What should I expect the second time?

[CindyWilson]

Hello everyone, my name is Cindy and I am 46yrs old. I am so glad to have found this site. I have been reading everyones post and I am hoping this is where one post from. I was missed diagnosed for about a year I went to my third primary doctor who sent me for an echocardiogram. The test was set for next thursday (April 12, 2007), however, tuesday (April 10, 2007) I ended up in the er in complete heart failure. My mitral valve was pretty much nonexistant. I had an echo, heart cath, and surgery MVR. I had no idea what was happening. I was givin a porcine heart valve. The hospital I went to was a very small hospital they were not going to do the surgery but I was not stable to move. I had sever pulmonary hypertension. The cardiologist on call did not want to put me on the heart cath table or the or table was worried about my lungs. Thanks to the greatest pulmonologist he made the cardiologist go forward told the cardiologist he would take care of my lungs to do what he needed to do and find a surgeon. Well things went great, surgery wasnt as bad as the anixity. I felt great for about 5 weeks then things started going down hill again. I found a new cardiologist and he is diagnosing me with severe Aortic regurg now. He wants to wait atleast 2 years between surgeries. Wasnt sure if we were going to make it cuz I was not stable with blood pressure, heart rate, and amount of fluid I take on, I am easily fatigued and out of breath. Now its been 1 and 1/2 years and I am much more stable still fatigue and sob. However, the echo last week shows problems with the new valve as well. He noticed it 6 months ago and it is getting worse. Now we maybe looking at replacing both valves mitral and aortic with mechanical valves. He said he would like to wait till 2010 if we could baby me with medication. He claims he doenst want me to get as sick as I was last time. I sure hope not the waiting is not fun. Not looking forward to coumidin. I hear the diets and dosages get complicated. I was wondering if anyone else has had more then 1 surgery and if yes how long was it between surgeries? Any advise would be helpful.
Thanks
Cindy

 

[Ross]

Not looking forward to coumidin. I hear the diets and dosages get complicated. I was wondering if anyone else has had more then 1 surgery and if yes how long was it between surgeries? Any advise would be helpful.
Thanks
Cindy

Cindy you just walked into the best possible place to alay any of your Coumadin fears. About 90% of them are myth and unfounded. Please come down to the anticoagulation forum and ask whatever you want to know and also make use of www.warfarinfo.com which is run by Al Lodwick, a certified professional anti coag expert and pharmacist. Also please read the stickies at the top of the anticoag forum.

Your second time around will be a little harder to recover from. Each time it gets more and more difficult, but given time, you'll be fine.

 

[CindyWilson]

Thanks Ross,
I will definetly check out the anticoagulation forum. I wont actually start taking it until after my next surgery. Not sure when that will be. Do you have a mechanical valve? and have you had multiple surgeries? I have not been able to work since my first surgery do you think i will be able to go back after my next surgery?
thanks again for your reply

 

[Ross]

Well only God can tell you the last part of your request. Most people can return to work and life as a whole even after their 4 surgery.

I first had a ruptured ascending aortic aneurysm. It pretty much wiped out my aortic valve, but the surgeon repaired and resuspended it for use. I got 7 years out of it before I had to have it replaced. I did not want to go through another surgery, so mechanical was my choice. There are no guarantees, but it's the best bet at avoiding any more.

I have other issues with my lungs, so I'm disabled, but if it were up to only heart problems, I'd be working still. Nothing wrong with my heart as far as function goes.

The problem with Coumadin is, most of the people that are supposed to be the pro's, don't have a clue how the drug works or how to dose it correctly. We are a new breed here, self testers and some self dosers. We can straighten most everyone out with only a few exceptions. Never let anyone tell you to change your diet! With Coumadin, dose the diet you eat, don't diet the dose of the drug your on.

 

[CindyWilson]

thanks so much ross,
when my time comes to using coumadin i am certainly using this site for my questions. i hope this site remains going. i am so glad to have found this site.

 

[Bigheartedgal]

Cindy,
I too am relatively new to this amazing site. I am so sorry to hear about all that you have been through. I have learned to be my own advovate with regards to my health with 2nd 3rd opinions, several consults with various clinicians and my own research. One suggestion I would make is to get an opinion on things from a cardiothoracic surgeon on your recent situation not just your cardiologist. Since he/she will be the one that ultimately does the surgery they may have different opinions on timing. Sending good thoughts and well wishes your way. Take gentle care.

 

[Cooker]

Hi Cindy and welcome to the zoo ... I can't help with the multiple surgeries but I will tell you the same thing most will .... coumadin/warfarin are NO big deal ... I have had zero issues .... Wishing the best and again, welcome

 

[ChuckVSP]

Cindy,

Sorry to hear you have to go through this again so soon. I am a two-timer, having first AVR at age 19 in 1982, and he second surgery in 2001, at 38. The second time (both AVR, MVR, and aortic aneurism repair) was a little more difficult recovery for a few reasons. One, being nearly 20 yrs older, another being grossly overweight (nearly 450 pounds). Thank God for morphine and percocet. Better living through chemistry!

Both times around, I have had mechanical valves. Which means I have taken coumadin for quite a long time. Like Ross says, dose the diet, not diet the dose. Most diets change some due to time of year, etc. I garden, which means fresh greens and so on, so my dose changes periodically. No big deal, just means keeping a check on PT and making minor adjustments. My insurance and I are still arguing over home self-testing, so I still use the coumadin clinic at my cardio's office. Those folks are great at keeping me in-line as far as correct dosing. One large piece of advise: NEVER, EVER, EVER run out of or quit taking coumadin with mechanical valves.

Anyhow, glad you found this site, take care, and God Bless.

 

[ottagal]

welcome

welcome

Hi Cindy,

So glad you found us. I can't help you with your questions, but wanted to wish you a warm welcome. As you can see there are many knowledgeable members who are willing to answer your questions. Keep us posted an good luck!

 

[ALCapshaw2]

Welcome to our World Cindy !

I second Ross' recommendation to read the 'sticky's' at the top of the list of threads in the Anti-Coagulation Forum and Al Lodwick's website www.warfarinfo.com

When it comes to Mechanical Valves, MY first choice is the relatively new On-X valves which have several technological improvements over earlier designs. See www.heartvalvechoice.com and www.onxvalves.com for details. You can also contact the company directly for answers to any specific questions you have (or ask us). The On-X contact person can tell you the names and contact information for Surgeons who use their valves in Texas.

All this reading will keep you busy for a while but you will be much better informed after looking it all over. Feel free to post any questions for us as they come to mind.

For repeat surgeries, you would be best served by a Surgeon who has lots of experience dealing with Scar Tissue (from the first surgery). There are several Excellent Heart Surgery Centers in Texas.

'AL Capshaw' (CABG and AVR surgeries)

 

[Jkm7]

Hi Cindy,
Sorry to hear all you have been through and what you are facing.
I had a second OHS four years after my first. I went through the second much easier than the first......considerably so. I had mitral valve replacement with bovine tissue valve. Out of CICU in less than twenty four hours and home five days after surgery. I was driving in just three weeks (local, short rides.) The stress of knowing you face another surgery is heavy but hopefully your experience might be like mine and you go through it very much easier.

I had my surgery at Mass General Hospital by a hugely experienced surgeon. He was extremely comfortable about this being my second OHS and scar tissue was not a challenge. This was the same surgeon who did my first OHS. Experience of surgeon and quality of the heart center and staff really do make a considerable difference.

I only required a brief time on coumadin post op...... very common for tissue mitral valve replacements.

This wonderful group will help you with the coumadin issue and I think you will find it much less of an issue than many people, including doctors, make it out to be.

 

[Dawn-Marie]

Hi Cindy ~ I, too, cannot help you with your questions about Coumadin, as i don't have to take it. I just wanted to extend a warm welcome to the site. Sorry for the reason, but it's nice to have you here. Even though i can't help, there are plenty of people here who can. It sounds like you have good doctors who are doing everything in their power to help you. My father was on Coumadin for years and never had much in the way of problems, except for bruising sometimes if he fell (he had Parkinson's Disease and would fall sometimes). Best wishes and God Bless. Dawn-Marie

 

[hall]

Hi Cindy. I can not help you w/your questions but I did want to welcome you to this site. Ross is right .....people here, know their stuff and will help you in any way they can. I am sorry to read you are having so much trouble. Wishing you the best of luck and looking forward to hearing from you.

 

[CindyWilson]

Hello everyone, I want to apologize for not responding sooner. I'm not sure if it was the site or something with my end but I haven't been able to pull up the site all day.
Thanks y'all for welcoming me to the site I do see there are lots of acknowledgable and caring people here. My cardiologist and I have talked about the scar tissue issue. That is one of the reason he wants to wait as long as possible before next surgery. He also gave me a surgeons name who I will meet with eary next year.
JKM7 thanks so much for your post it is nice to hear someone had less trouble. I believe I will be healthier going into the next surgery now that I see cardiologist every 3 months and take several heart medications. Plus I have been there and am better now so I am my own success story. My family and friends the many many prayers I feel them behind me. Also I now have this wonderful website. So many knowledgable experienced people to turn too. ty y'all

 

[pamela]

Hi Cindy,

I have had two surgeries and the second time around was an easier recovery than the first. I credit this to having the same surgeon work with me the second time. He was aware of my proclivity towards poor healing and acceptance of the dissolving stitches and also rewired my sternum so that the edges and ties were better placed and neater.

I take coumadin, now, for different reasons than my heart but being anti-coagulated for clotting issues in my leg is the same as for a mechanical valve just not as critical.

Has anyone drawn blood to culture for infection? I hope endocarditis isn't an issue but since your valve has early failure and a few of your other symptoms can arise from that, I think it should be ruled out as a cause. I'm not a medical professional, I feel a concern over your situation, though, because I've heard about other people who have suffered surgically induced endocarditis and you sound hauntingly familiar.

I'm sorry if I've misunderstood your posts. I simply had to add that my second OHS was easier to recover from and even though I didn't relish the prospect of having it, I wasn't as scared going into the OR as I was the first time. I chalk it up to experience, better the demon you know ...

Take Heart,
Pamela.

 

[Ross]

thanks so much ross,
when my time comes to using coumadin i am certainly using this site for my questions. i hope this site remains going. i am so glad to have found this site.

This place has been here since 2001. It's Hanks and actually, all of our desires that it's here until the end of the internet.

 

[John & Joann]

Hi Cindy,

My wife Joann had 2 mechanical valves in 1971 and they were replaced in 1999. She also had 3 bypass the second surgery. COUMADIN is not a problem. Joann has lived for 36 years, 11 months without any real issues with coumadin. The second surgery is much more difficult that the first surgery due to scar tissue, age, and other risk factors.

We would be most pleased if you sent a private message, etc. Also available via telephone at your convenience.

Beautiful Lima, Ohio.