Just told I will need surgery #5...

shop deals on amazon
Shop deals on ebay
Advertise with us
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
kerri73

kerri73

Well-known member
Joined
Aug 11, 2005
Messages
179
Location
Omaha, Nebraska
Hi all!

I've been on here off and on for a few years, now, but don't post very much - this is my first post in the pre-surgery forum!!

Some may know my history - in a nutshell, I was born without a wall between my atriums, had 3 surgeries by the time I was 5 years old to build/re-build the wall/septum, and then at age 24 had a 4th surgery to replace my mitral valve with an artificial one.

My doctors have been watching a gradient across my artificial valve (now 11 years old). I've been told that the time for surgery is nearing - they're scheduling a heart cath to get better readings, but they're seeing enlargement in one of my chambers (forgive me I can't remember which, that whole phone conversation was a blur!)... so it must be fairly high now. After the cath, we'll know how high, how soon we're looking at surgery, etc etc etc.

I've always taken this sort of news as a "challenge"... but we just bought a new home and I was ready to start a family, and this just scares the heck out of me!! I just need you all, like you always do, to reassure me that this will be okay.

I'm not sure if I'm more scared of the cath than the surgery. :) Anyone with experiences on a cath? I was a small child with no memories of my previous ones!!

Who else out there is at 4,5+ surgeries? I guess it scares me that the more you have, the more risk is involved.

One of the ideas the doctor gave me to think on was the possibility of going tissue this time, just to have children without the coumadin risk, and then switch back to a mechanical after that... thoughts?

We definitely have a lot of things to decide and think on between now and whenever the surgery ends up being... but I'm glad I have you all to come chat to about it - you definitely know where I'm coming from!

Thanks for listing!
Kerri :)
 
My husband had many, many caths during his lifetime with no ill effects at all. He was "put out" for most of them or at least given twilight sleep, and remembered nothing. The worst thing was lying still for a couple of hours with a weight on the groin area after them while in recovery.

I don't remember him complaining about the groin ones at all except for a little soreness in the groin area. The arm and neck ones he was more awake with and bothered him more.

He had caths where they accessed the groin (the usual), his arm and his neck (swan ganz). Swan one is not much fun.
 
Hi Kerri,

Boy, you sure have been thru the mill and beginning at such a young age. :(

You say that at 24 you had your mitral valve replaced w/a mechanical one ---- how old are you now if I may ask? Your age of course makes a big difference on whether it's more practical for you to go tissue or mechanical.

I haven't had a 4th OHS yet, but I've been told that I need one & for now, they are just watching me very close due to the high risks I present.

I've had 5 or 6 caths in my lifetime & I've never experienced any real problems. The last time I had one was a little over a month ago & it was over & done before I even realized it. I spent the night at the hospital & was allowed to go home the following day. My INR was screwed up a little bit & I had to inject myself w/Lovenox injections for a few days but soon things were back to normal. So don't panic about your cath ---- I'm sure you'll do just fine.

Do you already have a surgeon in mind for your surgery? Make sure you go with one that has extensive experience on re-ops even if you have to travel out of your immediate area.

You'll be in my prayers & please keep posting and let us know how your cath comes out!

Take care! :)
 
Kerri, I'm sorry you are now looking at number 5. Don't sweat the cath. The last one I had in April before my surgery caused me a little anxiety becuase I had always been given something like valium during the cath but they didn't do it this past time because I was having an ep study done and they said they get better results if they don't give you anything. I was scared it was going to hurt....but it turned out to be an non-event. The worst part was lying still for so long...my back started to hurt.

I don't really know what to say to you in the great debate about tissue vs. mechanical. I have a tissue because it was the valve that is the best for my situation. If you seriously want to have children, tissue may be the best for you at this time. Before I made that choice however, I would have a conversation with your surgeon about facing another heart surgery to replace that tissue valve when it needs it and I would also consult with your cardio and maybe a high risk ob/gyn to make sure your heart could handle the load of a pregnancy. Best wishes to you and I'm sure whatever decisions you make will be the right ones for you.

Kiim
 
Kerri, sorry to read that you find you are facing another surgery.

Before deciding on what type of valve to choose, I'd ask the surgeon to look at your previous surgical report and see if there are any notations on scar tissue etc, as well as information from the cath you'll have to see if it would be advisable for you to go tissue to have a pregnancy and then have another surgery later. Then I'd consult with your cardio and a high risk OB to see what they have to say about you bearing bio children.

After gathering the info - then sit and make a list of your priorities for your life, from most important to least and figure out how things work into that list - just a simple little excercise. ;) I think you'll have a good idea of what you should do. And sometimes what you know you should do isn't what you want to do. Life - in otherwords.

Best wishes.
 
I'm not sure if I'm more scared of the cath than the surgery. :) Anyone with experiences on a cath? I was a small child with no memories of my previous ones!!
Click to expand...

I was afraid of the cath and really found it not to be a problem. The idea was scarier than the reality. I was initially told that I would have sedation - oral valium, with the additional option of being pretty much asleep if I wanted - but when I asked whether the valium was mandatory I was told that it was my choice. When I realized that the valium was for anxiety and that the procedure was not extremely bad or painful from a physical standpoint, I decided not to have any sedation, even valium. But that was just my personal preference - there are options and it's important to do what's most comfortable for you. In deciding how much sedation you want, be aware that the procedure lasts about an hour. (I expected it to be shorter but was in the procedure room having one thing or another done to me for about an hour.) Would you want to be "all there" for that long? Would it bother you to know that they're inserting and removing a catheter, even though you largely can't feel it? That's a personal decision. Also, your doctor may have protocols that he or she prefers or insists on. It's good to know that in advance.

In my experience, the physical discomfort was not major - they numb you with a local anesthetic for the catheter insertion, you have an IV, and you tend to feel tremendous heat and some heart fluttering when they inject the dye. Afterwards, you will have either a period of hours on your back with pressure applied to the insertion site or a collagen plug. You probably want to ask which it will be. I was happy to get the collagen plug because I was able to leave the hospital after a few hours (and I really wasn't "flat" on my back despite what I'd been told in advance).

Good luck! The cath is really a very routine procedure these days. (And good luck with the rest of it as well.)
 
Thanks, everyone, for your posts! I feel much better about the cath thing (we tend to sweat the small stuff, huh?) :)

I'm 34 now - will be 35 very soon. So having kids is pretty important at this stage in my life - it's kind of a "now or never" - for me, at least. :) I know anything's possible, though!

The cardiologist brought up the tissue idea and didn't seem scared off by it - I'd never really given it much thought. Though I'm sure we'll have more of an in-depth conversation about all the options once it's decided what time period this surgery needs to take place in.

As for surgeons, I'll most likely stick to one here in Omaha. Most likely our Children's hospital - I've heard such phenomenal things about their surgeons, and their specialty is congenital defects. All my other surgeries have been done at the Nebraska Med Center here, which is also fantastic.

Lots of things to think about! Thanks again for all of your advice! I'm sure I'll find more questions soon. :)
Kerri
 
Kerri,

You have been through so much and another challenge to meet. You surely will do well, and go on to enjoy life to the fullest.

I am by no means an expert but I have read many times that if a woman plans to bear children, tissue is normally the way to go. Can be done with mechanical/coumadin regime, but is riskier. If I am wrong, someone will correct me. By all means, consult with the doctors and all the medical authorities you can. An unusual factor is the number of surgeries you already have had, so that may factor in too.

Anyway, I wish you all the best, and will be sending my best vibes and prayers.
 
Hi Kerri -

Regarding the cath, you would want it done in a facility where they do a lot of them with a high success rate and you would want your doctors who perform it to have similarly high experience and success. I've only had three and I've never had any significant problems. They were all through the groin, and two only left small incisions, and one only left two tiny holes.

Regarding the surgery, I'll just tell you one special thing my surgeon did for me that I haven't read much about here. Because I received a tissue valve, he put some kind of special surgical material in between my heart and my sternum before I was closed back up, to reduce the possible scarring and attachment of the heart to the sternum, in anticipation of an eventual reop.

You have my best wishes and I'll be following your experience with the highest hopes. Take care :) .
 
Hi Kerri ~ Just wanted to reiterate what others said. The cath is not painful at all. I was given IV Valium and next thing i knew it was all over. Piece of cake!!
I'm still waiting to see what i'm having done...if anything, it will probably be a percutaneous aortic valve. I still have to wait several weeks to see if i even meet their criteria. Then, even if i do, it is a blind study by the Food and Drug Administration, so i still might not get it done...a computer will decide if i get the percutaneous valve, a valvuloplasty or just medicine. The nurses at Cleveland Clinic said it will be just like a flip of a coin to decide what happens to me. I hope it's the valve, as the other 2 options won't really help me for that long.

I am so sorry you've had to go through so much. Good luck at deciding what type of valve to have.

My best wishes and prayers are with you,

Dawn-Marie
 
kfay said:
Kerri, I'm sorry you are now looking at number 5. Don't sweat the cath. The last one I had in April before my surgery caused me a little anxiety becuase I had always been given something like valium during the cath but they didn't do it this past time because I was having an ep study done and they said they get better results if they don't give you anything. I was scared it was going to hurt....but it turned out to be an non-event. The worst part was lying still for so long...my back started to hurt.

Kiim
Click to expand...

YEP, I understand the "Back Pain during a Long Cath (such as for angioplasty, etc.). I had the same problem during an angioplasty. Eversince, I asked the assistants to fold a Hand Towel Lengthwise 2 times and pull it through, under the small of my back. I also ask for a Pillow under my Knees. MUCH more comfortable. I don't understand why that is not standard procedure (well, yes I do, to save THEM time) and not at least 'offered' to patients who are concerned about possible Back Pain.

'AL Capshaw' (Been There, Done That, Umpteen Times)
 
Susan BAV said:
Hi Kerri -


Regarding the surgery, I'll just tell you one special thing my surgeon did for me that I haven't read much about here. Because I received a tissue valve, he put some kind of special surgical material in between my heart and my sternum before I was closed back up, to reduce the possible scarring and attachment of the heart to the sternum, in anticipation of an eventual reop.
Click to expand...

Gee wiz, I wish my surgeon's had done that to me Susan !!! :(
 
Sorry to hear that your Mitral Valve is failing Kerri.

If you don't mind saying, what kind of artificial valve do you have now?

I concur with the others, a Tissue Valve offers the Lowest Risk for future pregnancy.

As part of your Long Term Planning, I recommend that you meet with a Surgeon experienced in High Risk Re-do's, both about surgery #5 and Valve Selection, AND to get his thoughts about surgery #6 to replace a tissue valve once you have had your children.

IF the risk of a 6th surgery seems 'too high' you may want to consider a Mechanical Valve for OHS#5 and Adoption. THAT is a decision for YOU and Your Husband to make, with input from your surgeon and perhaps a high risk OBGYN.

I also recommend that you get copies of ALL of your EchoCardiogram Reports (and other Test Results).

Good Luck making a fully informed decision.

'AL Capshaw'
 
I have had a heart cath. As most say here, no pain. The worst part was laying flat afterwards. So sorry you are looking at OH#5. Best of luck to you and your valve decision.
 
OMG, I can't even think what it would be like to be facing OHS #5, even if most of them were done before you can remember too much! Maybe your young age at the ftst ones is a good thing, as I understand that kids heal much, much better than adults, and you may have less scar tissue because of that.

As for the cath, I was totally freakin' freaked out! they gave me so much "joy juice" (their words, not mine) that I more or less slept through the whole thing, and I got plugged afterwards!
 
Susan - that's cool what your surgeon did for you!

Al, my valve I have now is a St. Jude's.

Ok, so I feel much better about the cath, at least! I did talk to a co-worker of mine who I'd heard had a bad experience (curiousity killed the cat, you know). In her experience (which her dr said was very rare), the next day she went to put her shoe on and heard/felt a pop. I can't remember if she said there was much external bleeding but her whole leg turned purple!! I can't imagine. Something like that would probably happen to me too - she just said to take it easy for a couple days afterwards. :)

I'm still waiting to hear when my cath will be. The suspense!!

Anyway, thanks again everyone!
Kerri
 
Thanks Kerri.

I *assume* you mean a St. Jude Mechanical Valve (?).

Did your Cardiologist give a reason that the gradient would be increasing across this valve?

The valve itself 'should' last way longer than anyone's expected lifetime. Pannus Tissue Growth can impede leaflet movement which is one possible explanation.

It would be Very Interesting to many readers (especially those of us with St. Jude Valves!) to know the failure mechanism.

Did you request a copy of your Echocardiogram Report ?

'AL Capshaw'
 
Just want to add my welcome.

Just want to add my welcome.

Hope to hear all goes good. The CATH is a cake walk. The lady 2 screens down in the PRE OP room was FERAKING about something and I ALMOST got up and left.:eek: They gave me some kind of MAGIC pill and I didn't care any more. Actually got to watch the contrast go through my CLEAR Coronary Arteries. :cool:
I know how important having kids is to women. My wife had problems and we wound up doing the ADOPTION thing. That would be a way to avoid #6.
 
You must log in or register to reply here.

Latest posts

Back
Top