New to site

A place exclusively for people aged 39 and over to discuss issues affecting older GUCHs

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New to site

Postby Spike105 » Sun Jan 19, 2014 11:32 am

Hi, I was born with Tetralogy of Fallot and had a repair at the age of 8 - this was done 40 years ago. I have had many years of good health but 2 years ago I was told that my heart valves were looking a bit dodgy and will require intervention. On Friday I met my surgeon to discuss what was going to happen. I require 2 tissue valve replacements. Obviously I am aware of the risks. The nurse gave me the details of the SF to look at the experiences of others. Which what brings me to this forum.

I am worried about the surgery but also he did explain that it might not be possible to repair one of the troublesome valves. Since then although I am trying very hard to think positive, I am dwelling on the what-if worse case scenarios. I find myself crying and although I want to be strong I am in fact a complete numpty :(
I have a 14 year old son who is my life, and I want to be strong for him, basically I need to pull myself together - but that is easier said then done!
Any help or advice would be greatly appreciated.
Posts: 2
Joined: Sun Jan 19, 2014 10:41 am

Re: New to site

Postby Forlyd » Sun Jan 19, 2014 3:48 pm

Hello Spike. SNAP!!!
Old Lydia here. As you will see from my signature below, I was also born with Tof and have had a piggy tissue pulmonary valve for the past 38 years. It is still going strong. Made all the difference in the world to me, Two children and six and a half grandchildren later I am sure I made the right choice. I admit I am not in good nick now but a lot of water has flown under the bridge since then.
Yes, my fears before my latest ohs, and the indecision I felt at the time, made it very hard to decide whether to go for it or not. It was one hell of a decision ! But the benefits I saw after it, WOW!!! That little piggy valve changed my life in such a huge way. From "wondering how long I would live" I went to "nothing is going to stop me now I want to live" and you bet your life I have lived !
I would not dream of saying to you that you should or should not "go for it" Sadly that has to be your decision. I know you are in a very lonely place when you are the only one who can make this huge decision. It would be great if we all had someone who could promise a solid gold result.
Open heart surgery is so successful nowadays that there is little need to worry.
If you feel reasonably fit and confident ? One thing, don't take so long to make up your mind that the specialist will say that it is now a bit more difficult because you waited TOO long.
Best wishes from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Posts: 231
Joined: Mon Feb 09, 2009 2:04 pm
Location: Newcastle-upon-Tyne

Re: New to site

Postby Spike105 » Sun Jan 19, 2014 4:40 pm

Thank you Lydia for taking the time to reply. I must admit reading the stories from so many people on this forum has made me realise that I am not the only one to go through this emotional roller-coaster. I am going to have the surgery - my surgeon explained that leaving it alone is not an option and that although there are risks - its worth having a go. I just need to get my head together and get as much support and information as I can, because I do feel naïve about my condition and I think I have not realised how bad things have got.

Its great to hear success stories and the advances in medical treatment have come such a long way since I had my surgery as a child. Thank you for sharing your story and taking the time to read my post :D
Spike (aka Debra)
Posts: 2
Joined: Sun Jan 19, 2014 10:41 am

Re: New to site and like to chat

Postby Reuben White » Sun Feb 23, 2014 10:21 am

Hello my name is Reuben and im new to this site aged 39 and have been recommended to log in to this message board by staff of the Somerville Foundation as would like to meet like minded people of similar age living with a left atrium septal defect....which I was diagnosed with in 2003 following physical exhaustion and time in hospital.
Since the diagnosis I have check ups every 3 years and so far these have gone well showing no needs for surgery intervention and staff at the foundation have been very supportive in given me advise finding more information out about the diagnosis.., saying premature ageing is common, strokes etc..
I also would like to add I continued to participate in an active lifestyle football and gym training and running my own business landscape gardening...and have made a few dietary changes that I have found helpful to date, yet have not had any opportunity to meet similar aged people living with the same diagnosis over the years..
More recently this year I have been challenged with a diagnosis of Big Stiff Toe which is basically a wearing out of the ligament and cartilage in the toe and cracking nails of hand and toes..., and my body is taking longer to recover from physical activity than what I have been used to to date.are these symptoms related to my age, life style and G.u.C.H diagnosis..., I am now exploring in depth more about the above symptoms and participating in yoga, and attending reflexology treatments, to try and minimise the pains that I wake up with and would like a chat with anyone with the same diagnosis pre or post op and look forward in hearing from you in due course..until then I wish you all well and have a good sunday.
Reuben White
Posts: 3
Joined: Mon Jan 06, 2014 2:48 pm

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