Hi All-Scared Newbie Here

[Ross]

I'm new to the forum, but not new to heart surgery, well sort of.

In March 95, I had a repaired ruptured disecting ascending aorta aneursym. I did not fair well on that one. Anyway, the surgeon who was lucky enough to have me as the patient, had to fashion a repair for my aortic valve. as everything was torn apart by the rupture.

Here I am in Dec 01 and have just gotten the news that I'm going to be looking at AVR very soon. The Docs have done 2d doppler study, Adenosine/Cardiolite stress test, Gamma Scans and the results are
1. Severe Aortic Insuffiency
2. Enlarged Heart
3. Enlarged Left Ventricle
4. Congestion seen at the Apex of the heart

At this time, they want to do a heart catheterization and then proceed to schedule the surgery, though I've opted to try to reduce the pressures with Procardia XL, Diovan HCT, and Labetalol. The results don't seem to be going anywhere. I think I'm trying to postpone the inevitable here.

I have a past history of Pulmonary Hemosiderosis or Bleeding Lung Disease, which has left significant amounts of scar tissue in my lungs, A left total hip replacement, Open Lung Biopsy, and the actual repair of the aneursym.

I never do well in surgical circumstances. I usually go into respiratory failure, shortly after surgery. Let's just say I'm "High Risk". The proposition of this surgery has me completely unnerved. I've tried to talk to others that haven't experienced heart surgery, and while they try to help, they really don't understand what it is like.

When I had the aneursym repair, I was totally out of it from March 9th to April 11th 1995. I have little memory of the surgery, therefor, when I came to, I didn't really have any pain.

I guess I'm here to ask for all of your help in making a decision on what to do, and how others have coped with this. I'm not sleeping right at all and sometimes feel like I'm totally losing it.
I'm plain scared at the thought of this surgery and would like your help.

 

[LUVMyBirman]

Hello and welcome

Don't have answers to many of your questions. You have come to the correct place. Hang in and I am sure someone will be along shortly to answers your questions.

I did notice you mentioning that you have had bleeding concerns. Make sure that your surgeon and or cardiologist are aware of this. For the reason that a mechanical valve replacements require anticoagulation medication, i.e. Coumadin. Those with prior concerns 'bleeding conditions' usually do not do well on that drug. Something you defiantly don't want to find out after you have had surgery. You could see if a tissue valve may suit you better.

Once again, welcome and take care!

 

[Nancy]

Welcome Blebs99

Welcome Blebs99

You'll be so glad you found this site. It's great! All the people are very friendly and we all get it, or most of it, that is. We've all either been through it or have a loved one who has been through it, and then there are even some experts in their field that pop in from time to time.

In my case, I'm not the patient, my husband is and he's been through lots and lots of surgeries. He has had 3 open heart surgeries, and 2 lung surgeries and has a pacemaker. He had rheumatic fever as a teenager. He wasn't supposed to live past his 50th birthday, but he's 70 now and recovering from his last open heart surgery on July 18.He has two mechanicals and just had his mitral one repaired.

It's OK to be afraid, everyone is when contemplating heart surgery, but always keep in mind that this surgery is a lifesaver. The surgeons who do this are very, very accomplished and do this every day. They are a dedicated group.

Have a heart to heart (bad play on words, so sorry) talk with your cardiologist and surgeon if possible. Express your concerns to them and get their feedback. If they recommend surgery soon, that's what you should do. Things don't get better without it, usually.

At any rate, we're very glad you found us and hope that you'll post often with any questions or concerns. There are so many different heart conditions representated here that I'm sure you will get many answers.

We're here to hold your cyber hand and guide you through the procedure.

 

[Perrster]

Add High Maintenance to the List

Add High Maintenance to the List

Welcome blebs99,

Like Nancy says, we're here to hold your cyber-hand.

Your situation sounds very scary indeed. I hope you can get plenty of human hand-holding as well? The surgeons can do miracles, but they also need one heck of a team of players to pull it all together. That will include the team from your side too. I hope you have plenty of care-giver support to rely upon? Family? Relatives? They are just as important to your success as the head surgeon. Looks to me like more than one "heart to heart" consultation is needed.

You're at least not a surgery "virgin" like I was! I never had ANY type of surgery until I had valve replacement at age 50, not even tonsils! Talk about scared! You're young enough to do this as long as you have the support and everybody knows the "rules" and understands how the game is going to be played.

Call a time-out and get into a huddle, now.

 

[Bill Hall]

Hi Blebs - I wanted to welcome you to this site. I think you will find good people and maybe some answers.Your description of your many complications and "high risk" condition have me worried. It seems that you will have to go through this surgery sometime. If you are that worried, it should be sooner rather than later, subject to doctor's advice. If you made it through in 1995, than you should be more optimistic about this surgery. They will be prepared for your complications and would react better. Also, technology will be better six years later. Still, I think you need to come to grips about going ahead and seeing if the doctors are optimistic or pessimistic. Second opinions seems warrented and going to the best hospital is advised. Cleveland told me that they have the lowest mortality rates even though they take the highest risk patients. I don't know if this is baloney, but certainly the idea is correct. I will certainly be thinking about you and saying some prayers. Please keep us informed of your progress and decisions. And good luck with all of this.

 

[Kevin M]

It's only natural to be scared. We all are. I found that learning about what to expect helped allieviate the fears quite a bit.

You've been through a lot of surgery already, so the basics of going down and coming up are similar. As far as the pain is concerned, I can't speak from experience because I've only had heart operations, but I've heard from others that it's not as bad as many other procedures.

The pain was less than I expected and recovery was far faster than I thought.

Let us know if you have any specific questions. There is a lot of experience within the membership of this group. You will find it a great resource.

Try to relax and get used to the idea of surgery slowely. Take it in small steps and it won't seem as hard.

Please feel free to email or private message me if you have any questions or just need to talk.
Kev

 

[Ross]

Hello again
I think it's fair to tell you my real name is Ross. I don't know why I posted the screen name I use, but I did.

What has me troubled the most, is how I've been bounced around by insurances and HMO's all to land back at the original Doctors, that helped out in 95. At that time, they had done a heart cath and missed the aneursym completely. (This was done at a local hospital) By the time they caught on to what was happening, I nearly died. They had me life flighted to the Cleveland Clinic where the repair was done.

Now I'm back at the same group of Doctors that missed this to start with, and so far, don't seem to be on the same page with each other, much less me. This is unnerving in itself. I know no one can tell me where to have the proceedure done, but I'm having reserved thoughts of having it done here locally.

I was 33 when the rupture occured and I'm 39 now. (For those that didn't already check my profile)

My wife made daily trips to Cleveland from home, which is 60 miles or so, one way. At the time, I was the wage earner and she had the free time to be there. Now, things are reversed. She is the wage earner and I'm disabled. She just started a new job and it would be extremely difficult for her to make the trips to Cleveland should that be the choice.

I hope that all of you can help educate me as to the different types of valves and some proceedures that have been done. I have been looking around and see alot of the things that I'm trying to cram learn on the fly.

I have a visit with my regular Doctor on the 14th of January and back to the Cardiologist in the first or second week of February. Hopefully, I will have made some type of decision by then.

Thanks for all the warm welcome, and bear with me, as I have a nasty habit of thinking farther ahead then I type, and things don't always come out as I would like them to.

Oh yeah, Why were we humans given the ability to sneeze anyway?

 

[hensylee]

Hi Blebs - nice to see you here. Don't think I ever saw a newbie come in who wasn't scared. In fact, that's why most come in. When you can't sleep, come and read some of the previous posts and you will find others who have been scared to begin with but as time went on, they were somewhat less scared at surgery time. At least were comforted by others who have gone through the same things. Due to your last surgery, it is only natural that you are petrified, and it sure seems that you have a good reason to be. Is your dr the same as last time? If so he/she will be aware of the pitfalls and guard against it. If not, be sure your current dr has all the info from last time in order to prepare. I cannot answer your questions. I had quad bypass, not a valve replacement, but folks here in VR put up with me and I am glad they do as they have helped me immensely as I am positive they will for you, too. They can relate to your their experiences with valves, so be sure to ask ANYthing and there will be many answers and points of view. Stay with us and we will walk all the way with you. God bless

 

[RobThatsMe]

Hi Ross,

Welcome to the site. I also had an ascending aortic dissection and had emergency surgery on 3/23/00. While they were in there, they noticed that it damaged my aortic valve, so they replaced it with a St Judes mechanical valve, along with the aortic graft. Going on 2 yrs soon, and I feel great.

I don't have all the other medical issues that you have had, but would be glad to help answer any of your questions if I can. There is a wealth of information on this site, so use the search function and dig in. If you are going to the Cleveland Clinic, then you are going to one of the best! Please keep us posted and don't hesitate to ask any questions that come to mind, no matter how trivial or difficult they may seem.

Rob

 

[Ross]

Nice to meet you Rob, and everyone for that matter!

I read your story and thought we had alot in common as far as the ruptures went. Names are almost the same, March for the month, in both cases. Are you sure we aren't related somehow? Stories, while not the same, take on the same resemblence.

I was going to contact you when I get my thoughts and ideas sorted out.

I'm dealing with my local Doctors currently and if they don't seem to be working together shortly, I'm going to check and see if our Brand New Insurance won't cover a trip to Cleveland. I owe my life to God and Dr. Patrick McCarthy at Cleveland and really don't want anyone else to mess with me except him. I probably won't have the luxury of picking who gets the job though.

Anyhow, I'm in for as much education as I can handle. I don't want to walk into the hospital surgically stupid, like I have in the past.

 

[Mb]

Dear Ross;

Have read the thread of posts, and no one here would doubt for a moment that you are frightened and looking for as much information as possible. I have only two comments for you.....You have a serious illness, and I think, even with HMO's, that with some nudging (if not you maybe youur wife can advocate) you will be able to get back to the Cleveland Clinic. Certainly they can't argue who your cardiac surgeon is. I would stomp up and down, call an attorney if I had to, but I would get to where I felt I needed to be.
The second comment.........You are obviously a person of faith.....give this one to God. It's too big for you, and he can handle it. This world, and your world is unfolding as He has planned. He has shown a light on your life for 39 years....why would you think he is not watching now?
Best wishes. - Marybeth

 

[Nancy]

Hi Blebs99-

It's obvious that you have zero confidence in the medical group you had before. I agree that given these circumstances, you have every right to complain, complain, complain to the HMO, if they insist on trying to keep you there.

When this type of scenario happens, everyone loses, you, who may not be getting the best care available, and the doctors, who knowing that they "screwed up" in the past, may not want to treat you either.

In any event, this situation does not to seem to be a winning situation.

If it were my husband, I'd become the wicked witch of the West (some people think I'm that way all the time, LOL) to get him out of harm's way and into an expert's care. This is your life we're talking about here.

I wish you luck and hope that you have someone to help you with this problem.

 

[Ross]

I'm only 18 days into this insurance, so I have a lot to learn about, as far as how they work. Rest assured, I will. I noticed that they will splurge for the University of Pittsburgh, but that's all they mention in their directory.

I'm concerned more with who is going to do this, then where it's going to be done. Does anyone have any links to check physicians out? I know I came across a couple a long time ago. I figured I'd remember where they were- Well, I don't, as if thats a surprise.

As for the faith-I don't doubt that God is still with me and handling things. I have this Human problem of not trusting what I feel deep inside. In a case like this, I do feel ashamed at times, but I can't help it. Guess it's the feeling of not being able to control your own outcome. I know, I know, Let Go and keep it simple. I'm still fighting with myself inside. Gotta get over that somehow.

Thanks again to everyone, for your input so far. I really do appreciate it!

 

[Jean]

Educate yourself!

Educate yourself!

Ross,

Welcome to the site and as most everyone has said, don't worry about the scared ---less syndrome...we have all been there.

For my part the abject terror lessened as I educated myself about what was up. This site was not in existence then '99...at least I didn't find it. I went to the Cleveland Clinic site and one from Steve in Canada. Steve Goldberg, I believe it is, has written a book that was invaluable also. It was about his journey throught the valve replacement valley about 7 months prior to mine. He is around here sometimes and might post in.

I too went to the Cleveland Clinic and was totally satisfied with my surgery team and my cardiologist there. I live in Michigan so had about a 3 hour drive, but I am used to lots of travel.

Educate yourself of valve choices, surgeon choices etc. and pick the best. Then put it all in God's hands.

Good luck to you. Read the old posts...Peter Easton has some valuable ones from his search for the type of valve he chose.

 

[John & Joann]

Cleveland Clinic

Cleveland Clinic

Joann had her 2 valves replaced at Cleveland Clinic in 1971 and again replaced in 1998. She is a true miracle--Cleveland, Lima, and other doctors feel that God had more to do with her success and they had. If local doctors and Cleveland are not on the same page, I would believe Cleveland. Pittsburg is also very good. Former cardiologist from Cleveland Clinic moved back to be near his wife home in Pittsburgh. He was EXCELLENT.

Glad to help as needed!

John for Joann

 

[McCln]

blebs99

blebs99

You have come to a good place. There is nothing to cardiac catherization these days, it is used to check your arteries to make sure that they are clear. I have a aunt who just recently had stents put in, back in October. She doing fine now and sounds really good. And she has a heart murmur. I had one till September. Had AVR and feeling better and healing very well. But you have to have everything checked to be sure that there are no suprises to be forseen. You have a good team to check everything out. And AVR is not bad as it used to be. It just takes time to heal. You will be alright. Keep us appraised on your condition. We are here for you. We will help you.

Caroline
09-13-01
Aortic Valve replacement
St jude's valve

 

[Ross]

I'm going to really stuff myself full of education, talk one more time with the Doctors down here and if things are still looking as they do now, I'll be consulting Cleveland. (If possible)

Inside, I sort of knew the time would come when something had to be done, but 6 years went by way too fast! I am appreciative of the second chance. Things could have easily went in the other direction back in 95.

All the BP meds don't seem to be changing the pressures any, so I'm going to call tomorrow and see if we should go to the next higher dose of Procardia XL. I already know this isn't the cure.

 

[Scottie]

Hi Ross

Hi Ross

Hey Ross I can really sympathise with you ..we are almost in the same situation ...both facing surgery we wish we didn't have to have ...I know little about the kind of surgery you are having cause mine is slight different ...but open heart surgery is open heart surgery ....If you're any thing like me you'll feel slightly numb too ....Stay with this site ...everyone is very encouraging ...I've now see lots of people come in here ..scared at first like us ...go on to have their surgery and then come back to tell everyone how well they are doing ...It is very encouraging and everyone is very supportive ...funny to think you could have people who you have never met ...who live thousands of miles away ..praying for you during your surgery ...but that what this site is all about ..as well as helping to answer your questions ..Take care and stay in touch
Scottie

 

[Ross]

Thank you Scottie.
I don't relish the idea of being opened again, but I think alot of my fear is from all the complications I had from the last round. Of course, in the last round, I was nearly DOA before they figured out what was wrong. I hope that makes a difference. As I've stated before, I do not get along well with surgery on any level, so I'm very apprehensive about the whole thing.

I'm very happy to see others out here, talking and walking with myself and all others, that come to seek advice and friendship among those "Who know what it's like, because they've been there". It's really hard to talk to someone that hasn't been through it. God knows they try, but they really don't have a clue.

 

[Scottie]

Hey Ross

Hey Ross

Hi Ross ...you know this is a stupid thing to be bothered about ...but I hate the thought of anyone even touching my old scar ....never mind cutting it ..and the surgeon said that the new one will not be so pretty because of the old scar ...stupid the things that can bother us isn't it? !

I was a child last time I had surgery ...my parents said things were pretty bad then ...and I do hate the thought of MR Scottie going through all the worry ..and the kids too ...wish we had a magic wand and could get rid of this hanging over us ..take care
Scottie