Hello. I am now 4 weeks post mitral & tricuspid valve repairs. I wanted to update and just say the waiting IS by far the worst bit. Yes recovery is a struggle ...Read more
Hello. I am now 4 weeks post mitral & tricuspid valve repairs. I wanted to update and just say the waiting IS by far the worst bit. Yes recovery is a struggle physically and mentally but it’s all a constant path to recovery and at the moment I am so pleased I had the surgery. Already I am feeling the benefits and wonder if that’s also due to the improvement in oxygen supply I will now be receiving. Somehow despite the difficulties initially ie total loss in confidence in my body and extreme weakness, there is now more clarity too. The team at Barts we’re first class and helped me feel safe and put my trust in what they did. The main battle for me in the end was having to basically hand over your life to someone for a few hours. I seriously considered doing a runner. But they talked to me before surgery and gave me so much time I felt safe by the time I entered the prep room albeit terrified too and joking around In defence. I feel incredibly lucky to have been treated by these geniuses. Following hospital I was unable to return home directly because my brother could not stay with me as planned. Instead I booked myself in to a convalescence home and it was the best decision as I felt safe but was able to be independent too. I met some wonderful people along the way both fellow patients and professionals and that’s what made this experience so very special. I am beginning to make plans ie travel and work, something I found impossible before my op. I couldn’t think past it. The immense relief afterwards for me overrode any minor setbacks. I have had some episodes of flutter or arrhythmia and a numbing of my right arm and leg which only lasts a few minutes. These I later found out are part of recovery but at the time can be a bit alarming. So it’s good to be forewarned, any information helps. I just want to say a big thank you to all the people on social media who have helped me through, and I hope to help others in the future in return.
Julie Copeland So glad you are doing well! I feel the same- saw tremendous improvement after surgery!
Bonnie Stone-Hope Wonderful news. Thanks for sharing. So pleased to hear that you are progressing so well.
I was diagnosed with severe mitral regurgitation following a walking holiday in August this year. I am due my pre-op appointment at Barts in London on 29th ...Read more
I was diagnosed with severe mitral regurgitation following a walking holiday in August this year. I am due my pre-op appointment at Barts in London on 29th Nov. I met my surgeon for the first time a few weeks ago. I have learned a great deal about the experience and procedure I am having through social media. Including Adams book. As a mental health professional I am astounded at how little information is given through the cardiac team. I have had too much time on my hands as I cannot work at present which is unfortunate but at the same time it has given me time to prepare as much as I can. The hundreds of accounts from other people have helped alleviate my anxiety and although the awareness is daunting of what I may or may not experience during and after treatment at least I will not feel alone. I want to thank in advance all the people who share their experience and hope I can help others at the same time. The most prevailing emotion at the moment is fear that I won't survive which I understand is normal. But that fear has helped me prepare things IF things go wrong which makes it easier for my family. People say ' you will never be the same' well already I am changed. Everything is brought into focus, highlighted. Things do or don't feel more or less important. You find out very quickly who really cares for you and realationships change, become more honest, which isn't always easy. Having been a very independent and active person I am learning to accept help and support. It takes you back to the very basics, the very bones of what's important. I feel already that I am on a very different journey now. I am looking forward to reading others accounts and being a part of this community.
Carmel Power Hi Celia. I have mitral regurgitation as well. All the best with your journey.
Rita Savelis Thanks for sharing Celia. Everything you say is spot on. Being honest about what I was going through ... Read more
Rita Savelis Thanks for sharing Celia. Everything you say is spot on. Being honest about what I was going through was really important and helpful for me. And having a space in which to write it.
And yes, mental health information is often sorely lacking.
For me it was essential to work through this experience before and after with therapists. It was still very hard but I had a space to put my own words on it.
Take care, and keep writing.
Danielle Smith Hi Celia, I'm also based in the U.K. And had severe mitral valve regurgitation. I had a successful re ... Read more
Danielle Smith Hi Celia, I'm also based in the U.K. And had severe mitral valve regurgitation. I had a successful repair just over 3 weeks ago completed by Mr Francis Wells at Papworth in Cambridgeshire.
I was also extremely anxious prior to surgery. I found the anxiety symptoms far worse than the MV regurgitation symptoms. I waited 7 months for surgery and it was by far the worse part of my journey so far.
I found news of the surgery terrifying and it took me quite sometime to get my head around it. By the time surgery was finally planned I was resigned and just wanted it over with so my life wasn't in limbo.
In my experience the thought of surgery is far worse than reality. Although the first few days were no picnic I have found recovery to be easier than I expected. My pain level is minimal and it's more uncomfortable due to the healing sternum than anything else.
I have good days and bad days but am getting better. The support of my family and friends has been key.
The NHS is underfunded and understaffed. I mean no disrespect to the team at Papworth. They were all fantastic but over stretched. I recommend getting family and friends to help as much as possible in hospital. Mine completely ignored visiting hours and came to help me at all hours initially.
Papworth operate a team of cardiac support nurses - they support patients before and after surgery both in terms of physical and mental health. They were also present at my pre-op to talk through any questions or concerns. Do Barts offer a similiar service that could help you?
This forum is a wonderful source of information and support. Keep posting and you'll always find a ear to listen. Danielle x
Kathy Blank Celia- this community is the most helpful
and caring resource for honest and compassionate support. ... Read more
Kathy Blank Celia- this community is the most helpful
and caring resource for honest and compassionate support. I am now 9 mos post MV Repair and still find this community essential to my optimal physical and emotional well being. During every step of my journey any question or concern I raised brought immediate and helpful information from this community. I found it empowering to research and prepare and learn to accept help so that I could fully focus on recovery. Your independence and self awareness will serve you well as long as you are realistic and learn to listen to your body during recovery! My thoughts and prayers for a full recovery and please reach out if you need any information or support!
Celia Waterkeyn Thankyou for helpful replies and warm welcomes it means a lot. My friends and family can only compreh ... Read more
Celia Waterkeyn Thankyou for helpful replies and warm welcomes it means a lot. My friends and family can only comprehend so much for so long. My energy levels are dropping and despite the help of medication I now realise how important this op is.
Bonnie Stone-Hope You are not alone!
I feel the longest journey is from "denial" to "acceptance."
Best wishes and pra ... Read more
Bonnie Stone-Hope You are not alone!
I feel the longest journey is from "denial" to "acceptance."
Best wishes and prayers coming to you.
Celia Waterkeyn Yes....Think you are right...and somewhat scratchy in between!!
Steven A Husted it is a journey we must face but it is not as bad as i thought it would be along with many others i m ... Read more
Steven A Husted it is a journey we must face but it is not as bad as i thought it would be along with many others i made it thru i am three years out and doing fine
Michael Meyer Celia: It is good to be prepared but the reality is that a hospital and surgeon performing a high nu ... Read more
Michael Meyer Celia: It is good to be prepared but the reality is that a hospital and surgeon performing a high number of mitral valve surgeries is very safe. The papers I have reviewed indicate mortality of 1-2% so it is a very successful procedure.
Rose Madura It is scary when we find out. Nobody wants to hear that they need OHS but try to remember that they ... Read more
Rose Madura It is scary when we find out. Nobody wants to hear that they need OHS but try to remember that they do these surgeries every day and with very positive outcomes. Prayers coming your way for peace and a successful surgery. Please keep us posted.
Celia Waterkeyn Thankyou for all your helpful comments. Social media has been incredibly supportive throughout and I ... Read more
Celia Waterkeyn Thankyou for all your helpful comments. Social media has been incredibly supportive throughout and I hope to do the same for others now.
Gina Fiorentino I have really apprrciated reading your posts. I, like you, hope to help others along the way, but re ... Read more
Gina Fiorentino I have really apprrciated reading your posts. I, like you, hope to help others along the way, but realize I cannot do so until I get through my own surgery successfully. I have been wearing myself out trying to prepare, and yet I know the thing I need to do most is to settle down and get in touch with a deeper part of myself to trust this process. You wrote my worst fears: that I will be forever changed or compromised by surgery or that I won't make it. I hadn't said that out loud until recently, but it feels good to tell the truth and to realize I am not alone with these concerns. Certainly, it has been such a blessing to have this site to read others experiences, and to build some inner confidence in the recovery process... Thanks again for your words and wisdom.