Wow, Kelly, that's great! I'm so jealous. I guess you and Mitch and Carmen will all be in lala land together on the 2nd. You won't have time to get too nervous, although those feelings can pop up completely out of nowhere, I had one of sorts today.
We are all here for you, if you get scared, put it out there, we will make you laugh or something. You deserve this! You deserve to be all better and you will be! You will do great and in no time it will all be behind you!
Please keep us updated and hope you have someone lined up to give us updates during your surgery.
God bless!
Still waiting...Linda
On January 26, 2012...
Great news Kelly!!! So glad you have a date. 2/2/12 will be a big day for HVJers, you, Carmen and I all go that do.
Good luck to us all. May it be uneventful and may our recovery progress nicely.
- Mitch Friedman
On January 26, 2012...
I'm glad you will be on the road to recovery! Our prayers will be with you and your mom! Please let me know if there is anything I can help with!!
Kris
On January 17, 2012...
Hey sis,
I'm so glad it's all coming together now. I'm praying that everything goes smoothly and that the rest of 2012 will bring a good season of recovery.
Love,
Chris
On January 16, 2012...
So glad to hear you are making some progress. It sure seems like SOMEONE is reading your journal and is watching over you. You still may want to consider going for a second opinion/consult. At the end of the day, it is all about what you need to make yourself feel comfortable. I am just offering a suggestion.
All the best and I hope it is smooth, fast sailing from here.
-Mitch Friedman
On January 16, 2012...
Hi Kelly, what did I tell you? Surgeons' nurse knows his schedule better than he does, lol! Glad you are finally getting some attention, not really sure about the going on coumadin prior to surgery ? to see how your system does? I don't pretend to know all, but I have taken coumadin for several years and I know that 10 days of therapy is not a reliable indicator of how you will adjust long term. So many things can affect your PT/INR. Will someone be monitoring your INR during this 10 days? Not my business, but just a thought. Still hoping you will get a second opinion. Best of luck and please keep us posted.
Linda Dixon
On January 15, 2012...
Kelly,
I am so excited for you! Please let us know when the surgery will be. Also please let us know if I can do anything! I'm praying for you.
Love, Trina
On January 14, 2012...
Hi Kelly. Let me help bolster your resolve. You are way too patient with your surgeon. It shouldn't take 4+ months to get a surgery date. More like a few weeks after tests. You are symptomatic, right? And your mitral regurgitation is graded as severe? The survival curves are not so happy under these circumstances - about a 1/2% per month loss rate. And you've waited four months so you've already encountered more risk than the surgery itself by having it put off. Frankly, considering how hard most surgical teams work to cut risk, I am not impressed with your guy's frittering the time away. So yeah, get that parallel path going, girl! You are smart to push it.
Here's the number of my surgeon's assistant Camille at UCLA: (310) 825-5841 - she can help you if you want to consider them. UCLA is a high volume center of excellence. There are other good centers in the area: USC has same day appointments with a physician's referral at (323)442-5100. And Linda has a good idea to ping Adam and ask him to help too.
We all care about you! -- DVB
On January 14, 2012...
I will pray that the Dr. comes through for you and that you won't have to switch Drs. this late in the process. Hang in there! Kirsten
On January 13, 2012...
Kelly,
We are so glad that you have made this progress and are praying that you get a surgery date today. Please stay strong, you are an amazing woman and we love you!
Trina and Josh
On January 13, 2012...
Don't wait. Make the call to your cardio now!!!
What is the worst case? You get a second opinion or confirmation that your surgeon is OK after all. Best case, you find out how a really world class surgeon does this and you never look back. Get info now about another surgeon, then decide what you want to do. It is OK to pursue multiple doctors at the same time. They all encourage it and are used to it.
You seem to be calm and in a good place. Good for you! Good Luck. - Mitch Friedman
On January 13, 2012...
Kelly, glad to hear your scan results were good. About this trouble getting a surgery date. Get in touch with Adam Pick, you can send him an email, he is also on facebook and will accept a friend request, let him know you are a HVJ girl. He can put you in touch with GREAT surgeons in Calif. When I let him know I wanted Dr. Gillinov, he sent a note to him that day and the next day I got a response from Dr. G's staff and the next day a list of everything to get together to send to him. There is no reason you should be getting this run-around. And as for your surgeons's schedule...his nurse probably knows it better than he does!!!
Adam is way cool and he didn't just set up this site and walk away. He will help you!
Please????
I care and don't want your heart to get any worse than it already is waiting on someone to help!
Linda Dixon
On January 7, 2012...
Hi Kelly:
The Long Beach Murrays are all rooting & praying for you. Glad to hear u have ur scan set, but after reading Mr. Friedman's entry (the gentleman from NY) I, too, am a bit worried & irritated you are facing delays like u have recently. (How cool is this forum - you've got people all over the country reading ur story & offering their experience & stories. I love it!) I hope once this scan is done u find yourself on the fast track to surgery & feeling better. Tell ur mom hello, & keep keepin ur head up. I think about u every time I go to the gym because I pass your old apt building on Ocean. Take care, Miss K!!!
Love,
Holly
On January 7, 2012...
Way to go Kelly! We will be praying for you!
Love you,
Annette
On January 7, 2012...
Hi Kelly, I am fairly new to HVJ so this is the first time I am reading your journal since you just posted an update. Gosh, you are one tough cookie and are sure hanging tougher than most would in your shoes!!!!
I just wanted to echo past comments in your guest book and add myself to the list of those encouraging you to get a second opinion at a world class facility. Sounds like UCLA might be your best option.
I live in New York and am fortunate to have easy access to top surgeons and hospitals. No way you should accept the schedule delays you are facing. While you have much more going on than me, I did want to share I found out I needed surgery in mid December, and yesterday scheduled it for Feb 2nd. I could it have done it even sooner, but have my daughter's birthday and wanted to do surgery after that.
Plus, I have never heard of the timing you mentioned for tissue valves. I am 47 and am very active and have been told a tissue valve could last 15 years for me. One of the surgeons I met invited me to run a marathon with him, told me of patients he has that do ironman triathlons, and told me 95% of his younger, active patients go with tissue valves. I have not decided on which valve I will choose, but am leaning toward tissue (at this moment).
So, there is my 2 cents..I wish you all the best on this road we are both on.
-Mitch Friedman
On January 7, 2012...
Kelly,
I am so glad they are finally making progress. We love you and will keep praying for you. Talk to you soon.
Love, Trina
On January 7, 2012...
Hey Sis,
I'm so glad to hear it's finally scheduled and that you're able to move forward. I know the waiting and uncertainty have been very frustrating. I hope that as unsettling as all this is, you have some peace in being able to move forward and getting the necessary procedures done. As always, I continue to pray for you.
Love,
Chris
On January 7, 2012...
Good for you Kelly! It is a shame that we sometimes have to "take the reins in our own hands". But we have to be proactive when it comes to our own health. It's like your car when "something just doesn't sound right" but the mechanic can't find it. You know your own body. Find someone that takes your health just a seriously as you do. Good luck and let us know what they find or don't find.
Linda Dixon
On January 2, 2012...
Hi Kelly. I had my mitral valve repaired at UCLA and the experience was magical. They were very quick - I had my surgery 1 month after I first called them. UCLA is a high volume center of excellence - exactly the best place to go. My surgeon was Dr. Ardehali, and my initial eval was with Dr. Lee. Call Dr. Ardelhali's assistant Camille at (310) 825-5841 and she can help you get started there. Be sure you mention that your symptoms are getting worse with time. By the way, I went to UCLA for a second opinion after I was unhappy with my local cardiologist. And it turned out fantastic.
I hope this helps - best wishes -- DVB
On January 2, 2012...
Hi Kelly, I just read your journal, I am new to the site. First of all, I am sorry that you are having such a rough time and I hope 2012 will bring you answers and solutions. I have to say that there is something not right with what is happening with all of the delays. I don't know where you are going or how experienced the doctors are, but I believe you should get another opinion. Actually, I am a firm believer in always getting a 2nd opinion (I am a medical professional for over 30 years). There are CD's of all these tests you have had done, law requires that they be made available to you and you can take them for your 2nd opinion. You do not necessarily have to repeat the tests. I would also consider going to a large medical center, there are several in Calif. These centers see unusual cases every day and have the latest technology available. I will pray for God's guidance for you. Please get another opinion.
Fellow "valver" - Linda Dixon
On January 1, 2012...
Oh Kelly, I can't believe they are making you wait so long. Please get a second opinion. Can you go to UCLA or Loma Linda? I know a few people who have had heart surgery at Loma Linda. I am keeping you in my thoughts and prayers.
Love you,
Annette
On January 1, 2012...
Hey sis,
So sorry to hear about all the delays and frustration it's causing. I can't imagine how difficult it all must be. I love you and I'm praying for you. Ultimately, I believe good will come of it.
Chris
On January 1, 2012...
Kelly,
I just read your journal. All this waiting doesn't seem right. Understand the bleed has to be pinned down.....but might want to get another opinion...."fitting you in" is balony.
Good Luck!
Pat Culley
On November 4, 2011...
hello my name is marina, I just had surgery on oct. 21 st. where are you having yours done?
On November 4, 2011...
Hi Kelly, I am so glad things are progressing relatively smoothly. I still can't believe you are going through this. Personally, I have had more surgeries than anyone I know, so I am sure that you will be fine through this ordeal. I am telling you, us Macy kids are tough. I don't know if is where we grew up but we are all survivors. You are in my thoughts and prayers daily.
I love you girl!
Love,
Annette
On October 28, 2011...
You seem far too young to be facing such a titanic task in order to repair your heart; however, you have your youth and vigor to carry you through. We are all one big extended family here who have gone through very similar procedures along the way and our very survival is testiment to the skills of our Physicians and the miracle of our technology.
All the best-Terry T.
On October 26, 2011...
Wow Kelly! Sounds like your doctor is really on top of things for you. LOL about you telling him you loved him. Keep the updates coming. ~Jackie
On October 25, 2011...
Kelly,
You are such a positive and uplifting person. Keep up the amazing attitude. We will keep praying for you!
Love Josh & Trina
On October 24, 2011...
Kelly,
Hope test went well. If your doc is cute... :) enjoy!! Big hugs. Adrianne
On October 20, 2011...
Hey 'Sis',
I'm glad everything went well yesterday. I hope you're feeling better and that we get a chance to talk soon.
Love you,
Chris
On October 17, 2011...
Hey Kelly, good luck on Wednesday. Our thoughts and prayers are with you. Josh and Trina
On October 17, 2011...
Hey Kelly ~ just wanted to send my love and prayers your way. I sure hope your test go well. I am sure it will. I am in Nicaragua right now so thank goodness for facebook and email. Your friend ~ Debbie Kirylo Carpenter
On October 17, 2011...
Good luck Cuz! Everything will be just fine sweetie! Praying for you! Love you and God Bless!
On October 17, 2011...
Good Morning Kelly!
I do think you made an excellent decision to go with the tissue valve- exactly the same reason why I would have chose if I were in your shoes.
You sound as if you are doing well spiritually and mentally too- I'm glad you get time between appts to make sound decisions.
Take care- Lori Contreras
On October 17, 2011...
Praying for you on Wednesday Kelly! Maybe you will end up Mrs. Cardiologist. LOL!!! Keep the updates coming. I like knowing what is going on with you. =) Jackie
On October 5, 2011...
Kelly,
Thanks for keeping us included in this experience. I'm here to support and encourage you. You have a beautiful spirit. Continue to stay positive, and remember that you have lots of shoulders to lean on, especially on the days that you don't feel too honky dory. :) :)
Sending lots of prayers and hugs your way
Sarah Harris
On September 27, 2011...
Hi Kelly, the journal is great. Thanks for keeping us up to date. Your positive attitude is amazing! My thoughts and prayers are with you. I'm here if you need anything.
Love,
Trina
On September 25, 2011...
Hey Kel! Thanks for keeping us posted. My mom's been updating me regularly since I haven't logged in until now! Love ya and take care xoxoDeb
On September 25, 2011...
Kelly, Best of luck- I know you will do great. I can help answer a couple of your fears you have. I know a little bit about this stuff for several reasons. My husband just had his mitral valve fixed but the main reason I know about your fears is that I am a cardiac RN and your fears are very common. As SCARY as it sounds about the sternal chest crack its not that painful my patients tell me afterwards and that it's usally very well controlled with a couple of percocets. I think the scariest part for many people is just thinking about the chest crack, but 9/10 patients tell me the pain from the chest crack really isn't as bad as they expected it to be. My words of advice for you after your surgery would be get up and walk as soon as possible (yes, it might hurt the first time so make sure are medicated) but walking will definetly help speed the recover process and it lifts the mood. Set a goal for your self: how far/long are you going to walk, and walk a couple times a day, goals will help keep you motivated and inspired to get better. You will do great!! Our thoughts and prayers are with you and your loved ones.
Samantha
On September 23, 2011...
Kelly, We just heard. It's really sad that it takes something this serious to bring out the long, lost relatives. Please know that we are on-board now and have added you to our prayer chain. I have always been a firm believer in a positive attitude and feel that 90% of the battle is won through that attitude. If there is anything you or Emma need, please don't hesitate to contact us - even if it is just to hold a hand or to offer a big hug. I pray that you feel all the prayers being sent your way. I know you are in His hands. Love, Scott & Marianne
On September 19, 2011...
Hi, Kelly! My parents and I were very sorry to hear about your bum heart valve. (I'll check with Erin tomorrow, but I would bet she's sorry, too. ;) ) We will keep you in our prayers. I read your most recent post about how in 15 years you have no idea how much medical care will have progressed, and you're absolutely right. Hell, 15 years ago only uber-rich people had cell phones, and now every kid I know over 5 has one and can use it better than me. I have a good feeling about your upcoming surgery - didn't Letterman have the same procedure done?...And he was still able to bang all those interns - you'll be doing well in no time! :)
I signed up for e-mail alerts, so I will check back in on you regularly. Keep up the good spirits, Kelly!!!
Love,
Holly
On September 19, 2011...
Kelly - as difficult a time it is that I know you're going through, I am certain you will be fine! Something that I would ask you to consider is what you can learn from going through this experience that will help others in their lives. I think you're already starting that by keeping this journal. Thank you for that! FYI...Please check the new e-mail address. I don't check my @easolve.com account very often anymore. Things are going well on this end. My thoughts are with you! Miss you friend! Rick
On September 18, 2011...
My thoughts and prayers are with you my dearest Kelly. You are a very strong woman...(all of us in this family are…hear us ROAR!)…you WILL beat this with the help of your family, friends and God! Love your positive attitude…it will make you healthier for surgery with a great positive mind set like that….I’ve been there done that!...and it works! I know you’ll make the right decision on whatever valve is best for you.
Hugs and Kisses to ya…and all my love….Leslie…:)
On September 17, 2011...
Hi Kelly - Just heard about your coming surgery. Whatever decision you make about the valve replacements will be the right one for you. We are praying for your speedy recovery. Our best to you and your Mom - love and hugs, Myrna and Gary
On September 17, 2011...
Hi Kelly! We all have been praying for you since we found out about your condition and will continue to do so. We pray that you and the medical team will make the appropriate decisions that will lead to the best possible outcome for you. If you or your mom need anything we're right across the street.
Jerry and Tina Stein & family
On September 16, 2011...
Hello Kelly!!!
My Name is Pete Johannsen and I am in the same boat as you are as far as figuring what valve to go with!
I am 41 so my age is at the point my Doc is recommending a Mechanical valve and taking Coumadin! BUT I am 41!!! I still consider myself in the "young and dumb" stage sometimes, and taking a blood thinner is NOT my cup of tea. Yet......if I went with a tissue valve I would have to have a 2nd surgery and remember......there is ALWAYS an option with either valve....you would need to take a blood thinner!
Please read my journal.....I have a lot of info posted in there and have had a lot of people weigh in on the option.
All I can say......either way you go is a GOOD choice! Just ONE will be BETTER for you than the other.....So either way you go....is not a BAD choice!
On September 16, 2011...
Thanks for the update, I am glad the doctor is sharing everything with you, and hopefully he can advise you as well with either the mechanical or the tissue value, We all just want you well, soon.
Love you, Doris Shryne
On September 16, 2011...
Oops, I sent my message too soon. It was Sara S who sent the last message. :-)
On September 16, 2011...
Hi Kelly,
I am definitely going to be using something like vitamin e or maybe bio oil on my scar. I'm getting married in January so I need the scar to be as healed as possible! I'm going to post pictures of the scar each week so that people can get a guess of how the scar heals. That's the one thing that is kind of tough for me, I can't find too many pictures of scar healing on women between 6 weeks and 8 months.
Another thing that is good about the biological valve is that pregnancy would be easier, if that's something you're interested in, than if you were on blood thinners. But obviously if the blood thinners will make you feel poopy, you want to post-pone using them for as long as possible!
On September 16, 2011...
I think you are making the right choice Kelly! Keep the updates coming. I can't come and physcially see you since I'm out here in Ohio, but at least I can keep up on our progress this way!
We are all here for you, if you get scared, put it out there, we will make you laugh or something. You deserve this! You deserve to be all better and you will be! You will do great and in no time it will all be behind you!
Please keep us updated and hope you have someone lined up to give us updates during your surgery.
God bless!
Still waiting...Linda