What the heck is wrong with my heart?? Cleveland here I come!

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dj/utvolsfan

dj/utvolsfan

Well-known member
Joined
Jul 28, 2005
Messages
412
Location
Hurricane, West Virginia
I utlized this wonderful website during the summer. Now I am back. I am leaving for Cleveland Wednesday night and have two days of procedures, consults, etc. TEE, catherization, echo, etc. Not again! I just had all those tests this summer. Oh well. I just want answers. At this point I am willing to do whatever it takes to feel better.
My cardiologist in Charleston, WV, following an August TEE, is sending me toCC because he has never seen anything like my heart before. Yikes. Noone wants to hear those words!!! This man has decades of clinical experience so I am really worried.
I have somewhat of an 'overgrowth' of heart tissue which is compromising my bad valves even more so. ....aorta and mitral. These valves are bad but not so bad as to warrant replcement or to be the cause of my sacrificed heart function. It is hard to explain exactly how I feel..heartwise. Exhausted, feel like my heart is huge inside my chest. I am totally out of sorts. Hard to catch my breath. Cannot begin to imagine laying on my back. That is definitely not happening. Feel incredibly nasty when I first wake up. I am only 49. I shouldn't feel like this.
My Charleston cardio mentioned some options that CC may be looking at. Rmoval of the percardium lining????????? Shaving of the heart muscle????????? Do either of those two little tidbits sound possible to you folks?
Please help. I am not leaving for a few more days. I would love to have some of your thoughts.
ALSO ANY OF YOU CLEVELAND CLINIC GOERS....ANY MOTEL SUGGESTIONS???
Thanks,
Debbi
 
I'm sorry to hear that you have amazed your cardiologists. I'm quite sure you won't be so amazing to the folks at CC. Sounds like a wonderful place for you to be going.

No one likes to be the mysterious patient. So you have to go where they specialize in solving mysteries.

My husband has had his share of big question marks in docs eyes. It's a pretty uncomfortable position to be in.

One of his problems is restrictive/constrictive heart disease, which means that the pericardium is actually squeezing his heart. One of the cures for this is to remove the pericardium. However Joe is not a good candidate for surgery.

I am wishing you all the best for the answers to your situation.
 
Cleveland Clinic

Cleveland Clinic

http://cms.clevelandclinic.org/body.cfm?id=142

Debbi, Didn't you receive a big packet from the clinic that is loaded with all the ins and outs of finding your way around? Check out the site above and see what is offered for facilities for your stay during your tests. Unless you are very, very wealthy I suggest you stay at the Guesthouse. It is across the (extremely busy) street from the main campus and the heart section; there is constant shuttle service (free) with parking space for you if you are driving there.

I'm sorry your diagnosis is so iffy; it's hard enough when you have a definite plan set before you for your procedures. I would think if anyone can give you the right answer to your problem, it will be the clinic.

Please keep us informed of your progress. God bless, Barb
 
Both of those tidbits are possible, Debbi.

The operation that reduces the sheer amount of heart tissue was originally developed as an alternative means of combating the overgrowth of heart tissue common to chronic heart failure. It's known as either Myocardial Reduction surgery or the Batista Operation. Basically, the overage of heart tissue that is interfering with the heart's ability to pump efficiently is cut away, leaving the heart lighter and no longer musclebound.

The operation to remove the pericardial tissue was developed for people who suffer from pericardial contriction or pericardial restriction. Basically, the pericardial tissue becomes a straight jacket for the heart, making it difficult for the heart to function in its limiting containment. The operation to remove the pericardium is complex, but there are surgeons, such as at CCF, who have had ample experience with it.

All of the surgeries mentioned here Google well, if you want to pursue more about them.

I hope you come back with some answers and a solid direction to go in.

Best wishes,
 
Debbi,
I have the pericardial constriction that both Nancy and Tobagotwo refer to. However, my symptoms don't sound quite like what you've mentioned. Removing the pericardium is tricky business, but Cleveland Clinic is a good place to locate a surgeon who can do it.
Good luck, and let us know what you find out.
Mary
 
Debbi,

Good to hear from you again. I hope you will be able to get the answers you need at the CC.

I had chronic pericarditis (extreme pain, SOB, unable to lie down, exhaustion) every few months for many years between my second and third surgeries. During my last OHS, what was left of my pericardium was removed and all the symptoms went away.

If they feel that is what is needed, you will most likely get relief from that surgery.

Best of luck and let us know how things go.
 
Go Vols and Go Debbi!

Go Vols and Go Debbi!

Debbi,

Complex surgeries are the order of the day around here, and the Cleveland Clinic is top-rate, I understand. So don't feel alone.

I don't have anything to add to the technical side, but wanted to say that if you are a fan of the Tennessee Volunteers, as your screenname suggests, you are good folks as far as I am concerned! ;) I grew up in Tennessee rooting for the Vols, bleeding orange. The 2005 football season was rough, but they are going to get better in 2006 --- and so are you!!!

Cheers,

Bob
 
My cousin has an enlarged heart and they want to take a slice off the back. He's about 60. He has some other very, very serious issues tho and they can't get his health up to par to do it. I hope they can fix you up like new or close to it. You can't get much better than Cleveland Clinic.
 
Nancy said:
I'm sorry to hear that you have amazed your cardiologists. I'm quite sure you won't be so amazing to the folks at CC. Sounds like a wonderful place for you to be going.

No one likes to be the mysterious patient. So you have to go where they specialize in solving mysteries.

My husband has had his share of big question marks in docs eyes. It's a pretty uncomfortable position to be in.

One of his problems is restrictive/constrictive heart disease, which means that the pericardium is actually squeezing his heart. One of the cures for this is to remove the pericardium. However Joe is not a good candidate for surgery.

I am wishing you all the best for the answers to your situation.
Click to expand...
I REALLY APPRECIATE YOUR REPLY. WHAT HELPS JOE WITH HIS PROBLEM IF HE CAN'T HAVE SURGERY? I SURE HOPE THE QUALITY OF THIS LIFE ISN'T COMPROMISED. I ALWAYS ENJOY READING YOUR SUPPLIES. YOU HAVE BEEN THROUGH SO MUCH. TAKE CARE
 
I HAVE CHECKED INTO MAKING RESERVATIONS AT THE GUEST HOUSE. TRUST ME I AM NOT WEALTHY. THIS TRIP[ IS GOING TO COST ME BUT OF COURSE IT WILL BE WORTH IT. I AM A SINGLE MOM - TEACHER - THREE KIDS IN COLLEGE. I HAVE WONDERED ABOUT STAYING OUTSIDE OF CLEVELAND AND PAYING LESS. NOT SURE IF IT IS WORTH THE HEADACHE OF IT ALL.
barbwil said:
http://cms.clevelandclinic.org/body.cfm?id=142

Debbi, Didn't you receive a big packet from the clinic that is loaded with all the ins and outs of finding your way around? Check out the site above and see what is offered for facilities for your stay during your tests. Unless you are very, very wealthy I suggest you stay at the Guesthouse. It is across the (extremely busy) street from the main campus and the heart section; there is constant shuttle service (free) with parking space for you if you are driving there.

I'm sorry your diagnosis is so iffy; it's hard enough when you have a definite plan set before you for your procedures. I would think if anyone can give you the right answer to your problem, it will be the clinic.

Please keep us informed of your progress. God bless, Barb
Click to expand...
 
dj-

Right now, Joe is being taken care of medically. It is very much less than ideal. His quality of life is very compromised. But then he has about a TON of other heart related problems, which all contribute. So the pericardium restriction/constriction is only a small portion of his problems.

I hope you can have the surgery, and that will take care of things for you.
 
GoVols

GoVols

Thank you sir for the encouraging note!!! I know I am going to the right place. Thank heavens Cleveland is not too far away from here. On to the better things in life.....My son is a sophomore at Univ of Tenn so we have learned to appreciate the beauty of Orange Nation. Go Vols. There is always next year. Then again, how much more impressive can The Lady Vols be anyway??? They are incredibly awesome. Alexis Hornbuckle who plays for the Vols is from a town close to here in WV. Thanks again for the encouragement.:)
RobHol said:
Debbi,

Complex surgeries are the order of the day around here, and the Cleveland Clinic is top-rate, I understand. So don't feel alone.

I don't have anything to add to the technical side, but wanted to say that if you are a fan of the Tennessee Volunteers, as your screenname suggests, you are good folks as far as I am concerned! ;) I grew up in Tennessee rooting for the Vols, bleeding orange. The 2005 football season was rough, but they are going to get better in 2006 --- and so are you!!!

Cheers,

Bob
Click to expand...
 
You are a doll!!!!! Thanks so much! I have reservations at the Lakeside Holiday Inn ...thanks to you!! Not bad at $67 a night. Free shuttle, etc. Now I can breathe....well, I wish!! I can breathe easier. Let's just say that!! More later. There is internet service there so hopefully I will be able to report back to vr.com. I am wondering if I should plan on staying Friday night. I have a catherization scheduled Friday. My daughter is going with me so I am assuming a car ride back home won't hurt me.
geebee said:
Debbi,

Here is the rate listing for hotels around the area of the CC. The Best Hotel has a $55 rate for patients, free parking and free shuttles to the CC. Maybe this will help some (assuming you can still book a room).

http://www.clevelandclinic.org/socialwork/lodging_information_for_patient.htm#near ccf
Click to expand...
 
A stay Friday night could be a good thing. How long a drive do you have?
 
dj/utvolsfan said:
You are a doll!!!!! Thanks so much! I have reservations at the Lakeside Holiday Inn ...thanks to you!! Not bad at $67 a night. Free shuttle, etc. Now I can breathe....well, I wish!! I can breathe easier. Let's just say that!! More later. There is internet service there so hopefully I will be able to report back to vr.com. I am wondering if I should plan on staying Friday night. I have a catherization scheduled Friday. My daughter is going with me so I am assuming a car ride back home won't hurt me.
Click to expand...
Happy to help.
If you can afford it, you should stay Friday night. You are going to be very tired after all the tests they will throw at you. If you feel good later on Friday, you can always go out to dinner. Since you have a few hours of driving to get back, even if you are not driving, you should allow time to rest up.
 
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