Hi Mona,

I have that slight gurgling feeling myself, but mostly noticeable when lying down - these are technically known as cackles - they sound like rice crispees when you add milk to them. :.)) that's the alveoles in your lungs that are filling up with water - first signs of congestive heart failure - but don't worry, it isn't emphysema...it's all a matter of degree, one of things your cardilogist checks when he listens to your breathing.

pete the atheist

Hi Mona,
Good to hear from you. I've been wondering about you. Know that you are not alone in this. Many, many of us also have similar symptoms prior to surgery. About a week ago I had to call my cardiologist at the Cleveland Clinic because my fatigue and shortness of breath had become so severe it was really worrying me. The doctor told me this was to be expected with my level of mitral regurgitation. He said to avoid doing anything that made my symptoms worse and advised against trying to get any amount of exercise to get in shape before surgery. I hope that little bit of info. helps you. My surgery is April 21 with Dr. Gillinov at the Cleveland Clinic. Waiting is very difficult. I've been waiting for 5 months since my diagnosis and 3 months since first seeing the doctors at the Cleveland Clinic. I have chosen to wait because I know the doctors at CC are the best of the best. My best to you.
Ruth Howell

Mona, My experience....after a reasonable time following submission of my records to Cleveland Clinic, I began telephone follow-ups to obtain my surgery date. I know my follow-ups helped move things a long a little. ...Barry on the mtn in New Mexico

Hello Mona, I had my repair done on Monday and am recovering from the surgery. All is going well for me. I can certainly assure you that you do notice symptoms more carefully after diagnosis. I would not be too alarmed nor bashful over them. Tell the cardiologist what you notice and let them be the doctor to determine how relative it is to your case.

Cleveland is a wonderful clinic and you should be in excellent care.

Randy

Mona,

Although it's always possible you have lung problems, severe shortness of breath is a symptom of valve problems. The good news is that it goes away pretty quickly after surgery!

If you have your surgery at the Cleveland Clinic (as I did) most likely it won't be for 2 or 3 months after you are scheduled unless it is an emergency. Plenty of time for your family to make travel arrangements.

Let us know how your evaluation at Cleveland goes.

Ricki Shine

Mona,
Since you haven't posted I thought I'd ask how you're doing and what your status is at this point. Any final decisions?
Ruth Howell

Mona,
I just thought of something else. Just because you "want" minimally invasive surgery, doesn't necessarily mean it "can" be done.... even at Cleveland Clinic. They will do whatever procedure allows them to do the best and safest repair. My problem is wth the anterior leaflet of the mitral valve which is difficult to get to so I will need a mini sternotomy - which is still considered minimally invasive.

When you say "open heart" . . . all valve surgery is open heart surgery because the surgeon must open the pericardium of the heart, thus, open heart. This is done even when there is a completely minimally invasive procedure (small incision under the breast). You are probably referring to the fact that you don't want the sternum opened. Neither do it! lol. But again, the surgeon has to do what will allow him to make the best repair. Hope that helps.
Ruth Howell

oops... something happened and my notes got posted before I finished....... i did a lot of research and am totally convinced that CC is the very best of the best. Good choice!
Feel free to contact me if I can be of any help.
Ruth Howell
Maine
ruthjohnhowell@gmail.com

Hi Mona,
Ricki is right. You do NOT need a referral to schedule your surgery at the Cleveland Clinic. I am having my surgery there in April and I REFERRED MYSELF to Dr. Gillanov. If I were you I would call and schedule an appt. with the surgeon of your choice at CC.

Then I would get on the phone with your insurance company and verify that the Cleveland Clinic is in network and they will cover your expenses there. You can also call the financial office at Cleveland Clinic and they will tell you if your ins. co. participates with them. If you find out that your insurance will not cover your surgery there then you can cancel the appt. you set up with the surgeon. But since there is always a wait, I would schedule now. I've been waiting for 3months!

After your surgery your cardiologist where you live will do your follow-up exams or you can return to Cleveland for the follow-ups.

I think you're making an excellent decision to go to CC. I did a LOT

Mona,

You do not need a referral to go to the Cleveland Clinic. You can contact them directly (unless your insurance requires a referral). They will send you a list of the medical records you need to send them for evaluation. (There is contact info on their web site to talk to nurse about what you need.) You have a legal right to obtain those records from your doctor's office.

I had my aortic valve replaced (minimally invasively) at the CC last May and I can't say enough great things about the care they gave me.

I hope you can resolve this with your doctor's office soon.

Good luck!
Ricki Shine

Yes indeed, many medical specialists are incredibly insensitive - too bad we can't effectively remind them who pays their high salaries...

but stay positive.

pete the atheist

Hi Mona,

I had my replacement done at University of Penn in Phila. Dr. Baveria was an awesome doc and is one of the best nation wide. I would say none of use wanted the open heart but dont rule of a great doc because of that. Are they all saying not to have open but min? I would deff go on what the docs say,

Sean

Hi Mona,
The Cleveland Clinic specializes in minimally invasive surgery and uses the robot. Call
1. Dr. Marc Gillanov
2. Dr. T. Miholojic (eeeks, I know I mis-spelled that).
There are people on this website who have used those surgeons and can give you lots of info.
Ruth Howell

Mona,

similar diagnosis. valve repaired Dec 15 and doing excellent. get several opinions and seek out a Surgeon who is skilled using the DaVinci robot.

best wishes~
Terry T.

Mona,
I know what you mean about needing to have all of the information possible. I do so much better when I have enough information. It is less stressful for me.

I hope you are able to have your surgery scheduled with a surgeon you feel comfortable with. I will follow your posts. My surgery (for aortic valve repair or replacement and replacement of part of the aorta which has developed an aneurysm) was rescheduled from tomorrow to Monday. Take care.

Tia Phillips

Whoops, Mona...on the entry I just made I said the organizations were on the left side of the www.ironheartracing.com site...sorry...I am really dyslexic a bit. I shoudda said the right side of the page (looking at the page, the right side).

Hi Mona,

...neat photo of you standing in front of the flags. Welcome to the serious mitral valve regurgitation club, a dubious honor I suppose. A benign prolapse was discovered during a physical I had in 1978, and the thing remained benign for a lot of years, with the serious regurgitation discoved at a routine cardiology follow-up last November. I had no idea how many of us there are until I started my research regarding the repair and research for cardiac rehab for master athletes. I immediately became my chief advocate to try to get the best procedure..learned about minimally invasive..and the best place to get it done. I'm fortunate to have super insurance and, although I will pay to travel and for extra lodging, will be able to go to Cleveland Clinic for the valve job. While searching for information about rehab I discovered the Iron Heart Racing Team. In your entry you mentioned about insurance and not doing meds and stuff..so don't know if insurance is an issue for you. There are several organizations listed on the left side of the home page at www.ironheartracing.com. If you need any assistance, perhaps one of them can help you..just sayin' in case you need it. Wish you the best...Barry from the mtn east of Albuquerque.

Hi Mona! I joined HVJ a few days ago. This is an awesome site to see a lot of folks with a lot of success stories. You are not alone in your journey!! We are all in this together! Many thanks to Adam Pick for opening up this side of the world for all of us!

Christy Naughton

I'm just getting started myself. I read the book last night and... Got to say it... Very Heartened!!!
You Go, Girl!!!

Hi Mona,

Nice to meet you and thanks for sharing your story here at HVJ.

Just take it step-by-step. You will do fine.

If you need anything, please let me know.

Keep on tickin!

Adam Pick

P.S. Thanks for the kind words about my book. You just made my day!

Welcome to the HVJs Mona. You are not alone - as you can see. I'm in the same boat and my surgery is scheduled for April 21 at the Cleveland Clinic.... #1 heart hospital in the country!!!! I wish you the very best. I know how anxiety producing this whole thing is and I'm still struggling with the anxiety daily.
Ruth Howell
Maine