29 years old having a AVR....any help would be appreciated

[vhmoriarty]

Thank you all so much for your wonderful insights. I was up till around 2am trying to work my way around the site as much as possible. Its hard to read by the headlines on things what you are about to read though.

Im leaning towards the Ross Procedure for I dont want to be on comadin due to my late husband also expierencing problems with blood thinners. Although if they get in there and find the Ross isnt doable, I will have the mechanical.

My concern is not having insurance as of now and having to have help through Resources through my county. That is why I dont want to lean towards the tissue cause what If i have to have it replaced in the future and Im in the same boat. Also if I have to file bankruptcy over the surgery I wont be able to do it again if the surgery is needed in 5-10 years.

 

[dick0236]

Im leaning towards the Ross Procedure for I dont want to be on comadin due to my late husband also expierencing problems with blood thinners. Although if they get in there and find the Ross isnt doable, I will have the mechanical.

.

I know nothing about the Ross Procedure. However, I do have a lot of experience with coumadine/warfarin and have not found the drug difficult to handle IF it is managed properly. I wish you a successful outcome and speady recovery.

 

[vhmoriarty]

Thank you so much D for the encouragement. My late husband was awaiting a heart transplant and had been on coumadine for about 6 years. I know when he would become sick or ate the wrong things his INR level would get outta wack and he would have to go back and forth until it became therapuetic.

My next question for everyone is:

How has your life changed since the surgery?
Are you still tired or have symptons?
If you have a mechanical valve, do you hear it at all?
Have you received limitations due to the surgery or have you returned back to life before?

What was the most benefical thing you received by getting your valve? Of course you are still alive, but what is the advantage ie: able to run, more energitic, etc.

 

[cuoricino]

Hello vhmoriarty!

It sounds like you've already been through entirely too much for someone your age and I just wanted to let you know that I'm thinking a lot of positive thoughts for you and your upcoming surgery.

I'm 26 years old and about 3 weeks ago I had AVR surgery and ascending aortic aneurysm repair. I also posted a thread in this section when I was undecided about valve choice (especially because of my age) and was also considering the Ross procedure although I decided against it in the end. You'll find a lot of good opinions and information here.

I personally decided to go with a bovine valve and I'm very pleased with my decision. But, as many people have pointed out, everyone's deciding factors are different and - unlike you - I would like to have children and did not want to deal with the problems coumadin could bring to childbirth and pregnancy.

There was a 29 yo girl in my ward who had had the same surgery days before me who told me that she had chosen the mechanical route because she didn't want another surgery ever again. So, it's all up to personal choices.

It's a bit to soon for me to tell you how my life has changed post surgery because I'm still healing. But I can tell you that the very first visit I had with the physical therapist the day after surgery in the ICU, I already felt a difference in my breathing. I was often short of breath pre-op and found it difficult to breathe deeply. When I was visited by the PT and we did some breathing exercises, it was like my lung space had doubled and despite the soreness I felt in my chest, it was SUCH a great feeling. They gave me a breathing apparatus thingy (I think that was the technical name...) to do exercises with at home and I'm getting better every day. Amazing!

Anyway, before this post turns into a novel, please private message me if you'd like to have an opinion from a youngin' like you. I'd be happy to share my experiences.

ciao

 

[Bob in Colorado]

Hi There.

You are asking great questions and you will have lots to think about. First, please take a deep breath, because everything is going to come out okay. Remember this, there is no bad choice regarding the valve, just tradeoffs as you are seeing.

Al Capshaw and the other have provided great summary. Im my case, I had a tissue valve when I was 48, but had to have it replaced just 9 years later. My surgeon pointed out that tissue valves can only be inspected, not really tested, and each one is slightly different. My second valve is mechanical. I am just 4 weeks out and back to work and feeling very good. Given your symptoms, I would say that you will feel a lot better after surgery!

Don't worry about the surgery itself. If you have a good surgeon, things will go just fine. That is their job.

 

[Lynlw]

Thank you all so much for your wonderful insights. I was up till around 2am trying to work my way around the site as much as possible. Its hard to read by the headlines on things what you are about to read though.

Im leaning towards the Ross Procedure for I dont want to be on comadin due to my late husband also expierencing problems with blood thinners. Although if they get in there and find the Ross isnt doable, I will have the mechanical.

My concern is not having insurance as of now and having to have help through Resources through my county. That is why I dont want to lean towards the tissue cause what If i have to have it replaced in the future and Im in the same boat. Also if I have to file bankruptcy over the surgery I wont be able to do it again if the surgery is needed in 5-10 years.

IF you don't have insurance, make sure IF you get a Mechanical that you have a way to take the meds (very cheap) but also have the testing done for the coumadin. I'm not trying to talk you into or out of anything, but I don't think filling bankruptcy would stop you from having future surgeies, and chances are the whole insurance scene will probably be changing soon and it will be easier to get insurance people with pre existing conditions can afford. (I hope since that is a huge concern of mine, with Justin being 21 and off our insurance soon)

I am sorry to hear about your husband, you certainly have been thru alot, you must be very strong.

ps IF you choose to get a Ross, just be sure you go to someone that has alot of experience doing the Ross. Altho I know your not having insurance will probably limit your choices. IF you can't go outside your state, I don't know which hospitals by you are the centers that do CHD surgeries, From what I know some of the CHD surgeons have the most experience with performing Rosses. I would probably start there.

 

[Lynlw]

Thank you all so much for your wonderful insights. I was up till around 2am trying to work my way around the site as much as possible. Its hard to read by the headlines on things what you are about to read though.
QUOTE]

I wanted to add, IF there is something you want to read about specifically, if you go to "search" in the blue bar and type in "ross" of what you want to read about, there also is "advanced search" which is good for a couple word discription. to get to adv search click on the little triangle next to search and at the bottom is adv search, click on that.

 

[dick0236]

Thank you so much D for the encouragement. My late husband was awaiting a heart transplant and had been on coumadine for about 6 years. I know when he would become sick or ate the wrong things his INR level would get outta wack and he would have to go back and forth until it became therapuetic.

My next question for everyone is:

How has your life changed since the surgery?
Are you still tired or have symptons?
If you have a mechanical valve, do you hear it at all?
Have you received limitations due to the surgery or have you returned back to life before?

What was the most benefical thing you received by getting your valve? Of course you are still alive, but what is the advantage ie: able to run, more energitic, etc.

I'm sorry about your husband. Your comment that he would "go back and forth until it became therapuetic" may have been caused by his doc not being very good at managing his INR. I have also had that problem from time to time.

My life has not changed. I did some smart things and some stupid things before AND after the surgery.
I have no symptons and my energy level is hi considering my age.
I havn't heard the valve for 40+ years.
My only limitations have always been "self-imposed". It is natural to consider the "valve" before doing some things. I've never had a doctor place any restrictions on me.
The surgery has benefited me in many ways. I've seen my two sons grow from little children to men.....four grandkids from 8 to 24 and one greatgrandkid(so far)...two "reasonably successful" careers....one marriage of 52 years(so far) etc., etc. I am pretty sure none of this would have happened, had I not had the surgery.

 

[aussiemember]

Hi Valerie,

Welcome - was going to write a reply but just realised there is a posting in another thread as well

 

[vhmoriarty]

Thank you to everyone who has left me messages. I really appreciate them. I am really anxious and nervous about tommorow (Wed). I go to speak with the surgeon about which valve might be the best for me. While I was pregnant I wanted the tissue valve due to not being on blood thinner for the rest of my life. But after research I have found that I dont want to have surgery again in the future to replace it. I know modern medicine will change and it will be like a in and out thing by the time I need it replaced, but the worrying still scares me.

Im leaning towards the Ross, but not sure since I havent found alot of people that have had them. But the ones who I have found say its worth it. I did find out that my doctor has done tons of them and is the only one in East Tennessee that performs them so that is a plus for me. Also he attended Texas Heart Institute which is where I had planned at first to take my son that passed away.

The mechanical valve seems right as well. I just will have to wait till tommorow to find out more. I think I will ask if there is more tests that need to be done. I dont want to get into surgery just to find out that there is more that needs to be fixed while they are in there. I like to know everything before it happens. Yes I am not a Procrastinator, lol.

Thanks everyone for their kinds words and keep me in your thoughts tommorow.!

 

[Lynlw]

I know your appt is tomorrow, if there are any specific questions you were trying to find out but haven't let us know, I'm sure someone can help

 

[vhmoriarty]

I found a sticky on the pre-surgery forum with alot of questions on it. Are there any specific mandatory questions I should ask? I may take up his whole block tommorow with everything I have, lol.

 

[Lynlw]

I found a sticky on the pre-surgery forum with alot of questions on it. Are there any specific mandatory questions I should ask? I may take up his whole block tommorow with everything I have, lol.

IF it is that big long list, you might go thru it and seem what questions are important to you. I thought that list was rather long for a surgeon to answer and alot of them (not related to the actual surgery), I would ask other people, either a member of their staff or the nurses ect(like hospital policy on visators,computers ect) ect. The surgeons usually don't have tons of time, and I preferred to talk longer about the surgery. The way we tend to do it is have some specific questions , but let the surgeon talk first, they are usually pretty good at this and will answer most question in their description before you even need to ask them.

 

[vhmoriarty]

These were the questions that I thought might be appropriate to ask for my first visit with the surgeon. Let me know what you think.

1. How high risk is this surgery?
2. How many surgeries have you performed?
3. What is the typical way of your surgery?
4. What is your mortiality rate?
5. What specific valve do you favor and why?
6. What are my specific risks during the surgery?
7. What type of long term care is needed after valve replacement?
8. How long will the typical hospital stay be for my specific valve?
9. Will we have another meeting before surgery?
10. How does the heart lung machine work?
11. Are there less invasive surgery procedures you perform?
12. What types of anesthia and pain meds do you use after surgery on patients?
13. Do I need any special preparations before surgery?

 

[Lynlw]

These were the questions that I thought might be appropriate to ask for my first visit with the surgeon. Let me know what you think.

1. How high risk is this surgery?
2. How many surgeries have you performed?
3. What is the typical way of your surgery?
4. What is your mortiality rate?
5. What specific valve do you favor and why?
6. What are my specific risks during the surgery?
7. What type of long term care is needed after valve replacement?
8. How long will the typical hospital stay be for my specific valve?
9. Will we have another meeting before surgery?
10. How does the heart lung machine work?
11. Are there less invasive surgery procedures you perform?
12. What types of anesthia and pain meds do you use after surgery on patients?
13. Do I need any special preparations before surgery?

THat looks good, I'm not sure what you mean by#11, do you mean is the a min invasive way to do your surgery, or surgery in general?

also #& Are you talking about the follow up after you are healed (like yearly check ups) or during this recovery?

 

[vhmoriarty]

So everything is going as scheduled. I will have my Ross Procedure done on 11/13/09. My husband to be will try to keep everyone updated.