Hi, PVR in 5 days

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Hi, PVR in 5 days

Postby Sctb78 » Sat Aug 02, 2014 11:06 pm

Hey,
I was born with Pulmonary Stenosis and had a valvotomy aged 3. Now 36, it is time for a PVR and possible Tricuspid repair at the same time.
I'm scheduled to get this done in 5 days. I have a mix of emotions, everything I have read seems to state this is a relatively low risk procedure but I still have that bad feeling at the back of my mind which I can't shake.
Cardiologist and surgeon think I should be fine, I'm (relatively ) young, fit, don't smoke and have no other health problems. I'm still managing to cycle around 200 miles a month, although I am getting slower than I used to be
Sorry for rambling on, I was just wondering if anyone else has any experience or wisdom they can pass on to help me get through this?
Sctb78
 
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Re: Hi, PVR in 5 days

Postby Forlyd » Sun Aug 03, 2014 4:19 pm

Hello,
Been there, done that. Real scary !
I, similar to you had 2 big surgeries one at age six, and again at seven years old. At twenty seven years old I had a Potts Tof correction with a "Piggy" valve to replace my Pulmonary valve. The odds against success were evens. I am talking about going on half a century ago !!!
Yes, I had the thoughts of "What if this that and the other". But one thing is certain. Your valves will not improve !
Now is the right time, when you are feeling good and your specialists believe you have the best chance of making a quick and long lasting recovery. No surgeon wants to wait until the valves are too far gone to make success at all dodgy !!
You are in good hands so don't make yourself worse by worrying. After the op you will wonder what you were so stressed out about.
I would not hesitate to go for your op if I had the chance. Unfortunately, on Friday I was told that surgery to my severely leaking Tricuspid valve would be extremely dangerous and my "Piggy" valve didn't look too happy either !! My health is not good enough to make surgery an option !
You are in a good place so grab the opportunity.
Love from old Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Forlyd
 
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Re: Hi, PVR in 5 days

Postby Sctb78 » Mon Aug 04, 2014 2:11 pm

Hi Lydia,

Good to hear from you and thanks for the advice. I have no though of postponing surgery or even cancelling. I know this is the best thing for me. However, i feel pretty good just now, surgery is going to change that. I guess i should be glad i have had no real detrimental symptoms other than tiredness and some swelling in my ankles. As you say i should do this when i am at my fittest for the best chance of a speedy recovery.

I'm going to approach this with a positive attitude and visualise a successful outcome. There is no point worrying about something i cannot control. Let's do this!!

Scott
Sctb78
 
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Re: Hi, PVR in 5 days

Postby Sctb78 » Tue Aug 05, 2014 6:14 pm

Gutted :x .
Op postponed due to the surgeon having to take an emergency admission, now have to wait another 3 weeks or so before a date becomes available and go through all the worrying again :( .
I guess there is nothing i can do but to think positive.
Scott
Sctb78
 
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Re: Hi, PVR in 5 days

Postby Forlyd » Tue Aug 05, 2014 9:31 pm

Hello again Scott,
You have every right to feel gutted. But on the other hand, please give a little thought for the poor soul who was in such a desperate situation that they needed to take your spot ! I know we are all in the "DOO DOO" but some are in a bit deeper than we are ? I am always aware that no matter how bad I feel, there is always someone else worse off than me !!! As you say , you are feeling good and ready for your op. Let off a bit of steam. Those three weeks will seem like forever, but they will pass quicker if you try to keep busy.
Take good care of yourself,
Love from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Forlyd
 
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Location: Newcastle-upon-Tyne

Re: Hi, PVR in 5 days

Postby Sctb78 » Wed Aug 06, 2014 9:57 am

Hi Lydia,

Yes you are right, i should be grateful i am not an emergency case and totally understand the reasons for this happening. I hope whoever was admitted in my place is ok.
The next 3 week will be spent further preparing, more time on the bike and getting as fit as possible to ensure i have the best chance of a speedy recovery!
Thanks for listening!

Scott
Sctb78
 
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Re: Hi, PVR in 5 days

Postby Sctb78 » Tue Oct 28, 2014 10:31 am

Just realised i hadn't followed this up.

Surgery went well as did recovery in the hospital, except for an infected chest drain for which i was pumped full of antibiotics, and I was discharged after 7 days.
I've been walking and even on my exercise bike every day since and i definitely think my exercise tolerance has improved since pre op. I still have some swelling in my feet ankles but nowhere near as bad as before but i still am going to get this checked out at my follow up next week.

Scott
Sctb78
 
Posts: 9
Joined: Sat Aug 02, 2014 10:53 pm

Re: Hi, PVR in 5 days

Postby Forlyd » Tue Oct 28, 2014 12:23 pm

Hello again Scott,
So pleased to hear all went well. Recovery will not be done in a couple of weeks ! It will be fairly slow but a day at a time you will feel so much better. (In my case gave birth to a son 12 months later !!!) In your case no such miracle ? Be patient and the improvement will come.
Best wishes from old Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Forlyd
 
Posts: 231
Joined: Mon Feb 09, 2009 2:04 pm
Location: Newcastle-upon-Tyne

Re: Hi, PVR in 5 days

Postby Sctb78 » Tue Oct 28, 2014 9:36 pm

Hey Lydia,

That's me actually 6 weeks post op today. Seems like yesterday I was in hospital. Recovery does take a long time I've found. I'm just taking each day as it comes, hopefully in a couple of months I'll be fully fit and chasing my daughter about once she learns to walk!

Scott
Sctb78
 
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Re: Hi, PVR in 5 days

Postby Meeks » Thu Dec 17, 2015 3:18 pm

Hi Scott,

Happy to hear you made a great recovery!
I have TOF and need a PVR. I have found bits and pieces of information through the blog but I wold love a thorough account of the experience. I live across the country from my family. I am trying g to decided where to actually have the operation. I curious to know just how long you need people around to help you with cooking, cleaning etc.

I am also wondering about the melody Trans catheter pulmonary valve procedure. I can't seem to find any mention of it on this blog. Have you heard anything about this? I wish someone write a TOF user guide!

Thanks
Meeks
 
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