New Member Questions for Cleveland Clinic Alums

[PegB]

Hi All! I feel like I already know everyone here since I've been hanging around for about 4 years! I've been in the waiting room with every 6 mo. echos for mitral regurgitation, and I'm finally up to a "4+ Severe". Everytime I had an echo and they would tell me that I could wait a little longer, I would feel like I just got a reprieve. I was first diagnosed back in 1970, so it's always been hanging over my head. No symptoms that I'm aware of, but I imagine that I have just compensated as I've aged (54 now). Since it's time to get this thing finally taken care of, I am planning to go to Cleveland Clinic for my surgery. I have had my TEE, and Heart Cath. done and I have sent the CD, and video and reports to Dr. Cosgrove at CC, as requested by my Drs. here. What I'm wondering is, is how long does it take now to get everything rolling? Dr. Cosgrove's ass't. Margie told me that he would review my films and then make a recommendation and would call me and my Dr. It's been 10 days since they received the reports, and I don't know if I should be caling them. I DON'T want to make a pest of myself, and get them annoyed with me! If any of you CC alumni could tell me what to expect as far as timing I would sure appreciate it. I am ready to do whatever they request of me, but don't know if they have a 6 mo. waiting list or whatever.
Thanks for any help. You all are the BEST! I will be coming up with many more questions as I get closer, although I already feel so prepared from following everyone's progress here.

Peg

Waiting room for mitral valve repair at Cleveland Clinic

 

[Liz]

Welcome!

Welcome!

Hi Peg - Welcome to VR.com, so glad that you found you have added your voice to this great support group! I'm not a CC alum so I can't answer your specific question, but I encourage you to go ahead and make the calls to get your questions answered. I am the type of person who always feels better the more info I have, so before surgery I made lists of questions and as many phone calls as it took to get the questions answered. I also went to the hospital a couple times to see exactly where I would go into surgery, where I would be in recovery, where my family would be waiting, etc. I asked the hospital staff questions. All of it helped me feel more comfortable and prepared.

So glad that your valve problem is getting addressed before your heart is damaged, and I'm sure you know that your medical team is one of the best in the country - good for you!

Looking forward to getting to know you better,
Liz

 

[Kate]

Hi Peg!

I had my aortic valve replaced and aortic aneursym corrected at the Cleveland Clinic in September. The good news is there isn't a six month waiting period. The bad news is it sure felt like six months while I was waiting! To be honest, I don't quite remember anymore how long I waited to hear back from the surgeon, but it was two or three weeks. Like you, I didn't want to be a pest but also REALLY wanted to hear. I expected they'd call to schedule an appointment for me to meet with him, discuss plans and then schedule the surgery, but it wasn't like that at all. One night at around 8pm, I got a call from the nurse who basically said - "Yup, he wants to operate, this is the date for the surgery, do you have any questions?" That was a bit of a shock, but she was very nice, answered all my questions, and, during my pre-testing I did have a chance to talk to the surgeon at length (Lars Svennson, not your guy).

Anyway, the waiting is really hard and I hope you hear soon. However, I was extremely impressed with the care I received at Cleveland Clinic. Seems like they have a nurse for every patient there - I never waited for anything! If you have any other questions, please feel free to ask. Best, Kate

 

[Ross]

Give Toby 14 days and if you've heard nothing then, call Margie again. They do a tremendous volume up there, so it does take a little time, but shouldn't be any longer then this.

 

[MikeHeim]

I'm not a CC alum, but I had the same experience at UCLA. I had the TEE and Angiogram completed and the tapes were sent to UCLA. I didn't hear anything for about two weeks, which I think was probably the worst part of the waiting process. I was given a similar answer that the surgeon was not able to take on any additional patients at the time, and I would have to wait for an opening.

The bright side is - at least your surgeon is in demand!

 

[Georgia]

Welcome, Peg! Sounds like you've got everything under control. Also glad you decided to join us.

 

[aussiemember]

Welcome Peg - So glad you decided to join us. Sounds like you have a good team on your side and that you are well prepared. Just a quick question - have you been having 6 months echos since 1970 and what was your level of regurgitation back then?? I'm currently a few steps behind you so just interested about how things have gone for you?? - Jeanne

 

[PegB]

aussiemember

aussiemember

I think I've been in the "mild to moderate range" for at least 20 years now, and in the past year they added the stress echo which they still say I did good on just a month ago. The latest echo itself though had gone to the "severe" deterioration stage and they said it was time to get it fixed. In looking back over my records, I was at the "moderate to severe stage" about 3 years ago. They always let the surgery decision up to me though, and would tell me I should "think about picking a time". Well, there's always something (ANYTHING!!!) that conflicts with scheduling OHS, so I would say that I am well overdue by now. This time when I asked if I could wait for another 6 mos. he said "NO". I think I was always hoping to be very symptomatic and almost crawl into the hospital and they would fix me up and I'd be better than new. This is still hard to accept since I feel so good. They have always told me that by the time I developed symptoms, it was too late and the damage had already been done. I think just monitoring as they suggest is the best advice. Hopefully you might not get any worse, and won't ever need surgery. I always felt that by waiting as long as possible, the technology was getting better all the time, but that is also a big gamble if you end up with CHF. Try not to dwell on it between your check ups though.

Peg

 

[aussiemember]

Thanks So Much!!

Thanks So Much!!

Peg,

Thanks so much for your detailed answer. Until February this year I was always told that my mitral prolapse was a minor condition and would never need any attention so I've spent the last few months just getting used to the idea of OHS. That's where this site is so invaluable as it has taught me that there is life after heart surgery and that so many people do get through it albeit some with hiccups along the way. I totally know where you are coming from when talking about being symptomatic - the idea of having major surgery when you feel fine is just that much harder I think.

My cardiologist is also of the opinion that you need to have the surgery before symptoms develop as this is when permanent damage is occuring. He did say with me though that he is happy to leave it a bit longer than normal as I will need a replacement - not repair - due to the nature of where the valve is affected. So for the moment I'm sticking my head firmly in the sand - after all this really couldn't be happening to me???

All the best with your journey. Keep us updated along the way as to how things are going - hope you are able to get some answers from your doctors soon about the timing of things -

Jeanne

 

[Christina L]

Peg -

Peg -

I am a Cleveland alumni.

Dr. Cosgrove must have a new assistant. I spoke with a gal named Jeanne before and after my surgery. She was wonderful. Now there is a Margie?

Anyway, I read that your cardio says you will have a replacement instead of a repair. Both of my leaflets of my mitral valve - anterior and posterior were floppy and redundant. Don't underestimate the skills of Dr. Cosgrove. I wouldn't be surprised if you will hear back that Dr. Cosgrove is 95% sure (which he was with me) that he can repair your valve. That is why my cardio sent me to Cleveland - for Dr. Cosgrove and his brilliance.

I was having symptoms and didn't know it - thought it was allergies - waking up in the night (occasionally) short of breath. Now I can exercise for long periods without any shortness of breath at all but it does take my old heart a while to warm up when exercising (Melissa on this site gave a good explanation from her doctor for this post-surgery phenomenon). I do feel much better but, again, I was not having a lot of symptoms, just as you are not. If you have 4+ severe regurg, I would say it is definitely time for your surgery.

Best wishes to you!!

Christina L

 

[Christian]

My wife and I dealt with everyone in Dr. Cosgrove's office. You wouldn't be a pest if tyou politely call and ask for a status update after a ten day wait. We called them many times with questions before my wife's surgery.

You've definitely chosen the right team. I could rave about them all day, but I expect I'd be preaching to the choir. My wife had 4+ regurgitation (diagnosed in 1973) repaired by Dr. Cosgrove in November of 2005. Her recovery was short (about 4 weeks) and entirely complication-free, and her valve is functioning perfectly. It sometimes feels like it never happened.

 

[PegB]

Christina L

Christina L

Hi! Just wanted to let you know that Jeanne is still Dr. Cosgrove's Nurse Practice Manager. I haven't even been able to progress to her yet, as Margie is his Executive Assistant who seems to be doing the paper shuffling. I'll know I'm getting closer once I get Jeanne. I also wanted to tell you that your surgery progress over the past three years was what made me decide to go with CC. They started discussing surgery with me right at the time you were having your surgery. How I wished that mine was over and done with like yours. I have periodically checked in to see how you've been doing, and like you, my anxieties have anxieties, and I told myself that if you could do it, then I can do it. Thought you would like to know that even though some of us are lurking in the shadows in denial, your inspiration brings us forward. I hope that I will be able to come back on here after my surgery, and be as helpful as you have. In the meantime......I think I can, I think I can, I think I can!!!!
Peg

 

[Christina L]

Peg -

Peg -

Good to know that Jeanne is still with Dr. Cosgrove. You will find that she is just the nicest, most helpful person.

Yes, if (I) can go through open heart surgery, anyone can!

It truly, though, has been harder for me since the surgery. I think it is because I don't want to go through that ordeal again any time soon, although it truly was not that bad (in hindsight of course). I had a few glitches post surgery - low heart rate and low blood pressure and had to have a blood transfusion.

The hospital staff at Cleveland is superb. They know their stuff. And again, what can I say about Dr. Cosgrove? He is an absolute genius with a gift from God. Wish he would never grow old and retire, but....

I will be anxious to hear what Dr. Cosgrove has to say about your echo. I bet ya he can repair your valve.

Best wishes - you can do it!!

Christina L

 

[perkicar]

CCF Alums

CCF Alums

Hi Peg--
I had an aortic replacement done at CCF in May '05. I originally sent my TEE tapes and previous chart to them for Dr Lytle to review--and it took about 3 weeks for me to hear back from him. Their reco was to set up a visit there for them to do a full work up, at which time I found that my valve area was severe stenotic (0.6 cm2) but I wasn't having bad enough symptoms for them to rush me off to surgery. They called me two weeks later to schedule (they originally offered me a date the following week, which was a little too soon for me to get my life in order!), and basically let me choose the date, except that Dr Lytle doesn't operate every day (I expect Dr Cosgrove doesn't either since I'm sure he must have some days he has to do administrative stuff as head of the clinic). I went for the Tuesday after the Kentucky Derby since that worked great for the folks that were taking care of my dogs while I was laid up. (We had a race meet in Hamilton that weekend so they were going to be there to take them off my hands--and GeeBee came to encourage me!). I met Dr Lytle twice once at the workup and again in the pre-surgery visit a week before the big day. After that I saw the nurse practiciioner or the fellow. All my post surgery follow up visits have been with my cardiologist there, even when I got readmitted with the pericardial effusion, although I expect that Dr Lytle knew I was back in since it was just a week after I was initially discharged.

Sorry, got kind of wordy--I agree with Christian, I would call and just ask when you might be hearing something back. Since you're not there in town, it's not a simple hop in the car and go to the doctor, so everything takes more planning and coordination. Good luck! It's a fantastic place, I'm so glad I went there.

 

[Turkey Hunter]

Sorry, got kind of wordy--I agree with Christian, I would call and just ask when you might be hearing something back. Since you're not there in town, it's not a simple hop in the car and go to the doctor, so everything takes more planning and coordination. Good luck! It's a fantastic place, I'm so glad I went there.

I agree as well, you will not be a pest and you deserve to know where you stand.

I am also an alum. I have very high oppinion of almost everyone at CCF. It is a wonderfull place, of course, if you are like all of us here who had to find such a place that performs vr surgeries.

Fair warning however, if you havn't been there, expect a very, very large facility. It is the only hospital I have ever been to that made me feel like I was in an airport.

My story and experience there is a bit different. It was a very short time from my first appointment until my surgery. 2 Months to the day. They had all of my tests from NW Ohio sent there and needed more, I made many trips in those two months to CCF. Things moved fairly rapidly due to the aneurysm I had at the time.

Take care and welcome.

Ben

 

[BackDoc]

Cleveland Clinic

Cleveland Clinic

I can't speak for Cleveland Clinic Ohio, but so far my experience at the Cleveland Clinic, Weston Florida has been nothing less then excellent.

The first morning I called to make my appointment with a cardio-thoracic surgeon (Dr. Boyd), his scheduling secretary told me what tests he would require, and to please overnight them at least one day in advance of my appointment. I had all the tests performed in my local cardio's office as well as the local hospital.

Form the moment I walked into the Cleveland Hospital I was overwhelmed with good feelings from everyone.

Upon meeting with Dr. Boyd, he diplomatically informed me that one of the tests were not up to his/Cleveland Clinic standards, and that he would arrange for one of the Cleveland Clinic cardio's to contact me and schedule me to have the test repeated there. Within two days I received a telephone call from the office of Dr. Navarro (one of the Cleveland cardio's) and his secretary had me scheduled.

Within a week the results were faxed to my office, and I was informed that I would hear from Dr. Boyd's office. I was floored when Dr. Boyd called me personally--all I can say is, that the Cleveland Clinic Weston Florida is 1st class.

 

[dj/utvolsfan]

Hello!
I'm also a Cleveland Clinic alumni.....class of April, 2006. Being the number one heart institute in America (for the 12th year in a row!!), you know the case load has to be incredible. When I first went to CCF in early Feb., I was told surgery was needed asap. Went back home to WV expecting surgery to be scheduled within two weeks or so....the reality was more like 6 weeks later. If I remember correctly, it took about 2 weeks or so to get me in their system, but once the ball started rolling, there was a constant stream of communication and a very willing and friendly staff that answered every one of my questions with kindness and much patience I might add. The cardio who diagnosed me at CCF took the time to call me during the pre-op days to see how I was and to send me his 'blessings.' I thought that was very sweet.
I was very pleased with the way I was treated there and of course with the outcome. There were a couple of frustrating delays - surgeon was about 8 hours late for my pre-op appt and my surgery was delayed a day or so, but in the big scheme of things ...what did it matter? Dr. Pettersson is top notch and very much in demand.....Ask Ben!

Best wishes,
Debbi

 

[PegB]

Thanks!

Thanks!

Thanks for all your responses..... look forward to joining such a distinguished group of graduates! I'm going to give them another week up there, since I know they are very busy, AND I don't want them to think that I'm in any sort of hurry! Whenever they get around to me works just fine. I'm enjoying the weekend hoping that I have a two day reprieve when they won't be calling to schedule me. DENIAL is such a happy place!!!

Debbi, I'll probably be bugging you the most, since you're the most recent. Wish I could've held out for the new heart center they are building. Sounds as if it will be more like a week at a ritzy spa instead of a hospital!

Peg

 

[geebee]

Hi Peg,
I am not a member of the CC alumni but I wanted to welcome another Ohio "neighbor". You have obviously received excellent advice here so I will simply add my wishes for an uneventful surgery and recovery.

 

[marky]

Peg.. I am not a CC alumni either..but wanted to tell you that most of those surgeons have PA's or nurses that are very used to fielding your calls! So call.. and get some peace of mind!!

Secondly.. I welcome you! My mvp/reg was diagnosed 28 years ago.. I have gone for yearly or bi yearly echos.. when I remembered
and in the past 2 years mine went from moderate to severe.. I was having symptoms..but chalked them up to getting older and out of shape!

Praying for you and your upcoming surgery.. Everything I have read here points to only positive things from CC. Actually my second opinion surgeon even recomended Cosgrove if i wanted repair.
I just didn't want to travel that far.
Blessings