A Noobie Veteran...

Matski

Well-known member
Hello all,

My name is Matt...where to start?

Okay, in 1972 at age 1 I was diagnosed with Aortic Stenosis, in 73 it was decided that I needed a valvotomy (there wasnt really anything else they could do for me at the time) which obviously was sucessfuly performed at Santa Rosa Medical Center.

Between 1972 and 1979 I had 7 heart cath's. Was completely asymptomatic until 1979 but started having chest pains and light headedness. Had a check up with a stress test. I spent less than 2 minutes on the treadmill before they stopped it and never left the hospital. Had emergency aortic valve replacement (Bjork Shiley) 2 days later at Brook Army Medical Center with Dr. James Peake and was started on coumadin therapy.

In 1983 my father had been stationed at Elmendorf AFB in Anchorage AK. Civilian Cardiologist noticed an abnormality in my echo but I was completely asymptomatic at the time. Without a qualified surgeon in the area I was medvac'd back to Brook Army Medical Center in San Antonio where my previous surgeons performed my 8th cath (June 17th). I had outgrown the Bjork Shiley valve and needed surgery again but there was nothing they could do for me there. I remember my mother and Dr. George Schuchmann said I had two options and his recommendation was for conference call with Dr. Albert Pacifico. They explained the situation to him and he agreed to see me. I was medvac'd (your tax dollars at work) to Birmingham, AL the next day. I was 12 and couldn't tell what the big deal was. I felt fine and honestly at 12 years old I was invincible...I was more concerned about getting home to before I lost the entire summer. Arrived at June 19th UAB met Dr. Pacifico who didnt want to talk to my parents, only me. I thought that was pretty cool at the time, anyway he agreed to do the surgery and I went under the knife June 21st. I was released from UAB on July 17th.

Had no issues except minor MVR since 1986 which has been monitored but have been completely asymptomatic since then. In 2006 had felt like my heart was beating *hard* and call my cardilogist who set me up with a heart monitor over the weekend. Dr. called me in the next week and said I had heart block and needed a pacemaker which was installed 3 days later.

Fast forward to April, Cardiologist recommends a routine nuclear stress test...finds an abnormality but says they can sometimes produce a false positive and we can follow up in May at my regular appointment. Have an echo done and it corroborates the stress test, a significant decrees in LV function. Dr. thinks I may have had a heart attack, I ask "really? wouldn't i have noticed that?" He recommended a heart cath (#9) which is done a week later, results show no blockage or heart attack but some myopathy. I asked if I can still go on our planned family vacation to Orlando? He says sure...I ask if there are any restrictions and he says no but to come back in 2 weeks for a post op appointment. I when I return for the appointment I'm blind sided by what he has to tell me. I have cardiomyopathy, (honestly I didnt know what that was and didnt want to know...ignorance is bliss!) I start to ask questions but am being careful not to freak out my wife who is 5 month pregnant with our third child. He informs me that due to the MVR which had degraded to severe, I had a significant reduction my LV capacity. I ask what do we do and he says...were doing it. He started me on Carvedilol after the cath, and now informs me that this is the treatment for heart failure, but notes I'm not in heart failure yet and...thats about it. Due to the fact that I'd already had 3 sternotomy's and the build up of scar tissue i was not a candidate for another open heart and I didn't qualify for the trials in place for less invasive procedures he had checked into. Basically, grin a bare it...when I asked about my outlook I couldnt get an answer. As we were scheduling my follow up the wife lost it, which was to be expected. I walked her to her car (we met at the Dr.) got her calmed down and sent her home. I walked back to my car and settled myself down and drove home. Two weeks later I followed up with my cardiologist who said he done some checking with his colleagues at the Heart Place and set up a surgical consult for me at Baylor Dallas. I asked why the about face regarding the surgery? He said we needed to explore if the risks outweigh the benefits. I was thrilled, now I had an option...something I could do about it. Two weeks later I met with Dr. Matter at the Heart Place at Baylor. I did some research on him and turns out he studied under Dr. Pacifico my last surgeon at UAB. He looked at the details of the cath and my history. He seemed suprised at the Konno done at UAB and had high regards for Dr. Pacifico and his skills. After a quick physical check he agreed to do the surgery saying this was by no means easy but felt my chances are very good for full recovery and asked when I wanted to schedule it. I paused a second and told him that I wanted to wait until after my son was born...you just never know, you know. Anyway, he agreed and I have my 2nd consult with him tomorrow to schedule the surgery.

Well , that's where things stand. I'm still asymptomatic and honestly ready to get this over with. I've checked with my two previous surgeons (1979 & 83) both were in agreement with the prognosis. I queried Dr. Pacifico about Dr. Matter and he told me he admired him, he was a good surgeon and I was in good hands.

I guess the reason I signed up today and started posting is...well...how do i explain this. When I was a kid, it was no problem. As i mentioned above kids are invincible, now i'm an adult with two small children and another on the way. I started stressing a few weeks ago and primary care physician prescribed me some stuff for stress, i took it for a few days but quit. Actually, I think I finally am good with. I talk to my wife about it but its not the same as talking to people who are dealing with similar problems.

Anyway, i'll be checking in regularly and look forward to meet all of you. I'll also let you know the results of my appointment tomorrow. Talk to you soon.

Matt
 

Freddie

Well-known member
Hi Matt and Welcome.

After reading your post...twice, I'm thinking:

How soon after your new arrival would you consider surgery? Something to think about. Can you wait 5 months? (3 months till delivery & 2 months for the 5 of you to get into a routine)

- You do realize you will not be able to lift anything for at least 2 weeks and after nothing heavier than 10bls after that, which means no holding a new baby.
- Your wife will need your help with the other children once she comes home, unless of course there are family members around you can count on.

As a child you probably don't recall any restrictions, but there will be some this time around.

These are just my thoughts and I hope I didn't 'stir the pot' and add to your stress.

Good Luck tomorrow.
 

Matski

Well-known member
Thanks for the comment Freddie, actually I'm shooting for about two months after the baby comes (right after thanksgiving). Doing this for a couple of reasons.

1. Just in case my wife needs a C section I'll have the time to help her until she gets back on her feet.

2. Dr Matter said he feels I need a 6 week recover time before he will release me for full activity and to go back to work. I work for Japanese company and business slows at the end of the year for us plus they (HQ in Japan) usually dont come back until the second week of january in japan which is about the time I should be good to go back to work.

3. While we have no family within 6 hours of us, neither of my inlaws are working at the moment and plan to come down about a week before the baby is due to watch the other two while I'm at the hospital with my wife when the baby comes. We're going to ask them to come back the week of the surgery and stay through Christmas to help out until I'm back on my feet.

4. My LV capacity right now is at about 35%, Dr. Matter wants to do this as soon as possible but understands my unwillingness to not do anything before Chase arrives.

5. Between my cath and the baby, my deductible is PAID already! :p Gotta keep a sense of humor right?

I do remember the restrictions as a kid...in fact I remember being threatened in the hospital with restraints if I didnt stop running around so much. I'm sure my nurses hated me...and the Dr's let me get away with murder. :)
 

TXWildflower

Well-known member
Matski, you have had one incredible journey it seems to me. My hats off to you that I don't read one bit of 'why me' in there. Just this is it and this is what I live with and you just keep on keeping on. Best of luck on the new little one and all the best to your wife too. Gotta be a lot of stress on an expectant mother. Y'all hang in there.
 

Ross

Observer
Welcome aboard. I can fully understand where your coming from. I'd do the same thing if I were in your shoes. Just take it as easy as possible until you can get fixed.
 

john79t

Well-known member
Like Ross said take it easy. After all you have to operate the video camera at you new son's college graduation. It is your job so make sure you are there to do it.
 

kfay

Well-known member
I guess the reason I signed up today and started posting is...well...how do i explain this. When I was a kid, it was no problem. As i mentioned above kids are invincible, now i'm an adult with two small children and another on the way. I started stressing a few weeks ago and primary care physician prescribed me some stuff for stress, i took it for a few days but quit. Actually, I think I finally am good with. I talk to my wife about it but its not the same as talking to people who are dealing with similar problems.

Matt

Matt, I can totally understand where you are coming from here. I was diagnosed with a congenital heart condition at birth. I was in and out of the hospital way too many times. I finally had heart surgery when I was 17. At the time, I really didn't think it was too big of a deal. I was like you, I just wanted to hurry up and get it over with so I could get back home to my friends. The second time around however, was totally different. As a parent, I was terrified not for me, but for my kids. I didn't want them to grow up without a mother. Of course, everything went fine. My kids weren't really fazed by it at all.

It's too bad that this is happening right on the heals of the birth of your child. But thankfully, you obviously have Dr's who are willing to work with you on this and feel like you have the time to wait. Hopefully your EF will improve after surgery and you will be up and running, so to speak, in no time.

Kim
 

Freddie

Well-known member
Thanks for the comment Freddie, actually I'm shooting for about two months after the baby comes (right after thanksgiving). Doing this for a couple of reasons.

1. Just in case my wife needs a C section I'll have the time to help her until she gets back on her feet.

2. Dr Matter said he feels I need a 6 week recover time before he will release me for full activity and to go back to work. I work for Japanese company and business slows at the end of the year for us plus they (HQ in Japan) usually dont come back until the second week of january in japan which is about the time I should be good to go back to work.

3. While we have no family within 6 hours of us, neither of my inlaws are working at the moment and plan to come down about a week before the baby is due to watch the other two while I'm at the hospital with my wife when the baby comes. We're going to ask them to come back the week of the surgery and stay through Christmas to help out until I'm back on my feet.

4. My LV capacity right now is at about 35%, Dr. Matter wants to do this as soon as possible but understands my unwillingness to not do anything before Chase arrives.

5. Between my cath and the baby, my deductible is PAID already! :p Gotta keep a sense of humor right?

I do remember the restrictions as a kid...in fact I remember being threatened in the hospital with restraints if I didnt stop running around so much. I'm sure my nurses hated me...and the Dr's let me get away with murder. :)
Hey Matt, it sounds like you have everything well thought out and your doctors are working with you - good for you.

All you have to do is to sit and relax in the 'waiting room' and get that video camera tuned-up. :)
 

Mentu

Premium Level User
Welcome, Matt, your experiences provide some perspecive for those of us who have only started having problems in the past few years. Hopefully, you will find this space a good place to come for information, suggestions, questions and reassurance.
 

dick0236

Premium Level User
Okay, in 1972 at age 1 I was diagnosed with Aortic Stenosis
I guess the reason I signed up today and started posting is...well...how do i explain this. When I was a kid, it was no problem. As i mentioned above kids are invincible, now i'm an adult with two small children and another on the way. I started stressing a few weeks ago and primary care physician prescribed me some stuff for stress, i took it for a few days but quit. Actually, I think I finally am good with. I talk to my wife about it but its not the same as talking to people who are dealing with similar problems.



Matt
Matt, you have come to a good place. I went thru the two small children and "what should I do" scenarios with little or no support or information in the 1960a, 70s, 80s and 90s....and frankly, the valve has shaped many of my decisions in life. In hindsight, I let the valve interfere too much in my decision making. I truly am at the point of "acceptance" with the valve....because I finally realize that "I don't know what I don't know". Stick around, your experience as a child going thru this will be valuable to some of the parents who post with questions about their own children and OHS.
 

AgilityDog

Well-known member
Heart Hospital at Baylor Plano is a good hospital with excellent statistics. And there are tons of us in the Dallas/FW area for support, as well as the on-line encouragement.

It sounds like you've done your homework and are in good hands.

Niki (gnusgal) can commisserate about newborns and heart issues/hospital stays!
 

briansmom

Well-known member
Wow, I'm sorry you are facing this with little ones and another on the way. My son's EF has been around 35 for a lot of the last 2 years. Hopefully, that won't be a big deal for you. There are also plenty of people on this site that have had more than 3 OHS.

My thoughts and prayers are with you and your family. Please keep us posted.
 

Jkm7

Well-known member
Matt... Very happy you found us and shared your story. You are an inspriation for how you have handled all this. Lots on your plate but if anyone is up to it, sounds like you are the one.

YHou've done your research, satisified yourself with the need for this and have a very workable plan it seems.

Of course, your're stressed. How could you not be.
I had two OHS in four years, the second being about 18 months ago and the wait was the worst.

If your surgeon is okay with your waiting until Thanksgiving, then that seems to be best for your family and employment needs.

Wishing you the very, very best. You've got a wonderful young family to get yourself healthy for and that is just what you will do.

Hope you'll keep us updated as your wife gets ready to have the baby and you, your surgery.
 

Matski

Well-known member
Thanks to everyone for your kind words and support. I started another thread but need to post the news here as well. My situation had improved, he asked when the our baby was due, we told him October and he said he's recommending we hold off the valve replacement for now, do another echo in February and go from there. He thinks we can hold off till sometime in 2010. Apparently Coreg is a miracle drug. :)

Link to my other post: http://www.valvereplacement.com/forums/showthread.php?t=32353
 

Lynlw

Premium Level User
Hi Matt, Sorry I'm late on the welcome, but I just saw this post. My 21 YO son was also born with complex CHDs so your post really hit home to me. I'm glad to see the coreg is helping and hopefully it will just keep getting better and better. You all are in my prayers, Lyn
 

Matski

Well-known member
Thanks Lyn for your feedback.

I've read yours and Justin's story a week or so back, it made me think back to my mom and the drama she went through with me as a child. The surgeries, the coumadin, the protecting me from myself because I was a kid and kids do stupid things because they want to be like all the other kids. Growing up it was always there (the issues), now that I've had to really face the issues myself, as an adult with children and a family and the consequences that come with it I have a new perspective. After reading about you and thinking about my recent experiences it made me realize what she went through 36 years ago (and still goes through today, I'll always be her baby :p). I called her and thanked her for her taking care of me (even when I didnt want it), something I dont think I ever did before because i didnt really understand when I was younger and later took for granted. It reallly touched her, I have to thank you for helping me see that.

Sometimes we get caught up in everything and forget to address what we take for granted. I'm sure Justin has told you but just in case he hasn't, know that he appriecates everything you have done for him, even when he complained.

I know there are are some cool customers out there with ice running through there veins and nerves of steel who lets nothing get to them but those people have nothing on a parent who has a child with heart disease. Definately the strongest people I know.

Matt
 
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