Nick and I are thinking and praying about you lots!
The time away from your children will be hard, no doubt, but you know the saying..."absence makes the heart grow fonder"...what a wonderful homecoming it will be!
I also wanted to take the time to tell you that you are one of the sweetest, bravest people I know and I really admire that about you. Please let me know if we can help in any way.
See you soon!
Today is your big travel day! Craig and I are thinking of you and sending our very best wishes for an uncomplicated surgery and smooth and rapid recovery. Your mom says your attitude is great and that is no surprise from you, so half the battle is already won! Just keep remembering that at the end of this new journey, you will be coming home to those beautiful little loving arms! Luv ya, Cindy and Craig
I had my AVR at CCF in July. As you know, you are in good hands there! The pre-op tests do make for long days. I was a little more than exhausted after the long day, but my husband treated me to dinner in Little Italy! :) (I was thinking of something big & sparkly, but dinner was good too, since my real present was my new valve the next day) lol
When my children were small, I had several surgeries, normally I was gone only a week, however, once it was 10 days.
I know, first hand, how difficult it is for a mommy to leave her little ones, even if it is with family. My prayer is that you won't have to stay that long....but the main goal is to take the time needed to get well......it will also benefit the children in the long run.
One thing I know for certain....it will be an emotional goodbye, as well as an emotional reunion....but I can tell you....when you return & see those little faces...your true recovery will begin... Those sweet little faces will push you to fight through recovery....and be a much healthier mommy than when you left...
Best of luck to you, Natalie....I will be thinking of you & praying for a speedy recovery!
All the best,
We will be praying for your speedy recovery. Mike's brother had the same surgery this summer and he was feeling great in no time at all. I'm sure your family will take the best care of the twins while you are away. You don't have to worry about them!
Love the journal and I'm sure it's comforting for you connecting with other patients.
Sending all of our love, prayers, and positive energy your way!
Natalie: I am praying for you, and I know that Jack and Leah are going to be having a blast while you are away! ;)
I am glad to know that while your babies are in good and capable hands, so are YOU! Your surgeon is so competent and well trained, and I am going to be praying for a speedy recovery! Have a safe trip! Love, Kelly
Yes, I was nervous before my surgery. The closer I got, the more I was nervous. Then I had my pre-op on a Friday and I became calmer, more accepting and trusting. The staff was very professional and it seemed like my surgery was just a routine thing for them. This feeling continued thru the weekend and right into my surgery on Aug 13, 2012.
During that weekend, my mind switched from the bad things that can happen to the good. Most people survive this and flourish.
I'm praying for you Natalie!!! Good luck on your surgery and recovery. See you on the other side of the mountain.
The Cobbs LOVE you so, Natalie!! You will be in our daily prayers and we will be anxiously awaiting your news of a great surgery and healthy recovery!! You know the babies will be fine with Grandma Rhonda!!! It will be like Disney World for them!! You will have to whip them into shape once you are feeling well. Hee Hee1
Hi Natalie, Enjoyed the evening with your parents last night. We all love you so much and know you will have a quick recovery! You will be back with your darling babies before you know it. Keep us posted and know you have your extended family thinking of you often. XOXO Gretchen
Your going to do just fine. Your in my thoughts and prayers each day. The kids will do fine so just let people help you and you save yourself to take care of yourself and get sleep that will help you heal much quicker. Keep us all posted and we send our love to you. Beckie and family.
I wish I could make the wait a little easier for you, but it is just a reality we all have to go through. It really is the hardest part of the whole ordeal though. Once you get to the other side, it is so nice to know you just need to recover!
The Intercontinental Suites is a great place to stay, and they are very accommodating to CCF patients. I hope all goes well and you get out sooner than you think.
Stay strong and God Bless,
Hi Natalie, It won't be long before all this will be in the rear view mirror and wondering why all the anxiety. But I also have a lot of anxiety at times. May God be with you for a speedy recovery so you can get back home to the little ones. Don
Hi Natalie, I'm with you on all of this. Mine is 16 days away. Right now I'm good, but dont know how long that will stay. Like you I will be so glad when this is all over. The wait is gruelling. Told the doctor while Im under do a little brain cleaning also get all this stuff out of there. lol. See you on the other side of this mountain very soon you Don and I can be the 3 muskateers walking down this mountain.
Mooving on up
Thanks for signing my guest book. I'm glad to have another pre-surgery patient to talk to. It is really hard to wait, I'm glad I can have my operation at KU MED they are much less busy than the Cleveland Clinic.I hope you don't stress too much. I like the idea of a recliner.
Just saw a couple of your questions, first I hope you got a recliner that you can get out of. We had one already but found that since OT was a kick down with legs once it was fully reclined I couldn't get out of it. My wife would have to come over and put the foot part down. Something to watch out for. I ended up sleeping in one of guest beds, propped up with pillows. My regular bed was too high to get into for several weeks.
As far as what to bring I had grand plans to read books and catch up on things and quite frankly didn't to anything in the hospital but nap, walk and bug my doctor to go home. I had surgery on Monday and was discharged on thursday so it wasn't too bad.
Good luck you'll be up and moving before you know it.
I did alot of research prior to surgery and "The Patient's Guide to Heart Valve Surgery" was the best resource for me. It covered just about everything I wanted to know more about and it was easy to understand. I especially appreciated the section that highlighted the advice that other patients had for those who were going to need surgery. I even took it to the hospital when I had surgery. I call it "Heart Valve Surgery for Dummies" because I knew very little prior to surgery.
How I handled the waiting was to use the time to get as much done at home and at work, so that for 3 or 4 weeks after surgery, not much would need my attention. This kept me occupied and the time passed quickly.
Yeah, it's kind of tough having all that time to stew about the upcoming surgery. I found myself using the time to learn everything I could about what was going to happen. By the time I got to the OR, I could probably have done it myself with a good enough mirror! I also read a bunch of journals (as well as both of the books you spoke about) and read all the good info I could find online. It helped, a LOT.
I enjoyed reading your journal and see how similar peoples feelings are prior to surgery. Also, the longer the lead time before going in for the surgery, the more anxious you become...I believe. I had a pretty long lead time ( more than 2 mos.), but I used the time to do research and ask alot of questions on this site. Folks here are really helpful so ask away!!!!
You mentioned the mechanical vs. biologic valve question. I had the biologic (tissue valve) but I am 73 yrs. old. There are alot of people your age on this site so it should be helpful to you to hear what they have done and why. Personaly, I believe that science is advancing so rapidly now that valve replacement in the next few years will be as routine and simple as changing a battery or light bulb. They are already doing it via the transcatheter procedure and that will probably be the wave of the future. I would not personally want to have to take coumadin forever, nor would I like the hear the clicking sounds the mechanical valves make. Just my opinion for what it's worth.
Also it helps to keep in mind that you have chosen a good surgeon and an excellent hospital for your surgery and you just have to trust in the team and also in God.
Good luck and I will keep you in my prayers.
p.s. I had my surgery 4 weeks ago tomorrow and I am doing great and back driving for several days now.
Many blessings to you,
I had surgery with Dr. Gillinov at CCF last October, and there are a few things I would recommend taking. I'm really picky about pillows......I love my down pillows at home, and I brought them all with me to CCF, and I was really glad I did. CCF has the worst pillows ever, so I was really glad to have my own. You might want one for your husband or whoever might want to stay in your room with you too. I also used all my pillows to get comfortable in the hotel after discharge, and on the long car ride home. I saw where Linda said she didn't use her PJ's.......I put mine on as soon as I got to step down, and they were way cozier than a gown. You will have to have some that button down the front though......your chest will be wired up the entire time you are in the hospital. I was in the hospital nine days, so I really wish I had brought two sets of PJ's because mine got kind of gross after wearing them that long. I would also bring a laptop or iPad. You probably won't feel like using it a lot, but it does help pass the time when you feel like it.
I bought an electric recliner even though I thought I wouldn't use it. While I only slept in it once, I pretty much lived in it during the day. It was super easy to adjust to any position I wanted. I slept in our bed at night, but I would use four or five down pillows to prop myself up. It took a good two months before I could lay on my side for even a little while.
All that being said, everyone is different and you will figure out what works for you. The waiting is the worst part......it really is! CCF is an incredible place, and they will take great care of.
Godspeed and good luck.
Natalie, I see you know about the recliner, I slept in mine for weeks! I was advised not to sleep on my side or stomach for a "few weeks". I am a side sleeper, not at all a back sleeper, so the recliner served as a kind of cradle, allowing me to rest on my back. I had to buy mine (electric), but I'm told they can be rented. I urge you to get a travel pillow, the donut shaped ones that go around your neck. I found mine at JC Penney, about $12.99 I think, however, I saw them in the airports and I'm pretty sure I saw them in one of the shops at CCF. Almost everyone complains of neck/shoulder discomfort following OHS and these pillows help support your neck and head, taking a lot of pressure off of your shoulders. It was a lifesaver for me. As for other things to take to hospital, I took some PJ's and a robe and slippers, but never used any of them, lol. Just wore 2 hospital gowns, one opening in front, one opening in back, for my strolls around the floor. Oh, and be sure to get some chapstick! My lips were very dry after the breathing tube came out. Can't think of anything else right now, but you still have lots of time to get everything ready.
Linda Dixon, AVR 3/13/12
Wasn't happy with prior info. Went back and looked at my April journal. What I bought was an INFINITE POSITION LIFT CHAIR, for knee hip mobility people. Bought on-line, was here when I got home, and I still adore it.
As a CCl vet (AVR 5/7/12) I can only tell you to relax and "go with the flow." I was very critical at the outset, but soon realized what a fine tuned machine CCl really is. We all come out of post op differently. I was in CCl 13 days. Many did it in less. If you can, get out of your room and walk, walk, walk.
Your recovery room is awesome, with a wonderful view. The staff is great, and they will tell you when to go.Meanwhile, hotels, restaurants, and Clinic based options are available for you and family.
As far as home preparation is concerned, 3 things come to mind:
1. Stairs are a problem. CCl will test you on ordinary institutional stairs. Got weird ones? Fix 'em.
2. Storage must be CHEST HIGH. All bottles must be easy open. The ten pound limit is FOR REAL for a few days.
3. I bought an electric leveling chair. Will stand you up and get you out, or will let you sleep totally level.
My husband had quadruple bypass surgery 3months ago. Following the suggestion found here on this blog, I purchased a "power" recliner for him to sleep in. It was a God-send. It automatically reclines back without having to use your arms (a no-no). I suppose you could rent one somewhere. I purchased ours at Evans Furniture in No. CA. From time-to-time he still uses it. It is still difficult for him to get totally comfortable at night. Patience and positive attitude go both ways in the healing process.
You've come to the right place for wonderful advice, support, and knowledge. My husband will have a mitral valve replaced in Cleveland (Dr. Gillinov)next Wed. (7/11.) If you wish to follow my posts search for Norb's Wife.
Best to you, and I'm open to any questions as you will find everyone else is on this site. Smiles,
Cly Denna (Norb's Wife.
Although I haven't have my surgery yet, (july 13) will be the day. I been researching and talking to doctors and they also told me that because I'm so young the bovine valve is not the best option because is a chance of more than 55% I will need surgery again in probably 10-15 years if not before. My surgeon told me about different options and also about the on-x valve, with this mechanic valve they said is a possibility that in a future you don't need to take cumadine the rest of your life because they expect that taking aspiring could be enough. (They still waiting for results) but you can research and decide if is a good option to you. I decide to go with on-x with the hope of not taking coumadine for life. I wish you the best in your decision and surgery. Gbu
Welcome to HVJ.!.... Although I have not had my surgery (scheduled for 7/17/12 in Cleveland) I cannot give you first hand advise on the surgery (yet)....but my advise to you at this point is read, research & ask lots of questions. These folks here at HVJ....have most of the answers!.... Heck, for the most part they answer my questions on other journals!..
I found my "calmness" on this site. At first I was crying all the time....could not fathom how I was going to do this just 5 short months after a knee replacement
As you will very soon see....the folks here are so much better now that they have had the surgery.....and the testimonies get, bigger, and better....and most of all ...so full of life!.....
Looking forward to following your journey!
I'm 36 and I have a dilated ascending aorta as well, but due to a bicuspid aortic valve rather than an auto-immune disease.
I only discovered my condition in February so I was surprise to say the least to realize I needed open heart surgery. After a small freakout, I'm now just reading everything I can about not only the surgery, but the heart as well (I'm a bit of a nerd).
I'm scheduled for surgery in two weeks in NYC where I live and I'm feeling pretty good about things. I'll be sure to post detailed updates for you on how it goes!
Hi Natalie, welcome to HVJ! You still have a while to go, but this is the place to come for all sorts of advice, experiences and most of all encouragement. I had my aortic valve replaced and dilated aorta repaired at Cleveland Clinic in March. It is an awesome place and the staff is just wonderful. I traveled from South Carolina and it was the best decision I ever made. I was discharged on day 4 and flew back to South Carolina on day 5. The surgery was not nearly as bad as I had imagined it would be. I am 63 years young, lol, and went with the bovine valve. It was a hard decision and in the end I will probably have to have surgery again, although they pretty much expect the transcatheter approach to be perfected and available to everyone by that time. But, my experience was so positive, I don't dread the thoughts of surgery again.
While you are waiting, just remember...this is actually the hardest part. Everyone says that and it's the truth! Take care and if I can answer any questions, etc. I would be happy to.
Linda Dixon, AVR 3/13/12