Ellen's Heart Valve Journal

Ellen,
this is just a stab, but my son experienced something like this and it turned out to be gouty arthritis. I know this can often accompay use of diuretics. When I was on Lasix before my surgery, I had a high uric acid and the doctor asked if I had had attacks of gout. I did not. I was taken off Lasix after surgery (four months ago) so it will be interesting to see if the uric acid level went down.
I hope you have a short recovery and are soon back to your active life.
Mary Ann Marko

Hello, Ellen, thanks for the compliment, but I don't feel like the bionic man; this experience has really brought humility into my life, which i believe is good. I do know it's important to get moving and like you wrote, really follow the recovery protocols. Thanks for sharing your experience with everyone in our community. I wish you a God speed recovery.

Daniel

Hi Ellen I see all have given you encouragement on the HR, Ditto, 8 wks still 90-100 suprising the 1st 2 days in rehab HR only increased to 120 highest. That is so true about reading took me weeks, TV, still I get sooo tired yesterday after 2nd day rehab 2/1/2 hr nap, out cold, but better today. Listen to your body, don't get discouraged we all know what it feels like.
Hang in there
Susan V

Dear Ellen, I'm so sorry you had to go through this surgery at such a young age. However, my 19 year old son had the same surgery just 3 months ago. I was TERRIFIED for him and it seemed so unfair and I wished it was me. In answer to one of your questions, will I be afraid to do all the things I did prior to surgery; I can tell you that my son, Danny, is back to playing 4 to 5 hours of basketball (high intensity) DAILY. He is ONLY 3 months post op (and has been doing so for nearly a month and a half). Additionally, he does push ups and sit ups and is VERY active. He was only in the hospital 3 days after his surgery. You are so young, too, and I'm SURE that is in your favor. Danny had bad pain in his shoulders shortly after his surgery, too. This seemed to be alleviated fairly quick. I will pray for you and your QUICK recovery. I am sure that you will do fine. I think it is the NOT knowing truly what to expect that makes you anxious. I was a basket case worrying about my son. I hope you have good support people to help you during this early stage of your recovery. I can't wait to read about your continued SPEEDY recovery. Sincerely Mary James

Hi Ellen,

My Heart Rate was in the high 90s and 80s for the first 6 or 7 months following surgery, so try not to worry too much about it.

It's only been in the 8th month that it has dropped down to the mid 70's.

I have been active in cardiac rehab, but my HR only just started to decline.

I'm sure you'll be fine...just be patient.

xoxo
Lori

Hi Ellen. My heart rate is still high nearly 10 weeks after surgery - consistently over 100. So, I'm still on the beta blocker & probably will be for some time. I'm taking Metoprolol. My understanding is pretty much what your doctor said - it's not uncommon after valve replacement surgery & should settle down when it's good & ready.

I also had difficulty with reading in the early days after surgery. I just couldn't keep my mind on it. Too bad because I had a bunch of books I figured on reading while I recuperated. Netflix vs what TV has to offer is a good idea. Same tube but at least you have some control over what's there to watch.

The only advice I have regarding the boredom is that you should know that you will be feeling better & able to do more as time goes by. Sandy who has a journal here too described it as "putting in time". He was 100% right - there's just a period when you can't do much, but it will pass.

Hang in there & keep getting better - Joy Vera

Hi Ellen glad to hear you're back home. Just about everyone I know who's had heart surgery has some form of back/shoulder pain

The only thing that I found to ease the pain was TIME, and exercising/stretching at Cardiac Rehab.

If you had a sternotomy like I did, I was explained that it puts pressure on your spine when they spread your chest. Plus if you've seen videos, they don't exactly do it very gently!

Good Luck,
Kyle in Montana - 4 months post surgery!

Hey Ellen glad to hear you are home, so glad you came though this. I to had BAD back pain. Honestly worse then the chest pain. I used a muscle rub and got one of those homemedics back massagers. Honestly besides a muscle relaxer and pain meds it just takes about 10-14 days before it eased off. Also walking helped to loosen up the knots. Hope it helps.

Jerry H

Hi Ellen
Glad you are home. Most likely back and shoulder pain from the anesthesia, heating pad and pain Rx is about all that you can do until your body works it out. Try not to let your mind overrule your body as in doing too much activity. All too often we find that "I can do that" and boom we're exhausted. I found yesterday even after 8 wks and my 1st rehab session, that group exercise, warm up, treadmill, bike and aeroboike that I was fine. Awakened 5 am today hardly able to move and really sore but as the day progressed it improved. It seems that every few days I have a day where I am exhausted and can't do anything I want to. Let everyone that is near you help you until you know you are able to do the activity without any ramifications. I know I am a whole lot older than you but when I was your age and had my first surgery 2 days after being home I thought I could wash the bathroom floor on my hands and knees since I couldn't push a mop, I was in bed for 3 days afterward my chest was really hurting.
Take Care
Susan V

Hi Ellen

Isn't it a great feeling to be out of the hospital!!

Glad to hear all went well for you. Continued good luck as you are on your path to full recovery. Each day, and especially each week will get better for you. Keep up your walking.

Mark
Keller, TX

Hi Ellen
You'll just have to learn what all of us have learned, that is to pace yourself. Do a little, rest a little, etc. I never did push myself too far but those who have, ended up paying for it with increased pain and fatigue. Is there anyone home with you?
Fran

Hi Ellen,

So happy to hear you are doing well!! The fact that you are on this side of surgery is awesome news and I wish you a comfortable recovery. My mitral valve was replaced in January and although I didn't have any complications following surgery, my chest still hurts from time to time.

The first thing I did wrong 4 weeks post op was I took a bath and used both arms to lower myself into the tub, and POW something felt wrong with my sternum. Please don't make the same mistake I did, because until then my sternum felt fine and immediately it got worse. I think the most pain I experienced in my chest was the breast tissue from 1) spreading me wide open and 2) the drainage tubes that were shoved up in either breast. I still experience 'breast' pain even after 8 mos.

Pay attention to the lifting too, don't lift more than the 8 lbs fpr 8 weeks or so.

I also noticed a funny feeling for the first few months when I would bend over to scoop up kitty litter, etc. It felt
like my heart was working overtime and sometimes I felt a little dizzy when standing up from a squatting position.

I also slept on my back for the first 4 or 5 months because it felt safer.

Hopefully none of this scares you...I just wanted to share the experiences I had. Everyone is different and I hope you have an uneventful recovery.

We are here for you!!

ps. you can fine me on facebook at facebook/lorisobrero

Heart hugs!
Lori

Glad to know your feeling well.. I wish your full recovery.. Take good care...
andro d.

Hi Ellen
I was happy to hear you are hanging in there. If you have never been hospitalized let alone open heart surgery that was alot for you to handle, especially the pain etc the first few days. Know you have lots of HVJ friends out here thinking of you.
Susan V

Ellen,
Glad to hear everything went well...can not wait to hear you are home and on the road to recovery.
Theresa C.

Hi Ellen
Thanks for the update and letting us know all went well. Too bad about the first few days. They usually give you enough pain meds so that's not a problem. Continue to heal so you can be discharged.
Fran

Hi Ellen,

I'm glad to hear all went well. Wishing you a speedy and uncomplicated recovery as well!

Kellie

Hi Ellen
Hope your surgery went well and you or someone will be able to post soon and let us know. Just do what the medical staff tells you to do and you'll be fine. They've done this hundreds of times.
Fran

Hi Ellen. Here's my list of what I took.

Paperwork – anything regarding insurance, medications etc.

Robe

A pad of paper & a pen

Pajamas – I purchased some that button up the front for use at home, but in the hospital, I used just the bottoms with the hospital gown on top

Socks – didn’t use these because the hospital furnished socks with no slip bottoms

Toothpaste & toothbrush

Hair brush & comb

Shampoo – turned out I did not need as the hospital furnished

Reading material

I-pod with headphones (used for relaxation tapes)

For the trip home – underwear, button up shirt, stretch pants, shoes

Take care, Joy Vera

Hi Ellen
Sorry, I have a habit of not signing my name when i send messages. the last one you got was from me. Dawna..

Hi Ellen
I no how you feel. I have the same problem. My surgery is booked for Sept. 24th. and Yes i am scared. And it is normal for us to be scared. I too think. i am too young. 48. i am scared of making the wrong decision on what valve to get. i sadi mechanical but having second thoughts.i am not bringing that much to the hospital. i am not having a private room, so threat is an issue. i really hate to say that.

Hi Ellen
Looks like others have covered most everythin. It does not matter how bad I feel I am one to wear jewelry and makeup. Own toothbrush, lotion, deodrant etc etc. So after I was discharged from ICU after 4 days, and in my own private room I did put on my make up and although hair is not an issue for me I purchased a great can of dry shampoo which was wonderful, only because I was not allowed to shower until the 8th day, due to my heart rate being so low. I wore mens small boxer shorts due to abdominal water weight, brought 4 pr. Really can't get away with hosp gown due to monitor. Purchased button down pj's for home with tie waists. Overstock has some cute ones that were great, inexpensive. I wore pull up Nike pants and a button down shirt for home and a tank top underneath. I did purchased from Adam's book the incision protector, did not need it. I do wear a sports bra when I am out of the house, but I cannot wear any other one comfortably due to my L arm and L rib pain, burt last surgery bra was not a problem. As Rikki indicated heart pillow for coughing etc was provided. I did bring my own bed pillow. I knew I would not be able to concentrate I did not bring any reading material, but stocked up @ home prior to surgery with great books, crossword puzzles etc. We did bring our favorite movies as I had a room that had 2 DVD players. My CD player with a variety of music helped block nose etc,out and when I was having any pain helped alot. Although I am now 6 wk post op I am still in sleeping in a hosp bed. @ home. I learned that from my last 2 surgeries as we do not have a recliner @ home. Simple things like having my husband fill Rx in hosp so we did not have to have anyone pickup or stay with me when we arrived home really helped. Keep us posted and if you have any other questions, you can see how helpful everyone is.
Susan V

Hi Ellen
I will only add what the others may not have taken. I am not matter how bad I feel one to wear jewelry and makeup. Own toothbrush, lotion, deodrant etc etc. So after I was discharged from ICU after 4 days, and in my own private room I did put on my make up and although hair is not an issue for me I purchased a great can of dry shampoo which was wonderful, only because I was not allowed to shower until the 8th day, due to my heart rate being so low. I wore mens small boxer shorts due to abdominal water weight, brought 4 pr. Really can't get away with hosp gown due to monitor. Purchased button down pj's for home with tie waists. Overstock has some cute ones that were great, inexpensive. I wore pull up Nike pants and a button down shirt for home and a tank top underneath. I did purchased from Adam's book the incision protector, did not need it. I do wear a sports bra when I am out of the house, but I cannot wear any other one comfortably due to my L arm and L rib pain, burt last surgery bra was not a problem. As Rikki indicated heart pillow for coughing etc was provided. I did bring my own bed pillow. I knew I would not be able to concentrate I did not bring any reading material, but stocked up @ home prior to surgery with great books, crossword puzzles etc. We did bring our favorite movies as I had a room that had 2 DVD players. My CD player with a variety of music helped block nose etc,out and when I was having any pain helped alot. Although I am now 6 wk post op I am still in sleeping in a hosp bed. @ home. I learned that from my last 2 surgeries as we do not have a recliner @ home. Simple things like having my husband fill Rx in hosp so we did not have to have anyone pickup or stay with me when we arrived home really helped. Keep us posted and if you have any other questions, you can see how helpful everyone is.
Susan V

Hi Ellen,

I had my surgery this May and I would say don't bring much. I packed a bag full of stuff and didn't use most of it. Things I did use: toothbrush, toothpaste, facial soap, moisturizer, brush/comb. Bring shampoo.

I brought pjs but never wore them . . . I was on heavy doses of lasix and pj bottoms would have been a pain. And the tops would have gotten in the way of the wireless EKG pack. I wore 2 hospital gowns - one with the back open and on top of that one turned backward so the opening was in the front (like a bathrobe). It worked very well. I did wear slippers (make sure they have non-skid bottoms) starting 4 days after surgery (before that I wore the non-skid socks the hospital supplied.)

Bring something to wear home. It can be clean pjs if you live in the area and are driving home. I flew home so I brought elastic waist pants (be prepared to gain lots of water weight after surgery) and a large button-front shirt. I did not wear a bra for several weeks after surgery. The hospital did give me a surgical bra (it had velcro closures) but it was very uncomfortable for me so I threw it out as soon as I got to my hotel room after they discharged me. Some people have brought sports bras in a size larger than normal.

You probably won't be up for reading or anything that requires mental energy. I watched a lot of tv but some people say they couldn't even concentrate on that. Bring and ipod and/or DVD player if like music or movies. I brought an iPad so I could email, which I did but not a lot. (again, not a lot of energy.)

I brought eye shades (whatever you call them ) to block out light. I never used them. I was at the Cleveland Clinic and even ICU was not bright (which surprised me). Nor was it noisy (again, a surprise.)

I brought wrapped individual Dove chocolates for the nurses. They loved them!

I think that's all I ever used while I was there. The CC supplied a heart pillow, a large water container, and a spirometer. Those were the 3 things I used most!

Good luck with your surgery!
Ricki Shine

Hi Ellen,

What to bring to the hospital...chapstick, ear plugs, eye patch for blocking out light in your room when the nurses come in every 4 hours, mouthwash, baby oil or bio oil to remove the adhesive crop circles from all the heart monitor leads, pj's, slippers, laptop, books, knitting (in case you knit), sanitary pads just so you don't have to use the hospital ones, mine didn't have any adhesive so they never stayed in place.

Good luck to you...I wish you well and a speedy recovery. My email is lori_sobrero@yahoo.com. I had my mitral valve replaced this past January, and very happy to be on this side of surgery.

Hugs,
Lori

hi ellen. this weekend is my 2 year anniv.i enjoyed my labor day weekend 2 years ago as if it were my last one on earth! haha. i actually spent my last day at the beach and just vegged ! it was the best relaxation technique.i honestly didnt read adams book until i was post-op. i didnt want to know really.for me its better that way. anyways youll be fine,its so routine now. any questions feel free please jeffstoveken@yahoo.com jeff from nj

Hi Ellen
I found that if I took 5-6 of my favorite music tapes a wide variety of what type of mood or uplift I needed @ the time, ie Pearl Harbor, Out of Africa, to country to Stevie Nicks a real variety
Susan V

Hi Ellen, I had my valve replacement when I was 30yrs old, what you feels is the same feeling that I had before. After this problem, now I realize my life will continue.
I just wanted to let you know that there's a new hope after this problem... wishing you the best...andro

Hi Ellen!

First, I'm 40, so not much older than you. I too was scared to death and since I elected to have a bovine valve I know I'm facing this again one day...

I just told someone else that Adam's book was the best pre-surgery investment I made. I learned almost as much from the book itself as I did from all the great members of this site.

I also wanted to let you know that I've read about professional bodybuilders who had valve replacements and are in the same profession afterward. So try not to become discouraged about this. You will have limits for a little while, but not forever.

I was wondering what hospital you decided on? I'll lift you up in prayer for peace of mind.

Kellie

Hi Ellen
Being a 3 X veteran with the first being close to your age I certainly understand your fears. You will be amazed as what inner strenth you have and will be able to draw from. It is very normal to go through the actual stages very much like any grief stage process from denial, fear, bargaining, anger, depression and finally acceptance. Each of us are so different based on our post life experiences. I also dealt with one of my children have his congenital heart defect repaired age 9 6 months after I had my first surgery, you talk about an angry child wanting to balme me for his genes we obviously went to a few counseling sesssions. Please tap into all of your local, family friend resources for support it is amazing how helpful human kindness. I only wish this site was available the last 2 surgeries. If I can be of any assistance to you let me know, you may want to see my story to see where I am coming from.
Take care as we all care about you
Susan V

Hello Ellen
We are all unique indivauls.I am sorry that you have to do this at a young age. I just wanted to tell you that I had to get my valve replaced when I was 37.I took a long time healing and I was afraid to do anything but then one day I got frusterated and mad at myself and I thought if I can't live my life anymore then why am I living at all. Sounds a bit crazy but anyway that was 20yrs ago. I took my life back, bad habbits and all, I ate what I wanted, drank what I wanted, did what I wanted, and I never had a problem. At present I will be going in on Sept 30th to get that valve replaced and I am VERY scared but Hey it gave me 20yrs so I certainly can't complain.I just recently found this website and the people here are the greatest Keep writing and reading and I wish you the best..Pat L

Hi Ellen. If you haven’t yet read Adam’s book, please consider doing that. He was also in his 30’s when he had his surgery. I wish you the best of luck with your surgery & your recovery. Joy Vera

Hi Ellen,
You will only be able to ski if you already are a skier. I was really disapointed that I was not able to play golf like a pro after my surgery, but I never played golf before surgery, so there you go! Just take time out to laugh and you will be fine. Read my blog (william thune) and that will get your laughter going...
happy boating
captain bill

Hi Ellen
Have you on my prayer list for a successful surgery on the 20th. Back in July I mentioned getting some relaxation/guided imagery tapes to listen to and if you haven't done so yet, please get something this week. Listening to them at least once a day will help you so much. If you've been following the journals and reading Adam's blog you will know there have been valve patients still in college and people who have skied, hiked mountains and run marathons after their recoveries. Your heart will be healthy and able to do what you can't do now. Take a deep breath, try to focus on a healthy heart and prey. You'll do fine.
Fran

Hi Ellen.

I did speak to Dr. Yuh from John Hopkins when I was first diagnosed in Feb. '10 and was very impressed with him. I unknowingly sent an email to his que at JH and he called me back the very next day - and he wasn't even in the office that day! I also found out later that he has also been very involved in perfecting the Da Vinci Robot.

However, I had surgery 4 days ago at the Center for Heart & Vascular Health in DE (Christiana Hospital) by Dr. Banbury (I came home yesterday). He was previously a surgeon at CC and was recruited by Christiana in 2004 as chief. I chose Christiana because of Dr. Banbury's having worked at CC for a long time and it was only 25-30 minutes from home as opposed to 1+ hours it would have been from Baltimore.

Please feel free to email directly if you'd like ckchaca@live.com.

Kellie (MD)

Ellen,

When you submitted your records to the CC did you direct them to a specific surgeon? If so pick up the phone and give them a call. When I selected Dr. Gillinov, I had my records sent to his office's attention, then called his scheduling nurse, Cathy, to tell them they were on the way. Waited a week, called back and asked status.

Cathy advised me they had them and were under review, based on their determination of how critical my case was they might call back within a day, or if not critical it might take a week. They called 5 days later and gave me a surgical date that was seven weeks out based on my info.

You have to be your own best advocate, so pick up the phone and inquire.

Good luck..
Mark
Keller, TX

Ellen,

Like you, I had a stenotic bicuspid aortic valve which was replaced at the Cleveland Clinic 9 weeks ago today. I can't say enough wonderful things about my experience there and I urge you not to give up on them. (I'd call them to check on the progress of your review.)

That said, Johns Hopkins is also a superb hospital and I would imagine the care you would receive there would be just as wonderful as the CC. And because it's fairly close to where you live, that's a real advantage. If you are not "married" to the idea of Cleveland, you might want to start the process with JH.

Either way, you'll get great care and will be quickly on the road to recovery.

Please let us know if you have other questions about this surgery.

Ricki Shine

Hi Ellen,

I just looked at the Johns Hopkins website and it is similar to the CC website - brief bios of the doctors. I wouldn't hesitate to pursue the Cleveland Clinic idea BUT, since you are in the area of one of the other top heart hospitals in the country, I think I would try to stay closer to home. I didn't have that luxury here in Colorado and it was difficult to find someone who was doing minimally invasive surgery. Have you checked the list of surgeons elsewhere on Adam's website for ones in your area?

I am sure with a bit of digging around, you will be able to find someone excellent in your neck of the woods. Keep us posted!

Anne

One of my nurses told me that people who go into surgery relaxed seem to have an easier time of it. So work on relaxing and accepting for now. Adam's book helped me so much to accept what was happening.

I still can't believe I had surgery 5 days ago. Will send positive thoughts your way that you follow in my footsteps!

Anne Shannon

Hey Ellen,

As friends in the medical field have told me, you find the guy who has done the MOST of the operation you are considering. Since you have Johns Hopkins in Maryland, I would start my search there. Think they are rated #1 or 2 in the US and better is always best!!!

I just had surgery last Friday (the 16th) and it was pretty much duck soup. I just posted a short history of what I know and what I learned. If you need more info, please post to my journal and we can keep in touch.

Anne Shannon

Hi Ellen,
I'm 32 and I'll be having my bicuspid aortic valve replaced next year and I feel the same way you do. I guess I just find comfort in the fact that almost everyone says it's not as bad as what they thought it would be. I hope that's true for both of US. Good luck, and we do have age on our side which should really help when we are recovering.
Patrick in STL

Hi Ellen
Can't really add much to what, Kyle, Diana and Mark wrote. Will suggest you get hold of some relaxation/visualization tape(s) that you can pop on your IPod or whatever you use. Listening every day will keep your stress level down. At the Cleveland Clinic they even let me go into the operating room listening. I felt such peace and was not anxious when I awakened after surgery. You'll do fine, already at four months post op a lot of it has gone from my memory. Keep in touch. Knowledge is a powerful tool.
Fran

Hi Ellen
My name is Sean and I am getting my aortic valve replace tomorrow. I choose U of P in Philadelphia. The surgery is being done my Dr. Bavaria. He is an awesome doc. Good luck

sean murphy

Hi Ellen,

Welcome to the club! I had my aortic valve replaced with a mechanical valve on May 27. Mark's comment is right on when he said before the surgery is the hard part. But you've come to the right place, read as much as you can, ask questions, there's lots of friendly people here and it's good to know you're not alone.

As far as picking a doctor, I just started asking everyone around me and was surprised at just how many people or their relatives had had heart surgery in one form or another. And for me, one surgeon's name kept popping up over and over again. Also, check out the link at the top of this page for the Heart Valve Surgeon Database.

It's ok and natural to be worried and scared we all went through it but get it all out of your system (or as much as you can) now and then get a positive attitude when you go into surgery and trust that it will work and you will make it through and find that you're tougher than you thought.

Good luck and God bless,

Kyle in Montana

Hi Ellen,
And welcome to HVJ. Believe me, you will feel like this is your second home here with an extended family.
I just had my aorta valve replaced June 2nd, and I have to tell you, it wasn't near as bad as I had imagined. Really! I can't say that I had pain, sure there was discomfort, but nothing that couldn't be dealt with, with pain meds. I can truly understand being terrified. I was there. But, do know that its not that bad. And each day seems to get a little better. All the trouble I had before surgery, is gone. I able to go up and down stairs with ease now. The whole process was a positive experience for me and I'm sure it will be for you, too. If I can be of any help, please feel free to ask away.
As far as picking a surgeon, I was lucky in that one of my friends went through surgery to repair his mitral valve a 1 1/2 ago and he just loved his surgeon, so I decided to go with the same surgeon. And it was a good choice.
Good luck to you, and keep us up to date, k?
Diana

Hi Ellen,

Welcome to HVJ. This is a great community for asking questions, and getting answers you sometimes just don't find in books or medical journals.

Like you I had a bicuspid aortic valve, with stenosis and a dose of regurgitiation. I was born with it, and had known since I was very young that one day it would have to be replaced. Even though I had until I was 49 before it finally was time, it still came as a shock this Jan when my cardiologists said "now."

I had done a lot of research and had for a number of years decided on Cleveland Clinic, as well as going so far as to deciding on my surgean as well. Since I knew I wanted a tissue valave I wanted someone young enough to do the next surgery in 15-20 years.

My surgery was May 5 of this year. While I was in shock when I got the word, by the time the surgery rolled around I was completely calm and confident all would go well. I think a couple of weeks after your surgery you will look back and think, "that was not nearly as bad as I had imagined it."

As you have read, most of us get through this just fine. We all seem to have a little hitch or two we deal with, but in the end we bounce back quickly and are back in the saddle in no time. You will be also.

You are at the hard part now. You are dealing with everything that has to be prepared for. It gets easier. I am sure you have read Adam Pick's book, a great resource. Settle in here, read the journals and ask questions. You will be fine..

Best wishes for you..

Mark
Keller, TX