Lewis Garlisi posted a note for Rachel that says:
Hi Rachel. I just stumbled upon your posts. Hopefully you are doing well with your recovery and family plans you had for the future. I am sorry about the loss of your grandfather. Sounds like he was your rock during early recovery. I was wondering about your hernia issue. I am concerned that I may have the same problem. What were your symptoms?
Rebecca posted a note for Rachel that says:
Not sure if you are still receiving messages from your guest book as I noticed the last one was Iain 2012?
Just wondered where you had you AVR as I'm from cheshire also and have mine booked for 23rd July 2014
I hope all is well. I couldn't help relating to your story as I too developed endocarditis and underwent AVR surgery 2 months ago. I was told its very rare to be a women in your early 30s, such as ourselves, and become infected with endocarditis. Its very comforting knowing that i am not alone in this journey and to see how positive you are after all you've gone through is a true inspiration. Would you mind telling me how you developed the endocarditis? and how you were diagnosed?
Looking forward to hearing your story. hope to speak with you soon.
I thought I had a small hernia at the base of my incision. I showed it to my doctor and he told me to lose some weight. He said something about it being a "fat pocket", but it's weird that only in that one area there's a bulging area. I'd send you a picture, but not on this site.
Otherwise, you sound like you're doing good, right?
Congrats on 9 weeks! How are you feeling? How did your 3 hours go? Is it monitered or do you do it yourself at home?
I just found out today that I will have 14.5 weeks to recover before I get married. If you're feeling good at nine weeks, it gives me hope for fourteen weeks!!!! Keep updating. I love following your progress.
I really enjoyed reading your input on mechinal or tissue. Because i am 24 I was deff going to take tissue because of kids and I am feeling very confident after your post that it is still possible to have kids. The ultimate would be a repair but I have yet to find that out. Hopefully my doctors appointment tomorrow will answer that question. Thanks for being full of info!
I had signed up to receive your journal postings. I have followed several people on this journal as I am going to have AVR surgery on 9/8...just a few days away. I have found it very comforting to read what everyone else is going through and it helps to relieve some of my anxiety. I still have to decide on what type of valve to get. The doctor is OK with either a mechanical or tissue. I know the pros and cons of both. Just curious....I am 54, in great health (other than my valve) and was wondering what would you do and why? It's kinda like I'm taking a vote from everyone because I'm having such a difficult time with the decision. I know you've been through it twice and the reason you got a tissue valve this time, but do you have a recommendation for me?
Glad to read you're doing well and I hope and pray I do as well as a lot of people on this site.
Hi Rachel! I just found this site. I had my Aortic Valve replaced with a mechanical valve on June 8th, 2011 (9 weeks ago). I am 40 years old and am still recovering from my surgery. I thought I would be fully recovered by now but I am still coming up with questions/concerns that are hard to find answers to so it was nice to find this site and your blog! One of my questions was about the bra issue, glad you discussed that. I am still not able to wear my pre-op bras and just bought 2 more yesterday ... I can't wait for them to be back to normal! I also had the "wrap" that I kept on for at least the first 2-3 weeks, I was then able to wear a larger no underwire bra. I actually kept one on for 24 hrs a day due to the "pull" on my chest. I have recently been able to remove it at night time but I still can feel it pulling - the pillow for support works great! My cardiologist also told me that sometimes in younger patients the incision pain can last longer due to the fact that we have more muscle mass vs. an older patient. One item I have not found an answer for is that where your collar bone meets (normally directly under your throat where it kinda dips into a "v"... mine is off center by about an inch to my right side, have you heard or seen anything like this? I asked my Dr. and all he told me was he had never seen anything like that before! I think it is affecting how my neck turns and the pain I have in it. Thank you for posting and wishing you a speedy, full and quick recovery!
I have only just seen you when I went in to check on a friends update. It's great to meet you! I had MV and TV repairs at Papworth hospital last February 2010 with Frank Wells as my surgeon. I live in Scotland but wouldn't risk going anywhere else - I know that any other surgeon would have replaced rather than repaired. I am 100% recovered and off all meds. The HVJ community is fantastic - I made lasting pen friends during my time before and after the op and plan to visit at least one of them in December when we head off to Palm Springs. I don't update my own journal anymore - the general consensus is that a year is a good time to sign off unless there are any major developments but I'm still signed up to the journals of 8 of my pals that were all the same time as me from all over the world. So if one does add to their journal I get the email notification. This is a great site. Best regards Penny
Your second AVR?! You look so young. Do bovine valves (I got mine at the end of Feb. this yr.) not always last 10-15 yrs.? Have you spoken with a psychotherapist about your emotional recovery? Wishing you all the best!
Reading This makes me realise how lucky i am, And makes me question How I would cope with this at such a young age.
I can see this blog being inspirational to persons going through this for the first time, Reading the causes and how long you have had to deal with this has raised a whole new level of respect for you and a lot more understanding what your facing
Rachel wish you the best. I just had my aortic valve replaced on 29th of July. Things are improving & I had a bovine tissue valve placed due to anemia & other health issues. I hope my tissue valve last at least 15 years. mechanical valves have their risks too. walked half a mile yesterday things are improving just slowly.The challenge now is flying back across country from Mayo clinic in Minnesota to home at least 2000 miles away. Mayo is the best & I feel I received excellent care & advice from my surgeon & the surgical team. looking forward to flight back home and very thankful for care from Mayo.