My time in the waiting room is coming to an end!

[Guest]

Hello Valve replacement people. I learned of this site about 4 years ago and have learned so much from the wisdom and experiences of others. A bit of history (and I have not been highly active here); I am 53 and was diagnosed with BAV in Dec. 2011 (I actually was originally diagnosed 10 years earlier, after my doc heard a murmur and ordered an echo but she downplayed the importance and I kind-of forgot . I knew there was something and I needed to take antibiotics before going to the dentist but the details, I just didn't think about it much.) When it was found again, four years ago, the doc ordered some kind of nuclear scan and it was discovered that I had an ascending aortic aneurysm From that point on, I have been followed every 6 months.

The last time I saw my cardiologist, he told me that because my aneurysm had not grown in 3 years, he wanted me to go to once a year monitoring.I did not feel comfortable and requested a second opinion from the surgeon I met with a few years ago. He said he prefers cat scans, so I had one. At my appointment last Thursday, he said that he would operate within the next 2-3 months. Wow! That is very different than what the cardiologist suggested. So I am ready to do this! Many of the studies I read suggested that the younger people are when the surgery is done, the better. The surgeon is fine with us waiting until January, and if we do that, I can have primary and secondary insurance.My primary reaction is one of relief. In general, I think I coped fairly well with the fear of having an aneurysm; it encouraged me to get really clear about what is important to me (my family, friends, pets and students) and also the importance of trying to be grateful. I hired a trainer/coach, worked through unspoken conflicts with my husband, and developed new hobbies. I believe I will survive the surgery but if that doesn't happen, I am glad for the past 3ish years, and the chance to live according to my values.

So today I am at peace but if it doesn't last, I hope some of you will respond to my questions with the same wisdom and humor I have come to cherish.

Amy

 

[harrietW]

Hello it seems to me we all firstly hurry up and wait and then all of the sudden. Here we are almost out of the waiting room and next thing we are post surgery. Our waiting stories seem somewhat similar. Although l don't have BAV l am waiting for surgery date consult this Tuesday for both AVR and MVR. I have also had the last couple of yrs to heal council and live in gratitude.Found peace and am ready as l think l could possibly be and to learn to live in faith and trust God and my Doctors.
Glad your back online and almost out of the waiting room.
I'm a 55 yr old female waiting double Valve replacement.

 

[pellicle]

Hey Amy

"welcome aboard"

I think everything you write seems like you're on the right path. I'd also agree that waiting a little longer is not a bad thing, in fact I'd be tending to side a little with the cardiologists view that if its not growing there is no urgency. Are you generally asymptomatic?

While its certainly true that "the younger you are the better you recover" I think that a year either way makes essentially no difference and the expression more relates to under and over 60 by 10 years either side.

I like your approach to things , but when I read the bit about surviving the surgery I was a bit surprised. Personally I reckon that the surgery is safer than my daily commute on my motorcycle up and down the express way.

What were the questions? I didn't find any ... but you seem to have answered them all in writing.

Since you're on a similar wavelength, I thought I'd share my latest blog post about "control"

http://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html

best wishes

 

[AmyBL]

Thank you, Harriet. (Not sure why but I am a registered member but when I posted, it recorded me as a Guest? Probably took too long to write my post or something.) There are some similarities between our stories! I am glad to hear that you are at peace, and are ready to move ahead. Replacing two valves at once? What is the recovery like? Does it differ from one valve? One thing I have not really thought about, are we going to have big Frankenstein scars on our chests?

AmyBL

 

[pellicle]

One thing I have not really thought about, are we going to have big Frankenstein scars on our chests?

you betcha

wear it with pride!

I have scar over scar over scar and multiple drain entry points to avoid scar tissue!

 

[harrietW]

Hmm l believe we are AmyBL. I believe we are. Well lm sure l will. l don't really believe that recovery is any longer on the two for one deal. Once they are in there l don't think much else matters .. lol !!!
Sounds like your a survivor and that's what we do here Survive !! And on a more serious note, Scares are the story of our lives they tell a beautiful story of where we've been who we've loved and what we've survived. Wear it proudly Xx

 

[honeybunny]

Hello Amy. like you, I entered a peaceful zone after I felt I had all my ducks in a row so to speak as it seems you have done. I fully expect to survive the surgery but I feel I've said everything I need to say to my children and grandchildren to make things easier for them because that time will come eventually.Also, as pellicle said, I could very well be killed driving to work or in some other fashion. I just try to keep things in perspective.

I've not thought too much about the scarring. My late husband, who had OHS when he was 15 in the early 60s, had one like pellicle and was self conscious about it. He called it his zipper. I have ugly scars from two emergency C-sections so one on my chest makes little difference to me

Glad to meet you and keep us posted as things progress.

 

[cldlhd]

My scar seems pretty flat and it's starting to fade. I'm seven and a half months post surgery but I'm sure there's a variations amongst individuals and surgeons.

 

[cldlhd]

maybe that'll work better

 

[AmyBL]

Thanks to all who posted. Tomorrow I see the cardiologist. My husband is coming along, too. He is much less at peace with the idea of me having surgery than I am. I agreed that if the cardiologist has a compelling reason to postpone, I would get another opinion. At one point, when we met with the surgeon, he said that the aorta is twice the size of my normal aorta so I can't imagine there is a good reason to wait, but I guess we will see what the doc says tomorrow.

Thanks Childhood (not how you spell it) for the scar photos. And of course, thanks Pellicle, too. I guess I am not as evolved psychologically, as some of you (or perhaps I am vain) but I hope my scar fades . . . quickly! But perhaps getting to surgery come before scars.

I will post later,

AmyBL

 

[honeybunny]

Amy, Paleogirl posted a link to photos of her scars in the thread Merderma, Vitiman E... They don't look that bad.

 

[Paleowoman]

Hi Amy - in this thread I posted photos of my scar at about one week, at about six months, and two days ago at 21 months: http://www.valvereplacement.org/for...-shirt-toots/44053-my-incision-scar#post44053 You will see how it changes and that at 21 months mine is just a thin white line - not Frankenstein chests at all !

 

[AmyBL]

Paleogirl, the scar is barely noticeable; no Frankenstein scar for you! That is nice to see. Thank you.

Tomorrow I need to call the office to schedule the heart cath. One more step closer to a decision. I continue to look forward to the other side of surgery.

AmyBL

 

[harrietW]

Yes Paliogirl it is really quite amazing how well your scar has healed! ! ! Impressive Xx

 

[Paleowoman]

Yes Paliogirl it is really quite amazing how well your scar has healed! ! ! Impressive Xx

Now is that due to my healing rate or did the surgeon do a good cutting and sewing job ?

 

[maisiejane]

Hello stranger, wow you have healed really well, the top half of mine is like yours but then it has turned keloid in the centre section then ok in the bottom part, I have no scars at all where my drains were. Hope you are keeping well love Deb x

 

[Paleowoman]

Hello stranger yourself Deb !!!! Sorry to hear you got keloid in part of your scar. Just emailed you ! love Anne x

 

[harrietW]

Ladies I didn't understand what keloid scaring was so l googled it. Im sorry that it has happened to you. It obviously can be painful and isn't really easy to control or have removed. Another bit of information to keep in mind. Thx u Hope you can get it treated.

 

[W. Carter]

Hello Valve replacement people. I learned of this site about 4 years ago and have learned so much from the wisdom and experiences of others. A bit of history (and I have not been highly active here); I am 53 and was diagnosed with BAV in Dec. 2011 (I actually was originally diagnosed 10 years earlier, after my doc heard a murmur and ordered an echo but she downplayed the importance and I kind-of forgot . I knew there was something and I needed to take antibiotics before going to the dentist but the details, I just didn't think about it much.) When it was found again, four years ago, the doc ordered some kind of nuclear scan and it was discovered that I had an ascending aortic aneurysm From that point on, I have been followed every 6 months.

The last time I saw my cardiologist, he told me that because my aneurysm had not grown in 3 years, he wanted me to go to once a year monitoring.I did not feel comfortable and requested a second opinion from the surgeon I met with a few years ago. He said he prefers cat scans, so I had one. At my appointment last Thursday, he said that he would operate within the next 2-3 months. Wow! That is very different than what the cardiologist suggested. So I am ready to do this! Many of the studies I read suggested that the younger people are when the surgery is done, the better. The surgeon is fine with us waiting until January, and if we do that, I can have primary and secondary insurance.My primary reaction is one of relief. In general, I think I coped fairly well with the fear of having an aneurysm; it encouraged me to get really clear about what is important to me (my family, friends, pets and students) and also the importance of trying to be grateful. I hired a trainer/coach, worked through unspoken conflicts with my husband, and developed new hobbies. I believe I will survive the surgery but if that doesn't happen, I am glad for the past 3ish years, and the chance to live according to my values.

So today I am at peace but if it doesn't last, I hope some of you will respond to my questions with the same wisdom and humor I have come to cherish.

Amy

Everything will be fine. Get it done asap and start living! Before surgery there is a lot of fear about the illness and sudden death among other things. After the surgery about 8 - 12 months post op you will not hardly think about it at all anymore. Thats freedom!

 

[cldlhd]

Everything will be fine. Get it done asap and start living! Before surgery there is a lot of fear about the illness and sudden death among other things. After the surgery about 8 - 12 months post op you will not hardly think about it at all anymore. Thats freedom!

He's right, when I got my diagnosis in March 2014 I thought that was it but now,8 months post , I feel totally different. Almost like I was being overly dramatic ( must be the English side of me that feels that way ) even though a little drama is understanding in that moment.