Hi from a (sort of) Newbie

[LittleOwl]

Hi Everyone! Ya’ll may remember my mother from the forum back in late 08/early 09 (Big Owl). She found this forum VERY helpful when she was preparing for her AVR that took place in April of 2009. I posted on here a few times with regards to her surgery and the progress, and my entire family was overwhelmed with the outpouring of support. Now I am the one in need of some support and help…

A little background on our family history and diagnoses:

1995

• My mother had quadruple bypass at the age of 47, diagnosed with Familial Hypercholesterolemia (FH)
• It was found that I had FH as well (I was 16 years old, 95 lbs, and my cholesterol was 380)

2006

• My mother’s cardiologist noticed the first signs of AV issues – she had moderate Aortic Regurgitation and Stenosis. She was told surgery would be needed “down the road”

2008

• Mom’s AR had gone to severe – surgery was imminent

2009

• 4/9/09 mom had her second OHS at the age of 61. AVR with mechanical valve

So that brings us to today. I am 31 years old and have been on medication since I was 16 years old, and I have remained extremely active. I train with Team in Training/Leukemia & Lymphoma Society and complete century rides (100 mile bike rides), triathlons, and marathon events.

At my annual cardiologist appointment this year, they did an echo (my last one had been 5 years ago) because they noticed a heart murmur (something I have never had before). And low and behold, I have AR as well… enough to make the guy doing the echo bring in my cardiologist, who looked at the screen and said “Oh Sh*t!!” (Always comforting to hear, right? Especially when your shirt is off!). As it turns out, I have mild/moderate AR.

We are all understandably freaked out considering my mother’s progressed so quickly, not to mention mine is already mild/moderate after showing no sign of this on previous echoes and exams. The valve itself is hardened, but the leaflets are good, so right now we are doing the “wait and see” approach. My next echo is in March, and we should know a lot more by then. My nurse practitioner happens to be the mother of one of my best friends, and I asked her to be frank with me. She basically said it’s not a matter of IF I will be having surgery, it’s a matter of WHEN. Genetics are fun, huh?

I am currently slightly symptomatic – just slight shortness of breath, mild dizziness, and infrequent palpitations/arrhythmias. My doctor has told me to continue all of my training because it will help me drastically in the long run. He teases me that when I get the new valve, I will have an advantage over the other people in my age group :smile2: Obviously we are hoping that mine will not progress as quickly as my mother’s did, and that I can live my life “as is” for as long as possible. But in the mean time, I was hoping you could all give me a little extra perspective, because I have not been able to find a lot of statistics out there…

• If you have/had AR, how quickly did it progress from time of diagnosis to time of surgery?
• How old were you at diagnosis?
• How old were you at AVR?
• And for the ladies, did you have this done before or after you had kids?
• If you had this before you had kids, I will have more questions for you down the road

I know in the grand scheme of things, I am so very lucky. I have an amazing cardiologist who is a part of one of the best heart hospitals in Texas (Baylor Heart Plano), and my issues are 100% treatable. Having done so much work with the Leukemia & Lymphoma Society, I know so many people battling blood cancers who wish their cure was a surgery – even one as daunting as OHS. But for now, I’m freaked, and doing a boatload of research so that I can be prepared for whenever that surgery day may be.

Thanks in advance for your help and input! Ya’ll are the best!!!

 

[Lynlw]

Hi, L.O. I remeber your Mom well.(Please tell her hello) I'm sorry to hear your are having the same problems too, but much younger. I didn't have surgery my 22 year old son has had quite a few. So I can't answer most of your questions, but wanted to say, since you asked about having children. MOST everyone recomends tissue valves for young women who want to have their own children. It is just much safer for bother the Mother and Baby.
Also for how long between the time when people learned about the Valve problem until they needed surgery, is really different for everyone, some people waited decades, others weeks.

 

[scott.eitman]

•If you have/had AR, how quickly did it progress from time of diagnosis to time of surgery?
Identified at 24 years old and had surgery 10 years later.
•How old were you at diagnosis?
24
•How old were you at AVR?
34 years and again at 46 years.
•And for the ladies, did you have this done before or after you had kids?
If you get a bioprostic, and you should, keep in mind it will most likely need to be re-replaced. The problem for birthing is that an anticoagulant is necessary with a mechanical.

You may have many years to go before you need surgery. Just take every day as it comes.

With my homograft, I did not slow down until I noticed it being very difficult to recover after a long bicycle ride. At that point I stopped and waited until surgery.

Welcome aboard. This group is great and will be able to answer every question you have.

Scott

 

[LittleOwl]

Thanks Lyn! I remember you too - I will tell my mom that you said hi! Hope your son is doing well. Thank you so much for your input... It is so helpful hearing everyone else's experiences. I am hoping I will be a candidate for the Ross Procedure since that seems to last longer than a tissue valve in a young person (I have seen a lot of stories about people having to get a repeat replacement in less than 10 years, and that scares me). But coumadin scares me too... Especially with my activity level. Exercise keeps me sane and I do not want to have to slow down anytime soon

Thanks again!!!

 

[LittleOwl]

Thank you Scott!! I so very much appreciate your input (especially awesome since you are a fellow cyclist!!). The past few weeks have been so surreal for me. So sorry to hear that you have been through two surgeries... Hope you are feeling much better now!!! As for having kids, I am definitely leaning towards adoption because of the hereditary issues, and the complications it could cause even if I had kids before valve replacement. Since pregnancy increases blood flow so much, it definitely worries me. But hearing the other experiences is definitely allowing me to keep that little glimmer of hope that at least one pregnancy could be feasible! Thanks again for your input. I am already feeling much better hearing other experiences!

 

[Mentu]

Welcome to VR, LO. If you have not already done so, I would recommend that you get a copy of your echo cardiogram for your own records and if possible copies of any previous test results. By becoming an informed patient, you can ask better questions when you next meet with your Cardiologist. It will also help give you a baseline for later review if you make a personal record of things such as recovery time after exercise, distances, time spent at peak exercise and note any possible symptoms such as shortness of breath or heart palpitations and the circumstances that produce the symptoms. Note also any instances of chest pain. In the event you have chest pain, you should immediately inform your Cardio regardless if your diagnosis is officially "mild-moderate".

As you already know, these conditions can linger at mild-moderate for a long time but it is possible for things to change in a relatively short period. Some people never have symptoms that they notice, however, it is more likely that you will know your valve is deteriorating before anyone else. Having baseline test reports and your own observations can help you recognize that your heart function is changing and as we know so well, it only changes for the worst.

It sounds as though you are in excellent cardio vascular health; that is very good. By my surgery date last year, I had not been able to ride any distance in almost two years but my basic level of fitness was still quite good and helped make my recovery a good one. You, too, can contribute to an excellent recovery by simply staying healthy until you reach a point where your valve must be replaced.

Larry

 

[LittleOwl]

Thank you Larry! I do keep records of all of my training - calories burned, mileage, etc, and also a brief description of how I felt. I will add a portion to that spreadsheet for "potential AR symptoms" and add anything in there for non-training days as well. Thankfully there has not been any chest pain at this point - just the mild dizziness, palpitations, and shortness of breath. My doctor already gave me copies of all of my echoes and the radiology reports. He has been my doctor for almost 10 years now, which is why he was so surprised to see it at mild-moderate after such a short time. I am hoping mine stays at mild-moderate for a long long long long time!

I truly appreciate your input!!! i hope your first year with a new valve has gone well!!

 

[Lionheart]

Hey Little Hoot,

Sounds like you are on top of things. I found out about my AS/ AR (Aortic Stenosis / Aortic Regurgitation) in my early 40s and monitored it for 10 years before AVR. It surprised me a little when my cardio said it was time to operate, but I knew he was right. As my symptoms increased I finally realized that they were AS / AR related and not due to other excuses that I came up with like normal aging fatigue, lack of exercising, etc. One thing that I experienced as my valve became more stenotic was an increase in frequency and duration of tachycardia events that I think were related to my heart over-working while trying to compensate for the AS / AR. So stay hydrated during those workouts.
Best,
John

 

[ALCapshaw2]

Welcome Back L.O.

A couple of our young female members chose Bovine Pericardial Tissue Valves in order to have children.
They got 10 years of good service (and a few kids) from these valves.

Yes, Baylor is a Good Place to be for Heart Procedures.

Dr. William Ryan is frequently mentioned by patients in the DFW area.
I believe he is also an experienced Ross Procedure Surgeon and highly regarded for all Valve Surgeries.

By AR, I *assume* you mean Aortic Regurgitation. Is that right?

'AL Capshaw'

 

[Superbob]

Greetings, Little Owl. Well, you've gotten the kind of news you don't want to get, but on the bright side you are well-informed and obviously in great shape.

I actually got word in my mid-20s that I had aortic regurg; however, my time for surgery did not come til I was 63 -- nearly 40 years later. By then I had an extremely leaky valve and a 5.3 aortic aneurysm.

But in the interim, I was very active. Even ran some marathons though my body type is not exactly that of a svelte marathoner. I am glad your doc has cleared you to remain active. All best to you and great to have you here...

 

[LittleOwl]

Al - Yes, I mean Aortic Regurgitation. And either Dr Ryan or Dr Jett would be my surgeon. Dr Ryan was supposed to do my mother's but she had hers done the day before Good Friday, and Dr Ryan was out of town so Dr Jett did it. I immediately loved him because he wore cowboy boots with his scrubs

And Superbob - that is awesome that you made it 40 years and were able to stay active. I am hoping I have that kind of luck. How bad was the regurgitation in your 20's?

Thank you all for the support. I am feeling much better knowing there is this much support out there!

 

[ALCapshaw2]

L.O.

You may want to look at the Cleveland Clinic Website and then look for information on the Ross Procedure. It is my understanding they have stopped (or greatly reduced) their use of the Ross Procedure due to a number of 'early failures'. They are Big Proponents of the Bovine Pericardial Tissue Valve which seems to have the best durability / longevity of the tissue valves.

The most prolific Ross Procedure Surgeon is Dr. Paul Stelzer in New York with over 400 performed.
Member "StretchL" is a big fan of Dr. Stelzer and has a Photo Journal depicting his operation.
There should be a link to his Photo Journal in his signatureline. For some reason I am not able to open the Member List (drop down menu from "community" on the red line at the top of the page) at this time.

I'm thinking Dr. Ryan is also an experienced RP surgeon. Experience Counts !
One of our 'famous sayings' is that it is wise to "find a Surgeon who has lots of experience doing the procedure that YOU want / need".

'AL Capshaw'

 

[scott.eitman]

Thanks Lyn! I remember you too - I will tell my mom that you said hi! Hope your son is doing well. Thank you so much for your input... It is so helpful hearing everyone else's experiences. I am hoping I will be a candidate for the Ross Procedure since that seems to last longer than a tissue valve in a young person (I have seen a lot of stories about people having to get a repeat replacement in less than 10 years, and that scares me). But coumadin scares me too... Especially with my activity level. Exercise keeps me sane and I do not want to have to slow down anytime soon

Thanks again!!!

I recommend that you do a lot of research about the Ross Procedure. I believe that it will put you at risk for re-replacement of two valves, not just one. In the end, an RP is a tissue valve replactment; you will still need to worry about re-replacements. I believe that research will show you that many people with RPs have had complications and the need for re-replacements. I admit that I do not have the facts. A good surgen will be able to assist in accessing the risks.

I completely understand not wanting to take coumadin. That is where I was at 34. At that time, I did not even consider it so I didn't understand the risks either. I just knew it was not something I wanted. Now, I would prefer to take it than to think (or plan) for another surgery. As a cyclist, I do worry about going down; if so, I will be headed to the ER to get checked for internal bleeding. I cannot stop riding as some people have told me to do.

Scott

 

[AgilityDog]

Little Owl,
I may be prejudiced, but you are with one of the best cardiology practices in the Southwest. CSANT/Dallas Heart Group is fantastic (even though my cardio just left the group due to its sale to Baylor Hospital System, and is now at Med City, and I'm going with him).

I understand you wanting a tissue replacement if you have not yet finished making babies. But, having had 2 valve jobs with the CSANT group, MVR by Dr. Magee (now at Med City) and AVR by Dr. Ryan, I know you are in good hands. And yes, Dr. Ryan does Ross procedures frequently.

PM me if you want to meet for lunch sometime to chat about heart stuff - I work within 15 minutes of Baylor Plano. But give me a few days lead time, as I'm not online every day. Work, Work, Work followed by Dogs, Dogs, Dogs.

 

[LittleOwl]

Al/Scott! Thanks for the input! I do know that the Ross is a tissue, but it was my understanding that they lasted longer...but my mom wasn't a candidate due to pulmonary insufficiency, and knowing me I will probably have that as well and not be a candidate. Genetically I am the spitting image of her, just earlier onsets of everything But the RP was what my doctor said he would recommend to me at this point. I will ask him about the Bovine Pericardial Tissue Valve. He laughs at me with all my questions - I came in to my follow up appointment last week with my questions all printed out, organized, cross referenced, and bullet pointed!

The having kids part isnt even an issue for me in terms of the valve choice. If I have to adopt, then I am 100% okay with that. But my biggest concern with mechanical valve is the coumadin. I am scared to death of not being able to do the things that I love - cycling, running, etc. Hopefully that decision day is a LONG WAY off. We will know a lot more in March at my next echo.

And Laurie, I will definitely PM you soon. I am a little busy with work/dogs/and such too (I have a 110 lb mastiff/shephard mix - I call him a Mastard) but I would love to meet up!!

Thanks again for all the help!!!

 

[ALCapshaw2]

Al/Scott!
But my biggest concern with mechanical valve is the coumadin. I am scared to death of not being able to do the things that I love - cycling, running, etc.

L.O.

Where did you get the idea that you could NOT Run or Cycle while on Coumadin?

Please look over the Active Lifestyles Forum. We have Many Runners and Cyclists and even a few Triathalon Competitors who are on Coumadin. Member "dtread" is a avid cyclist and exercise enthusiast. There are several others.

There are a LOT of Myths about living with / on Coumadin that have carried over from the Bad Old Days before INR testing was developed. INR is a more accurate monitoring and testing method than was available before 1990 when there was a wide range of variation in the reagents used to 'measure' clotting times.

You may want to educate yourself about living with anticoagulation, starting by reading the "stickys" at the top of the Anti-Coagulation Forum Listing. Most members have few problems with Proper Management of their Coumadin. Self Testing and Dosing has the best record for maintaining in-range INR readings, typically testing every 2 weeks. Dedicated Coumadin Clinics come in second, typically testing every 3 or 4 weeks when stable (more frequently if out of range readings are seen). Most of us on Coumadin find that SMALL Changes work best to 'ease' back into range without going into the "roller Coaster effect" which can be caused by changing dose too often (before the INR stabilizes from a previous change which takes several days) or by making too Big of a Change for an out of range reading (typically by an Out of Date provider who has a Greater Fear of Bleeding than Fear of Stroke).

'AL Capshaw'

 

[LittleOwl]

Al - while I know that I will most likely never be told not to (even though other patients have been, but each sitaution is unique), my doctor already has warned me that I will need to take it down a notch. I am somewhat extreme in what I do and have had some bad crashes I have already looked at that thread quite a bit and it does give me great hope!!! I just want to tackle a few of my extreme events first just to be safe!

And thankfully I have been able to witness ACT first hand with my mother's situation. We talk INR as much as we talk about baseball and my dating life (which is a LOT!!). Coumadin definitely has gotten a bad rap, but I do know that it is not as scary as some think... My mother has had some rough issues with it, but more than anything I do know that the benefits FAR outweigh the risks when mechanical valves are the best option. It has given me more time with my mother, and for that I will always be thankful!!!

For now, I am just focusing on the progression of the AR. We just found out about this on September 7th, and we just were told the extent of it last Tuesday... It has been tough trying to wrap my brain around it. Ideally, the AR will not progress quickly and I can make it to my 40's without surgery, at which point mechanical would be the best choice. That way the baby question will have been answered and my extreme sports bucket list will have been completed! If I do need to make the decision sooner, I will let you all know because I will definitely need advice!!

Thanks so much for your input. I cannot stress enough how amazing this forum is!!!

 

[Lionheart]

(I have a 110 lb mastiff/shephard mix - I call him a Mastard) but I would love to meet up!!
Thanks again for all the help!!!

Little Owl,
Great name for a big dog. He's probably a handful and reminds me of a good looking cowgirl I met in Western Colorado whose horse was also a handful and his name was "Bucker".:biggrin2:

Best,
John

 

[Lynlw]

Al - while I know that I will most likely never be told not to (even though other patients have been, but each sitaution is unique), my doctor already has warned me that I will need to take it down a notch. I am somewhat extreme in what I do and have had some bad crashes I have already looked at that thread quite a bit and it does give me great hope!!! I just want to tackle a few of my extreme events first just to be safe!

And thankfully I have been able to witness ACT first hand with my mother's situation. We talk INR as much as we talk about baseball and my dating life (which is a LOT!!). Coumadin definitely has gotten a bad rap, but I do know that it is not as scary as some think... My mother has had some rough issues with it, but more than anything I do know that the benefits FAR outweigh the risks when mechanical valves are the best option. It has given me more time with my mother, and for that I will always be thankful!!!

For now, I am just focusing on the progression of the AR. We just found out about this on September 7th, and we just were told the extent of it last Tuesday... It has been tough trying to wrap my brain around it. Ideally, the AR will not progress quickly and I can make it to my 40's without surgery, at which point mechanical would be the best choice. That way the baby question will have been answered and my extreme sports bucket list will have been completed! If I do need to make the decision sooner, I will let you all know because I will definitely need advice!!

Thanks so much for your input. I cannot stress enough how amazing this forum is!!!

That sounds like a good plan. Hopefully it will be a long time before you need surgery and who knows what your options may be then. Your dog sounds great, he reminds me of our dog Zero. He is about 120, mostly black with a few white places and his Mom was a lab, boxer his Dad was a sheppard collie wolf.. He is just a big goofy pile of love.

 

[Johan]

Little Owl, I lived all my life, and a very active one at that, with a very loud murmer, and the last 20 odd years, since the machinery became available to measure these things, with mild/moderate AV stenosis. Then it became severe during the last few years before the surgery at 66. You may very well make it into your 40's, and have those babies, before AVR.