Hi Linda, I took a little break, but am back now. Just read your latest entry and all I can say is WOW! I feel the same way about much of what you wrote. I feel like we all are a family and my new family here has so helped me through this journey. Everyone here DOES get it more than my family. I feel like posting and simply saying "ditto what Linda said" as I could not put it more accurately than you did.
Thanks, thanks, thanks to you and Jane for pushing me to start my own HVJ. I am forever in your debt.
While I know many of us are on your "not fair" list, it is more people to be prepping you and there at your finish line. Stay strong!
With you all the way Linda. It's been an instant camaraderie and you guys are like family but with a different twist because you all understand what it's like to go through this.
Jeff Shebovsky, Orlando
I shared this with Mitch and he suggested that I post it. There is a belief that we are all born with parts to a puzzle, but not necessarily a complete puzzle. We hold pieces that complete other peoples puzzles, as do other people for us. What you expressed about your feelings about the HVJ family only confirms that belief. We are here to offer our puzzle pieces to each other. You have certainly done that and so very well on this site. It is an honor to be part of your HVJ family. You shine and we bask in your light.
Linda - I think there is something about facing heart surgery that makes us face us our own humanity and opens us up for these emotional swings. I think of these swings in another light (and I also have dealt with some during the past couple weeks), and since I know you are a person of faith, sometimes it is just God's way to remind us to "Be still and know that I am God". You/we are in God's hand and His will will be done so try not to worry so much about what you can't control. I know the value of friends, church, etc. and they are all important. And like you, I have a very small family. But they are who I thought of at all times through the past several weeks and tried to stay positive for. I know you will do well and you have so many people on this site praying for you. I know it's easy to say but sometimes harder to do, but just try not to worry - this is going to be better than you're allowing yourself to believe.
I'll say again, I will send you my phone number if you think talking with someone one week removed from surgery will help.
Just read your post. And I must say I was the same. And still now my family doesn't understand the relationship I have with HVJ family. And why I was in such a rush to make sure I let you guys know what's going on and it's because like you said you guys understand me better and know what I was going through. So no you weren't sappy lol this is the one place we can express. Keep in touch
Thank you for all your great posts, the hardest part for me was accepting that I have a heart condition and need surgery, once I truly accepted that I was at peace. You will do excellent you will see, recovery will take time but you will get there, you will look back during recovery and see really how fast things go. GOD LOVES YOU, I will keep you in prayer, Jim
"Linda, I do understand and you are not alone. You have all of us. Your postings and the sharing of your story will help so many others who are afraid to reach out. You can do this and you will be fine. You will be re-newed. After recovery, you will be healthy and ready to do things you haven't done in awhile. You will be bolder, braver and know life is a precious gift. I have you in my thoughts and prayers. You will do great! Your friend, Janis Kielbasa
I'm glad you are journaling and sharing your inner most feelings with us all. God brought you to this site and He will bring you through your surgery.
Once again, I'm throwing you a cyber hug from me.
I remember those feelings well. I got so many massages before my surgery and went to several yoga classes to help me get over the anxiety. Still, a song on the radio or a thought would creep into my mind and I'd lose it also.
You will bring a big smile to all of us HVJ folks when you post your first enrty after surgery and report that it's true.....the waiting is the hardest part.
Love you,Linda. I continue to lift you up in prayer.
Linda - I confess, I saw where you were an avid Clemson fan but decided against bringing up the Orange Bowl fiasco - just trying to let you move on! That was truly a great day to be a Mountaineer fan!!!
Anyway, I wanted to say what others have already said, I also dreaded the breathing tube but I really do believe the dread and anticipation of waking up with it are worse than the actual event. You're pretty much in la la land and it will probably be out before you have a chance to think much about it. Try not to waste too much energy thinking about things you can't control but others will for you - we're probably much better off for them doing it anyway! You will do great and it will be here and gone before you know it! I have your surgery date on my calendar for an extra round of prayers!
It was me - Anne from Colorado who posted about an hour ago. As for the type of valve, I figure if I need another valve down the road, they will be doing the valve replacement through the femoral artery on just about everyone.
I'd trust Dr. Gillinov to know what is right. I'm sure he will have a good reason. Dr. Mihaljevic also preferred tissue valves.
Hope you are relaxing a bit. It seems everyone worries about the breathing tube but it my case, I can barely remember it. You aren't exactly alert and rarin' to go while they have it inserted! You are in and out of consciousness - kind of drifting along. At CC I think they are so skilled and you are so well cared for, that they get it out sooner rather than later.
Just put on your relaxation tapes or some soothing music and try to think pleasant thoughts.
And remember - do your breathing exercises as many times as you can. They really help if you have back pain. I hope your operation is as easy and pain- free as mine was.
Hi Linda, Just want to let you know I'm thinking of you. You are in my thoughts and prayers. I know you are still waiting and the anxiety of that can be consuming. I got lucky because not many want surgery near the holidays so surgeon had openings. I only had a few weeks of waiting. You will do great and have the benefit of nice weather so you can walk outside as you recover. I'm on week 4 and doing well. I start cardiac re-hab Feb 9th. I will admit, hate the coumadin...they can't seem to get mine right so I'm having bi-weekly blood draws. Hopefully, it soon will get on track. I stopped all pain meds. I really didn't need them any longer. I struggle more with sleep so will ask cardio about that. Its amazing to think just 4 weeks ago I had open heart surgery/full sternotomy and how good I am doing now. You will be amazed at your weekly progress. It is a blessing that we can be repaired and lead full lives. I know the waiting is hard but know you will have a good outcome and be on the path of recovery very soon. Keep in Touch. Janis Kielbasa
Jeff, so far my date is March 13th!!!! That is the first opening Dr. Gillinov had. I keep hoping he might have a cancellation before then...I can get ready really quickly..but til then...waiting, some days patiently, some days NOT!!
Just wanted to say hi and that I'm thinking about you.
Shortness of breath is VERY common in valve patients. That was my major symptom. Sometimes it was very mild. Sometimes just getting into bed made me huff and puff. No gulping for air except on a couple of occasions walking up hills. If you're concerned, call your doctor.
I noticed my symptoms getting noticably worse as I got closer and closer to surgery. I don't know if it was nerves or if my condition was getting worse. Either way, after surgery most disappeared pretty quickly. (I still get short of breath on hills . . . just my lot in life!)
TRY to relax . . . not that much longer until you'll be feeling better.
I also wondered about the term "shortness of breath". I never could tell if I was pre-op and now post-op I still feel it if I walk up a few flights of stairs. I think if you have to question of then we are not. Mine sometimes woke me at night. I think it was anxiety as well. The waiting serves a purpose. It is so annoying that when the date gets here you are happy. You would never have been happy about open heart surgery. Just another way of looking at it.
I keep you and Mitch and all those waiting in my thoughts.
Glad to see your new post. I know waiting is tough, but you are tougher! Don't wait too long wondering about symptoms. As I am sure you would be quick to tell someone, go see your doctor and see what he says. Maybe you have progressed and need surgery sooner. Hmmm...would that be a good thing or bad thing????
I think of you often. Stay strong.
- Mitch Friedman
HI there.. if you feel comfy please call my cell Linda.. we'e in the same boat. .. and while I"m keeping busy must admit have the same questions/ fears/ what ever as everyone else am staying positive / with opitmism..yada yada and now I"m veyr glad that I choose st louis; as I sure as heck didn't wanna wait til March. but as you see..Jan is almost over..
think of you often. will be traveling; but here's cell if you like:..314 276 1012 I do a lot of presentations; so if vmail answer...yes leave a message. I will call.
Yes your right my brain signed my name but my fingers didn't lol and yes I think that would b a great idea. I guess you truly meet new friends everywhere. I now have something else to look forward to so I must pull through this surgery so we can mert once we both are well. I will defiantly keep in touch.
Hi, there you are. I had to look for the person which left such encouraging words in my guestbook. I have to let you know that you really lifted my spirits. And I pray that your surgery is a success. You deserve it. And thanks again for the encouraging words. Oh yes my husband and my mother will be updating for me. At least I hope there able to if there not so nervous!
It was me Linda....Jamie Todor...I KNOW you are sweet cause we are in this heart thing together...sisters and brothers all!! I forgot to sign this...drugs are still making me buzz a bit. LOL. Jamie Todor
I think having a meltdown is soooooo normal. Have to let all of those emotions out dear one. It is such a stressful time.... I really like the 6 points posted on your comment page. They are soooo concrete and will help you stay grounded. It is soooooo stressful and it doesn't take much to rattle your cage these days. I seem to be still so sensitive. Take some deep breaths. I will pray for peace within your heart for your surgery and your doggie. I am soooo happy you shared your fears and worries. Soon it will be your time and you will feel better. God bless you sweet Linda...so many are praying for you.
Hugs thru the journal pages!
Linda - thanks for the note and the encouragement. I have your surgery date down on my calendar and you are one I definitely plan on sharing info with.
If I don't send info about something you may be curious about, please don't hesitate to ask me. I think one of our missions in life is to share life experiences with others and I take that very seriously. I follow all of your entries and hope I can be supportive of you.
Linda - Thanks for the comments in my journal.
I'm wondering if I am reading too much as well but I can't help myself - I am so interested in all the experiences everybody has had or is having. The support on this site is amazing and I'm so glad I signed up as part of it.
My daughter will be posting for me from Tuesday (surgery day) until I'm again able. Believe me, I will certainly share my experiences with you and the group, Lord willing, as I move from pre surg. to recovery etc. Please stay in touch!
Dick Miller - Cincinnati
As we know we come in touch with such great folks here; this is from 'drivetoplease' who just celebrated her 1 year anniv. and it helped me a lot
I have it posted on my desk. too GOOD not to share... thanks Tracey !!!
Here are things I told*myself of over and over to calm my nerves before the procedure:
1.* They have been doing valve replacements for 50 years--it works.
2.* There has never been a better time in history to have a valve replacement.* We have amazing technology and tools today.
3.* Without the surgery my life will be shortened.* With AVR my life expectancy returns to normal.
4.* I am strong and healthy*and I can handle this.
5.* Once I am recovered I will feel better than ever.
6.* The scar is a badge of honor that I will be proud to show off as a symbol of survival.
You are quite right- the journal is for whatever you need to say, and none of it is silly, it is real. Most of us have been in the same place or will be before long. I truly think the mental aspects of heart surgery are harder than the physical aspects. John is right about the tube, you aren't likely to remember it at all. I found out later that they had to tie my hands down because I was trying to pull it out, but I don't remember anything about it. And nothing hurt that first night, or really even the next, they are so good about pain management. Only when I started trying to manage the dosage myself did I start to get in trouble. My night nurse told me to just go by the clock, if I wait until it starts to hurt the pain will get ahead of me. She was right about that. And don't worry about Willy. I had to leave my dog too. They can't tell time so one night or one week is all the same to them, and they are SOOO glad to see you when you get home! It really puts a smile on your face....
Vicki Pierson mitral valve repair 6-2-11
I had three months to think about my surgery...had many many meltdowns...even just driving down the street and I would have to stop to collect myself.
When I went into surgery knowing my three babies, dogs, would be there to greet me was inspiration to get through this for them.
No one worried about the breathing tube more than me.....Honestly I barely remember them removing it....and that time in your recovery you are so drugged you dont have a clue what is sticking in or out of you....
Having been a survivor now ....I had never had an operation EVER... I was terrified...my fright level was at a maximum level.....truthfully once you are knocked out... you wake up and you are cared for by angels in ICU and helped by the love and prayers of your family.....its going to be OK, not as bad as you have it in your mind...let go God will get you there..
LAS VEGAS NV
Hey lady. U were there for me so now I'm there for you. They say melt down s are ok. So u r good to go. But u also shine thru with so much optimism - hang on that
I go in 2-9. And I think been busy is keeping me from a melt down :). Come travel with me. You'll be too tired to melt down. Lol
I did get a new recliner so I'm a happy camper. Hear tell that'll be our best friend.
I just want it to be over & get back to mtpy job which I love.
I had wanted too, to go to CCF. However found that one of the best valve dr is rite here in st louis If I can I'll send u something that really helped me. I believe you'll like it. Prob tomorrow. It's on my big computer & im on the Ipad. Another valve friend sent it to me & it really helped
Best & stay in touch. My email is
Nancy@telephonedoctor.com. If u wanna email direct. Happy to hear from u. Hugs. Nancy. St Louis
I read your journal and it mirrors what I went through.......a few melt-downs and what-ifs and maybe I should have.....((( Wrapping my arms around you)))
My husband had a coyote/shepard mix that was so much like a coyote.....wouldn't let anybody touch her...very nervous. Before my AVR surgery, I went on 3 3 day trips. My daughter reported that the dog (Molly) was pacing from my bedroom to the livingroom....back & forth & back & forth. And, she wouldn't eat. My daughter and her 2 kids lived in my house during that time.
She was more clingy the few weeks leading up to surgery. I asked the vet and was given Valium for her. It worked wonders! Wished I would have though of that earlier.
Today is my 6 month since my surgery. Continue to write in your journal for us to read. Continue to share your thoughts & feelings. That's why this site is here. I know we sound like a broken recornd, BUT, the waiting is the worst part!!!
I believe that there is a reason that we have melt-downs. When something is so overwhelming we should expect many mini meltdowns. I think our thoughts go to something extremely sensitive because we NEED the meltdown, even though it is exhausting. We need to cry and curse and pound our chests(not too hard), and say Why me? The fact that you shared your day with us is a reassurance to all that we are just human. I know you feel better today. I promise you will look back at this and have trouble remembering the most anxious days. They will start to fade. Remember, we are all here for you.
You seem to have done all that you can to prepare for your surgery. We have the same diagnosis, are the same age, and both live in the Carolinas. I had my surgery Dec. 19th at CMC-Main in Charlotte by Dr. Mark Stiegel of Sanger Heart. It was a full sternotomy, and he was able to repair, rather than replace my ascending aorta. I was home by Christmas eve and have been doing very well. An old Charlotte neighbor used Cleveland Clinic and was very happy with them.
You're certainly entitled to a meltdown!!! A few days before surgery, I was prescribed some anti-anxiety meds, just in case.
You are in my thoughts...stay strong and positive...Your definitely entitled to have meltdowns any time you need to. I think having those real moments help you deal with what you're going through! Hugs!!
Oh my dear friend. Hang in there! And thank you for "living out loud." For many of us, this is not something that comes easily or naturally. And yes, that is why we created our HVJs in the first place. To share and put it all out there. This is the work we must do to get ready.
In return, we get support from family, friends (old and new) and complete strangers. All with the same message. We are here for you, you will get through this, and thrive. Yes, YOU WILL BE FINE. In fact, you will be a better person, not just physically!
Don't even think of trying to get through this alone and in silence. Reread the chapter in Adam's book that mentioned "get used to asking for help."
And remember, dogs are loyal. Willie is just pissed he can't be at your side in the hospital, because that is his job in all of this. No worries, he'll be waiting for you at home, probably on your side of the bed. just like Janis' dog.
Linda...Don't ever underestimate the power of your Dogs loyalty. During my long recovery when I was annoying the heck out of my family...Good old Frisky was by my side no matter how I acted. I was in the Hospital for 20 days and when I came home he was there waiting for his buddy like I just ran to the store!!!
Yes, the waiting is the hardest. Try and focus on how you will be good as new very soon. You have done your homework, top hospital and doctors, all will go well and you will do great. Per hotel: Northwestern/Chicago had 3 hotels that gave discounts to patient's families. My husband got a hotel across the street, usually over $200 for $89 dollars a night. Be sure to ask Cleveland...no one told us this...we just asked and sure enough it was something available. I have you in my thoughts and prayers. You will do great and soon be on the raod to recovery. Hugs, janis kielbasa
I have read your journal and I wish you the best from someone your age who is a 3 X visitor for heart surgeries valve and defect related. Each time the waiting is the hardest, however in retrospect each step serves a purpose for the journey. I did not discover
HVJ and all the wonderful support until after my last surgery. I am so glad you have your daughter to support you. Take care and if there is anything I can do or answer for you please do not hesitate.
From one Carolina gal to another