30 yr F in need of advice for valve selection for AVR and MVR

[pellicle]

Hi again

I'm a nutrition educator so I too like to be well informed with current research but ...

ahh .. good, I was worried my data dump may have been "inappropriately targeted"

You said you had your first AVR at 28... did you have bicuspid aortic valve?

yes, my first Aortic Valve Replacement was at 28, but my first OHS was done when I was 9 or so (may have been 10 I'm not certain and I don't have my file on hand ...

That was a 'valve repair' for a bicuspid aortic valve with stenosis.

Also, were you symptomatic for a long time before surgery?

well when I was a kid no, I wasn't. Basically they decided to do the surgery when my heart had enlarged significantly. Back then technology / technique (we're talking 70's) wasn't as well developed as it is now (nor were medical imaging systems or other diagnostics).

Also, Where did you have your homograft valve?

I had that done at the Prince Charles Hospital in Brisbane Australia (where I was from, although I was born in a coastal town south of Brisbane it was the only surgical unit for this at that time). My surgeons were top shelf and have done many publications on their technique and the reviews of that.
for instance:
The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.
O'Brien MF, Harrocks S, Stafford EG, Gardner MA, Pohlner PG, Tesar PJ, Stephens F.
2001 May;

I can send you "mht" files of the stuff I've downloaded of their work if you are at all interested. PM me and I'll email you an archive.

did you become symptomatic when you had to have a re-op and if so when did you start becoming symptomatic?

yes, and it was a gradual process. I first started to be told of issues which would require surgery at about 25. However by 28 I needed to have it done. I asked for a delay because I was amidst doing my IT degree and wished to have the semester over. I had the Allograft (my 2nd OHS) in December 1992.

I'm sorry for all the questions.

no problems ... over the years every doctor under the sun and everyone who's been in a Sauna or a Japanese bath with me has asked. I don't mind telling because it helps educate. I got to live, so I see it as a small price to pay for the surgery(ies) which gave me three extra shots at life.

I ask about the symptoms a lot because the cardiologists in my case never believed my symptoms to be

I guess that being diagnosed at 5 and investigated yearly from then on till my late 30's I have never had that issue ...


happy to help in any way that I can.

Best Wishes

 

[neil]

special heart i just wanted to say good luck, you derserve it,

 

[bw00]

Thank you! Whenever I have questions I'll ask them . Thank you for the tip, I'll talk to my doctor about it. I'm also the youngest patient she has, so it's great that you mention the pain experience!

 

[njean]

Hi N Jean,
Thank you so much for your welcome! I really appreciate your sensitivity and advice. It seems like we both have the same valves that are special!

Would you mind sharing with me why you had to have your valves replaced at age 24?

I too was a sickly child growing up. I suffered from sore throats frequently, had trouble keeping up with physical activities at school, and treated for anemia many times throughout my life. In fact, I remember having to take Cod Liver Oil all the time.....that was some nasty stuff! At the age of 21, I came down with rheumatic fever and was in complete bed rest for 6 months. The family doctor or one of his nurses would come to the house to give me injections of penicillin. I got over the illness but I was never the same after that! I began to suffer with CHF but I did not even know that that was what I had!

It wasn't until 1973, a few months after I got married, that I finally decided that something was very wrong with me and went to see a cardiologist for the first time! After running tests, I got the grimm news that I needed to have valve surgery and that the damage done to my heart was very severe. I was told that there were no doctors in my area that could tackle the surgery and it was recommended I go to St. Luke's in Houston, TX. But first, I needed to take medications to strenghten the heart muscle to get me ready for the surgery.

During the time I was waiting for the surgery, I became pregnant! The doctors told us that there was no way I would live to give birth and that I had to abort immediately! I was seven weeks pregnant! There are no words to describe, except that it was the blackest time of my life.

I finally had the surgery in May/1975 after being diagnosed in Oct./1974. The surgeon (Dr. Denton Cooley) who performed the surgery said that he was almost sure I had been born with a hole where one of my valves should have been. When I had the rheumatic fever in 1972, everything came to a head and severe damage was done to the mitral and aortic valves. He thought too that I had had endocarditis at some time perhaps even when I had the rheumatic fever. The fever BTW, came from a sore throat which turned into strep.

Also, why did you have to have your MV repaired in Dec? Was there complications?

My first surgery in May/75 was a complete success. I had two brand new Cooley-Cutter valves (they are obsolete now) in the mitral and aortic position. The ticking never bothered me although I do think it bothered my husband....a lot!

In fact, many things weighed heavy on his mind especially the fact that I had to abort before the surgery and the fact that the doctor said I would never be able to have children. He just couldn't take all this and decided to end everything!

I was left with the pain, the guilt, the stress.....the stress that eventually drove me to my 2nd OHS...the mitral re-do, 6 months later. The sutures around the ring of the mechanical mitral valve had torn loose and had to be resewn. Doctors said that it was probably due to all the stress and emotional turmoil I had been though.

After my 2nd surgery, again I picked up the pieces and moved on with my life. I remarried in 1980, worked and lived an active and normal life for 31 years. In 2005 I started experiencing CHF and after seeing several cardiologists in my town, they said that tests showed that my mechanical valve had developed pannus growth which was obstructing the blood flow and that the valve had to be replaced.

Why the 3rd surgery in 2006?

I went to Houston in 2006 again and the aortic valve was swapped out with a St. Jude. When the surgeon was in there, he noted that the mechanical mitral valve appeared to be working properly and decided not to mess with it. Unfortunately now, the mitral valve is also invaded with pannus! I have severe mitral valve stenosis but the doctors do not want to attempt the surgery unless it's absolutely necessary. I take many medications at the present to prevent CHF but eventually the time will come. In the meantime, I just go on, day by day, appreciating all that I can.

Please note: Scar tissue (pannus) is not a common occurrence. There are many with artificial/mechanical valves that have never had this happen to them so don't let this frighten you in any way!

I wish you all the best....I know you will do just fine! Take care!

 

[SpecialHeart]

Hello everyone,

I apologize for my absence from this forum. You have all been such great help and I appreciate everyone opening up to me and sharing their stories with me. The past few months have been filled with doctors appointments and lots and lots of tests and mixed reports so it's been very tiring for me physically, mentally and emotionally so I wasn't able to communicate with you all.

So here's the update.
My surgeon thought it would be helpful for me to speak with a new cardiologist and discuss my valve option so I took Lyn's advice and looked up a congenital heart disease specialist in the area. They told me that my heart was unique and that it doesn't seem to function the way a text book heart should so they wanted to do a comprehensive testing to understand it better. They thought my symptoms did not match my diagnoses and they didn't understand why I was not having heart failure with all the regurg and stenosis. I had to 8 tests in 3 weeks (cardiac blood work, echo, holter, full heart and lung CT, pulmonary function test, cardiac stress test, cardio pulmonary stress test and right and left heart catheter. I had a bad allergic reaction to the iodine contrast so I had to go to the ER.

This process was very stressful because I went to this hospital in 2007 when I started becoming symptomatic and after staying at the hospital for 4 four days they told me it was depression and sent me home. I had to learn to manage the symptoms on my own and it was stressful. I didn't like having to go through this again with them but they were the only congenital hospital in the area.

They told me that the heart cath explained why I was so symptomatic. My pulmonary pressure tripled with me just lifting an IV bag up and down. They wanted me to see if beta blockers would help and if not then we could talk surgery. The cardiologist is out of town for a month so she wants to discuss surgery next month. This was not what I expected from a second opinion that was supposed to help me decide on the valve choice so I've been down. I've been waiting for this surgery for so long and been so sick so I decided to go back to my original surgeon. I also decided to go with tissue valves.

I really need all your advice once again because I'm having a difficult time choosing the right surgeon for me. I'm torn with my original surgeon vs the congenital specialist. I will post about this in pre-surgery since it's not related to valve selection. My surgery is scheduled for the 23rd of April so I have to decide soon! Thank you all for all the love and support!

 

[cldlhd]

Did you get any info as to endocarditis risk with a valve repair or tissue replacement vs risk with a mechanical valve? I'm a 45 yr old male with a bicuspid aortic valve that may be possibly repaired , either that or I'll go with mechanical as I don't want reoperation if I can help it. I worry about stroke risk though as I plan on living a long time, i also worry about bleeding as I like to work on my house and my job is physical occasionally. At least I live 5 minutes from an emergency room. I work for the local water and sewer authority so if mechanical has a much increased risk for endocarditis that worries me as I'm exposed to all kinds of bacteria. As i've been doing this for 20 yrs with my bicuspid valve ,that I didn't know I had , and never had endocarditis I have to think exposure has either developed anti bodies in me or my bicuspid valve isn't prone to infection . I worry this would change with the possible switch to a Mechanical valve .Thanks

 

[river-wear]

I asked a surgeon about endocarditis and valve choice, and he said the risk is about the same regardless. I don't know what the risk would be with a repaired valve, but to me that is the very best option. The overall risk for endocarditis is extremely low, in spite of what you see on here.

Many of the various bacteria that can cause endocarditis are very common on your body and in your mouth, so I don't think it's the sort of thing you can build a resistance to. The best defense is to take good care of your teeth, take your pre-meds when you go to the dentist (if your doctors require them) and know the symptoms for fast treatment. Here is a link that can help:
http://my.clevelandclinic.org/heart/disorders/valve/sbe.aspx

You should check out the part of the forum for anti-coagulation therapy. There are a lot of folks on here who live very full (and "risky") lives in spite of taking warfarin.

I noticed you're in eastern PA. Are you planning to go to the Hospital of the University of Pennsylvania? I'm looking at making the trek out there to improve my odds for a good repair.

 

[extraordinary]

Hi bw00,

I am sooooo happy to meet someone your age on this forum!!!!!!!! I had my first OHS at age 18 and I've never met a young person that had valve issues and needed surgery at 18 like you before so this is exciting! With that being said, I am so sorry to hear that you have to go through this at such a young age. Thank you so much for your advice and I wish you lots of luck on on your surgery. I'm not sure if you need any advice from me or my OHS experience but if you do then let me know I can tell you. I thought you might want to know that we experience pain at a higher intensity at age 18 than when you are older (50's, 60's, etc). I'm mentioning this because I was the youngest patient for my surgeon at age 18 and at that time he had been practicing for 47 yrs. He wasn't prepared for the amount I went through. He said it was significantly higher than his older patients. My surgeon now say's the same and is aware that I'm going to need more pain management than his other patients. Its very uncomfortable to walk when you are in so much pain so I think it's important to discuss how your surgeons' planning on controlling your pain. My surgeon now (Im the youngest patient again) say's most of his patients just take pain meds after the 2nd day but that was not at all the case with me. I had a central IV line in my neck and even with that the pain was hard to manage. People experience pain differently anyways so it maybe be completely different for you but I thought you might want to know. Good luck and don't hesitate to ask me for questions if you have any.

thAT'S sooo right when you had your 2nd surgery or not yet ?
I'm 24 and just had my surgery almost a month ago for AVR and went mechanical that was my 3rd OHS, i was so much in pain and nurses told me the same that us young adults feel so much more pain the older patients i was on all kinda of pain relief medication and still nothing seemed to work for me But not i feel better and less pain
what valve you had ?

 

[extraordinary]

First of all i want you to know I'm 24 years old female, have 1 child and it was a very high risk pregnancy because the doctors in my country thought it would be ok but when i came to the US they told me i've should've have my valved replaced before getting pregnant any how, the pregnancy wen fine but after wards i started really to get tired in first couple months post pregnancy after that things started to get better but i though it was better to had the valve replaced now that my baby only few months old so it would be easier for me and him since he don't know what's going around/
i just had my AVR almost a month ago, went mechanical because this was 3rd open heart surgery so to go through more surgeries would be too risky, so it seemed to me that mechanical is the right choice because no more operations and the dr. told me i still can get pregnant with it
but if you don't like the idea of mechanical don't go for something you are not ready to accept choice what ever feels right to you because honestly even though mechanical is the only make sense choice for me after surgery i started to have a lot of regret memonts sometimes i say to my self wish i've waited and not had the operation done now, sometimes i say wish i had a tissue valve but also i can't handle the thought of another surgery with all the pain i went through it was uberiable pain

1. Is there anyone here or do you know anyone in my age range and gender that’s had tissue valve replacement? And if so how long did it take before they started having symptoms/ deterioration?

not me but the DR. told me between 7 to 15 years and for young adults usually it lasts less than older peoplel

2. Do anyone know if they offer homograft valves in Washington or anywhere in West cost?

sorry not me

4. Is there any way to prevent damage to tissue valve either through diet or lifestyle changes?
no, nothing it just last differently from one person to another

5. How is the ticking sound like for those with multiple valves? I’ve heard the sound of mechanical valve on youtube. Is it different from that? My surgeon said that it was and there will be two clicking sounds.
I hear mine ticking and it is the least thing you have to worry about it feels to me exactly like a ticking watch and it won't bother you at all …

6. I’ve been falling asleep listening to the sound of my heart since I was a kid and my heart beats very loudly. I could always heart my heart beat. I’m a very light sleeper so my hear sound is the only sound that doesn’t wake me. Is it very distracting to get used to the sound of ticking. Also, do any of you have any tools that helped you cope with the sound?
i was worrying about the ticking noise pre-srugery as well, and sometimes thought of my heart palpitation pre-surgery and if the ticking would bother me like the palpitation … post surgery i hear the ticking but it feels like nothing and it doesn't worry me, it's the least thing that you have to worry about when choosing a mechanical valve, i didn't have to get used to it because it doesn't bother me at all

 

[NewbieSlo]

Hi SpecialHeart,

I've been think of you a lot since I first came across your story, so I'm wondering, how are you doing?

Let us know, girl!