The Wheels are Turning

[perkicar]

Sent all my records, plus my TEE tape, to Cleveland Clinic yesterday. About a week ago, after going through their online appointment service, I got an e-mail back from them. In the appointment request you can put information about your condition, etc., so I was surprised to see that they recommended a specific doctor based on his experience with post-radiation therapy patients. They suggested Dr Bruce Lytle--any experience with him out there? After receiving my records they said they would review them (takes 2-3 weeks per them) and make their recommendation. What amused me was when I read "If Dr Lytle thinks you need surgery urgently, he will contact you by phone". So I guess if I get a phone call from him I should be worried LOL.
In the meantime, I guess I'm officially in the waiting room....
Carolyn

 

[Ross]

Well that's good and probably a partial relief. Keep us up to speed on where this is going when you know.

 

[John & Joann]

Dr. Lytle has been at Cleveland Clinic for many years. We have had no direct contact, but he is WELL respected. Others on this forum have had him as their surgeon. I will follow their recommendation for Dr. Lytle.

 

[RCB]

Agree with John and Joanne

Agree with John and Joanne

John and Joanne have lots of experience with the staff at CC and have always been vey helpful to me(advised me on my choice of surgeons for my last surgery). I did not have Dr. Lytle, one of my room did.This man's father
died at 42, had a sister who died at 39 and he had two CABG by the time he was 35. He had been turned down by every major surgeon in the state of New York because of the scarring of his heart and the condition of his heart.
Came to CC in an ambulance, Dr. Lytle had him surgery for SEVEN hours redoing 5 arteries and 7 days later left the clinic on his own two feet. In a hospital where everyone has a big ego, Lytle is well respected at the clinic. My cardiologist would have recommended him for me except that I insisted on get a Maze, which Lytle does not specialize in.
Carolyn you are in good hands and you will fine.

 

[perkicar]

Update--Cleveland Clinic Response

Update--Cleveland Clinic Response

Well, the good news is that they haven't scheduled my surgery. Although when the nurse on the phone when I called this a.m. said "oh they've sent your stuff to scheduling" and I immediately jumped to surgery. However, he wants me to come up on Feb 15-16 for a full eval including CT scan and Heart Cath, among a gajillion other things! I have an appointment with Dr Lytle himself on Tuesday, then my cath on Wednesday (I think that's all they're doing then.). So I should know something for sure (or more for sure, I guess) in a month.
Carolyn

 

[Karlynn]

I'm so glad this is moving forward quickly for you and that you've heard such good things about the doctor. Keep us posted!

 

[tobagotwo]

I know, it's wait-until-we-feel-we're-good-and-ready, then hurry-up-and-get-these-tests, and who-cares-if-it-screws-up-your-life-schedule, followed by well-we-have-to-take-our-sweet-time-looking-this-over...

It's a waiting and frustration game most of us have to play here at some point. Actually, we're probably the lucky ones at that. The others just get you-need-immediate-surgery and we'll-tell-you-about-it-later-if-you-make-it.

Still, it sounds like you've been sent into good hands, and most of us seem to agree that the right surgeon is the single best thing you can have to stack the odds in your favor.

Hang in there, Carolyn. We're rootin' for you.

Best wishes,

 

[ericaj]

Carolynn,

I am happy to see that you have a date set to meet up with Dr.Lytle - even if it is a month away just having that date and time will give you some peace of mind.

I don't know muh about teh Cleveland Clinic and nothing about this Dr. but I can share with you in the anxiety of waiting, waiting, waiting. It seems that is all I have done this past few months!! My Drs. are closer as they are all here in WI but this doesnt decrease wait times on seeing new specialists regardles of who has sent me!! I am somewhat new to having problems with heart stuff - although valve problems have been there all my life about, rhythm problems are only maybe a year old and significantly worse the last 6 months. But with my EP and my Cardio those are a little better under control.

I am in the waiting room - but really in the waiting room on most everything with my health, from the nerve stuff - to the heart stuff - to the lung stuff- and so on. It has all been banked on this one Genetics appt which is now this Monday but that we have been sitting and waiting on since Oct. early Nov. And who knows if Genetics will even be the end of the line, there may be more Drs. added to the already group of 4 specialists including possibly Neurology, or Rheumatology.

But I think you will find it will help alot to have a support group like here to talk to and vent too. And for me helping other people helps too. I think I probably havent helped you any in this post to your message, but if in any way I can ever help feel free to email or pm me.. I like to talk!!

Erica

 

[Landon]

Hi Carolyn.

Dr. Lytle replaced my AV and part of my aorta about three years ago. I have nothing but good things to say about him and CCF - he is vastly experienced and, I was told by the nurses, greatly admired by other surgeons for the precision and speed of his work. He is down to earth and was generous with his time in answering all of my questions. I expect you will be very happy with him as your surgeon.

Good luck.

Landon

 

[perkicar]

Dr Lytle

Dr Lytle

Hi Carolyn.

Dr. Lytle replaced my AV and part of my aorta about three years ago. I have nothing but good things to say about him and CCF - he is vastly experienced and, I was told by the nurses, greatly admired by other surgeons for the precision and speed of his work. He is down to earth and was generous with his time in answering all of my questions. I expect you will be very happy with him as your surgeon.

Good luck.

Landon

Being a nurse, I know that the nurses opinions of a doctor mean almost as much as the patients! If the nurses think he's great, I know I'm in good hands. Thanks for your feedback. I'm getting a little nervous about my appointment and what he's going to tell me, but at the same time, I'm ready to move forward and do something.
I took my ACLS (advanced cardiac life support) certification this week and thought I was going to be a case study after I climbed up two floors to the classroom. Needless to say, I found out where the elevator was for the rest of the class days. People can call me lazy if they want, I can't take that shortness of breath and chest tightness!!
I'll have my SIL's laptop with us in Cleveland, so will keep y'all posted on my experience. We're staying at the Guest House--the "patient rate" at the fancy-schmancy hotel attached to the clinic was $199!!!!!! Yikes!! The Guest House is $74. I was able to switch my work schedule, although I've had one nurse question my sanity when I said I was having the cath done on Wednsday and working on Friday. Am I crazy? I didn't have any problems after my first cath, other than being sleepy that afternoon. Right now our only plans that day are to drive from Cleveland to Columbus, back to my brother's. I'm not coming back to Louisville until Thursday sometime.
Carolyn

 

[ALCapshaw2]

Carolyn,

What did they say about your Mitral Valve?

Johnny Stephens (another Hodgkins Radiation survivor) had BOTH his Aortic Vavle and Mitral Valve at the same time.

I had my Aortic Valve replaced 3 years ago and now my Mitral Valve is closing down and will likely need replacement in the not too distant future. Ask the doc's to LOOK at your echo tapes to view the MOTION of your Mitral Leaflets, not just go by the echo report NUMBERS.
'A word from the wise' from yet another Hodgkins Radiation Therapy survivor.

'AL Capshaw'

 

[MelissaM]

Hotel Tip

Hotel Tip

If you go on Hotwire and look for a "suites" hotel in university circle, you might just get into the fancy-schmansy hotel for the same price as the guest hotel.

Worked for me. . .and it was a NICE hotel! =) THe best part was saving $500+ on the hotel room!

 

[John & Joann]

The Guest House is opposite Cleveland Clinic. They provide free bus service and can be walked safely during daylight hours. Parking is free. You do not have these benefits with the other locations other that the $$$$$ Intercontinental Hotel.

Stay at the Guest House!!!! Been there, done that!!!

 

[perkicar]

The Guest House is opposite Cleveland Clinic. They provide free bus service and can be walked safely during daylight hours. Parking is free. You do not have these benefits with the other locations other that the $$$$$ Intercontinental Hotel.

Stay at the Guest House!!!! Been there, done that!!!

Yes, we stayed there this week. It was fine--we even had a fridge and a microwave in the room. The shuttle ran about every 15 minutes, there was a good deli right there, a drug store across the parking lot, all in all it was very convenient.
I'll be making reservations again to stay there when I have my surgery.