Joan's Heart Valve Journal

Hi Joan -

I am just getting caught up on HVJ and was so, so very pleased to see an entry from you. And even more pleased that you are doing so well. I am very happy for you.

Thanks for your kind words about me to. I think of you often.

Be well,
-Mitch Friedman

Janet & my mother are childhood friends. My email is asitlies@gmail.com We are currently on Fox Hollow Lake renting, but should be moving soon. Feel free to email.

RTW

I was just speaking with my mother, Gloria, who told me that you live in the same town that I do. If I can ever be of assistance, please let me know.

Rich Walker
(Dear friends of Janet & Jim D)

Hi Joan, Glad to hear you are doing good. I was thinking about you, Mitch and Selma during that storm. Glad you survived it. That was pretty scary. I feel so sorry for all the poor people still suffering there. All we had was a cloudy day and a little wind, but we always get wind here. Hope you have a Happy Thanksgiving. We have so much to be Thankful for.
Mooing all over
LInda H and Elsie AVR 9/19/12

Joan it is so good to read your five month update. Very encouraging! I am so glad your home was not damaged by the tree! Wow! I heard from someone at my rehab that they went to a trainer to help them push to the next level and they felt it really helped. Happy Thanksgiving and prayers for continued solid recovery! Sherry Bradford. AVR 10/23/2012

Joan,
You left an encouraging message on my journal. One question, did you have a minimall invasive surgery or did they need to open your entire chest?

Just looking for info anywhere I can get it!
Information is knowledge!

Vicki E.

Look at you feeling good and like, "what surgery!!!" Wow Joan, I could not be happier for you. Rought start, fantastic finish. Better than the other way around! Keep up the good recovery work. Who knows, maybe you will start making regular trips to NYC just to see shows and have fun....OK, maybe not. LOL.

Be well Joan. Let me know if you do make it back to NYC, would love to see you again.

-Mitch Friedman

Hi Joan, It doesn't seem like it has been that long since your surgery. With Dr Oz I just watch him on tv. He my favorite doctor lol. I will be going to St Francis (Bon Secours) in Greenville SC with Dr Mazaraz and Dr Dennis assisting. What is so scary is the words ASAP, its complicated and having his partner being the main doctor cause of the anuserym. Not sure what he is going to do until he gets in there for anuersym but he did explain one of two things that he was going to do. He is the expert on anuersyms. It is all so close together that is what is making it complicated. But I have put my faith in God and the doctor told me his hands would also be there. I will just be glad when its over with. You take care and enjoy rehab. Cant wait to get there myself. Loosing all this weight I also need to get rid of a lot of flab, so I will have 2 purposes. Take care
Almost there
Linda H

Hi Joan...you sound great!! Isn't cardiac rehab fun? I only have one more week left (total of 12), but I also plan to continue once my time is up. I really enjoy it and I feel so much better when I go. I will do things there that I would never do at home. Yesterday was my 6 month anniversary and I almost forgot! 6 months ago I could not have imagined I would ever forget! So happy you are doing so well and about the metoprolol...told you so, lol! I tried to come off completely, but it looks like the 12.5 mg once per day is my new BFF. But that's okay, it seems to be keeping my heart rate down and I don't get too drowsy as long as I don't sit down, lol. Take care and let's keep in touch.
Gooooo Tigers!!!
Linda THE Tiger

Hi Joan, Good to be hearing from you again. Glad you are doing so good now and you are doing a lot better. Good luck in rehab.
Almost there
Linda H

Hey Joan,

Thanks for the guestbook entry. 5 years of waiting for surgery. You are a world class procrastinator, but then again I feel very symptomatic. I can't imagine. I glad it turned out so well! All the encouragement has been really great. What was it like knowing you had a murmur at the age of 5? Did you know what that meant?

Thanks,
Carolyn

Hi Joan, it was good to hear from you. I am having some issues with my computer and my guestbook, it is just easier to respond in your guestbook or by email right now. I am still on the metoprolol, 25 mg, once per day. I am having issues with my blood pressure, however, it is really on the low side and I feel very fatigued and drowsy as well. The only time I don't is during rehab, when I actually feel great. I think getting my heart rate up actually makes me feel better. I have issues with blood pressure getting too low there as well during cool down. I plan to call my cardiologist tomorrow and ask to try to come off of the metoprolol. I am almost 6 months out from surgery, so I think he will give the ok. It was supposed to be a temporary thing anyway. I don't think anything was done really to my aortic root, it was just slightly dilated, so I know they don't want my blood pressure to be on the high side, but this is getting to be a real pain feeling so "blah"! As for the echo, I had my first post surgery echo done at 4 months. I have noticed some get theirs much earlier, don't know why there is such a difference.
About Clemson....YES!!! There are still Tiger Paws on the roads, wouldn't be Clemson without them. That should be a real test for me in a couple of weeks. You know how "hilly" Clemson is. Another reason I want off the metoprolol!
It was really good to hear from you, let's talk via email, if you like, until my computer issues are resolved.
lindathetiger@yahoo.com

Linda Dixon, AVR 3/13/12

Hi Joan, I don't know how I missed your journal before, but I'm so glad I found it now and that you are doing great on the other side. I'm scheduled for surgery with Dr. Stewart next Wednesday and while I'm feeling pretty good about things, it's always nice to read that someone else has been through the same thing, and successfully at that!

Summer

Hi Joan,

So happy to hear that you are doing so well. I know you did a lot of worrying about this surgery.

Keep us informed about your progress. I'm sure it will be uneventful and you will be better than ever soon!

Anne Shannon

Wait who wrote this?!?! I can't believe it! You sound great. You sound exactly like everyone else. I bet you never expected to be pme of the ones telling folks how manageable all of this is, huh?

Not only did you do so amazing with the surgery, now you are also doing great on the recovery. I am SO happy for you Joan. It has been quite a journey, but it is now all behind you. Keep up the good work. Drive somewhere flat and enjoy a nice walk when you can but watch out for the heat. Be well!! And if you come back through NYC and have a few moments, let me know. I would love to see you again.

All the best,
-Mitch Friedman

Hi Joan..
Congratulations with your recovery thus far!
My surgery is scheduled for the 17th at CC. It is so encouraging for me to read these many stories of success with surgery & recovery. It gives me so much hope to know that perhaps in just a short month from now....I too, could feel like I am on the track to a new & healthier life.
Thanks for sharing.....It is certainly the reason, those of us waiting, can walk in that hospital with pure excitement.
Continued success on your journey!
Connie T

Joan,
So glad to hear that you are making progress. Know we are thinking about you and wishing you all the best. Lots of love and prayers!

Karla

Joan,
It's Karla. Glad to read that you are doing good and back at home. Give us a call when you are able. Allen has been extremely worried. We love you Cousin!

From the too-hot South in Texas.

Way to go Joan! And a sighting of the legendary Mitch too. Extra value there. Keep us posted with the recovery and keep your body moving - it helps so much. -- DVB

Hi Joan, Welcome home and Im glad you are back on HVJ. Hope everything goes good for you and heres to a speedy recovery.
For the long haul
Linda H

Glad to here that you are home and doing well. You will feel yourself turning a new corner every week. Take care.

Robert Hartner 2/6/12

Hey Joan! Welcome back to the HVJ and welcome to the other side!!! Now see...didn't we tell you??? Wasn't waiting the really hard part? So happy you are doing so well, jealous that you got to meet Mitch! Maybe someday I will as well. Just remember..don't get over confident, take things slow and easy, don't overdo. Whew! How glad are you that's over??? Actually, I think I know...about as glad as I was when mine was over. Now stay away from people for a while...don't want to catch anything.
Linda Dixon, AVR 3/13/12

Hi. Joan. Well like everyone else was worried when we couldnt find your journal. So very glad its all behind you ! And ypur special treat of meeting mitch had to be a special reward for doing such a good job! Congrats !!

Im 5 month post & its like it never happened. I hope the same for you

Everyday is better ! Thats the truth. Best

Nancy friedman st louis. Ave. 2-9-12

Welcome home! Glad to hear you are doing so well. Keep up the great healing!
Holly P

Finally I get to say (ok, type) it...WELCOME TO THE OTHER SIDE JOAN AND WELCOME HOME!!!!! I am so happy for you that it is over and it went so well. I would not have missed the chance to meet you for anything. You did great. Now rest and take it easy. Sleep will be hard for a little bit, but still is better than being in the hospital. Walk as much as you feel you can. Try to do a little bit more each day.

Be well,
-Mitch Friedman

Hi Joan. Great news you're doing fine according to Mitch. Hopefully Adam can get his code minions to restore your journal. -- DVB

Hi Joan,Dont know what happened to your journal lt just dissappeared. Im glad your surgery went well and its all over. Welcome to the other side of the mountain. Hope you have a very safe and speedy recovery.
Im just glad that Mitch said he was going to see you so I got in touch with him and asked about you. Try and get back on here as a lot of us are wondering what happened. Good luck to you and God speed.
For the long haul
Linda H

Hi Joan - just wondering if you are still on HVJ - all of your Journal entries have been erased - is everything okay with you. I hope to hear from you soon.

Denise Kirchner MV Repair 5/29/12

Joan,

Obviously I dont know how sensitive you reflex is, but I don't know you are VERY sedated and groggy. My hands were not tied nor did I even have the urge to reach for the tube. I was in the hospital for a total of 8 days but only cause they don't implant devices on weekends and had to wait till the Monday for my pacemaker. ( which was the fault of no one) it was my third surgery and with each successive procedure there is a chance of having some electrical issues. Typically if all goes well most people are out within 6 days I believe. After the icu I was moved to the cardiac care unit. It's very new and each room is individual so I guess it's private. They are a good size though. Visitors were no problem!

As always happy to help any other questions just let me know.

JW

Joan,

I'm glad to hear you are going with dr Stewart. As I mentioned, I had AVR with him in march 2011. He and the entire staff at NYP are just the best.

I'm pretty sure the will draw your own blood pre surgury and run in back into you after bypass. But I could be wrong so don't quote me.

I would not worry about the breathing tube. It's uncomfortable but not painfull or anything. As they bring you out of sedation they will extubate you. It takes about 2 seconds and is not bad at all. And the truth is, you will be so groggy and most likely won't remember anything. I remember being worried about being in the ICU for a day or two (ended up being in for almost 2 days) but it felt like one restless night. It will go by much quicker than you anticipate.

As I said, Allan really is an amazing surgeon who genuinely cares about his patients. He and the staff will take great care of you.

Always happy to answer any questions you may have.

Best,

Jonathan

Joan,

To answer your questions; nobody can give you a clearance on not needing a transfusion post op- they will monitor your RBC to make sure they don't get to low. It is common to become a little anemic afterwards and it is also common to get 1-2 units of RBC after heart surgery as well. It's a big surgery and you will lose some blood but they monitor how much and make a decision from there.

2.) It is also very common almost all people have there hands tied down for the first couple of hours after heart surgery with the breathing tube in. They are called soft restraints and it just prevents you from pulling out the tube yourself while drugged up.

3.) Almost all people will have extra water weight on after surgery typically it is anywhere from 7-12lbs. This is because your heart was stopped for the procedure and yes they are pumping fluids through you unitl you are moving and eating on your own. They will give you diurectics to help draw off the extra weight. Most people lose the extra water weight before discharge.

Good Luck with your sugery. You will do great.

Samantha

Hi Joan!

I'm glad you've decided on a surgeon and have a date. That's a BIG step!

To answer your questions:

1. No blood transfusion.
2. I didn't feel the breathing tube until they took it out. Then I had a bit (a tiny bit) of discomfort as they pulled it out. had worried about the breathing tube thing . . . a waste of my energy!
3. I gained 22 pounds in surgery (they "inject" you with fluids) With the help of lasix, all 22 were gone by the time I was discharged from the hospital. Again, NOTHING to even think about.
4. I was required to have a dental clearance. Infections in the mouth are very dangerous for us valve patients. (That's why we need to take antibiotics every time we go to the dentist after surgery.) "They" say no dental work for 6 months after surgery (my discharge instructions did not say that) but I had to have a root canal 3 months after surgery. With antibiotics, I was fine.

Hope that helps.
Ricki Shine

Hi again,
I'm using Dr.Sabet Hashim and Yale University Hosp in New Haven, CT

Nancy B

Hi, Joan -- Sounds like you have full confidence in your doctor and that's a huge benefit. Now you can just take care of business and your day will be here before you know it. I haven't had my surgery yet, but no blood donations were required. I did have to have dental clearance.
Selma

Hi Joan,
I haven't had my surgery yet (sched for June 4). My dr has all his patients do two autologous blood donations that they give back to you after surgery. They say it helps in recovery.
As far as dental clearance goes, my dr said you should visitthedentist before the surgery because you can't have dental work done for six months afterward. There was no formal 'clearance' though.

Nancy B

Hi Joan, I think these things vary patient to patient and surgeon to surgeon. Here is what I experienced.
1. Transfusion - No, I did not need a transfusion. My hemoglobin dropped as expected (the solution used while on bypass dilutes your blood) but not low enough for transfusion. Just needed vitamins with iron for a while.
2. Breathing tube - Everyone's biggest fear (well almost, lol). I had some minor surgery many years ago, and awakened while still on the table with a breathing tube in. I had no idea that I would have a breathing tube and it scared me to death. Thought I had gone into cardiac arrest and they had to "bring me back". This time I was prepared, knew I would have the breathing tube. The last thought I remember having before they gave me the "big drug" was "Lord, just let me be calm with the breathing tube". I do remember the breathing tube, but I don't really have any idea how long it was in. Not very long I believe. Anyway, it was not bad for me. Also, it was not bad coming out, just had to cough really big for them to pull out. Honestly, it wasn't bad.
3. Fluid retention - yes you will have fluid retention, I gained 17 pounds during surgery, but they will give you Lasix and I had lost all of that by the time I was discharged.
4. Dental clearance - I know some people say they did not have to have it, but I did. It was to rule out any infection in my mouth that might cause my new heart valve to become infected. I am a microbiologist, so I know...bad teeth causing infected heart valves are a major cause of bacterial endocarditis. I would recommend that you get checked out regardless and not take any chances.
Hope this helps and if you have any other questions, I will be happy to give you my input. Take care and God bless!

Linda Dixon, AVR 3/13/12

I did not need a blood transfusion or dental clearance, but I wish I had gone to the dentist before surgery. I was very bloated before and after surgery and was on lasiks for two months total.

Blessings

Patricia De Leon.

Hi Joan

I did not get any transfusion though it was close when my hemoglobin got really low.

The tube was a non issue for me. You are still drugged up from the surgery but when you start to wake up they will take it out. All I remember was nurses yelling to give me a big cough and they pulled out. Didn't hurt at all.

Yes I gained water weight. They actually had to give me lasix to help me get rid of it. Only one dose and 4 hrs was all it took.

I did not have to get dental clearance.

These are all great questions. I am glad you are getting so many different response.

Best news is youn will be fixed and you will be fine.

Jimmy Johnson

Hi Joan,
With regard to your questions,
I did not have a blood transfusion. The breathing tube was a non-issue. I don't remember it. I do remember my daughter saying "Breathe" and taking a deep breath. then I remember the nurse saying we are taking it out. It was like a far away dream sequence and not unpleasant. I weighed just a few pounds more, like 3 or 4 when I got home, but lost it right away. I did not need dental clearance before surgery. I hope I answered some of your questions. I also responded to you on my guestbook.
Jane

Hi Joan
Here's my experience with your questions.
1. Yes, I did have one transfusion on day 4 post-op as I was somewhat anemic.
2. Generally, they want you alert to be able to breathe on your own before they remove the tube. I had been told before surgery to just try to relax and not try to pull it out. It didn't bother me that much and was writing notes to my family before they came to remove it. Just try to stay calm.
3. Yes, you will weigh more after surgery. I believe it's because they pump you full of extra fluid for the by-pass machine. I didn't lose all of it (about 10#) before I went home so was glad I came with a pair of elastic waist pants.
4. The Cleveland Clinic requires a dental clearance before OHS. bacteria in your mouth from dental problems can travel into your blood stream and to your heart!

Hope I've helped.
Fran

Hi Joan
Looks like you've made up your mind about NY Pres. for your surgery. Do you have a surgery date yet? You've made the best decision for you and you will do well. Good luck.
Fran

Hi Joan, so glad you liked Dr. Stewart and feel comfortable with him. That is just awesome!!!

If you decide to skip CC and want a secod opinion, I also highly recommend my surgeon, Dr. Len Girardi and NYP Cornell (68th and York). I could have flipped a coin and gone with either of the two. I ended up with Girardi because my cardiologist did not have privileges at NYP Columbia (Stewart's hospital) and I wanted him involved.

My cardiologist gave me the best advice during this process. He said do whatever you need to get comfortable with this surgery. So, go with your gut. NYP is a top facility, both the doctors I mentioned do 10 - 15 of these surgeries a week. If you are not feeling good about CC, then skip it! And if you come to NYC, I will definitely come see you in the hospital.

Good luck.
-Mitch Friedman

Joan. I'm traviling a lot but would be happy to talk with u
It's worth the time
Email me your info at my personal email & I'll call

Nancy@telephoneooctor.com

I had fill zipper - uneventful recovery - and back at work 8 -9 weeks later St Lou's mo hospital w/ dr who wrote the book on valve surgery. & while I think he's great - as I say you re blessed with great doctors 15 min away.

I run a customer service trainng comany so I hear exactly what youre saying. !

Anyway. I had aortic valve problem & then day before cath they found one blocked artery. All is good. Like it never happened I wish that or you

Thx. Nancy. Avr. 2-9-2012. St Louis

I happen to agree with you Joan

CCF is certainly good. But there are hundreds of other great doctors and hospitals. Especially in your area

I sent my info to dr g office and while I got a fast response. I showed the letter to my dr who wasn't Impressed with it Plus why go to so much extra travel' time and expense when It can be done superbly locally

It's such a personal decision. You'll make the right one I'm sure. Good luck. Nancy. Avr 2/9/12

Joan,

I'm glad things went well with Dr. Stewart. He has an excellent reputation.

It's funny how different people view things. I've had 2 caths - one cardio, one of my brain. Both were through my groin and neither was painful in the least. The idea of going through my wrist makes me queasy - much more sensitive area as far as I'm concerned. In any event, a cath is painless and, in my opinion, interesting. I loved watching them thread the catheter through my veins on the screen. Very cool!

Glad things are progressing for you.
Ricki Shine

Joan
Hope you had a chance to read Adam's new entry about the Cleveland Clinic that was posted today. As for Dr. Gillinov's personality the first thought that comes to mind is his humility. He is pleasant, soft spoken and caring. He just turned 50 (I follow him on FaceBook), but he looks younger. I had all my testing done at the Clinic before meeting Dr. G. When we met him I knew I had chosen the right hospital and surgeon. Hope I've helped. Maybe we can connect when you're at Marco?
Fran
Fran

Hi Joan
Haven't looked at the journals for months, but did so today. Dr. Gillinov did my surgery 2 years ago. He did a mitral valve replacement, a tricuspid repair and a Maze procedure. I live in SW FL and we flew to CC for my surgery on the recommendation of my local cardiologist. Just wanted to correct one thing you wrote. I was only told to stay one night locally before flying home, not 5 days. In the end, you need to make the decision you are most comfortable with. If you go to the CC, I'll be happy to answer any questions you may have. Good luck.

Fran

Joan, glad to hear you are getting closer to finding the right doctor for you, this really is a process that we all are going through but we're going to get there and get through this!! Best of luck as you get closer to making your decision and then setting your date......

Cindy Pastrano

Hi Joan -

Not sure if you have been to NYC yet or not. Just wanted to wish you good luck on your trip, I know you don't love "the City" (understatement, right????). I hope you find or found a great surgeon and get or got lots of answers.

The cath sounds way worse than it actually is. I was really nervous about it, but folks here helped me get calm. For me, and most others, I did not even recall the breathing tube. Good luck and let me know if I can be helpful in any way.

-Mitch Friedman

Joan,

I just read your post about CCF, and I think I can shed a little light on some of your concerns. The fact that you were scheduled three months out means you are not considered a critical case ( in their opinion). I was assured that if I needed surgery immediately, they would schedule it immediately. I understand your disappointment in not talking with doctor Gillinov also. I had a thousand questions and was told I could ask them the day before my surgery. They said he wouldn't be able to answer my questions until all my pre-op testing was done. While that was unnerving, it made sense to me. I think if you called Dr. Gillinov's office and asked to speak to a nurse, they would be more than happy to answer whatever questions they are able to. The scheduling department is totally different than the surgeon's office, so don't call scheduling. If you choose Dr. Gillinov, I will be SHOCKED if you don't just love him. He is a genuinely kind and humble human being. You have to go where your gut tells you though......make sure you are comfortable with your choice.
As for your pre-op testing, I think you will find the same tests no matter where you end up going. It all takes a big chunk of time, and you just have to accept that. The tests are for your safety, and if they reveal any problems, you have to realize that your surgery may be canceled or postponed. After surgery, CCF recommends you stay for a few days to a week before going home, but they also give you the option to "sign off" on your post surgery appointment with Dr. Gillinov. I went home the day after I was released, and I did not have a problem. You might just wait and see how you are doing though.

As for the heart cath....don't worry about it. It only takes about half an hour and you will be sedated. It was a piece of cake. The breathing tube is not pleasant to wake up to, but I comes out quickly and was not nearly as bad as I thought it would be.

Hope this helps a little. I know everyone says it, but waiting truly is the hardest part!
God bless,
Deb Z