Strugglng with my decision

[Shellbell]

Hi Everyone...

Let me start by saying how happy i was to discover this site! After many years of slight denial, pretending this would never really happen (I would just keep getting those echo's every 6 months, right?) reality has caught up with me. I never did alot of research on my heart valve issues until I was told this spring that my surgery would indeed be happening before Christmas.

I am 43 years old, with severe aortal regurgitation and an ascending aorta at 3.8 cm. I have been scheduled for AVR and ascending aorta graft ( is that what they call it ? ) but not the full Bentall procedure. My surgeon recommended the ascending since i was getting closer to when they would normally say to do it at 5 cm, so he said while we are in there....

My surgery date is set for September 24th at the Peter Munk Cardiac Centre at Toronto General Hospital, my surgeon is Dr. Vivek Rao. He sounds great!

I have been weighing the pros and cons of both tissue and mech valves and am really having trouble coming to a decision. I seem to go back n forth daily. My surgeon has offered me a Med-Hall mech valve or a Mosaic/Hancock tissue valve.

Let me tell u a bit about myself. Much of my time in the summer is spent at my sanctuary, my cottage, often by myself. I love nothing more than sitting in the sun with a good book and a cuba libre or 3. Walks in the woods with my dogs and sitting by the fire are right up there too.

I am worried that choosing the mech valve and the ensuing blood thinners will be a big interference to this lifestyle. Has anyone experienced sensitivity to the sun on Coumadin? It would break my heart ( pardon the pun ) to find that i was photosensitive post-surgery from thinners. I also am concerned that if i were to fall in the woods or become injured that being by myself with no car there could be a danger. Although thats a risk even now....

The frustrating part about this decision is that prior to surgery its impossible to tell how your experience with Coumadin is going to go. I could be just fine on it or i could have major issues, from what i have read. Also, until I have been thru it, I cant really say if i will be able to deal with another surgery either. It really is a crapshoot.

Oh, did i mention that i have a major needle phobia and really hate bloodwork?? And that i dont drive so getting to the lab on a weekly basis will be difficult?

Its so hard to say if choosing a pig valve in order to maintain my lifestyle is worth the price of more surgeries......

Thoughts?

 

[Mike59]

Hi

I can tell you most of us have the same concerns when making this choice

But it has to be said that both options are great and life savers and have pros. And cons

That said I chose a tissue valve

Had the operation 15 months ago

Am working 50 hours a week and feel great

Exercise regularly and look after your diet and you will do great

Choosing a tissue valve has been one of the BEST decisions I have ever made!

Best of luck with your decision

 

[Heart Of The Sunrise]

Shellbell:Neither choice is perfect. It is a very personal decision. But either will save your life. I started out thinking tissue because of the desire to avoid the necessity of coumadin with a mechanical valve. But, once I researched the specifics of my condition and the positives and negatives of each type of valve it was clear that my choice would be the ON-X mechanical valve. There are many things to weigh. The idea of multiple repeat surgeries in my life time was something I personally would not want to face. There is no guarantee that I wouldn't need to be on coumadin with a tissue valve anyway. Getting blood drawn regularly to check my INR certainly is alot easier than having several reops in my lifetime. Coumadin has not been a problem. Life is getting pretty much back to normal. I am five months post-op this coming Sunday. You will find that pretty much everyone on here is happy with the valve they chose. I know I am. Only, occasionally usually late at night I am slightly aware of the subtle sound it makes.

 

[ski girl]

Check the recent thread called something like 'impact of blood thinkers on your life' in the anti consultation forum to see what some of us are doing on warfarin . Walking alone in the woods? Nothing.

 

[OldManEmu]

Shellbell my concern would be why they are offering you a Medtronic Hall mechanical valve. My understanding is that these are old technology single tilting disk valves

http://www.medtronic.com/patients/h...ucts/hall-easy-fit-mechanical-valve/index.htm

that are not usually used in first world countries like Canada any longer.

 

[tom in MO]

I take the same kind of vacations, self testing makes it easy. Warfarin is not a big burden yet. I have a mech, primarily because I did not want to volunteer for another surgery and all that entails... At 54, with a tissue, I'd have bern looking at...

Both choices are life. A hard choice means both paths have equal merit.

 

[nightingale]

Shellbell, I had my St. Jude's mechanical valve put in 7 years ago. I have had absolutely no problems with the coumadin, haven't notice any sun sensitivity at all. Like tom said, self testing makes being away from home easy. You just take your kit with you and do it yourself. Just a little finger stick and you're done. I went with the mechanical valve because I wanted it to be a one time shot. Unfortunately I now have an ascending aortic aneurysm that needs resection. You are fortunate to be able to do it all at once.

 

[Shellbell]

Shellbell my concern would be why they are offering you a Medtronic Hall mechanical valve. My understanding is that these are old technology single tilting disk valves that are not usually used in first world countries like Canada any longer.

I wonder if that can be chalked up to government funded healthcare in Canada, often when you dont actually pay you dont get a choice.....I am going to ask my surgeon about this, the information he gave did not mention any other brands, or a bileaflet option at all. I went and did a wee bit of research and again found conflicting studies about which is best, tilting disc or bileaflet. On-X was never mentioned as an option to me.....

So has anyone here ever experienced photosensitivity from Coumadin? That was a real concern of mine as I had heard a few horror stories about blistering and such.....yikes!

I hate to sound like a drink is more important than my health, but i do like to imbibe on occasion, preferably without worrying about my INR levels......although these days i'm lucky to make it past 3 drinks without falling asleep on the couch LOL....any more than that can be dangerous on thinners, no??

 

[Shellbell]

My mum had a heart attack a year ago, she had major blockages and had a stent inserted. She was in hospital for 10 days while they tried to get her INR stabilized. I wonder if that is a trait passed down?

I was lucky enough to have no blockages detected at my angiogram.

nightingale, so sorry to hear you are looking at another surgery even though you chose a mech valve ... (hugs) :angel:

If I do choose a tissue valve, I will probably go to a mech next time around, unless they can do the replacements laproscopically by then.....i dont think 3 surgeries is some:cool2:thing i can face, but at least i might get 10 more years of coumadin-free enjoyment before then.... my luck i will wind up with a tissue valve and the need for thinners anyways for some reason......I wish there was some way they could tell pre-surgery how you will react to blood thinners or if you will need them with a tissue valve, wouldn't that make this whole decision so much easier??

hmmmm, perhaps its time for me to go visit the pre-surgery threads for some anti-anxiety advice......:cool2:

 

[Leah]

Hello, I had my mechanical valve installed on March 6th of this year . I have had no problems at all with the Coumadin. I have been to the beach a few times this year, and I haven't had any issues with sun sensitivity. I have 1 or 2 glasses of wine most nights and I have had no problems with that either. My levels have been pretty steady the last few months. It was a little challenging at first, but I was on a lot of meds right after surgery that were interacting with the Coumadin.

I had a hard time with my choice too. I am 39 and I have a 3 year old & a 2 year old. I went with mechanical because I am done having kiddos. I was also scared of the Coumadin. My surgeon told me to just enjoy my life. He said the Coumadin was something to think about, but not to let it keep me up at night. I think that was good advice. I think it's a drug that should be respected but definitely not feared.

Like everyone says on here...neither valve is a bad choice. Good luck to you!!

 

[Shellbell]

Hello, I had my mechanical valve installed on March 6th of this year . I have had no problems at all with the Coumadin. I have been to the beach a few times this year, and I haven't had any issues with sun sensitivity. I have 1 or 2 glasses of wine most nights and I have had no problems with that either. My levels have been pretty steady the last few months. It was a little challenging at first, but I was on a lot of meds right after surgery that were interacting with the Coumadin.

I had a hard time with my choice too. I am 39 and I have a 3 year old & a 2 year old. I went with mechanical because I am done having kiddos. I was also scared of the Coumadin. My surgeon told me to just enjoy my life. He said the Coumadin was something to think about, but not to let it keep me up at night. I think that was good advice. I think it's a drug that should be respected but definitely not feared.

Like everyone says on here...neither valve is a bad choice. Good luck to you!!

Hi Leah,

so 5 months post-surgery and with 2 little ones to look after, how was it??? Did you find the surgery bad? Was there much pain when you woke up?? Were you in hospital long? And did it take you long to get back to your routine ie: lookin after the kids etc....

Sorry to inundate you with questions, but you are close to my age and its still my first day here so I have so many questions for everyone.....so glad i found this place! Wonderful to have people to share with cuz I think my hubby is getting kinda tired of me talking about it all the time......:rolleyes2:

 

[ski girl]

Absolutely NO sun sensitivity. And I live in Australia, where we have a LOT of sun and a hole in the ozone layer.

No issues with alcohol either; the key is to be consistent however if you do have a big night then you simply adjust your dose accordingly.

I chose a tissue for my first valve because I didn't want to change my lifestyle for coumadin. A bout of endocarditis necessitated an emergency redo 11 months later with no choice but to get a mech valve - and I have now discovered that I haven't needed to change my lifestyle. YAY!

 

[Heart Of The Sunrise]

Shellbell: I saw a therapist before surgery and joined the YMCA. I lost 10 lbs before surgery and was physically, mentally and spiritually prepared. My surgery was
lengthy and complicated. Click on the video link in my signature. It shows my surgeon doing a similiar surgery and discussing all aspects of it. The only difference is I chose a mechanical valve. As for your hubby getting tired of you talking about it...he will just have to accept it. The more you learn about your condition and the options to remedy it the better off you will be.Yes, it was a very scary thing to go through. But, as many of said here....the waiting and anticipation were far worse than the actual surgery and recovery. As for pain...once I left the hospital I needed no prescription pain killers! I was almost home 4 days after surgery. I ended up staying in for 9 days. I developed an ileus...inability to poop or pee......this was the worst part of my recovery. This is fairly common.:thumbup: Good Luck!!!!!

 

[Shellbell]

Okay so I am not ready to watch that video, got about a minute in and went not tonight......I can deal with all the information, just not the operating room footage, makes me squeamish still....but I am thrilled that after such a lengthy procedure you sound so great after only 5 months...I am stil unfamiliar with some of the medical jargon, you had your entire aorta replaced?? Like what my surgeon referred to as a Bentall procedure? I am just having the upper part of the aorta replaced, not the root or neck....

 

[Heart Of The Sunrise]

I actually found great comfort in viewing the video. Yes, I had the entire ascending aorta replaced. I credit my fabulous recovery to being prepared for surgery on all levels.
Add to that a great family doctor who did an EKG during my yearly physical in Oct. 2012. Which discovered my heart condition. I was completely asymptomatic. I have a fabulous cardilogist who was affiliated with Penn , so I ended up with Dr. Bavaria.. who is one of the best!!! The most fasinating part of my surgery was the Deep Hypothermic Cardiac Arrest.....and Retrograde Cerebral Perfusion. Being an engineer I found this amazing!!!! But, it is done all the time and it works!!!!

 

[Leah]

Hi Leah,

so 5 months post-surgery and with 2 little ones to look after, how was it??? Did you find the surgery bad? Was there much pain when you woke up?? Were you in hospital long? And did it take you long to get back to your routine ie: lookin after the kids etc....

Sorry to inundate you with questions, but you are close to my age and its still my first day here so I have so many questions for everyone.....so glad i found this place! Wonderful to have people to share with cuz I think my hubby is getting kinda tired of me talking about it all the time......:rolleyes2:

Please....ask away. The surgery was not as bad as I expected. I was really anemic on day 2 and after I got 2 units of blood, I felt tremendously better. I was in the hospital for 6 days. I had to go back in the hospital 2 weeks later due to a-fib. They got that under control pretty quickly and I have not had another episode since then. I did stay 3 days because they wanted to monitor me. I did not do well with the meds they gave me for the a-fib. I felt like crap for about a month, but after they took me off the anti-arrythmic drugs, I started to feel better. I started to feel good at around 2 months and started to feel great at around 3 months.

As for the pain, it was very well managed. The last couple of days in the hospital, I really was not in much pain, if any. I took the pain pills to help me sleep because the friggin' hospital bed was so uncomfortable!! My shoulders and back hurt worse than my incision site.

I have had horrible anxiety and panic attacks since my first son was born. I have not had a panic attack since my surgery. I am so happy that I got it done. It was a HUGE source of anxiety for me. Trying to decide on which valve caused extreme anxiety for me too.

Anyhow, I am doing great now. I have a ton of energy. The only symptom I had pre-surgery was exhaustion, and I just chalked that up to chasing 2 little boys all day. It was obviously from my bad valve, because now I can run circles around them

Leah

 

[Shellbell]

Leah my back was killing me after only a few hours on the hospital bed when i had my angiogram!! That was my first real hospital procedure as i have been blessed to have never had a hospital stay or even a broken bone! It put my mind at ease a bit cuz i was totally scared of that too and it wasnt bad at all.

I really hope that i can run circles too when my surgery is done, I chalked most of my tiredness up to just hitting my forties, but getting some energy back will be wonderful! I wanted to put off my surgery until October when my cottage closes for the winter, but my surgeon said that was too long to wait. He knows his stuff cuz just in the last few weeks i am now noticing more and more shortness of breath - and my ankles are swelling.....guess i should have gotten those damn compression stockings when my cardiologist prescribed them, but man they were gonna look awful with capris for summer LOL

 

[Leah]

You will do great!! You will be so happy you got it over with. I will be thinking of you!!

 

[Agian]

Okay so I am not ready to watch that video, got about a minute in and went not tonight......I can deal with all the information, just not the operating room footage, makes me squeamish still....but I am thrilled that after such a lengthy procedure you sound so great after only 5 months...I am stil unfamiliar with some of the medical jargon, you had your entire aorta replaced?? Like what my surgeon referred to as a Bentall procedure? I am just having the upper part of the aorta replaced, not the root or neck....

Not the entire Aorta. For most, they'll replace the initial bit that comes off the heart (Root and Ascending Aorta). Some people have problems further 'downstream' and need the 'Arch' repaired.

"The Bentall operation entails replacement of the aortic valve, aortic root and ascending aorta, but other operations may be used when all three components are not involved." (from Wiki)

 

[pellicle]

Hi

Leah my back was killing me after only a few hours on the hospital bed when i had my angiogram.L

Could just be stress. In try to calm myself in the dentists chair but always have a sore shoulder after it.

All your fears as stated above are normal. The ones about warfarin are simply just not the case.

Sometimes I wonder if the modern system gives people too much choice. This tends to drive e uninformed nuts. You walk into a TV shop and you see fifty TVs of the same size, they are essentially the same. Still people agonize over which one.

To me the bottom line of tissue vs mechanical comes to this.

* can you psychologically adapt to a new medicine in your life? (and in reality in the future you will need more anyway, its a shock in the first one I can assure you)
* do you want to have another surgery later in life to replace the tissue valve. This is a when not an if.

There are of course many other factors, but assuming you don't have any other medical problems then they are the keystone points.

The choice is yous as you live with the outcomes.

You'll be fine and you will be out there again wondering why this was so difficult in a year or so

Best wishes