Been for my appointment at the LGI today

[buddy2blue]

Hi everyone well I’ve been to the Lgi today to see my cardiologist. It was a bit of an emotional appointment as I have made the decision not to go through transparent. There are more cons than pros for me. It will be palliative care now. All my checks today looked good and he was pleased with my weight loss. He is also going to arrange an exercise test and a cardiac catheter as it’s been 6 years since my last ones. I’m not back to see him now for 6 months. Although he did say to get in touch if I had any issues

[Sunnie2day]

(((HUGS))) It must have been difficult taking the decision to forgo the transplant, Tori, but it is good to hear your consultant feels satisfied with your current condition. Stay cool in this horrific heat and keep us updated. (((HUGS)))

[buddy2blue in reply to Sunnie2day]

It is something I have been thinking about for the 18 months. It is rather ridiculously hot. Yes of corse I will let u know how I’m getting on. I’m doing good at the mo so hoping that will continue for a wile

[lettingoffsteam]

Hi Tori, that was a tough decision to take and I'm glad that you did what you thought was best.I hope you can keep cool in these horrible weather conditions.Lots of love and take care xx

[Pinky1985]

My thoughts are with you and prayers you’re a true inspiration xxx

[Padayn01]

Very tough decision as I know you been waiting a long time for this, but you and the right people around you have made the best decision for you, hope it all works well

[Afibflipper]

You’ve shown great strength in making your informed decision! I think everyone on here applauds you and send love and hugs. Hoping you stay well and keep in touch on here, all the best to you 🤗😘

[Rosiemycat]

I think your a very brave strong and positive person and it must have taken a great deal emotionally to arrive at this decision. Thankfully your doing well at the moment and your Doctor seems to be keeping an eye on you, please continue to let us know on here how your doing.

[stillaboveground]

Hi Tori, What an hell of a decision to have to make, you are a very brave, strong, wonderful lady and my heart and prayers go out to you, we are all here as your friends and supporters and have been on this journey with you and will continue to be here for you. Take care lovely girl. Ruth xxx

[buddy2blue in reply to stillaboveground]

Thank you so much Ruth xxxx

[Livelovelife56]

🫂💖🫂

[Hidden]

Your post has just confirmed what I already knew, that you are a true and genuine inspiration to everyone that wishes to take your message to their hearts.

What a massive decision to make about your health and future and how pleased you must be in thinking about it for the past 18 month and coming to this outcome,

you are truly in control of your destination young lady and I for one completely back the right you have to do whatever you want to do with your life.

As always you are a vast inspiration to many on here and I sure to the ones around you.

Keep just being you……….you incredible individual xx

[Plum53]

Sending lots of hugs a very tough decision to make for you. Wishing you well x

[HeartyJames]

Sorry to hear. hard decision

[juanitamc]

Hi Tori, It must of been a very tough decision to make.My heart and prayers go out to you, we are all here as your friends and supporters.

Please keep us updated, Big hugs xx 😘

[Gazzer83]

Hi Tori, Took the same decision myself earlier this year. The cons outweighed the pros with regard to quality of live and less than good odds of surviving for longer with it.

Live life today for tomorrow is not promised.

[buddy2blue in reply to Gazzer83]

I can concentrate now on enjoying my life and doing the things I want to. I feel so lighter now it like a big weight has been lifted

[stillaboveground in reply to Gazzer83]

My prayers are with you, what a very brave decision to make.

[stillaboveground in reply to Gazzer83]

Such a brave decision to make I cannot think I would be able to do this if I ever had to, my prayers are with both you and Tory, enjoy your freedom, take care. Ruth

[Gazzer83]

Yep. Been enjoying my granddaughters and daughters. Doing what I want when I want, within my limitations. But smile a lot more since I decided.

[buddy2blue]

I can enjoy spending time with my nephew and niece and my family and friends. Without having a Constant feeling of terrible anxiety about life now

[Puffin1963]

(Huge hugs) 🙏you can enjoy whatever days you have - tomorrow isn’t guaranteed for any of us xxx

[Cat04]

You have made a decision which only you can make & that is right for you and of course you will continue to have all the love & support of your followers on here. I wish I had one ounce of your strength & resilience.

As always sending love & hugs to both you & all your family xxxxx

[buddy2blue in reply to Cat04]

Thank you so much Cat. That really means a lot xxxx

[Handel]

Hello Tori. All I can say is well done for looking at the pros and cons of a transplant and for making the best decision for you. Just let that go now and enjoy your life without that weight hanging over your head.Your nephews and nieces will love a more laid back Auntie Tori and so will Penny!

As always, you're an inspiration to everyone on this forum. Such a lovely and brave lady.

Lots of love and hugs. Jan xxxxx

[Qualipop]

I'm surprised at your decision but I applaud you for making it and working out what's best for you. Life is for living. Enjoy it without the anxiety.

[Gazzer83]

Always remember. QUALITY NOT QUANTITY.

[Letsallhope1]

Hello Buddy2blue, I’m a congenital heart disease patient too and still in decent shape but doctors have started talking to me about heart transplant (I’ve done the first blood test to check if I would be on paper suitable for it).Maybe because I’m so new at this idea I cannot fathom the thought to refuse the transplant option but mine is only an ignorant opinion as only at the beginning of the journey and we (GUCH patients) are all very different from each other.

I read your message with mix feelings but with a huge amount of respect and admiration for you.

Wishing you all the best xx

[buddy2blue in reply to Letsallhope1]

What CHD do u have

[Gazzer83 in reply to Letsallhope1]

I have other health issues which had an effect on my decision.

[Letsallhope1]

Double outlet right ventricle with TGA, mild pulmonary stenosis, VSD and and subaortic stenosis, basically a complicated Tetralogy of Fallot.Double lead CRT-D

Struggling with AF too but luckily successfully corrected with cardiac ablation and grade 3 (I think) heart failure now.

I’ve started on entresto recently and it seems to give me much more energy and increasing my Ejection fraction to 40-45-%

[buddy2blue in reply to Letsallhope1]

I have tricuspid atresia pulmonary stenosis recurring AFIB pulmonary stenosis sinus brachycardia and heart failure. As well as a duel lead pacemaker and two stents in my pulmonary archery

[Letsallhope1 in reply to buddy2blue]

Yeah, read it on your profile.Well, wish you all the best

[buddy2blue in reply to Letsallhope1]

Thank you

[valspia]

Best wishes, good thoughts. Please keep up regular updates and know that so many people care so much about you! 🥰