Clare's Heart Valve Journal

Sue McClain posted a note for Clare that says: 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.

Meredith Bray posted a note for Clare that says: 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

Juanita Linn posted a note for Clare that says: 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!

Chris Vereb posted a note for Clare that says: 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.

Robyn Tatu posted a note for Clare that says: 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.

Cynthia Johnson posted a note for Clare that says: 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

Claire M Miller posted a note for Clare that says: 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

Kathleen Moore posted a note for Clare that says: 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 :-)

Johnny Gonzalez posted a note for Clare that says: 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!

Kim Fisher Wayland posted a note for Clare that says: 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?

Jimene Jetton posted a note for Clare that says: 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

Janice Smith posted a note for Clare that says: Great to hear you are doing so well. Keep up the good work.

Peter Willard posted a note for Clare that says: Clare what kind of valve did you get I had a bovine valve put in Feb.2010 at 67 and now I am 72 and doing great I hope you are to.

Elaine Foster posted a note for Clare that says: 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

Jeff V. posted a note for Clare that says: Hi Clare, Sorry if I missed it, but what type of valve did you get? Thanks.

Christine Pittellii posted a note for Clare that says: Adorable!

Jason Leber posted a note for Clare that says: 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.

Lillian Mark posted a note for Clare that says: I posted another question for you regarding the sternum incision💗

Terrie posted a note for Clare that says: 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!

Rebecca McGrath posted a note for Clare that says: 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

Tom in KC posted a note for Clare that says: 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.

Cami posted a note for Clare that says: 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?

Cami posted a note for Clare that says: 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!

Julia Hsu posted a note for Clare that says: Clare,

Congratulations on the 5k run. I am 3 1/2 weeks out of surgery and can't imagine doing a 5k is possible.

Tom Bender posted a note for Clare that says: Clare,
Congrats for graduation. Today is 5 months since surgery. Still hoping we can get together sometime in St Louis area.
Tom in KC

Ginger (French in Land of Oz) posted a note for Clare that says: Clare,
Congratulations! I am clueless at this point as to even when I will have surgery, let alone be where you are standing today. Please know that you are an inspiration.

And we know anyone from the City with the Silver Arch (no, not golden arches -- they are everywhere!) has to be a good soul! May your summer be one of Joy, increased energy, and great memory making!

Judy posted a note for Clare that says: Hi Clare
you sound super fit ... congrats on the walking. I cannot wait to be where you are. today I am just 10 days out from my valve replacement, so my walks are slow and shorter than 15 minutes. Am I assuming correctly that you had mechanical aortic valve replacement and aortic root replacement ??

Tom in KC posted a note for Clare that says: Clare,
You are doing well. I believe we have recovered well. Maybe we will cross paths sometime in the St. Louis area. I have 1 more week of cardio rehab and then I'm on my own. Walking and back to my outside bike.

Jim Jones posted a note for Clare that says: Clare:
Great news! Keep it up. It only gets better. (Is there any way you can exercise 8 days a week???) That is incredible! Best.

Susan Smith posted a note for Clare that says: Clare, it is good to here and to read that you are in the "groove" again. I bet your kids were happy to see you and as you say "hug you". How nice. My surgery is coming on the 29th of April and I am emotionally ready to get it over with and to get into recovery mode. Continued improvement, if possible and do keep us posted.

Rob Wigley posted a note for Clare that says: Hi Clare,
Great that things are getting back to normal! Off topic, my wife is a retired speech path, worked K-6 for 25 years in public schools in Richardson (near Dallas) Texas. She really, REALLY misses her kids! It's a tough job at times, especially the paperwork and sometimes the politics in the schools, but we know what an important job you have! I used to joke that Leslie, my wife, was my ticket to heaven. She HELPED people, while I made wealthy people wealthier.

Keep on with the good results from your recovery!

Anna Thomas posted a note for Clare that says: It sounds like you are doing great! I'm so impressed with all the walking you do. I'm really going to start trying to do more. I gained the "holiday ten" and I'm short so it feels more like twenty. I can't imagine that would help me with surgery and recovery. Keep up the great work and hope you enjoy your time back at school!

Dennis posted a note for Clare that says: Thats exciting you get to go back to work, its almost like the last step to return to normalcy!!!!

Bert posted a note for Clare that says: Sometimes these recoveries take a long time. That's a lesson I keep trying to learn for myself. You'll get there eventually. If you keep a log of how you're feeling day by day you may see the trends getting better. It's hard to remember how you felt a month or two ago compared to now (at least it has been for me). Good luck.

Susan Smith posted a note for Clare that says: Wow what a great way to boost your morale. All those children hugging you. Don't over do, but enjoy. Have a wonderful day.

Rob Wigley posted a note for Clare that says: Hey Clare,
Don't sweat your feelings too much, you have a perfect right to how you feel. Setbacks aren't fun, and it feels like forever......but it's not, and things WILL get better........

Susan Smith posted a note for Clare that says: Clare, sounds more like frustration than pity party. It is okay to grouse and grumble every once in a while. Just think of the pot belly pig I saw being let out side with the family dog. 😊. What a sight. Hang in there.

Dennis posted a note for Clare that says: My goodness, Not sure what all those numbers mean, but are you OK??

Seems you keep getting these unexpected, unexplained things coming your way....

The more I read the more it becomes true that all cases are different and all kinds of little setbacks and strangeness can occur on the way to full recovery!

Keep your spirits up, thanks for all your support!

Cami posted a note for Clare that says: Clare, I think warfarin is a mean drug.

My readings fluctuate between 2.2 and 3.5. I just don't know how to regulate the greens. Grrr.

i am sorry you are having such trouble with warfarin, I hope it gets settled soon.

Are you feeling well otherwise? I am surprised how good I am beginning to feel. I guess it just takes time to even everything out...

Be well, keep us posted.

Tom posted a note for Clare that says: Clare,
Sounds great. I know you will enjoy seeing them and likewise with them.
You'll be back to your 6 miles before you know it.

Tom in Lees Summit posted a note for Clare that says: Clare,
Just got home from your side of the state, visiting our daughter, son in law and most impotantly our 16 month old grand daughter. It was so good to be able to play with her, walk in the parks with her, play on the kiddie jungle gym... So thankful I had the surgery done and am mostly recovered. Looking forward to the next visity with them.

Angela Creason posted a note for Clare that says: Clare,
So glad to hear how well you're doing!! You inspire me to get to walking that fast again! I have to meet with an EP about my ICD, and have been told I may not be allowed to run again. Oh well.
Thank you for checking in on me! Soooo happy to be home! Continue to recover fast!

Meredith Bray posted a note for Clare that says: Clare, thank you so much for your notes of encouragement! Today is the first day i have felt comfortable sitting at my desk with an actual keyboard instead of using my phone or tablet. It makes typing a heck of a lot easier! Each day is truly better than the day before it, and even though I don't make a lot of progress each day, it's the week to week changes that I'm looking forward to. I'm fortunate that I haven't had any complications or abnormalities, and I pray that you are moving forward, as expected, also. Thanks again!

Tom in KC posted a note for Clare that says: Clare,
So happy to hear you are healing and able to do more. Sorry that you had to take care of the family while they had the flu. If you did that, that should help with being able to work.
One of my co-ushers is a preschool teacher. She said she was pretty wiped out the first week or so back to work after breast cancer surgeries. I think she was off around 10 weeks.
For me, I noticed an improvement in my stamina and energy each week since week 6. I started on a Friday(8 weeks exactly), worked Monday thru Thursday, and then Monday thru Friday noon this past week. I probably could have made it the rest of Friday, but with the cold I picked up somewhere I was ready to rest before dinner. This coming week will be a 4 day week, as we are heading to Wentzville to see the grand daughter.
Note: The way the weather has been you should plan on getting something. I'm sure shaking everyones hands when I returned to work plus the cardio rehab equipment (many patients and all the nurses have had colds or flu) triggered the cold.

Susan Smith posted a note for Clare that says: Clare you are doing great. Keep up the good progress. Seven year olds can be a handful , but I bet your seven year old is an "angel".... most of the time LOL. Our children keep us on track. My seven year old is 50 something now and is still an "angel" most of the time. take care.

Dennis Wilson posted a note for Clare that says: I wanted to reach out and THANK YOU! Your comments on my Guestbook somehow seem to give me so much more assurance than all the doctors and nurses, somehow seems to hold more weight when someone who has been through it before says yep had that, it gets better!!! Thank you Clare!

Hope your family has recovered and you never succumbed to the flu, I can't imagine coughing like crazy, though maybe at 8 weeks it doesn't hurt :)

Tom in KC posted a note for Clare that says: Clare,
Sorry they have the flu. Hope you don't get it. But if you do, your sternum and incision should be able to handle it.
Doesn't feel good to know you can do those things? Regardless of the situation your progress it is an accomplishment! Way to go. We'll be able to enjoy the spring time outside (if it ever gets here)!
Tom

Tom in KC posted a note for Clare that says: Clare,
I had the flu during my 4th week home. Not fun, but I survived.
My primary adjust m BP med dosage late last week. It seems to be stabilizing to readings better than pre surgery. We'll see what it is like late this week and next week.
Take care.
Tom

Frances Aguirre posted a note for Clare that says: Clare thank you, and I too will pray for our great recoveries :)

Frances Aguirre posted a note for Clare that says: Hello Clare, hope your feeling better. My surgery was pushed a week from the 18th to the 25th, this Tuesday. I am so mixed with emotions- I feel anxious to do it and then my anxiety kicks in again! I want to just move on just start healing...I see from everyone's blogs Patience will be the word of the day everyday.