Newbie looking for information & advice

[Anna7156]

Hello, Im new to this forum but wondered if anyone else on here had any information/experience of CCTGA (congenitally corrected transposition of the great artery) ? Which basically means the bottom of my heart is back to front. I have recently been diagnosed with this along with an enlarged heart plus leaking valve plus hole in the heart. Very little information to date from our overstretched NHS and am currently on a professor of cardiology's pending pile and as yet not on his waiting list, so basically he has not yet looked at my notes & test results from August 2017. So ANY information anyone has would be helpful. I have joined a slimming club as I thought weightless may help but ANY other advise would be great. Many thanks.

[Helen_BHF]

Hi Anna7156 , welcome to the community. Sorry to hear of your diagnosis, that must be a lot to deal with. The BHF has information on heart valve disease and transposition of the great arteries. If you'd like any advice our Heart Helpline has cardiac nurses who can answer your questions: bhf.org.uk/heart-health/how...

bhf.org.uk/heart-health/con...

bhf.org.uk/publications/chi...

Really hope this helps Anna, hopefully others on the community will be able to share their experiences too.

[Anna7156 in reply to Helen_BHF]

Hi Helen_BHF, Thanks so much for your swift reply. I will look on both links and maybe I can find more information. I have contacted our GP today who is surprised I have had no appointment to date and he is tackling it two fold. He says he will contact the hospital departments for the results of my MRI scan and CPET as he has not yet received them next he said he will contact the Cardiology professor personally and hopefully more things along. Fingers crossed.

[Helen_BHF in reply to Anna7156]

No problem! I hope it helps. Keep us updated on how things go

[Anna7156 in reply to Helen_BHF]

Hi Helen_BHF, Just an update of my condition and maybe of help to anyone else on here with the same condition. Since writing I have had a number of appointments with the Professor of Cardiology and the head Cardiologist of the heart failure clinic. I am currently on a cocktail of medication for my heart and am awaiting the outcome of an interdepartmental meeting regarding my case. I am on Beta Blockers and Ace inhibitors to slow my heart down. ( As I have an ejection fraction of just 28) These are now being increased monthly until it is under better control and as long as I tolerate them. Also I am more comfortable now they have increased my water tablets to 60mg . I have just had heart monitor for 24 hours and due to my arrhythmia, the Heart Failure Cardiologist is recommending the fitting of a defibrillator, However due to my backwards heart this has to be discussed at the meeting as it isn't so straightforward. I know that CCTGA is a very rare condition but If anyone else on here has a similar condition I would love to hear from you and how you are doing.

[Milkfairy Heart Star in reply to Anna7156]

Katherine's story in Heart Matters maybe helpful.

bhf.org.uk/informationsuppo...

[Elaine715]

Hi Anna, I just found this forum, and was both wondering how you are? I am in the United States and the parent of a now 9 year old with CCTGA who was diagnosed in utero. He has been asymptomatic, we know he has a mild leaky valve and has had no surgery or medications. I am always looking to connect with and find other people (or parents of) with this unique heart to give me some insight as to what his future might look like. I would be very interested in any information you are willing to share (how old you were at diagnosis, looking back, were there symptoms that could now be attributed to your unique heart, how things are going now, etc...). One of the more frustrating aspects of this diagnosis is that there is no evidence based medicine to follow. If you do not want to share, then I wish you well on your journey -