Congratulations!! (Finally!!) Dr. Gillinov will get back to you within a couple of weeks and then you'll be able to start planning your surgery. Please keep us posted.

Ricki Shine

Doc G is a rockstar. I spent St. Patricks day with him. Those silly Hippy or Hippi laws makes it almost impossible to get your medical records. Best of Luck. Im 14 weeks (1 day before Fran) post op and doing great.

Great news, Linda. Most likely Dr Gillinov will need those discs before you hear from them. Once that happens, hopefully things will move quickly. He is a busy surgeon, so you may have to wait awhile for your scheduled surgery. Good luck, keep us up to date.
Fran

Hi Linda - Just wanted to check in to see if you were able to get your records yet.

Best of luck!
Kelli (MD)

Hi Linda!

I'll try to answer all the questions you asked on my guestbook.

I think I had 2 CDs (my angiogram and echo) as well as a bunch of written records. I FedExed them to my surgeon, Dr. Joseph Sabik who is the chair of the department at the CC. He was fabulous but I really think any of the surgeons there are fabulous. Within 2 weeks of sending my records, Dr. Sabik's nurse called and we were making arrangements for my surgery.

Like most others here, I did not go to the CC until a couple of days before my surgery. I had pre-op tests all day on Tuesday (echo, chest x-rays, blood work, pulmonary tests) as well as appointments with a cardiologist and a nurse practitioner. On Wednesday I had some pre-op information sessions, I met with my anesthesiologist, and with Dr. Sabik. All of these appointments set my mind at ease about my surgery and I was very calm at 5:15 Thursday morning when I reported for surgery.

My surgery (aortic valve replacement with a bovine valve) went smoothly and took about 5 hours. I saw my family at some point in the late afternoon. I was in ICU for 24 hours and then went to the step-down unit until I was discharged on Wednesday. The care was outstanding. I flew back to South Carolina on Friday and I've been getting stronger every day! (Today is my 3 week anniversary.)

I hope this helps and please let me know if you have any questions.

I hope you get your records today!!
Ricki

Hi Linda
Thanks for the note, hadn't realized you are in Ohio. Wouldn't it be wonderful if when you get your records you would consider getting an appointment at the Cleveland Clinic? Of course I am prejudiced as I had Dr Gillinov do my surgery in March. I never would have spent the money we did to travel from FL to OH to have this surgery if I didn't believe in the hospital and doctor. Several people on the HVJ have had their surgeries there, some with Dr Gillinov and also with other doctors. To be on the staff of the CC you have to believe they are the cream of the crop as it is the #1 heart hospital. Good luck with all you have ahead of you. So glad we on the journal are able to help you.
Fran Z

Hey Linda,

Sorry to hear you're having some problems with the records, but looks like you got some great help! Isn't this place wonderful?!! I've gotten so much encouragement and help from folks here - its awesume.

I read that you are trying to correct hypertension through weight control. May I ask - are you having any symptoms when you exercise?

Peace!

Ray Williams

Hi Linda. Yes, I do get panic attacks. Of course they're more frequent now, but I'm managing. My cariologist feels that I'm still at a stage where my pulmonary hypertension will reverse on its own.

Added FYI: I wasn't able to get any where with my prior PCP regarding the high blood pressure she was treating me for and the medication she prescribed wasn't working... After much disgust and wasted time, I finally got a new PCP and this one sent me for futher testing on the first visist. I thank God every day for leading me to this decision... It probably saved my life. I have enlarged jugular veins of the neck also, but the old PCP said there wasn't anything to be done about that and left it at that. Now I know that this is a sympton of my condition...

Good luck in getting your records. I am praying that you are able to do this, and quickly. In the meantime, arrange to see someone for a 2nd opinion. Hopefully, if you had tests at a hospital, they can get a copy easily directly from the hospital.

Kind regards,
Kellie (MD)

Linda:

As Fran Z. said, I also live in Tucson (Saddlebrooke) and had an aortic valve replacement, mitral valve repair, and one bypass on March 19. I am doing great.

I was diagnosed about 4 years ago and stayed with the same cardiologist until this year. I was concerned that it seemed I should be looking at surgery, but he was not advocating it yet.
I got a recommendation for a second opinion, and went to Dr. Fraser Richards, a cardiologist with the Southwest Heart Group
(phone - 520 886-3432) They are located in a building in back of St. Joseph's hospital near Broadway and Wilmot.
Let me tell you that Dr. Richards is fantastic in my book. He knows his stuff and tells it like it is.
He did his own echo after looking at my previous ones, and, on the basis of what he saw, did an angiogram right away. He then described what he had found and said it was time right now to get the surgery.

If you contacted his office for an appointment, they may be able to help getting your records. I don't know how that works, but I agree withn Cheryl adn Ricki that you need to get proactive.
And let me also say that we have one of the top thoractic surgeons in the country right here in Tucson...Dr. Michael Moulton (795-9019). At age 45, he has done literally thousands of heart surgeries. He also goes up to Phoenix on one day every two weeks and does heart TRANSPLANTS. He did a double lung transplant for which he received national attention. On top of that, when you meet with him, he has a great manner and inspires confidence.

If you need more information, send me an e-mail at jpjimpatrick@gmail.com and I'd be glad to give you my phone number back.

All the best--

Jim Patrick

Hi Linda,

I agree with Cheryl in regard to how to go about obtaining your reords at this point. Mainly I wated to let you know that Ialso have pulmonary hypertension, along w/stenosis of the mitral valve and regurg. My carioloigst said if caught early enough the hypertension could resolve itself. However, there is a point of "no return". Please do what you need to to resolve this earlier rather than later.

Kellie

Hi Linda

You could wait 'till the cows come home so why not be proactive and in your next phone call, tell them you will be at their office at such and such a time to pick them up. Maybe then they'll get off their butts. I wouldn't be surprised if there is a photocopy cost because you are going to get copies, not the originals. Good luck.

Cheryl, Ontario

I had a problem getting my records from my cardiologist to send up to the Cleveland Clinic. Sometimes, it's because the cardiologist is not in favor of getting another opinion or because he/she doesn't want you going elsewhere for surgery. That was not the case for me. In my case, it was because my cardiologist's office staff was unbelievably disorganized. (Which is why I now see a different cardiologist.)

I waited a week for my records. I called daily and was told they were getting them together, they'd call me when they were ready, etc. Turns out they lost my request. After a week, I ended up getting the office manager's name, calling her, and telling her I would be at the office at 4pm that afternoon to pick up the records I had requested. (The list the CC had provided.) When I arrived at 4, they were ready.

One thing I've learned through this whole process (I had surgery 3 weeks ago) is that patients must be pro-active all the way through. Ask questions. Demand answers (when they're not given freely or timely). Know your status.

Good luck!
Ricki Shine

A PS to my letter. There is a Jim Patrick from Tuscon who had valve surgery several weeks ago. Would it be worthwhile to contact him and find out what he has to say about his cardiologist?
Fran Z

Hi Linda
Melany's advice is worthwhile, I believe. Perhaps if you don't hear from the office by the weekend, I'd consider calling the office Monday morning and telling them you'll be there at 3pm (or whatever is convenient for you) and will pick up your records. Many times an office will fax records (for free) when you sign a release form. But I do believe you have a right to copies of your records.Please let us know what happens. You don't need this extra stress.
Fran Z

Hi Linda,

You may be better off going to the office to get the records yourself. I will continue to pray for you.

Melany

So, what's the latest on what to do? Curious as to who will be your second opionion physician you will see.

Hi Linda

When in doubt get a second opinion and third if need be. You have that availability there in the States so I say go for it. Sometimes you have to be proactive. It's a good thing you sat in on Dr. Gillinov's chat, even if all your research only ends up making you at ease.

Cheryl, Ontario

Thanks for your response, even though you did not sign your name , knew it was you. In the begining when I sent messages, I thought my name followed me, but not so.
Fran Z

Hi Linda
My surgeon was Dr Gillinov (mitral valve, bovine and tricuspid repair). I would place my reust in what he had to say even though it is not what you wanted to hear. I traveled from SW FL to Cleveland to have him do my surgery. Never felt he was an alarmist. Getting a second opinion is always a good idea and please let us know what the second consult says about the pulmonary hypertension. Do not be afraid, if it needs to be done, better now than later when there could be complications to your health.
Fran Z

Hi Linda,
This is my line of work so the best advice that I can give you is to sign up for Weight Watchers or similar and set your goal at losing 10% of your body weight at a time, maintaining for a month then recalculating the next 10% and so on. You should be able to steadily lose 1-2 pounds a week - any faster and it won't stay off because your metabolism adjusts. Our bodies are designed to convert all excess fuel requirements to be stored as fat - so even if you cut all fat out of your diet (not a good idea as 30% of our calorie intake needs to be from fat). If you sign up to my journal updates I can pick up your email address from there and send you some really good stuff. Now I know that we are all serial dieters but you CAN do this once and for all - easier to stick to long term adjustments for health rather than quick fixes for fashion. If you don't want to weigh yourself once a week then measure your waist. It can be a better indicator of fat loss. Good luck, please stay in touch with us on HVJ - we are all rooting for you.
Warmest wishes
Penny (Scotland)

Wow! Great news on not needing surgery! Good luck with the weight loss, and please do keep in touch with the journalling community.

Steven in Calgary

Hi Linda
What good news you were able to share with us. I'm very happy that you aren't up for immediate surgery. Good luck with losing the weight. Keep in touch. Cheryl, Ontario

Good news, Linda. I assume working hard to lose the wait must be a pain, but if you look at it from the perspective of your overall health you might feel better about it. It will also take a load off your heart so that it will stay healthier longer!!
Fran Zilko

Hi Linda
How did you make out last week on your follow-up? Are you heading for surgery? Hope all is good.
Cheryl, Ontario

I too took Fen-Phen, but not for very long, not sure if that's the issue with me. I also was told Cleveland was number one, but my daughter lives in So. Calif so that's why I'm looking there and they do have excellent surgeons. If it's a go and I have the time to wait, I think I will plan for December to have surgery, but if it's not necessary yet I will wait. I have severe OCD, therefore, I research things to death. But, at least I won't be caught off guard eh?

Okay, looking at my reports, my EF was 55% on July's echo, but 65% this echo. On my supine stress echo in October in Calif my EF was 56%. My pulmonary pressure at rest is 31 - 32, but on supine stress echo it shoots immediately to 50 as soon as I started exercising and I went into severe mitral valve regurgitation. That's where I don't understand cardiologist saying let's watch it, but surgeon and the doc who performed the supine stress echo said surgery within 3 months. My PA at the cardiologist said the supine stress echo is a far more advanced piece of test equipment than the resting echos being done here and she does pat me on the back for following up, and said she would do the same if she were in my shoes. My dad and his family all had coronary artery disease which is what I wanted to avoid, but this valve thing, this is all new to me.

Sorry, I'm still trying to figure this journaling out. My name is Linda Davila, Flagstaff, AZ. I went to add an update in my journal, but edited my original, and not sure if I deleted my first entry. Argh, I'm getting there, but be patient with me everyone. :)

To my friend in Flagstaff, you did not sign your name. I would like to read your story and compare notes. My doctor as University Medical Center in Tucson.

Linda Stahl

I have been reading so much and everything I read points to having surgery before you have serious heart damage, which according to what I have read is partly keeping the ejection fraction no lower than 60, which is were I am right now. My left atrium is 50 mm and my pulmonary artery pressure is 50 mmHG. I compared my previous echo with the latest and it has worsened considerably, which is why my doctor became proactive. I have had some dizzy spells, that really got me worried I might faint (never in my life has that happened). I am not sure of a surgeon. Here in Tucson, there really are not that many. I really need advise and am hoping my doctor will have the answers. Linda

linda ,im not sure what the differences are but i do know that it depends on whats being done surgically. i had my aorta and its valve replaced due to a calcified valve and an anuerysm. are you getting two valves done? jeff

Hi Linda,
Here in the UK my Doctor told me that if I wanted minimally invasive for my vavle replacement then he is not 'my man' although they do the procedures at the hospital that I am going to. He said that he puts the safety of the patient first and that he likes to see what he is doing. Also there is a risk that they start with minimal process and end up having to go the full job anyway. I was disappointed initially but I trust my doctor implicitly and accept his advice.
Are you sore after your cath? I am still hobbling around, feeling like a wimp!

Warmest regards
Penny

Hi Linda, reading up on your story. Where do you plan to do your surgery? I'm located here in Flagstaff and I'm researching surgeons in Calif. I was just diagnosed last July with Moderate to Severe mitral valve regurgitation, LBBB and on my follow up echo 2 weeks ago, still the same, but now shows diastolic dysfunction? I'm confused as when to do surgery. Surgeon in Calif says now, but cardiologist here just says follow up echos every 6 months. Don't know if I should be proactive and go for it or just wait. Interested in hearing from you...

hi linda, thats great news about your arteries. i had the same news as well.surprising considering im on cholestrol meds! haha. so whens your surgery scheduled for? and are you getting a mechanical or tissue valve? jeff jeffstoveken@yahoo.com

Hi Linda
Good news to hear your arteries are in good shape. I'm glad the doctor stopped to fill you in on what they found because not being told is nerve wracking. Keep positive and get busy making up a list of questions so you are ready for your appointment. And, good luck. Cheryl, Ontario

Hi Linda,
Capt Bill is a hard act to follow so I won't try! Except to say we have both 'sailed through' with flying colours! My husband and I also work together in our business and it is getting difficult for both of us to stay focused although we are so busy this quarter plus we had a key employee resign yesterday and with only 2 weeks to go before my op I won't have time to recruit and train a replacement. Ah well, that's life.
Looking forward to reading your updates.
Warmest wishes
Penny

Hi from Tulsa,

My Cath is on Thursday. As I undstand it.

Too early- Doctor had a late night and is hung over

Too late- Doctor has a date with nurse before going home to wife, so wants to get done quickly.

you will do fine.

happy boating
captain bill

Hi Linda
When my cath was finished, the surgeon who did the procedure came and spoke to me giving me the results. They don't really talk to you about the test while they are busy and you don't want them distracted. The surgeon came and confirmed my regurgitations and that he would be putting me onto the heart valve surgeon. By then I knew I was going further too, but each step putting me closer did give me a little discomfort. There was nothing I could do but I did get a cold feeling inside. I wanted to process the information before speaking to my husband and family.

I realized my readings were getting higher and when I mentioned it to the cardiologist he just smiled and told me not to worry, it wasn't anything that couldn't be fixed. I asked if he meant pills and he just smiled. I then knew we weren't talking pills! Last March when he said he wanted me seen by a surgeon, my stomach did a flip. I came home and was really quiet and didn't say anything to my husband. I work with him so it's difficult to hide so I just burried myself in my work. Just before my appointment I mentioned to my husband I was going to see this guy and if he wanted to come he was welcome. He was floored but tried to be strong for me.

There is no doubt this is terrifying. The unknown usually is but that is why this site is so helpful. This site is for people who want to know what is going to happen and they can be ready. It's not for everyone. My husband doesn't want to know in advance.

Take a good book and try to relax. I keep saying - control what you can and let the doctors control your surgery. Good luck tomorrow.

Cheryl, Ontario

Hi Linda,
I left out - your groin is shaved so with hindsight and enough time I would have chosen to have a bikini wax the day before! Penny x

Hi Linda,
I had my heart cath and TEE last Wednesday and Cherly has described both exactly as it was done. I am still experiencing some soreness from the cath in as much as I tend to shuffle when I walk (if I am sure that no-one can see me) and I am enjoying lying flat on my back most of the day which is totally out of character for me. Am getting through a ton of good books! I have some bruises and they are still developing. I don't anticipate driving for another day or two yet and later today will be the first time that I will be walking the dogs. I will take it slow and easy! I cannot believe how much this website has helped me so far and I know that I will be better prepared for my mitral valve replacement op on 24th February and life after. It took me a while to figure out how to find the journals of others who had so kindly signed my guestbook and seemed to have similar case histories(especially women)and I just have to search by patient first name,then found it easier to sign up to get their update notification by email, rather than to search journal central each time. I discovered the hard way that once you start typing text (in your own journal or others guestbook) if you click away for any reason you lose all your text in a blink!
I find it practical now to assign a set time each morning to HMJ as I am quite addicted to it...
Warmest wishes
Penny (Scotland)

Hey Linda... I had my cath 2 weeks ago. The procedure itself is not too bad. I was nicely sedated. The part I did not like was the cold antiseptic they swabbed on my leg. My groin was sufficiently numbed so I only felt a little pressure when they inserted the cath. The other bad part was having to keep my leg perfectly still for a few hours. The only thing I could do was wiggle my toes. My back was killing me and my leg fell asleep so when it was time to finally move my leg that was a trip.
Afterwards, I was very sore for the next few days. Sitting upright proved to be uncomfortable for a few days, so I rested in my hubby's recliner. The bruising looks horrible, but it does go away.
The problem I had with my cath was that they did not tell me I would have to have a pregnancy test (I will be 40 in April) so I went to the bathroom before I got to the hospital. I had to wait 3 hours for them to read a blood serum preg test! Other than that, it wasn't too bad. Good luck!
Kathy Jamison-Patnode

Hi Linda.
Nice to meet you. I will be 61 in a couple of weeks and had mitral valve repair surgery on the 1st Oct, 2009. We have been watching my mitral valve annually since 1994.

Obviously the surgery is serious and the cardiologists don't suggest proceeding until either you complain your symptoms become a major nuisance and/or become life altering and preferably before any damage is done to your heart. They do all the necessary testing first and then go from there.

The cath is one major test and quite an interesting one. You are taken into an operating room where you are given a local which freezes the groin area. You will probably also be given something to relax you because you are not really put "out" for this as it isn't necessary. It's not a lengthy procedure either. There will be a huge TV screen area and you will be able to watch what is happening if you like. It's a very sterile area and I had my arms inserted into clear stationary plastic tubings so they wouldn't be in the way. The groin and surrounding area is swabbed with a sterile solution and then surgical cloths are put outside the insertion area. You have your gown on still but it is pulled up exposing the groin. A wire type thing is inserted through the groin area into your artery, (the crease of you leg and abdomen)and that wire is directed up through the arteries to the heart. The doctors are checking to see if you have any blockages or anything else to be concerned about and if so, this can be added to your surgery plan. Next a dye is inserted through this little hole and the dye goes all through the arteries so things can be seen more clearly. The dye goes in really warm and for one instant you feel like you have to pee but nothing happens. It literally only takes a couple of seconds. Next another dye is sent through and this time it goes through the heart valves showing up amounts of regurgitation etc. Again you feel like you have to pee, but not to worry. Nothing happens. That's it. Done.

When you are taken back to a room they will apply extreme pressure to the groin area, something like a 10 pound sandbaggie and you must lay perfectly still, perfectly flat, and try not to move around - very important. They are trying to seal that main artery up and if you are moving around that induces the blood to flow more quickly. You will lie there for about four hours so an IPod or company is nice to help pass the time. You might even find yourself clamped to the bed for extra added pressure on the wound. Eventually you will be given a low pillow and maybe something to eat as well, but you have to remain prone.

In about 4 hrs time, if there is no bleeding through the wound, you might be released home. The groin area might bruise quite a bit and feel a little tender but nothing really all that bad.

As a side note you might want to make one last jaunt to the bathroom before going for the test because you aren't allowed to get up until the bleeding has stopped.

The doctors do not want to proceed with valve surgery and get in there and find out you have a blockage somewhere. That is not the time to change plans or the course of the operation so they find out absolutely everything there is to know beforehand.

Another test is a TEE where your throat will be quite frozen (some patients are actually put out for this) and then a small ultrasound type instrument put down your throat and ends up right next to your heart. An echocardiogram done on the chest is taking pictures through the ribs etc. and is compared to 2D so the ultrsound inside the body, next to the heart apparently shows 3D pictures. Obviously a better set of pictures. Many fear this test because of fearing gaging but I haven't read that has happened to anyone because the throat is so easily frozen. It's a piece of cake.

From these tests the doctors actually know what they are up against, measurements etc. etc. and when they go in for the surgery, they know what has to be done. The operation is planned out in advance.

The doctors don't want you on the heart/lung machine any longer than absolutely necessary so knowing in advance what has to be done, helps save time.

Reading the journals here, you will read all about the same operations but with many different approaches, complications, recoveries etc. And of course we all have different personalities, tolerances for pain etc. and this all comes into play in how we do or think we are doing.

Adam's book sets out perfectly so much of what can happen and he has done the research etc. that all of us here have found so helpful. The journal aspect has given us patients and caregivers an avenue to compare stories and experiences both before and after surgery. Even recovery has blips now and then and it is helpful to just sound off.

Hope this helps you understand a little what will happen on Monday. Good luck.

Cheryl, Ontario