Clare's Guestbook

Clare, thanks for posting. I am almost 8 weeks out for aortic valve replacement which was done at St. Luke’s. I believe I recieved the best of care at that hospital.

Happy Heart Birthday! Thank you so much for all you write on this journal - you've been a great to help to many more patients than you could ever imagine! -Meredith

Thank you for your kind words of encouragement! Every time I have my echo done, I get an infection under my breastline! Wondering if it's common? It is each time so I've been given a prescription of cream to have on hand. It's very painful during the echo but they just ignore my pain and get it done. Just wonder if I'm alone with this. Thanks and God bless!

Hi Clare! I was wondering what your Coumadin level the doctor was allowing to be managed at? I am still deciding about valve. I have a very heavy manual labor job.

Clare, we are doing great here in Atlanta. Spring has sprung and I'm happy to be out in the garden. It seems like such a short time ago that I was so very sick - but I continue to get stronger every day. David is also well and happy to have his partner back. I hope YOU are doing well. Thanks for the good thoughts then and now.

Dear Clare, It is 6:15 am here in Connecticut and although I have no new news regarding Barbara, I did see your note on her guest book and I'm grateful. Adam got it right when he acted and started this web page, didn't he? I began to read a bit about your journey (my apologies, I don't use the correct jargon and this is my first experience with anything close to social media posting but I clicked on your name and there you were). I would have read more but the tears were clouding my vision. I'm not an OHS person but for reasons that I won't share here because this is about you all, everything I did read resonated with me. Your children, your perspective, their coping mechanisms, your scar, how you feel about it...How your husband sees it (speaking as a spouse, scars means you are a rock star survivor and we get to see those beautiful scars because you're still here! ) That's when I had to stop reading. One disclaimer, if a scar is physically uncomfortable, burning, itching, adhering...No judgement here for pursuing relief! I hope I have not overstepped by posting in your guest book and commenting on your personal life. I cried from the beauty of it, not from pity and from longing to see posts from Barb very soon. Thank you for caring, supporting, and praying no matter what the form the prayer takes. Please, God, protect Barb, soothe Dave, my parents, and bless everyone who is on this forum wanting the same for Barb even as they face their own struggles. Have a wonderful day. I hope you know how much your comment meant to this sister. Your snowman was so sweet by the way. Thanks for sharing. Warmest Regard from Barbara Laurie's sister, Cynthia

Thank you for your encouragement. You had your surgery last year on my birthday. As for the scar I would look into what you could do to make yourself feel better. Just have to make it another week and maybe in a couple of months I will feel better. Thank you again

Hi Clare, I have enjoyed reading your story and thank you for sharing. I also have bicuspid valve and aneurysm recently diagnosed at 30. I only found out by chance as I pushed for an echo as I have a family history and did have a little shortness of breath after my second baby. At my recent check up and no change in aneurysm size it is at 4.2 my consultant gave me the go ahead for a third pregnancy. I notice that you have three beautiful children and I was just wondering how did your pregnancies go and did you have any problems. I am a little confused and scared as to what might happen if I decide to go ahead with another pregnancy. Thanks so much, Kathleen :-)

Hello Clare, Thank you so much for taking the time to post a message on my board. I'm getting the On-X Valve on Monday 8/17 and was wondering if you had any updates on your follow up with the doctor about lowering the dose of blood thinners. Have you already started this new lower dose? Do you monitor your INR and how has that worked for you? Sorry for all the questions.. Just a little anxious and want to hear info from anyone that can share information that has actually gone through the procedure and has the On-X. I went with the On-X because of all the research I did and my choice was to go ahead with this new technology. Thank you once again! Hope to hear from you soon and your recovery looks awesome as I read your posts!

Hi Clare. My surgeon wouldn't do a mechanical valve when i needed my surgery. I was 10 days from my 37th birthday. He said i was too young. Is Coumadin a pain?

Good morning, your story Is very inspiring. I have some questions about your valve. you said it is the On-x, were you given a choice or was it selected for you? Where was your aneurysm located? Mine was at the top of the heart and through the hemi-arch. When discovered it was already a 6.1cm x 5.3 cm in length. When they did the heart cath to clear me for surgery it brought on 2 strokes, which postponed my surgery for 6-7 weeks. Curious how your valve "feels" ie. ticking noises, feel like it thuds, etc Thanks for your time

Hi Clare, I went back and read thru your journal, but didn't find what kind of valve you had. I'm doing research on mechancial versus tissue for AVR. I want tissue, but surgeon suggests On-X mechanical because of my age (57). Do you mind telling me what valve you have and reason for choice? Thank you

Hi Clare, Glad to hear you're able to do so much running. You mentioned on my guestbook that you have the On-X valve but weren't aware of the 1.5 INR. I checked on their website today and they have a brochure for that valve (apparently there is only 1 type of On-X valve) which in the fine print mentions that the 1.5 INR has been approved in the EU only. I previously had spoken with a nurse at On-X and she said there was a clinical trial in the USA and Canada regarding reduced INR levels. I am not sure if it's been approved yet but I think she said it was or it's coming. I would suggest talking to your Dr. and also talking with the nurse at On-X (they have a phone number on their website). She was super knowledgeable and very helpful. I realize everyone's situation is unique and I certainly am not trying to give you medical advice. Only sharing some of the research that I've been discovering.

Hello Clare, It is Sat. night and I just finished reading your story and your journal! Whew! You left me tired and winded!! Do you have any idea how impressive your Journey is/has been to those of us reading about you. Incredible and very happy for you and your Family. Oh yes, and your students too! I learned a lot from you tonight and will try to hitchhike off your attitude that seems to have been part of how you have made it so far and progressed the way you have. Like these stories that show the light at the end of the tunnel(surgery)! Take care. Keep posting to your community when your have time! Enjoyable!

Hi Clare I've just found your journal after you wrote on mine. This is great that I've found you- similar age and exactly same procedures. My surgery is Wednesday, going in tomorrow. I'm nervous and anxious of the pain and hoping I can be brave enough. Your journal has really helped as you've got back into normal life with three kids! It's helped me a lot and reassured me so thank you! Xx

Can you believe how time has gone so fast since surgery. Seems like we were getting ready, then starting recovery. Now it has been 5 months for you and 6 months for me. Enjoy the summer. We are hanging out in Wentzville on the 4th. Grand daughter #2 should be here in a month.

Clare, I actually was a runner for a long time, until this valve thing started bothering me. I ran the 400 and the hurdles in high school and then for fun after that. My best 5K time is about 30 min. I'm striving for the 45, just because I want to push myself in rehab. I've been far too lax. Sounds like you're doing and feeling well. I've been on some new meds that are making me tired and I've regained some weight (boo!) and work is a bit stressful, so I'm having to focus on de-stressing. Other than those two things, I do feel better. How are you faring with Coumadin?

Clare, I'm signed up for a 5K in August! I am shooting for 45 minutes also. You have proved to me that this can be done - but mine will be 6 months post-surgery. Yay for new heart valves!