not an obligation. I chose to do that because the local cardiologist's echocardiogram technician was not as detailed or thorough as Cleveland. Dr. Stephens was thinking of many more angles than the local cardiologist.

They have an optional two day check up with a nurse practicioner two days after hospital discharge. This again is an option, but recommended for out of town guests. I waited for that and would recommend the same.

Long story short, you won't need follow up with the surgeon generally as the check ins will be with others. Dr. Johnston did tell me the biggest thing they need to adjust is medications post-op e.g. they put me on a beta blocker which they upped the dosage of during the hospital stay.

So basically, you don't ever have to go back to Cleveland again but given the service I received, I am choosing to go back to handle my other cardiological needs. My uncle that is a cardiologist said that doctors in LA that needed heart surgery that he knows went to Cleveland Clinic for their procedures. You should have seen me with my Mom--after the procedure I was like so you still think I should have gone locally. She was like no way. She saw that they were on a whole different level. As I told Dr. Johnston, it was like NFL football versus High school Football back home. I saw that first hand with the echo technicians. They have the research to back up their conclusions.

If you can afford the hotel stay, there is no doubt in my mind whether somebody should go to Cleveland. The only complication was the inability to come home sooner i.e. sleeping in my own bed (or I should say recliner as you will not be able to sleep in a bed for a week at least if my experience is any indication).

Anything else feel free to call me. My personal email is washingtondclawyer@yahoo.com. If you email me there, I will give you personal cell.

Sonny Abbasi  Sorry on the flight back it was no issue at all--up and down in 1 hour (Cleveland to Washington DC Area). People fly in from Abu Dhabi and Dubai for heart surgery at Cleveland. I would do the two day post-release check out with the nurse practicioner.

Jean Raber  I've been following this conversation with interest, as I'm about four hours from Cleveland by car. Thanks to Ihn for asking the questions, and to Sonny for being so generous with info!

Kim Schurman  My surgeon said he didnt have to see me again unless i had problems and i was given a phone number to call if i had any questions or issues as well since you will have some new sensations in your chest after surgery. I also stayed about a week extra in a close hotel after i got out of the hospital and met with the nurse for an outpatient check up to make sure there were no hitches since i live in Florida. No issues flying back home- just move your legs/walk around every hour to avoid blood clots. The surgeon told me to f/u with cardiologist and pcp at home and gave me the name of a cardiologist at CC in Westin, FL that trained under him if i chose to see them which i will yearly from now on (i was previously a Shands hospital patient).

Autumn Griffin  I am debating if I should see a cardiologist in Canton, Ohio or just go to Cleveland Clinic an hour away. After reading all these comments I guess I really shouldn't debate it. I already go to the Cleveland Clinic for my rheumatologist. But my insurance doesn't like to pay out of network so I thought I would see what the cardiologist in my area said first. I have to rethink it now. You all have such high praise for the clinic. My niece had a heart transplant done there twice once when she was two and once again last December when she was 13. I knew they were awesome for her. I really should think about it more.

Kim Schurman  Thanks and the I wish you the best with your upcoming surgery. If you have any other Qs regarding the surgery please ask. Everyone is here to help you on this site :)

Ericka Carlson  It barely hurt at all when they took mine out, it actually felt really good to finally have them gone, I would not worry about that event at all. It's a few seconds and it's over. :)

Paige Baitinger  Thank you Ericka, that helps- I've been panicking about so many aspects of this - the waiting is dragging it out.... But seeing your words- I feel better :-)

Kim Schurman  The surgery was prompted by both severe aortic regurgitation and thoracic aneurysm actually since everything worsened over the past year. I also found out that I had a rare unicuspid valve (which was never seen on imaging, kept being called bicuspid) which usually needs sooner (20 years earlier) surgery than the bicuspid. Hopefully you have more waiting time on your side but just make sure to get repeat imaging every 6 months to monitor.

Greg Johnson  My experience also confirms CC's. Northwestern doctors also would not perform this surgery with a mini-sternotomy. I would conclude that if two of the most prominent and experienced heart surgery clinics don't want to attempt this complex surgery with restricted access then I would also not want that. The risk / reward ratio is not good. Get the best operation for long term health that you can. An additional inch or two of scar and (maybe) a week or two of recovery are nothing in the whole scheme of things. If they have to change their technique in the middle of the operation, it adds a level of complication that is just not worth it. In my opinion.

Kim Schurman  I'm not sure what type of patch was used on my aorta- it is not in in my copy of the medical records and I was more concerned about my mechanical valve. Dr. Svensson in Ohio is a pioneer of the technique and he done a large portion of these procedures (more than any of the other surgeons at that facility) and I trust him fully with his decisions.

Kim Schurman  I was also not as concerned with how the scar looked but with the better recovery, less complications, and less pain post op :)

Kim Schurman  Each patient is different and the surgeon takes that into account when deciding what the safest technique is for each person. You have to have trust in your surgeon and come to a mutual decision about what is right for you.

Greg Johnson  Kim, absolutely you are 100% correct and I completely agree. I was only commenting because there are some who are searching out doctors because they perform the mini-sternotomy. There are risks with this procedure that should be understood and accepted and discussed with the Dr. beforehand.

Mary K  Hi Kim, sending all good wishes to you.

Had my cath today, all clear no bypasses needed.

Hope we can meet next week. :)

Kim Schurman  Hello! Just had my cath done and my surgery is scheduled for Thursday. Biggest thing I'm worried about is them pulling tubes out (drainage etc). How did that go for you? Did it hurt really bad? Did they make you walk around with them? Thanks!
Kim

Jeff Offermann  I wouldn't worry about getting the assortment of tubes pulled after surgery. For most of them pulling them didn't even get my attention. I just kept doing what i was doing, talking, reading, watching tv, I had one chest tube that had to stay in for over 8 days, collapsed lung. That one did smart when pulled but again not bad at all. Before it was pulled i thought it going to really hurt because it was in so long and it didn't. Only hurt for a moment. The first chest tube pulled after a normal 3 days didn't hurt again just felt weird. What did hurt was snugging up the sutures after they pull a chest tube.

Mary K  Hi Kim I am having my cath done tomorrow. How long did you have to lie there after it was done? How are you feeling now.

Donna Gavin  The tubes come out fast. They don't hurt while they're in. Just talk to the doctor as he takes them out.

Jeff Lashins  I don't really remember the tubes getting pulled out to be honest. It probably was on the second day and I was really drugged. No pain at all. The tubes are an insignificant detail of the surgery for most people I think.

Kim Schurman  Mary- I was told to lie with my head down and keep my leg straight for about 3 hrs. No pain just some irritation mild where they put the plug in my femoral artery. All that worry for nothing! Good luck with your procedure!

Kim Schurman  I decided on the mechanical aortic valve since there is no way that I am going to repeat this surgery every 10 yrs. They say also online that the more active you are, the sooner it wears out as well for the tissue valve... Those are reasons enough for me to deal with warfarin which really isn't a big deal if it is adjusted correctly. I wish you the best with the decision you ultimately make and your surgery :)

Linda Wiebe  Hi Kim, I had my mitral valve replacement on 4/15/15 and the hardest part for me has been the lack of energy. The pain is controllable but the shortness of breath and lack of energy is not. You will be glad and relieved when the surgery is over and you are in recovery. Thinking of you. linda

Linda Wiebe  Kim I forgot to tell you the "I love Comfort" Sports bra has been a wonderful help in controlling the pain along with the pain pills. If you decide to get several, make sure you are allowing for swelling as there will be water wt. gain. I gained about 23 lbs. so glad I got the bras 2 sizes to big. They are still not too big and comfortable. I just hook the bottom 3 hooks which gives me some room, yet support. linda

Jeff Offermann  For me the pain wasn't too bad. In the hospital the pain meds worked well and kept me out of pain. Is there pain, yes, but it wasn't near as bad as I thought it would be.

Kim Schurman  Did the surgeon do a minimally invasive incision on you or the full Monty? He is doing only a 3-4" incision on me...