Hi everyone

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

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Hi everyone

Postby smiley2 » Mon Mar 04, 2013 11:48 pm

Hello,
I just thought that I would introduce myself. I am 51 years old female who has recently found this forum. I have had a number of operations as a child for the correction of a fallots tetralogy, I am now experiencing some decline in my health and will require further surgery at some point.
It's nice to be able to make contact with others who have or are experiencing similar problems.
Wishing you all well and hoping to get to know some of you better :D
smiley2
 
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Re: Hi everyone

Postby vicki » Tue Mar 05, 2013 9:46 pm

Hi :D

Glad you found the forum, there's lots of support here :D

Vicki
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Re: Hi everyone

Postby Forlyd » Tue Mar 05, 2013 10:02 pm

Hello Smiley, welcome to this forum. Sounds like age is rearing it's ugly head ! We who are getting on a bit find our conditions take some unexpected turns. Look forward to hearing more from you. You sound interesting !
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 everyone

Postby Angie Cameron » Wed Mar 06, 2013 1:39 pm

Hi 2 U

I am like you a fallots tetrology patient but at 56 am slightly older!!! It is good to know there are other people in the world going through similar experiences.

I have just spent a week in Leeds General Infirmary for tests with a view to possible future surgery on at least one of my three leaking valves. The treatment I received is first class and made my stay so much more pleasant as I was petrified going in due to previous horrendous experiences but my fears were allayed on meeting the staff.

I am also hoping to attend the GUCH (now Somerville Foundation) conference this year. Unfortunately I was taken ill last year and was unable to get to Glasgow but fingers crossed they will have got me sorted out in time for me to attend this year.

Hope things improve for you and looking forward to keeping in touch.
Angie Cameron
 
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Re: Hi everyone

Postby smiley2 » Wed Mar 06, 2013 9:49 pm

Hello everyone,
What a treat to have 3 replies, thank you.
It is nice to have the support of others in the same or similar situation Vicki, thank you for stopping by to say hello.

I think you are right about age rearing it's ugly head Lydia. It certainly seems to have caught up with me a little. I used to aspire to being thought of as many things but now the possibility of just being interesting sounds very good and has brought a big smile to my face, thank you :)

Angie, it's nice to speak to someone else with the same condition. I have never before met anyone else with the same condition as me. I have a leaking pulmonary valve and possible a leaking Tricuspid vallve plus a few other problems. I have been told that the Pulmonary valve borderline needs operating on and that if the Tricuspid valve is leaking then it will need operating on sooner rather than later. I am not sure exactly what this means but am having ongoing tests, which will I am sure reveal all. Which of your valves are leaking and do you get very tired?
I was recently having a 5 day heart monitor and was told during this time that I could take the monitor off each day for a brief shower. One day I went to have a quick shower and returned to put the monitor back on when I noticed that one of the leads was damaged. I was a bit horrified thinking that I had damaged it in my sleep, but as I picked it up I noticed that the other lead was completely broken off. I realised that the cat had chewed the leads off whilst I was in the shower. The time you really need your heart monitoring is when you realise that the cat has eaten the leads off your heart monitor! ha ha
I am glad that the treatment you received at Leeds General was first class. I have been referred to Papworth Hospital; they are also first class and I am so happy to be going there. My original surgery was carried out at the Middlesex and St Thomas' hospital; they were also fantastic.
I must find out a bit more about the Somerville Conference; do many people attend? It sounds quite interesting.
Anyway so happy that you have all responded to my message. thank you again.
Love,
Sally :)
smiley2
 
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Re: Hi everyone

Postby paula-43 » Sat Mar 09, 2013 8:08 am

hi sally,
welcome to the forum :)
Paula x
TETRALOGY OF FALLOT
REPAIR 1973
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Re: Hi everyone

Postby smiley2 » Sat Mar 09, 2013 10:40 pm

Hi Paula,
Thank you for your message; it's very nice to have contact with you.
I see that you are also have had repair of a Fallots. It seems that there are quite a few of us out there. :D
Hope to chat more in the future.
Love,
Sally
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Re: Hi everyone

Postby Forlyd » Mon Mar 11, 2013 7:34 pm

Hello Sally,
Sorry to say you are nearly in the same position as I am. This may distress you but, I would feel lousy if I said nothing !!! I would like to have a new tricuspid valve, but I cannot have any further surgery, because my ability to withstand the general anaesthesia is just about zero ! So with "Right Branch Block" and "Severe Tricuspid Regurgitation", the back pressure on my liver has caused liver damage and I can only expect a build up of toxins in my blood and subsequent blood poisoning. Once that happens it's Bye Bye Lydia. Harsh but true !!!
So, Sally if you get the opportunity for surgery to replace your leaky Tricuspid valve, for heavens sake TAKE IT !!!! The price of putting it off, because you may be scared, is much higher than you may realise. Many old tofs would like to pass on their personal experiences but don't do so because they don't want to upset others. I don't see it that way. It is possible you would rather not know what might be ahead if you put off your op, that's fine, but I believe it would be wrong of me not to tell you what could happen.
Hoping all goes well for you.
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 everyone

Postby smiley2 » Tue Mar 12, 2013 12:55 pm

Dear Lydia,
I am so sad to hear that you are so unwell. How brave of you to send me that email, thank you. I do intend to accept whatever treatment they offer. I also have right bundle branch block. The Consultant has said that treatment will have to be brought forward if my Tricuspid valve is leaking. Did you have many symptoms before you found out that your Tricuspid valve was leaking? Do you feel very unwell and have you got good family and friends to support you? I do hope so,
bless you!
Love Sally xx
smiley2
 
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Re: Hi everyone

Postby Forlyd » Tue Mar 12, 2013 8:33 pm

Hello Sally,
My consultant told me after a scan several years ago, that my Tricuspid valve was leaking badly. The first hint of how bad it was came when my doctor, who takes regular blood tests, ( I hate needles ), told me my blood was high in Bilerueben. This is dead blood cells which should be sent to the bowel to be got rid of. The left ventricle, because of the right branch block, has to do more work, and, since the heart is a muscle, the left ventricle, like any muscle being worked hard ( as in weight lifting ! ) it swells. The tricuspid valve is stretched so much by the increasing size of the heart that, it eventually cannot close enough to stop the blood being pumped back into the liver at high pressure and damaging the liver.
Yes I feel very tired sometimes but not all of the time. Legs getting weaker so hubby has to push me in a wheelchair when I go outside. Don't often go out because I love my telly !!! Messed up circulation means I get dizzy when I stand up and I have to hang on to hubby till the blood gets to my head again.
At my last appointment with my cardiologist a few weeks ago, he made it clear that my medications and my angel of a hubby were the only things that were keeping me alive. He said surgery was a no! no! so there was nothing further he could do for me.
Hubby, or my " Imperious Carer" as my cardiologist calls him, has looked after me for nearly 42 years now, and I am sure he will still do his very best to keep me going. Nobody believes he is 77 years old. He still dashes around after me like " a ferret with it's backside on fire" . He is truly amazing for his age.
I can imagine him, when he thinks I am nearly done, bullying the surgeon into trying surgery in the hope he can bring me round like last time I had general anaesthetic. Like me, he never thinks of surrender !
Hope your surgery appointment comes soon before any damage can be done to your liver. Wouldn't do any harm to get your GP to do a bilerueben blood test in the meantime ? If he says you don't need it BULLY THE BUGGER !!!
All the best wishes that all goes well.
Love and hugs 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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Re: Hi everyone

Postby smiley2 » Wed Mar 13, 2013 6:58 pm

Dear Lydia,
The more I hear from you, the more I like you! What a strong, tenacious and generous hearted lady you are!
I also liked your description of the way your husband runs around after you. I will have to remember that one. He sounds quite a treasure. My husband also trys to do a lot for me.
Thank you for taking the time to include some information about the conditions and symptoms that you have suffered from. I now have a clearer understanding, which is helpful. Can you tell me do you know if the damage to your liver took a long time to occur? I will suggest the blood tests after I have had my Echo in a few weeks time.
Sending you and Your deserving husband a big hug.
God bless,
Sally
smiley2
 
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Re: Hi everyone

Postby Forlyd » Thu Mar 14, 2013 5:08 pm

Hello Sally,
I had some idea that my liver was effected when my skin turned yellow with Jaundice and my legs blew up like balloons. I was hospitalised and, after being on a drip overnight, my legs went down a fair bit. After medication from my Gp my normal colour came back. That was about 5 years ago. Now I am a martyr to huge veins on the front of my right leg ( not so bad on my left leg) which indicates that the blood flow back to the heart is being hampered. As I have said, I cannot have my Tricuspid valve replaced so my liver (which is the only organ in the body which CAN repair it'self ) will not get the chance to get better.
If you have your valve replaced you still have time to let your liver self repair !!! So don't get too anxious. You don't have a sword suspended over your head. You still have time. If the cardiologist says your valve is leaking badly, don't wait for them so offer a new valve, YOU DEMAND IT !!!!
Give them some wally Sally,
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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Re: Hi everyone

Postby smiley2 » Mon Mar 18, 2013 9:29 pm

Hi Lydia,
It sounds like you have been through a lot. Thanks for all the information that you have given me; it's all really helpful. I feel better equipped to go forward now. :D
My last lot of tests are early April and then I should know a bit more.
Hope you have a good week.
Love,
Sally xx
smiley2
 
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