New in ChicagoLand Surgery 10/22

[dpalz]

Hi,

I want to first start by thanking everyone who participates in this community. When I first got the surprise news only a few weeks ago, I nearly lost my mind (what little i have). This community provided relief as I hovered over the various posts, learning and relating with so many people. My selfish "Why Me!?" was quickly thrown back in my face. I have a wife and 2 daughters (7&12) who think I am brave, but the truth is; I am terrified! This will be my 1st surgery and the thought of being put to sleep and on a heart and lung machine really makes me panic. This whole situation has come right out of nowhere. I have always been very active with home improvement projects, work and exercise. We had a hot summer, and I thought my fatigue and heart palpitations were due to heat and stress (work related). Now I'm feeling more run down everyday. I do get a little hopeful in thinking these symptoms may subside after recovery, but I don't know if they will. A lesson I am likely long overdue is the fact that I have always avoided asking for help. I enjoy helping others, but when it comes to myself, I feel shame and weak resulting in me always refusing help. I believe I will have to change. On that note, I would appreciate a response from anyone who can address any of the following questions:

Does anyone have any experience or knowledge in Loyola Hospital (Maywood, IL) Cardiac Unit? Hopefully they are positive.


Can anyone provide reference to current valve studies (tissue vs mechanical) for people under 50yrs age? I see many personal experiences, but I am looking for large sample statistics with pros/cons for each valve. I am hoping to try and make a side by side comparison list to reach a definite conclusion for myself.

Do you have any suggested reading to prepare for OHS / AAA & BAV replacement? I have only a few weeks before my surgery, so I'm hoping to get one read to help with this fear of the unknown.

Should I bother buying green bananas? - sorry, my sick attempt to ease tension. I am so afraid to leave my family, I have to get through this.

I appreciate you reading this and any response you can make. I have my pre-surgery testing Tuesday (10/9) and I am going to ask if they have a support group for people who have had this surgery. I would like to talk with someone who has walked this path so I don't feel so alone.

Thank you for taking the time to read this post. I hope everyone is well.

Dion

 

[escargome]

Hi Dion,
Although I am in California and don't have info to provide for your questions, I can say that you are not alone in feeling like a bolt of lightening struck you on the head. American Heart Association is good for support and they have many locations through out the USA.
As to tissue vs mechanical, you will hear from many in support of both, and it truly is a personal choice dependent on your life and what you are willing to do in support of your new heart valve. I can say that mechanical requires anti-coagulants, but many members of this site have not had problems adjusting to their daily meds. As to tissue (which I chose) generally does not require anti-coagulants however, there are cases where Afib enters the picture and anti-coagulants may still be required. I believe that there are stickys on this web site with a lot of good information, so do as much research as possible and follow your gut.
You will get through this and why not buy some green bananas? You will be around to enjoy them when they have become ripe.
Good Luck to you and keep us posted as you travel this journey to a mended heart.

 

[RTZdad]

Hi Dion,
I'm 38 and I had surgery on April 4th at the Cleveland Clinic. Everything is going to be ok! I can assure you that you will look back upon the experience and realize that it wasn't as bad as you thought it would be. I read Adam Pick's book prior to surgery and found that it helped. Participating on this forum really helped to. I was also very lucky to have gotten a chance to speak with Lionheart a few times before the big day. It was a real blessing to speak to someone who has gone through the process. Feel free to send me an email @ [email protected] and I would be more than happy to speak with you via email or on the phone if you want. I chose a mechanical valve, based mostly on my age and my preference to avoid a future surgery replacing a tissue one. I look forward to speaking with you before your surgery. We'll all be here with you all the way through to your recovery. We've got your back!

Tom

 

[jenebug]

Oh man, I can so relate to your anxiety. Today makes 4 weeks and 2 days since I had open heart surgery due to aortic stenosis. I had known for years that I had a problem, and after my latest echo, the cardiologist told me it was now time to "get me fixed", while I was in good health otherwise.
I was 65 in Feb, and the surgeon initially recommended a tissue valve. I did research for weeks and had many discussions with my kids. Hubby would offer no advice (lol). Originally I had decided on a tissue valve, but decided to go with mechanical, simply because I do not want to go through this again. I had almost a month between finding out I needed it and the actual surgery itself - too much time to worry.
The procedure went fine. I am now trying to get coumadin adjusted. Even with tissue valve, I'd still probably be taking an aspirin a day, so why not a coumadin instead? As for the dietary changes, I will be willing to adapt to anything to avoid another surgery. I figured, at 65, if the tissue failed in 10-15 years, Lord only knows what other health concerns I might have by then.
You will make the best choice for you and be happy with it- most are. God bless and try not to worry. The recover is no walk in the park, but the surgery will fly by. Let us know how things go for you.

 

[Rachel]

Hi Dion,

News of my bicuspid aortic valve and ascending aortic aneurysm (also of 5.2cm) came out of the blue for me as well! I was 45 when I found out and 3 months later, I was having my very first surgery also!

I'm sorry that I don't have any specific knowledge of Loyola Hospital (Maywood, IL). I can say that you sound like you will approach your valve choice very intelligently and thoughtfully, based on what you've already mentioned here. In my opinion, that's the best you can do. Not to make light of anything, but I think a big part of this process is buying those green bananas and having faith that you'll be around long after they have gone bad.

The hardest part for me through the whole process was not the surgery or the recovery, it was leaving my family right before I went under because I knew they would worry so much about me.

Having said all that, I think it's a great idea to talk to others who have gone through this surgery, I think you'll find that the success rate is very high.

Try to keep your focus on your recovery after the surgery, that's what helped me through. I think staying as positive as possible is a pretty good idea.

I'll be thinking of you,
Rachel

 

[CarolM]

Hi Dion,

I can relate to the broadsided-by-a-bus feeling. In August, my GP thought my heart murmur sounded "busy", so I went for an echo which revealed critical aortic valve stenosis.
At 57, I thought the out of breath moments, feeling the heat, etc. were simply age related issues. Never in my wildest imagination did I expect this diagnosis. September consultation with a cardiac surgeon, and here I am waiting for surgery on Oct.11th. Sooooo....I can sympathize/empathize with your feelings.

This site has been a godsend. Only those that walked down this road can understand.

Good luck with your decision-making. As most everyone here says, the only wrong decision is no surgery at all.

Best of luck!

Carol

 

[SusQ]

Add us to the list of those surprised by a diagnosis. Found out last August that hubby had a bicuspid aortic valve with some pretty advanced regurgitation issues and aortic dilation. He had surgery in May.

I want to reassure you that you will eventually notice a difference in how you have felt this past summer to how you feel after the surgery. It will take some time, but there will one day be a point where you notice that you are "on the mend" or better than before. My husband lived 47 years in the dark, just mildly and progressively compensating for what he called his "lack of air". He's a butcher by trade (true butcher...the kind that also "does in" the animals) and he's almost completely back to full duties and doing amazingly well, even for all his set backs. He's even back to working some with the live animals, which is where he really noticed how winded he got (moving them from trailer to holding pens, etc). He doesn't do it as much, as we've been told he really should never do the extreme lifting he did prior, but he has had to move them some and the difference is night and day.

No scientific data here, but hubby chose a tissue valve even knowing that he's going to require at least one more surgery dealing with this in his lifetime.

Did you see anyone here discuss the book "Coping with Heart Surgery and Bypassing Depression"? It's a great book. I ordered a used copy off Amazon for just a few dollars and it helped answer a lot of questions I had (I was the one panicking in our family) and put my mind at ease, well, as much as possible. I highly recommend it.

Keep your sense of humor through the process even if the nurses look at you funny. Sometimes a laugh is just what you need.

Good luck!

 

[Mom2izzy]

This forum was the best reading I found. Buy those green bananas, and try not to worry too much...easier said than done, I know...but the stress is not good for you (and won't help the doctor who are going to fix you all up.). Those doctors are pretty darn amazing. To them, these surgeries are routine. People much less healthy than us go through this every day. I went through it once and although I really don't WANT to do it again...I could...and that's a huge deal coming from me because anything stronger than Tylenol made me sick making pain control almost non-existent. Some of the other medicine I was getting was also making me very dizzy, so that didn't help either. In the Grand scheme of things, it wasn't as bad as I expected and it was over and in the past before I knew it. Now there are days I don't even think about it. As my surgeon would say, "it's on my mind about as often as I think about my left ear." I had a repair, so I can't help much in the tissue vs. mechanical debate. I had chosen tissue as a back up plan because I knew I would not be good at taking Warfarin every day and also because I don't have a very regular diet, so that's what was right for me...you have to figure out what's right for you. Take solace in the fact that either would be fine from a health stand point.

 

[Mike1952]

Hi Dion,

I found at in June that I had a severely leaking aortic valve. I had been exercising in the gym and running for almost twenty years so I was shocked! I had the surgery in August, 1 day shy of two months after learning of the problem. The days leading up to the surgery were definitely the most stressful. I am now 2 months post operative and for the most part, it has been easier than I expected. Just in the last week, I started feeling so good that I think I have over done it with exercise and have some aches and pains I am concerned about. So, my journey to recovery is definitely not over yet!
I am 60, so decided on a tissue valve. The surgery and days in the hospital were a blur, but not that difficult (luckily). The pain was not severe. Pain meds were available to make that manageable. After I got home, I began walking three times a day for just 5 minutes at the beginning and added to it every day.
I was lucky to have a wife who was very supportive.
It is a humbling experience which makes you aware of how fragile health is but it is a fairly common surgery in many hospitals in the US. We are so lucky to be living in this age of modern medicine!
This site was very helpful and comforting as most people really don't understand what you are going through. I also emailed friends and family and kept them in the loop. After the surgery, it was very nice to hear from many of them. I needed the human contact!
I think you will do fine, just feel free to ask what ever is on your mind and there are a lot of people on this site who will offer good advice and encouragement. We've all been there! Best of luck!

 

[Matt C]

Dion I am in Chicago also Dr.Pappas at Christ in Oak Lawn is also an excellent surgeon. As far as valves go you will read a lot it is a matter of your choice as Jenebug I was going with a tissue valve up until 30 minutes prior to the surgery another surgeon working on the team had one of the those talks with me and I went with a St.Jude valve. Comadin manaement is not a big deal I like to work out and have no restrictions on that however only thing I have not got use to is the noise maybe I will one day I am one year post op this month. Having anxietey is normal ask for something now if it needed and prior to the surgery it helped me but as far as operation goes Your in and out. Recovery for me at least was worse then I thought it would be.

1. Keep a pillow with you for when you sneeze during recovery was vital to me at least.
2. You may get deppresed the first month after your operation this will pass.
3. Take things slow afterward.

Loyola is an excellent hospital also best of luck!

 

[Fundy]

The sticky post in valve selection forum lists and discusses most of what you would want for making your own list of side by side comparisons.
http://www.valvereplacement.org/for...-Famous-Tobagotwo-Writings-On-Valve-Selection

Actually any thread in the forum topics marked sticky is well worth reading before surgery.

 

[dwhist]

Another Chicagoland customer here. I had mine done 1 year ago at Elmhurst Hospital by Dr Davalle.

Buy the green bananas. If you get too stessed out as the surgery approaches, ask your docotor for a few xanax.

Also, look around the forum for things to have ready at your house when you get home from surgery. Some use recliner. In my case I had recliner, but found no problem in my own bed. My wife had gotten extra pillows while I was in hospital.

I found it best not to focus on the surgery, but on my return home. I took a walk around the block when I got out of car coming home from hospital before going in the house and it felt great. After the surgery, every hour, every day it gets better.

 

[SCCWS]

I had my AVR done on 9/5 at age 63. Yesterday marked a calendar month and I think I am well on my way back to normal. I was lucky in that I felt perfectly healthy, exercising daily, but the echo showed my valve needed replacement. The Surgeon suggested I would see the symtoms by next spring and would need surgery no later than next summer. So I suggested he do it now while I felt so good rather than wait. Since I knew my wife would be very worried about the surgery, I decided to try and always stay positive and joke about it. I think reading this site, everyone's surgery and recovery are different. I never really needed any of the pain meds offered after surgery since I really had no pain. They gave me a minimal dose of morphine the first day just to be sure the pain didn't creep up on me. That was the only dose i had. I had never been in a hospital overnight, so there was that anxiety. I felt I was in a resort. The nursing car was beyond expectations. Again, I was lucky in that i had no pain which I am sure was a big part. But it seemed like everyone I encountered was "customer service" driven in a medical way. I went to Rhode island Hospital. My recovery at home had it's bumps mainly from a constant problem for about 3 weeks w coughing. I was not prepared for how bad the coughing was. In fact my doctor actually told me to fill the pain med script I got at the hospital because it would help relieve the coughing and help me sleep. I chose a tissue valve and have battled A-Fib but my surgeon said a high % of heart patients get A-fib.

So I found the surgery and hospital stay pretty easy but the coughing has made recovery at home very difficult. Again, everyone is different. One important warning. Reading this site, I warned my wife that I would look pretty rough the first time she saw me. Despite the warning, she said she was stunned how bad I looked that night when she first saw me after surgery. But then when she came back the next afternoon, I was sitting up in a chair. She said it was an amazing change.

 

[dpalz]

My heart feels like it is in my throat and for once I'm not sure it is the symptoms or response to the overwhelming kindness and reassurance from each and everyone of you. Every one of your responses sure made me feel better (so much so that I keep re-reading them) and I cannot help but feel happily committed to play this forward as I get through this. I would be honored and grateful to help in anyway. While I am still not looking forward to 10/22 (who would?), I am feeling better and I certainly look forward to getting to know everyone here. Thank You very much. I wish you all best in your recoveries and new life.

PS - It's kinda funny how a few weeks ago, people would tell me how lucky I am (catching this before a major event and in a time when repair is even possible). I couldn't grasp what they meant, because I would think to myself "yeah, how would you like some of this "luck"?". Well, I am starting to see I am lucky to be possibly given a 2nd chance, and I am certainly lucky this website is here with people like you on it. Thank You again.

 

[Greg~]

Dion,
Welcome to the family. And I know exactly how you're feeling. I know it's tough to ask for help because as guys we're supposed to be strong and have all of the answers. But asking for help is not a sign of weakness, it's a sign of maturity. Honestly, I don't know how I could have done this alone.
Sorry, I can't comment on the hospital since I live in California. Have you spoken with your cardio and primary doctor about the facility? I did a random Google search and the hospital looks pretty nice.
I too struggled with the decision of valve selection, but my decision was on which manufacturer to chose not mechanical vs. tissue. According to my surgeon, the mechanical valves offered today are very similar in their performance and life expectancy. He told me he would use any valve I chose because he had experience with all of them - Carbomedics, On-X, St. Judes, etc. I was amazed at the fact that he left the decision completely up to me. Of course, you can find all of the technical data for each valve by visiting the manufacturers web site. But it's going to be from their point of view - if you know what I mean. I'm sure there are independent studies of valves out there, but I haven't found them. I would recommend speaking with your surgeon and cardiologist about the valves once you make up your mind on mechanical vs. tissue. It's a tough decision and it's purely personal. Unfortunately you don't have a lot of time to do an exhaustive study. I had two weeks to makeup my mind and fortunately I knew exactly what I was going to do once my cardio told me I needed my BAV replaced.
When I found out I needed OHS, I scoured the internet in search of information and answers. Be careful what you look at, especially since this is your first surgery. I wouldn't recommend going to YouTube and watching the videos that walk you through an actual heart surgery. My biggest challenge was dealing with "Theater Of The Mind". For day's all I could think about was the what if's. I'm the kind of person that needs to know exactly how this goes, what are the step-by-step procedures, who's doing it, what are my chances, could something go wrong, and if it does what will happen, blah, blah, blah.
I stopped the head games by realizing:
1. There wasn't anything I could do to change the situation. I'm going to have the surgery and that's that.
2. The surgeons, anesthesiologists, and nurses who performed my surgery (and yours) are all highly trained experts and they alone perform this surgery multiple times per week!
3. OHS and AVR surgery is performed SUCCESSFULLY thousands of times per year.
4. I have a wonderful family and strong faith in God and they'll be right by my side through it all

I know you'll do fine, and once you make it into recovery you'll realize that all of the anxiety was for not. Please send me a private message through this site or email me at [email protected] if you'd like to speak privately about AVR experience.

 

[epstns]

Hi, Dion,

I'm sorry it has taken me so long to join in, but I was away from the boards for a few days. I, too, am in the Chicago area. Although I had my valve replaced at Northwestern Memorial, downtown, Loyola was my (and my cardio's) second choice of all the area hospitals. This was partly because it is a good hospital, and partly because my cardio was taught/trained by a couple of the cardiac surgeons at Loyola. I actually met with one of the Loyola surgeons, and was quite impressed with both the doctor and the hospital. The surgeon I met with was Dr. Jeffrey Schwartz. I was also referred to Dr. Bakhos, but never met with him.

I can't help much on the mechanical vs. tissue choice at your age, as I was 63 when my valve was replaced. I chose tissue, but when I was youger and still waiting, my cardio and I often discussed valve choice. While I was still in my 50's, the advice was always for a mechanical valve. They started stressing the viability of tissue valves as I hit my late 50's, and by the time I passed 60, I was certain that tissue would be my choice. This is always an intensely personal choice, and as somebody has probably already said, there is no wrong or bad choice. Both types of valves have their good and "less good" points, but the only really bad choice is to choose not to replace a failing valve.

If you want to discuss heart surgery in Chicago in more detail, feel free to PM me, or email me via the utility on this site.