Denise's Guestbook

Hi , we have messaged before but it has been a long while, I also have rheumatic heart disease, I was just wondering how your other valves are doing, and if you have had any skin issues Since your diagnosis.

Hi Denise, I just saw your question about coumadin and colonoscopy. Sorry if the answer is to late. I went through this last year. About a week before the colonoscopy they had me stop the Coumadin and I had to give myself lovenox shots until the procedure was over. Shots are no fun but it was tolerable. It didn't take long for me to rebalance my INR back to where it should be. Maybe a week. Good luck to you!!!

Hi Denise...I saw you mention that your scar seemed thicker at the top. I keloid anytime they cut "against the grain"..so basically anything vertical. I had cortisone injections directly into the scar..flattened it, softened it, and took all the redness away...basically relieved all the inflammation. I'm not on Coumadin so I don't know the restrictions for you but you might look into it. :) Cathy

HI Denise, I'm Kristie, Barbara Lauries oldest sister....I have been in the loop of communication between Nicola's friends and she is just a day past three weeks postop.....I will keep you updated as I get them...sounds like she is on the road to recovery but their road is a bit longer then others due to their congenital heart condition.... I am heading out to be with Barbara on Sunday, May 29th, so I can help her as she transitions to being home...she has had a very difficult journey and still has more hurdles to get over but she's been a fighter since she was born! I thank everyone on this site who has been so loving and caring toward my beautiful sister! Thanks for that.....until I hear more updates....xxx

Hi Denise, I saw your comment about starting cardiac rehab. Right now, I feel like what I need is physical therapy because of ongoing muscle tension issues. I need to learn how to move again without hurting myself and how to safely stretch out the painful areas. So I'm realizing I don't know what they actually do at cardiac rehab besides hooking you up to heart monitors while you exercise! Is it basically physical therapy for cardiac patients? What exactly did you do on your first day?

Hi Denise, I got your note so let me know if you get this. I totally understand your feelings about not being able to have your valve repaired. I was seriously angry about this for a while because I still do not know why they didn't fix it in the first place the first time I had OHS to replace my aortic valve. I was only 29 then and think I just trusted the surgeon's judgement without questioning it. With all the advances in heart surgery that have occurred in the last 11 years though since my first surgery, I thought for sure they'd be able to fix the mitral valve by the time I needed my aortic replaced again. (I knew I'd need another aortic replacement since I went with tissue valve the first time). But when the time came to replace it, I was truly devastated when I found out that I wasn't a candidate for minimally invasive surgeries and that my mitral valve was too far gone to be repaired. And I was pissed off frankly wondering why none of my cardiologists over the years recommended it get fixed before it was too late (I've had several cardiologists due to moving etc). So this time around, after talking to several surgeons, I understood that mechanical was the best option for me. But sometimes I do feel resentful about that fact. The Coumadin has definitely been difficult to get used to. I'm a dietitian so I understand about being consistent with Vitamin K foods, but I never realized how many things affected INR besides diet. I have to go to the Coumadin clinic twice a week right now, which is really inconvenient. My last two INRs were in range though so I'm hopeful it's stabilizing. I also have fears about being on coumadin for life since I'm only 40, because who knows what the long term affects may be. I'm also still finding it weird to get used to the sound of my clicking valves, mostly at night when it's quiet. I wonder if mine is louder than others because I have two. How are you doing with your coumadin so far? Does the noise from your valve bother you?

Hi Denise, i hope you're recovering well. Would you please be able to tell me more about the connection between Lipitor and insomnia if you don't mind. Thank you.

Hi Denise! I saw your post on my journal regarding your pacer wire that is bugging you. I do not actually have a pacemaker myself, but if there are wires bothering you from it you really should discuss that with your doctor! I had to fight to get my sternal wires removed but since I didn't need them anymore and they were causing me so much discomfort the doctors finally agreed to remove them.

Hi Denise, hope you're recuperating well. I am 5 months post op OHS and i have had a rather good recovery so far, except for developing insomnia shortly after the surgery. So i had to reach for some help and i have been taking a sleeping pill ( off and on ) for the last few months. I must admit that it helped me a lot particularly in the critical stages of the recovery. Furthermore i was encouraged to take them by many of our heart sisters and brothers from this fantastic platform and frankly also by my doctors. While i am at it, give me the latitude to maybe take this a step further. As you might have heard in the past perhaps, unfortunately there is still a lot of stigma that some people attach to particular medications such as sleeping pills or antidepressants. So people at large (or some of us) feel awkward in taking them. By the same token we also all know that they can save lives if taken under the direction of a respectful and responsible physician. In conclusion i really don't know the causes of your insomnia, so i cannot comment, but the medication definitely helped me and saved my day. I hope this helps.

Hi, You posted a question for me on a thread a while back and I just now saw it. I have an On-X mechanical valve in the Aortic position. My surgery was more than 2 years ago, 1/9/2014. Ask any questions you may have or you may email me autenclare@gmail.com

Wishing you best of luck Denise! I had mitral valve repair surgery done in November, and was quite nervous. But I came through with flying colors. You will too.

Hi Denise, You said mitral valve replacement. The surgeons I consulted, including the one who ultimately operated on me, try their darnedest to REPAIR a mitral valve. Has your surgeon told you that he couldn't repair it? And if so, did you get a second (and even third) opinion about this? When I asked my own surgeon during my pre-op consult if he could repair my mitral valve, he said he wouldn't know till he got in there. But he added, "I've repaired worse than yours." (And he did repair it!) Second, if your mitral valve is your only heart problem, are they planning to do minimally invasive surgery on you (as opposed to the full cut down the middle)? As for your being scared, of course you are! But as you may already have read on this site, the mortality rate for these operations is, at most, a whopping TWO PERCENT. And those were invariably the elderly and people with other health problems. All my best.