longest 3 or 4 weeks in my life

[jax]

well this has had to be have been the longest 3 or 4 weeks in my life. went to the doctor and she heard a murmur so was sent for an unltrasound during that week i went to the emergency room twice and even though i knew there was something wrong with me they sent me home both times with either a wrong diagnosis or telling me that there was nothing wrong. The second time i was in the emergency room i had gotten my results from the ultrasound and even tried to tell them what was wrong and they still told me there was nothing wrong and sent me home.

the friday after i found myself in cleveland clinic at a cardiologist so they could tell me how bad my mitral valve stenosis and regurgitation was. I had more blood drawn and another echo. I was promptly put on two blood pressure medicines until we could decide whether we were going to go for surgery or go to a neurologist first. This tuesday i heard from the doctor that read my echo at the clinic and it was decided a neurologist wasn't needed and i was told that i needed to have the surgery fairly quickly since i was having symtoms.

So then the waiting game began as i waited to hear from a surgeon. I figure i would hear something before friday and i was right. I got the call yesterday and my surgery is scheduled for may 28th. When that phone call came in and we were talking about surgery my nerves went to a different level. afterwards i had myself calmed down but found myself crying at the drop of a hat. As my impending surgery date nears I don't know what to think or feel. It feels like i am on a rollercoaster and i hate rollercoasters. I find myself wishing that i was someone else. I never thought i would have to deal with something like this at 35 years old. But now i have to go through heart surgery and have my mitral valve replaced. The alternative i don't even want to think about. I keep trying to be strong but i am sitting here wondering how much strength i have left in me. But then again anything has to be better than how tired i am right now and the fact that i can't walk even out to my mailbox which isn't that far without being short of breath. Any advice from anyone on how to deal with the upcoming days as i am 3 weeks from surgery and completely freaked out.

 

[TakeStock]

jax, how can you live that close to Cedar Point and not like rollercoasters?

Seriously, everyone here goes through what you're dealing with, you're among friends. Welcome.

When I discovered in December that I had contacted a strep infection that had damaged my heart and I would need my mitral valve repaired or replaced soon, well, I took the news the same way you did. I got a little help from my PCP with lorazepam (ativan) to help calm my nerves and let me sleep at night. You should talk to your doctor about getting some anti-anxiety drugs -- sounds like you need it.

Read up on VR.com and you'll find out that surgery is usually not as bad as what you're fearing it will be right now. I'm 5+ weeks post-op and feel fine. It wasn't fun but it was hardly as bad as I thought it might be. Good luck and let us know your progress.

 

[MIKE69]

surgery

surgery

this is a tough thing
keep crying it helps trust me
make sure you have the right surgeon and the right solution for your situation
you must see numerous surgeons if possible be informed
Once your decision has been made do not look back

Get a good support network and understand that these surgeons are special.
You will be fine.

 

[john79t]

I am going for a heart cath on may 22 and will have surgery a short time after that. I am also freaked out. I finishing up all my just in case paper work and trying to come to grips with this. Many folks here if not everyone has gone through the same thing.
A big thing in your favor. By almost everyone's measurements you will be at the best heart hospital in the US. God bless.

 

[EVELYN]

Hi Jax

It's really scary, but you will get through it.....and we're here to help you. Just try to take one day at a time because trying to think too much will just jumble everything up. Take lots of deep breaths and try to relax.....Everyone on this forum has been there and done what you're going through. We all made it and are here to help you. If you have any/many questions, just ask. You'll find a very helping hand and a loving soul right here with this group.

Evelyn

 

[Ross]

I was 33 when I had an aneurysm rupture. I didn't have time to think about anything. It was do or die.

Of course your scared. Your human and humans lose it when they can't control or have control over something. Rest assured, many have gone before you and many will go after you too. Read around, you'll start to relax a bit. Try not to get all worked up about it. First of all, if your going to CCF for the surgery, you'll be at the best heart center in the U.S.. Secondly, you'll soon see that this is not a death sentence but a life saving sentence. There was a time when it would have been a death sentence. Thank God we live in a day and age where we are repairable.

Need anything, just holler.

 

[jax]

thank god for cleveland clinic in my case i have umbrella coverage there. I looked up my surgeon last night but i couldn't pronounce his name so until i get the package with the details in the mail it is just a guess but if it is the surgeon i read about i am in good hands. Will also have to have a heart cath, more bloodwork and another chest xray probably the week before the surgery.

i have also started doing the just in case paperwork and maybe that is what is freaking me out the most. making sure that all my wishes are written down and my son is taken care of and so forth. it was just so unreal to me until yesterday when i got my surgery date. and then everything hit home all at once. I only live half an hour away from cedar point and i haven't been there yet. lol. thanks for the support everyone it's nice to be able to talk to people that know what i am going through.

 

[Ross]

Doing the paperwork thing troubles all of us, but tell you what, even though you may not need it now, it will be done for in the future when you might and can't. Just make sure you have your legal bases covered, Will, living will, durable power of attorney and don't use the internet forms, see a real lawyer to have it done.

Really and honestly, your going to be fine. Your not going to be dancing the first week or two, but your going to be just fine.

I put you on the calendar too. Two other people are joining you on that date.

 

[avalve]

I have followed this forum for over a year now but this is my first post. On Saturday, it will be my one year anniversary since AVR. I was 41 years old and had a St. Judes mechanical "installed" at Johns Hopkins. I know exactly what you are going through. I have two kids ages 15 and 13 and a wife who was very scared to see me go through OHS. Over the next few weeks, you will go through many emotions which is very normal, and necessary. Surround yourself with family and friends that make you laugh. It is very good medicine. Keep very busy to keep your mind off of the surgery.
Here comes the good part, at least in my case. The surgery and recovery was actually not that bad!! You are young and will bounce back very quickly. I was walking up and down steps within 48 hours. I can honestly say that as my one year anniversary approaches, I feel better now than I have in 20 years. I contracted endocarditis from a sinus surgery not knowing I had a heart murmur and bicuspid valve. It was a fluke thing that happened but I am just glad that it happened to me instead of my wife or kids.
You will get through this as w e all have. Stay positive and just keep reminding yourself that once this surgery is over you will feel much better than you do right now.
Good luck and know that everyone on this board is there for you. They were a great help to me just reading all of the experiences.

 

[Ross]

I have followed this forum for over a year now but this is my first post. On Saturday, it will be my one year anniversary since AVR. I was 41 years old and had a St. Judes mechanical "installed" at Johns Hopkins. I know exactly what you are going through. I have two kids ages 15 and 13 and a wife who was very scared to see me go through OHS. Over the next few weeks, you will go through many emotions which is very normal, and necessary. Surround yourself with family and friends that make you laugh. It is very good medicine. Keep very busy to keep your mind off of the surgery.
Here comes the good part, at least in my case. The surgery and recovery was actually not that bad!! You are young and will bounce back very quickly. I was walking up and down steps within 48 hours. I can honestly say that as my one year anniversary approaches, I feel better now than I have in 20 years. I contracted endocarditis from a sinus surgery not knowing I had a heart murmur and bicuspid valve. It was a fluke thing that happened but I am just glad that it happened to me instead of my wife or kids.
You will get through this as w e all have. Stay positive and just keep reminding yourself that once this surgery is over you will feel much better than you do right now.
Good luck and know that everyone on this board is there for you. They were a great help to me just reading all of the experiences.

It's about time you stop lurking!

 

[john79t]

Avalve
Thanks for shaing. Glad to hear your recovery is going great. Welcome to the board.

 

[ALCapshaw2]

Welcome to our world Jax !

You need to know that Heart Surgery has evolved to a highly refined art with an Excellent Success Rate. The risk factors for a First Time Surgery in a patient under age 65 is Very Low (1% morbidity and 1% mortality Nationally). Since you will be a the #1 Rated Heart Hospital I would suspect your risks are even lower, versus almost certain demise if you do NOT get your valve fixed.

Has anyone talked with you about what kind of a valve you would like to receive? My guess is that they will recommend Mechanical given your age. You may want to browse through the Valve Selection Forum, starting with the "Sticky's" at the top of the Thread Listing under that forum.

Feel free to ask any Questions that come to mind as you learn more about this 'adventure'. Just remember, almost everyone on this site has been through Open Heart Surgery and SURVIVED and the vast majority go on to lead happy and productive lives. YOU can too!

'AL Capshaw'

 

[jax]

i do know that i will be getting a mechanical valve because of my age and it is the best choice for me. I didn't want to h ave to go through another surgery if i didn't have to and because of my age the doctor said that if i went with a biological valve i would be looking at another replacement when i was in my forties. i can handle taking coumadin over another surgery any day. I can't wait to start feeling better. There's been so many aches and pains and being drained over the last few years and i couldn't figure out why so all the little pieces are starting to fit. even right down to the fact the doctors at the clinic kept asking if i had rheumatic fever as a baby. I never knew but after talking to my parents who don't really know for sure i was told that i was in the hospital with a very high fever when i was a year old and it put me into a seizure so even that started to make sense. I have complete confidence in the medical staff at cleveland clinic. Unfortunately all of my family is in canada as that is where i was born and raised. I moved down here in 2001 and got married and have been here ever since. It will be difficult for them to come down but i know they will be doing their best to get here.
Atleast i will have my husbands family and all of my friends near even if my family can't make it down.

 

[Tbone]

Jax, I wish you the best of luck. You are going to the best heart hospital in the country.

I had a surgery there in '64, and the Mayo Clinic in '77. If it wasn't for those surgeries I wouldn't be here. I am going through the process of getting use to the idea of having another one. The idea is on the table, I just need to discuss it & make up my mind. If I decide to have it done it will be at Cleveland.

I hope everything works out well for you & yours. Good luck & God Bless.

 

[ALCapshaw2]

Since you will be getting a mechanical valve, you may want to familiarize yourself with the options available.

To my mind the Best 2 choices are between latest and greatest in technology from On-X (introduced in 1996 with over 70,000 valves placed in 64 countries) or the St. Jude (Master's Series) which holds the record for durability at 30 years and counting. I believe that CC is now offering both choices. Dr. Pettersson has the most experience implanting On-X Valves at CC. His patients all speak very highly of him, both personally and professionally. He is in the Best-of-the-Best Category and is World Famous for his skills.

See www.heartvalvechoice.com, www.onxvalves.com and www.sjm.com for details on their offerings. You may also be interested in knowing that ALL of the bi-leaflet mechanical valves produced in the USA use pyrolytic leaflets designed in part or full by Jack Bokros, Ph.D. whose group created pyrolytic carbon and have refined it through the years. Do a Search on VR.com for "Bokros" to find several posts detailing his background.

(MY preferred choice for the Mitral Valve is from On-X because it has the lowest rate of 'morbid events' such as stroke from clots and NO reports of Pannus Tissue Growth to date. See Threads entitled "St Jude and On-X vs St Judes")

'AL Capshaw'

 

[susiesknight]

I totally relate to you although I was 58 when they cut on me 3/11/09 AVR for BAV, with few noticeable symptoms. I compared my journey to grief stages: denial, anger, bargaining, depression, and finally acceptance. Giving it all to God helped remove the decision making and He lead me to the best surgeon with the correct procedure which resulted in a heart better than the original! The waiting is truly difficult(elevated my usually great BP) as I mulled over the upcoming surgery for nearly 4 months, so stay busy. This forum really helped to validate me since I knew all these wonderful people all over our planet could identify with me, making the world become my neighborhood of "heart" friends. God Bless.

 

[Freddie]

Welcome abroad Jax.
Once I was put on the surgeons waiting list, I was expecting at least a 6 week wait for surgery. They called me in 3 days later for pre-op tests and surgery was the following day I was in so much denial that I didn't have time to be scared nor did I have time to snoop out the internet.

Your very fortunate to have found this forum when you did, I found these fantastic people 3 months after my surgery. So ask any question you need to. We're family now and we'll help you in any way possible.



BTW, where about's is your family in Canada?

 

[Jkm7]

Everything you are feeling is so normal and the same as most of us who have walked the road you are walking. Please take comfort in seeing so many of us came through it just fine and our lives are full and active and that would not be the case without the surgery.

Many of us agree the weeks waiting for the surgery are the very worst part of the experience though, of course, we have to acknowledge that sadly a few have unexpected complications.

You are going to one of the finest heart centers in the country and among the best in the world. You will get excellent care, you are young and sound as though otherwise healthy...... You have every reason to think you will do fine.

All doctors know the stress and anxiety of awaiting OHS and most are willing to prescribe chemical help to get patients through this the best they can. Call your doctors and ask for an anti-anxiety. Why suffer more than necessary? This is the reason these medications have been created.

Happy you found us and we are more than happy to help you through this in every way we can.

I've had two OHS and without VR.com, I dson't know how I would have gotten through my second and recovered from my first.

Keep in touch!

 

[jax]

most of my family lives in melbourne ontario, and a couple family members are in london, ontario. it's isn't a long drive to cleveland about 6 hours but with everyone having their own lives that 6 hour drive can be difficult. This forum is going to prove to be very helpful as it has already made me feel better. i know i will still have my ups and downs as i wouldn't expect anything else. it is easier to talk to people who have gone through it. my husband and family have been very supportive and try there very best to make me stay positive and for the most part i have been fine. As surgery gets closer i am looking forward to hopefully a quick recovery with no problems afterwards. My uncle was born with a hole in heart and has been through 3 OHS. He now has a mechanical valve in place of his aortic valve. he was telling me about his coumadin and he only has to go in for level testing now every 6 weeks. this valve has served him well for 17 years so far. i will say one thing after finding out what i need to go through it is definitely going to make me stop and smell the roses so to speak. It seemed i was always so busy either working or doing my housework and it made me feel so stressed most of the time that i wasn't enjoying the little things in life. All of this has given me a new perspective and made me realize that all of those things that seemed so important weren't so important after all. i love nothing more these days to go outside and walk around my 2 acres and listen to the birds chirp and feel the breeze and watch my chickens. and anything else that i happen to notice while i am out there. when i was talking to my father yesterday after getting the phone call with the date he was telling me how yesterday was my grandfather's birthday and my surgery date is my grandmother's birthday. Both have passed away. And over the last few years i have always said that someone is looking over me. And now more than ever i believe that. I am not normally the type of person to go to the doctor unless something is seriously wrong and when it got to the point i couldn't get to sleep because i was having such a hard time breathing i knew it was time to go. My family doctor was right on the mark thankfully and it amazes me that she was. after all even after she had sent me for my first echo and chest xray before i had seen the cardiologist she was telling me that i would most likely need the valve replacement.

 

[MissMelis]

Jax,

That's my sister's name yay!

I am glad you have found us!
This surgery is going to help you walk around your beautiful two acres without being short of breath - try to focus on that if you can instead of the crappy stuff like the 'just in case' paperwork. (BTW, that's what really freaked me out too).
We're all here to support you, and it sounds like you have a great supportive family too. Hang in there! The wait is the worst part. You can do it!
<hug>
Melissa