Four years yesterday...

[SASKIA]

Hello all,

It has been a long time since I've been on this site. I celebrated my fourth anniversary yesterday. It is always a mixed time for me (I have had very frequent migraines since my surgery), but this time is especially so because my lovely Mum passed away two months ago (at 54), and she did such a wonderful job caring for me post-surgery. I am from New Zealand, but at 26 was living in London and deemed too much of a risk to fly, and so Mum came over and was my sole carer, in a foreign country too - what a job! It actually was a very special time for us and for our bond.

I wanted to ask my fellow survivors this:

I am deeply grateful for the surgery I had, for my surgeons, for my piggy valve (and the pig who donated it!), for all the days I've had since, that I would otherwise never have had. But it is not as simple as the pamphlets suggest; I feel my life has altered hugely since having that surgery. Not just in regards to having frequent migraines, but in the way I see the world. I am certainly more grateful, and try not to sweat the small stuff! I am also more sensitive, probably need more alone time now, and feel forever effected by that time in hospital - a traumatic memory even four years on. I am deeply thankful and feel blessed, but I am certainly changed. A lot of the better! But not all.

I wondered how you 'real people' (rather than the ones in the doctor's booklet who go back to work in 4-6 weeks and never have another care in the world) have found the years after your surgeries? whether you completely bounced back, took a while to recover, or feel the experience has changed your life forever (other than the obvious)? I'm really interested to hear what people think.

Thanks for your time,
Saskia

 

[clay_from_nj]

I wondered how you 'real people' (rather than the ones in the doctor's booklet who go back to work in 4-6 weeks and never have another care in the world) have found the years after your surgeries? whether you completely bounced back, took a while to recover, or feel the experience has changed your life forever (other than the obvious)? I'm really interested to hear what people think.

I'm a 'real people' who was back to work in 6 weeks and have been feeling great ever since, completely bounced back right past where I was before. My life was changed substantially in that I took this opportunity to get myself in shape and work specifically toward making my heart stronger than ever before. I firmly believe that something this major can't help but have an effect on your life, but which way that goes is entirely up to you.

One ought never to turn one's back on a threatened danger and try to run away from it. If you do that, you will double the danger. But if you meet it promptly and without flinching, you will reduce the danger by half.
- Sir Winston Churchill

 

[neil]

we all react different and repond different to ohs, good luck to those who recover quickly but for others it can be a long haul, and the recovery process is not entirely in our hands, it took awhile for me to get over ohs and had to be admitted to hospital on more than one occasion, but thankfully the path is now a lot smoother,saskia a lot you say is true.

 

[clay_from_nj]

I must say, Neil, you do seem the type to have taken the bull by the horns, or should I say, the pig by the ears!

 

[neil]

ha ha and if ever want to go truffling am your man lol

 

[knotguilty]

Personnally SASKIA, First congratulations on four years!!! I feel for those of us that have been through OHS, there is something else in life we are meant to do, like helping people on this web site. I certainly appreciate life more with my wife and kids. I look at the beautiful sky and think, how lucky I am to be alive. I appreciate everyday and try to make the most of it. I was lucky with my surgery in that I only had the bad aortic valve and had a mini AVR, and I have been running and working out since around 1997 when my youngest was born. So I weatherd the storm pretty well. Hopefully God continues to bless me and I will see my grandkids some day. There is a lot to look forward to, but I take it a day at a time. I am definetely changed from the experience.

 

[SASKIA]

Thanks to you all for your feedback, I appreciate it!

 

[pellicle]

Hi

It is always a mixed time for me (I have had very frequent migraines since my surgery), but this time is especially so because my lovely Mum passed away two months ago (at 54)
...
I wanted to ask my fellow survivors this:
...
But it is not as simple as the pamphlets suggest; I feel my life has altered hugely since having that surgery. ... but in the way I see the world. I am certainly more grateful, and try not to sweat the small stuff! I am also more sensitive, probably need more alone time now, and feel forever effected by that time in hospital - a traumatic memory even four years on.

it seems quite recently that I have had this conversation on here with another member. I feel the same. I had my first surgery as a kid and grew up knowing all the possibilities. People would tell me that I could die, back in the early 70's the risks were higher.

whether you completely bounced back, took a while to recover, or feel the experience has changed your life forever (other than the obvious)? I'm really interested to hear what people think.

I would say that I bounced back physically but would say that I developed and evolved emotionally after my surgeries. The same too happened as a result of coping with my Mothers death (some years ago) and more recently the deaths of my Father and my Wife.

Its very hard to remain here when people who have cared so much for me have gone. My mother died back in 2006. She was a wonderful woman who cared deeply for me and went through much to be there by my side as a child having surgery and again helping as she could (for I lived in a different city) in my late twenties when I had my second operation.

Personally (reading between the lines) I wonder if you are perhaps suffering more from the grief you must be feeling than the surgical recoveries. I can only speak for myself when I say that the loss of one whom you love greatly and whom you have a great bond with is a very difficult burden to learn to bear.

I would also (changing the topic) consider seeing a chiropracter or physiotherapist. Its possible that the migrains you are getting are related to the way things get pushed around (like your back and neck) during the surgery. It is possible that it has had a subtle effect on your posture and this could be causing the migraines.

My best wishes and I hope you find peace.

 

[SASKIA]

Thank you Pellicle I have replied to your private message, but forgot to say that I am really taking on board your comments in another post about multiple surgeries. I chose a tissue valve this time because I would like the opportunity to have children. I also have a great fear of warfarin as work in a complementary health field and see a lot of people with terrible skin issues, fatigue etc on warfarin. But a few different posts I have read here in the last few days have me reconsidering the idea of opting for another tissue valve when the time comes.

I have tried many things for the migraines (and I am an acupuncturist): osteopathy, massage, chiropractic, acupuncture, minerals and vitamins, Chinese and Western herbs to build energy / resilience, yoga.... But as you say there certainly is a correlation between my neck and chest and the migraines; the muscles in these areas are now incredibly reactive to weight, tension etc and I could certainly do with improving my posture!

It is just a funny mix of feeling incredibly grateful and blessed, and feeling bereft and despairing at times. I have been surprised at how 'ok' I have felt since Mum's death (she had a very short but very rapid decline, 6 weeks from diagnosis of melanoma to death), because she suffered so greatly. But my body holds my secrets and lets me know all is not as 'ok' as I think.

Thanks again for your sharing and words.

 

[Agian]

Wise words Saskia. Sorry to hear about your mum btw.

 

[pellicle]

Hi

I see this after replying to your PM

I have tried many things for the migraines (and I am an acupuncturist): osteopathy, massage, chiropractic, acupuncture, minerals and vitamins, Chinese and Western herbs to build energy / resilience, yoga....

well you're certainly on the right path in terms of trying possibilities.

But my body holds my secrets and lets me know all is not as 'ok' as I think.

actually I think this is on the button. However I don't think its trying to keep them secret, I think its a mix of not understanding the language your body is using and the human propensity to 'see things as we wish them to be rather than as they are'. This muddies the waters I think.

Best Wishes

 

[gerrychuck]

I completely agree with Pellicle; our bodies do their best to tell us what's going on, but the messages aren't always that easy to decode. DO work on the posture!

For me, I am just over 1 year post-op. Like you, I had a somewhat traumatic, emergency introduction to this world, and came very close to not making it through. That has definitely shaped my recovery and my view of the world since. I took 3 months to get back to work, and although I feel 100% recovered some of the time, I definitely don't feel that way all the time. I still get some chest tightness and mild shortness of breath sometimes, particularly when I am tired or have been pushing particularly hard at work. I also get a little afib, usually about the time my metoprolol dose is wearing off at bedtime. These things serve to remind me that I have been through a major life experience; I don't really worry, but I am aware that my heart functions differently than it did before my mitral valve decided to suddenly, and without warning, let go. This is kind of a good thing, though; I am continually reminded not to take a single day for granted. I appreciate every day with my awesome wife and sons more than I ever did before, I appreciate every single moment I spend airborne in the clear prairie sky in my aircraft, I appreciate every trip and every new experience. You wouldn't believe how much I appreciated being able to be at my son's wedding 10 weeks after my surgery!

I guess what I'm saying is that our view of life does, and should, change after an experience like we've had. There is some mourning involved, as we may not every really feel "the same" as we did before, but there is also an enrichening of experience that for me more than makes up for it. Don't be concerned that you have these feelings; I would be far more concerned if you didn't! To all those complex emotions, you now have the added grief of losing your mother, and her role in your recovery probably is much more on your mind these past couple of months, which probably brings you back into that time much more than usual. I find that myself; most of the time I don't think too much about my experience on a day to day basis, but things happen that remind me and take me right back, and I feel those emotions much more sharply again for a short time. Embrace it, don't fear it. It's a badge of honour that reminds you that you have come through something that most people will never understand. Take care

 

[Duffey]

Congrats on #4 and condolences on the loss of your mum. I'm 8 and a half years out, and although the first few years were tough (my mother had died about 6 months before my replacement), I can honestly say that there are many days, separated by long periods of time, that I never consider my AVR. I suppose you could say I've completely bounced back, but it is a different "me". We change and evolve as we go through life and every event shapes us. It's a process, but in my case, it's been a good one.
Best wishes,
Mary

 

[SASKIA]

Thanks very much Gerrychuck and Mary for sharing!