Going To Cleveland

[SalGiusto]

Hello Everyone. Quick History:

I live in South Florida. After 7 years of treatment by local Cardiologist and Electrophysiologist, I am seeing Dr. Asher in CC Florida. I already have an ICD/Pacemaker (implanted in 2000), which seemed to work for a few years. I have been getting weaker over the last year and had my first blackout with Defib discharged last August. Two weeks ago, while in Dallas on business, I almost passed out and that episode was followed by about 2 hours of amnesia. Up to this point, Dr. Asher had been saying I had time to decide on when I would have the myectomy. Real life has made it difficult for me to fit it in up till now. After last week's episode, Dr Asher advised me (twisted my arm is more like it), to have the myectomy NOW.

Everything is happening quickly, but it looks like I am headed to Cleveland on May 9 for surgery on May 13 (Yea Friday the 13th). Reading all of the posts on these boards about Dr. Lever and Smedira, have made my wife and I more confident. But..... we are still nervous. I have an extensive medical history including being a cancer survivor (testicle cancer found in 1978). I know what to expect from the chest surgery because I have had 2 chest surgeries over the years.

Again, I thank all of you for the encouraging words about Cleveland Clinic and the doctors there.

One question, they are telling me that I will be in the hospital for at around 5 days. When should I schedule my trip home to Florida? Obviously, we want to get back home quickly but don't want to mess it up. On top of all of that, we probably have to fly home through Atlanta and make the transfer. I know the airline will take care of us with wheelchairs and electric carts in Atlanta, but want to be realistic. When should I come home?

Another question. Did any of you ever experience the amnesia that I did last week. Both teh doctors in Dallas and Dr. Asher said that it was not a usual sympton of HCM. I woudl like to hear if anyone else has experienced this.

Finally, while in Dallas, I was attended to by the doctors at Baylor University Hospital. They tried real hard (again twisting my arm) to consider Alcohol Ablation instead of the myectomey. For every reason they had that I should do it, Dr. Asher was able to turn it around to a negative and convinced me to go for the myectomy. I only tell you this so if you are considering which one, it is very important to get the info from doctors who believe in both sides. Getting both sides of the story from different doctors really helped me to make up my mind, and I know I am doing the right thing for me and am not looking back.

Thanks again, and I will keep you folks up to date.

Sal

PS. Lisa, I will be sending in my membership application and dues ASAP.

[shirleymahoney]

Sal

Welcome aboard and i will keep you and your family in my prayers, i had a myectomy 14 months ago here in Virginia, i always said i would go to Cleveland if i had a myectomy but it was a have to right now surgery for me, but i was lucky and got a good doctor here I was told he did a great Job, and that was told to me by Dr Barry Maron so i guess it was a good surgery, please keep in touch and if you need anything feel free to PM me anytime

Shirley

[Tigger1]

Welcome Sal,
I had a myectomy on May 15 2004. I was in the Cleveland Clinic for 10 days. I signed the release papers at 10:00 am and was in the car and headed home (5 hour drive) at 10:30. It depends on the person and how well they take to the operation. I was in A-Fib, that's why I had to stay a few extra days.

Believe me, theres no place like home to get rest. You won't get rest in the hospital. The airports will take care of you, just let them know in advance. You will get the best care at CCF.


Tigger1

[sandylevitt]

airlines

When we flew to boston for Felix's myectomy over a year ago, I went with airtran instead of delta. They were so much more flexible. I ended up staying with him in boston an extra day and they were so accomodating. the only problem is that airtran only flys into akron.

All airlines will be helpful with the wheel chair situation. A good site for checking flights is www.kayak.com

sandy

[Linda]

Sal, Welcome to the message board. I wish you the best with your upcoming trip to Cleveland. From your PS to Lisa, it looks like you may have already spoken with her. If you haven't, you may want to try to speak with her. It will give you even more confidence in your decisions. It sounds like you've done your research well. I know you will get a lot of helpful tips in the next few days.

Please keep us posted, Linda

[Reenie]

It sounds like you're on the right track. I don't have any personal experience for you but you will be in my thougths and prayers.

Reenie

[Ronnie]

Sal-
Best Wishes, for a "comfortable" recovery. You've done your homework & know you've made the best decision at a Great Facility!
Booking the trip home (by air), can be problematic, as you can't predict exactly when you'll be released. 5 days is the norm, but several others, including myself had Afib, after surgery, which added to our hospitalization. I had to change my fight home twice & Northwest was not very accommadating, regarding charging me for changes, but what can you do?
I was very concerned about flying home from Mayo & elected a direct flight from Minneapolis (my husband rented a limo for the 1 1/2 hour ride). but it all went smoothly, with minimal discomfort. Decide that the flight home is going to be something you do NOT worry about-book your flights, if you have to change them, you do! The airports are pretty good about providing services (carts etc) when notified in advance.
Worry about the important stuff, like resting & getting stronger after your Myectomy. And most importantly-what can you & will you eat while recooperating? The hosp food is awful & your appetite will be limited.
Seriously, just take it all in stride-soon you'll be encouraging others, in your situation!
My prayers are with you.

[Linda]

I found Northwest to be especially accomadating when we were at Mayo. We had to change our return 3 times and had no additional charges. Of course, they were full-price tickets to begin with. When you make reservations, talk to the airlines and explain that it is a medical trip and you are not sure of the return date. Our experience was 10 yrs ago, but at that time, Northwest had a "medical emergency" program. We were traveling under that. Ask about that, regardless of which airline you travel with. If they don't have it, they will just tell you no. Good luck, Linda

[felixdacat]

Sal,

BTW, how old are you? That is important information concerning your recovery from the Myectomy.
I think that most people look at a 5 day hospital stay as a minimum. I was in the hospital for 6 days but could have been released earlier had it not been for a small fluid build up.
I know of another soon to be Cleveland myectomy patient who will be staying at a hotel for a week after release. That may be a touch excessive, but I have to agree that it isn't a bad idea.
As my wife says, Air Tran was much more flexible then Delta, although Delta has since changed their rules for the better.
Most of us get quite spoiled with the knowledge level, experience, and concern of the staff's at the HCM centers, and then we have to return to our dorky local cardiologist.
Since Doctor Asher is your main guy in Florida, I wouldn't be too concerned about post surgical issues.

[SalGiusto]

Thank you everyone. You are all very encouraging.

Felix, I am 48 Years Old (Young?). As I said, I have had numerous surgeries including invavsive chest surgeries and kind of know what to expect from my body. However, I was much younger then and not weak from years of HCM. I guess we will see what the added years do.

I just heard from the Cleveland Clinic. My insurance company approved the procedure and going to Cleveland, which was not guaranteed. So it looks like I am headed North next week. I thank Lisa for this, beacuse it was her idea to hook up with Dr. Asher in FLorida. Before I did that, the insurance company was saying I had to go to hospitals in Florida. I even spoke to a doctor they wanted me to go to, and he said that he can do the surgery, but I should consider going to a center that does them regularly. Thanks Lisa.

F Y I - I made reservations via Delta and used my miles to buy the tickets. They are at "Full Fare" with all of the rights and privleges of paying Full Fare. With Delta, you can book using miles this way, but it cost 50,000 miles per ticket instead of 25,000 for regular mileage travel. I am also a Gold Medallion flyer with Delta and usually get treated pretty well when I travel, so I expect that they will treat me well under these circumstances. I am also traveling with my wife, who can be a bull in a china shop when she thinks someone is not treating her family well and is not shy to ask for assistance.

Again, thanks for your good wishes, prayers, and encouagement. I'll send more news next week when I get to Cleveland.

[brenda]

This is my first post.in answer to the question about amnesia. Around two years ago I had an episode of amnesia that lasted at least 12 t0 16 hours. During the teste to determine what was wrong with me, an echo was done and I was dxd with hocm. The dx for the memory loss was global transient amnesia. I have wondered if other hocm patients have experienced it. I was told that ist is rare ,however, two of my brothers and a cousin have had tga. brenda

[SalGiusto]

Brenda, thanks for sharing the experience. Your info has helped me tremendously.

I don't ever want to go through that again. Writing e-mails I don't remember, eating lunch I don't remember really played a trick with my pysche. The entire espisode was the reason that I decided to get the surgery.

Thanks for the info and I hope you are doing well in your battle against HCM.

[Perri Carol]

good luck

Good luck next week! I had a myomectomy 8/04. I have also been to the Cleveland Clinic. They have a hotel that is part of the hospital (probably where your wife should stay) and there are frequent shuttles to and from the hospital. The hotel is quite nice. Perhaps you should consider staying there for 2-3 days upon your release. This will give you time to feel better in a non-hospital environment, and be a good transition before you make the long trip home. Also, don't be a hero. Don't be afraid to take the pain medicines prescribed for you, and that will help. One week after surgery you will feel markedly better.
I would not make a firm plane reservation for 5 days after surgery, since everyone's recovery is different.
Best of luck to you. We are all rooting for you!
Perri Carol

[Lisa Inman]

Hi-- Good luck with your upcoming surgery! I have a myectomy scheduled, and also just had to make the decision about when to book a return flight.

We decided to expect we'll have to change it. Even though my doctor thought I could fly home as soon as I was discharged, I decided I'd like to stay around in Rochester a bit after I'm discharged, however long until I feel I have reasonably good energy for the trip home--we have to fly from Minnesota to Seattle, about 10 hour trip plus another 2-3 hour drive home from there. I opted for return date 11 days after my surgery, but ready to change it sooner or later if I want. I felt like buying first class seats for the return trip--figured I'd really appreciate that, and I deserved some treat out of all this... but it also turned out that the coach fare tickets all had $50 or $100 fees per ticket per change and the first class ticket had no change fees--so maybe that will cancel out the extra $200 we spent upgrading to first class.... I don't have good hospital HCM type care around here, so I figure I'd like to stay within reach of the Mayo for at least a few days to know I'm good to go. However, I'll know when the homing instinct hits.... Lisa I.

[Pam Alexson]

Sal,

Good luck with your upcoming surgery. Lots of individuals have given some excellent advise. Keep us posted.

Pam