Guestbook of Stephanie Jones

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Stephanie Jonesgot a new guestbook post

2203 days ago

Patricia McAllister posted a note for Stephanie that says:

Hi Stephanie, Hadn't seen an update in a long time from you, so just wondering/hoping you are feeling and doing better since the summer!

Stephanie Jonesgot a new guestbook post

2355 days ago

Susan Lynn reacted to this

Patricia McAllister posted a note for Stephanie that says:

Stephanie, Had you on my mind and wanted you to know you're not alone. I too have gone through the TIA/vision scare, Lovanox shots (with a needle phobia!), ...Read more

Stephanie, Had you on my mind and wanted you to know you're not alone. I too have gone through the TIA/vision scare, Lovanox shots (with a needle phobia!), and had another TEE because they thought my replacement mitral valve was too small and/or had failed. It's exhausting, disheartening (no pun intended) and never seems to end. Just had a brain MRI for the TIAs. Also sent to vascular surgeon for possible pending carotid surgery. My "smiling selfie scar" is colloquially known as "the Big Ugly." It's in-your-face and never really faded, rendering most shirts unwearable unless I want people staring at my hideous scar rather than my face. So I get it. I really do. Contact me anytime if you need to talk, rant, cry, or just wanna stare at my impressive scar :) Patricia (aka "The Big Ugly's" owner)

Susan Lynn Stephanie - I also watched today's video and am so sorry to hear about your continuing challenges. B ... Read more

Susan Lynn Stephanie - I also watched today's video and am so sorry to hear about your continuing challenges. But, you are stronger than you know. You'll do those shots and not think twice about it after awhile. Hopefully, your INR will stabilize and soon make them obsolete. We're here to support you!

Stephanie Jones thank you Patricia and susan!

Stephanie Jonesgot a new guestbook post

2804 days ago

Ben Hyman posted a note for Stephanie that says:

Hey Stephanie, It's been two months since anyone's heard from you. How are you doing since you got discharged? My surgery is coming up Wednesday. It's ...Read more

Hey Stephanie, It's been two months since anyone's heard from you. How are you doing since you got discharged? My surgery is coming up Wednesday. It's finally hitting me that I'm having major surgery, even though it's considered "minimally invasive" due to the robot.

Stephanie Jones Hi Ben. just saw this. lol, i acutally had a 2nd surgery april 2018, this time they replaced the mit ... Read more

Stephanie Jones Hi Ben. just saw this. lol, i acutally had a 2nd surgery april 2018, this time they replaced the mitral valve w/ a mechanical.

Stephanie Jonesgot a new guestbook post

2888 days ago

Hi Stephanie, Hope your Vertigo goes away! I've been reading and viewing your posts. Thank you for your insight on your surgery. I was wondering, you had ...Read more

Hi Stephanie, Hope your Vertigo goes away! I've been reading and viewing your posts. Thank you for your insight on your surgery. I was wondering, you had stated that you were hoping to have a minimally invasive procedure done as apposed to a Sternomy. What made you decide on the Sternomy approach vs the minimally invasive approach? I will be having my Mitral Valve Surgery via Sternomy as well. Thank you.

Stephanie Jones my surgeon wasn't positive it would be a repair, if he got in there and had to replace he'd have to g ... Read more

Stephanie Jones my surgeon wasn't positive it would be a repair, if he got in there and had to replace he'd have to go through the sternum anyway. He also said through the sternum was the best way to access everything. He doesn't do robotic, which was good because i've only heard negative things. one wrong move could make serious mistakes and trigger more things to be fixed.
hope that helps.

Yes, thank you Stephanie, I've researched a lot about both approaches and I too feel more comfortable ... Read more

Yes, thank you Stephanie, I've researched a lot about both approaches and I too feel more comfortable with the Sternotomy. I hope you are getting stronger everyday!

Stephanie Jones I am!!! Thank you!!

Stephanie Jonesgot a new guestbook post

2888 days ago

Dana posted a note for Stephanie that says:

Going in on Jan 3. In Florida. How long were you in the hospital.? How long did it take you to go to supermarket. Did you go into rehab or have a nurse? Thanks,Dana ...Read more

Going in on Jan 3. In Florida. How long were you in the hospital.? How long did it take you to go to supermarket. Did you go into rehab or have a nurse? Thanks,Dana

Stephanie Jones hi dana. I was in the hospital for 6 days. surgery was dec. 1st. went to the mall w/ my son 16th. ... Read more

Stephanie Jones hi dana. I was in the hospital for 6 days. surgery was dec. 1st. went to the mall w/ my son 16th. my first time out and about, walked the mall for an hour, resting on benches every 15 mins. or so. I discharged right to my house. no rehab. no one home to help me either. :( i called on friends to help out. they wouldn't give me approval for a nurse. Cardiac rehab will start - I want to say 12 weeks after surgery.... not exactly sure.

Mary Wagner Get someone to do your grocery shopping.

Meredith Bray Dana, I'm in Florida - where are you?

Stephanie Jonesgot a new guestbook post

2896 days ago

Ray Farmer posted a note for Stephanie that says:

Stephanie check-in at the hospital was 4 pm so got lunch. Met all the staff started to settle down then it all went wrong. A question regarding your (non) ...Read more

Stephanie check-in at the hospital was 4 pm so got lunch. Met all the staff started to settle down then it all went wrong. A question regarding your (non) blood transfusion? I take it you held off for (24 hours?) then because your hemoglobin levels started to go back up the doctors were not so concerned as long as you let them know you were feeling ok? Thank you for doing these videos, (very brave). All these little nuggets of information are so helpful.

Bob Fessler I whole heartedly agree with Ray. The videos you did are extremely helpful. Thank you soooo much fo ... Read more

Bob Fessler I whole heartedly agree with Ray. The videos you did are extremely helpful. Thank you soooo much for making them.

Stephanie Jones yes, I asked the surgeon if it was ok to wait and he said yes, I woudn't be hurting my body at 8.0 he ... Read more

Stephanie Jones yes, I asked the surgeon if it was ok to wait and he said yes, I woudn't be hurting my body at 8.0 hemoglobin, but he wanted to draw next morning to see if it was still declining, and instead it was raising.
I'm glad you both are getting something out of the videos. --so glad to help!

Stephanie Jones what you need to ask is," What are the alternatives to a blood transfusion?" "Would I be endangering ... Read more

Stephanie Jones what you need to ask is," What are the alternatives to a blood transfusion?" "Would I be endangering myself if I choose not to?"

Ray Farmer Thankyou, useful information to recall if required!

Stephanie Jonesgot a new guestbook post

2897 days ago

1 person reacted to this

Judy posted a note for Stephanie that says:

Hi Stephanie! Thank you for blogging about your heart surgery. I will be having aortic valve replacement surgery in January. Wanted to know if your full ...Read more

Hi Stephanie! Thank you for blogging about your heart surgery. I will be having aortic valve replacement surgery in January. Wanted to know if your full sternum was opened it just the top half? I'm hoping to have just half if surgeon has no complications. I hope all continues to go well in your recovery!

Stephanie Jones geez, I assumed full sternum. I"ll as at my follow up on the 14th.

Stephanie Jonesgot a new guestbook post

2899 days ago

valerie jacobsen posted a note for Stephanie that says:

I Hope you keep doing better each day and have a great 2017!

Stephanie Jones Thank you valerie!

Stephanie Jonesgot a new guestbook post

2899 days ago

KEVIN RYAN posted a note for Stephanie that says:

Thanks so much, Stephanie, for posting! You certainly have a gift for remembering detail! I find your honesty quite settling. BTW that word you were "searching" ...Read more

Thanks so much, Stephanie, for posting! You certainly have a gift for remembering detail! I find your honesty quite settling. BTW that word you were "searching" for to describe your experience of dry heaves...could it be: "retching?" :-) You describe your experience well...in average person terms...and I appreciate it! Keep on ticking!

Stephanie Jones yes!!! dry heaves!! thanks!

Stephanie Jones https://youtu.be/9P_gn5kWkvY

mitral valve surgery diary Day 3 4 post Surgery

https://www.youtube.com/watch?v=9P_gn5kWkvY

explaining how days 3 and 4 went in the icu.

Stephanie Jonesgot a new guestbook post

2900 days ago

Stephanie Jones reacted to this

Tanu posted a note for Stephanie that says:

Great to know that you are being discharged. You are truly inspirational. Tanu

Maggi Turner Wow, Stephanie you have done so well. Well done

Stephanie Jones Thanks maggi!

Stephanie Jonesgot a new guestbook post

2901 days ago

Linda Richards posted a note for Stephanie that says:

Where in NJ?

Stephanie Jonesgot a new guestbook post

2902 days ago

Stephanie Jones reacted to this

Tanu posted a note for Stephanie that says:

Hey Stephanie, firstly congratulations on a safe surgery. Wishing you fast recovery and a very healthy life ahead. You send such positive vibes. Please keep ...Read more

Hey Stephanie, firstly congratulations on a safe surgery. Wishing you fast recovery and a very healthy life ahead. You send such positive vibes. Please keep my mother in your prayers and send her your positive vibes as she is to undergo valve replacement on 8th Dec.

Stephanie Jones Will do tanu!!

Stephanie Jonesgot a new guestbook post

2902 days ago

Ben Hyman posted a note for Stephanie that says:

Hello Stephanie, You look great and you are an inspiration to the rest of us that have OHS pending. Your video blog is especially helpful. Would love to ...Read more

Hello Stephanie, You look great and you are an inspiration to the rest of us that have OHS pending. Your video blog is especially helpful. Would love to speak with you some time after you are discharged and feel up to it. I'm looking at having mitral repair done at Mayo in Rochester MN

Stephanie Jones Thank you I had watched so many other people's video blog and it helped me. So I wanted to keep doing ... Read more

Stephanie Jones Thank you I had watched so many other people's video blog and it helped me. So I wanted to keep doing it to help others

Stephanie Jonesgot a new guestbook post

2904 days ago

Stephanie Jones reacted to this

Martha posted a note for Stephanie that says:

Best wishes, Stephanie! You look good after the ordeal of surgery!

Stephanie Jones Thank you!

Stephanie Jonesgot a new guestbook post

2904 days ago

Stephanie Jones reacted to this

Kathy posted a note for Stephanie that says:

I wish you a speedy and fantastic recovery!!! My mom will be having mitral valve repair and aortic valve Replacement and we are afraid.....

Bob Brehm Wow you look great and tubes already out! Congrats! I hope mine goes as smooth.

Stephanie Jones Me too!

Stephanie Jonesgot a new guestbook post

2905 days ago

Stephanie Jones reacted to this

Renee Elliott posted a note for Stephanie that says:

Hi Stephanie~ I'm a Cardiac ICU RN and I also have a husband and daughter with Marfan's. So i am kinda an expert in both. You'll do great through surgery! ...Read more

Hi Stephanie~ I'm a Cardiac ICU RN and I also have a husband and daughter with Marfan's. So i am kinda an expert in both. You'll do great through surgery! I pray you have a smooth recovery-

Ray Miller Praying for a solid recovery for you.

Stephanie Jones Thank you

Stephanie Jonesgot a new guestbook post

2905 days ago

Stephanie Jones reacted to this

Shawn Urban posted a note for Stephanie that says:

Best wishes and a gentle recovery to you.

Stephanie Jonesgot a new guestbook post

2908 days ago

1 person reacted to this

Ray Farmer posted a note for Stephanie that says:

Just been watching your video diaries very ‘encouraging’ to hear your story, however you’re not alone. I have severe aortic stenosis & regurgitation, ...Read more

Just been watching your video diaries very ‘encouraging’ to hear your story, however you’re not alone. I have severe aortic stenosis & regurgitation, (which on this website is sounding a bit common and boring), no symptoms until I became breathless up a mountain, (& the doctor gave me an inhaler!). Will be thinking of you on Thursday just focus on the recovery. Did you see Cathleen DeWitt's post of “Hello Kitty” slippers! I'm taking a picture of that to hospital with me. I have surgery scheduled for December 8th but stay positive these procedures are so routine and a lot of people will be praying for you and your videos are helpful to me.

Stephanie Jones Hi Ray. thanks! I'm glad my videos are helping you. I've been researching and watching a lot of video ... Read more

Stephanie Jones Hi Ray. thanks! I'm glad my videos are helping you. I've been researching and watching a lot of video diaries. Its helping me feel more prepared and turning it all into something positive. We are the lucky ones.... diagnosed and fixable. :)

Ray Farmer Praying for your uneventful surgery tomorrow and speedy recovery.

Stephanie Jones thank you!