Any other very high risk aortic valve replacement patients out there?

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Dawn-Marie

Hi-I was wondering if anyone else in my situation has had a successful replacement of their aortic valve. My doctor said i will be very high risk because i've been paralyzed from the upper chest down since 1981. Therefore, i cannot cough at all and will be at risk for both pneumonia and for getting off the ventilator. Also, since i have pressure sore issues, so i cannot lay on my back at all. I have to turn from one side to the other every 2 hours and when i'm up i have to do what is called pressure relief, where i push on my armrests and lift my body up in the air and hold it for 1 minute. I have to do this every 15 minutes. I've read some of your posts and have heard you say that you cannot lay on your side. Is this because of pain, or is it because it will harm you? My doctor does not explain much of anything to me...all he says is that it will be very risky. I'm really scared right now. He thought i'd be a good candidate for the percutaneous aortic valve, but i called nearby Cleveland Clinic, and they told me i wouldn't qualify for their Partner Study since i am only 56...they're currently only doing it on people 70, or older. So, i guess my only option is to go with the aortic valve replacement, no matter how risky it is. I would appreciate it very much if anyone else who's been in my situation could let me know how it went for them. Thank you very much!
 
Hi Dawn-Marie,

Since Cleveland Clinic is nearby I would definitely suggest them. My second open heart surgery was performed there. They are the best of the best. High risk procedures are their business and they perform miracles there every day. You would be in the best of hands.

As for the caution against laying on your side, I think the biggest issue is the pain but damaging the rib cage might be a reason as well. I would ask your surgeon about minimally invasive surgery.

Good luck on your surgery and God bless,
Randy
 
You might want to look into minimally invasive valve surgery which goes through the side and does not need to have sternum involvement. There are some doctors who do aortic valve surgery this way. It used to be for mitral only.

My husband had this done during his 3rd heart valve surgery. The recovery was a little easier, since the sternum is not sawed through, although they do go through the lung.

You could ask about it.
 
Wow, you have a full plate. Did you explain your situation to the Cleveland clinic docs? I'm surprised that they would not at least consider it for you. I think the not laying on the side thing is mostly due to pain. Also, won't the hospital have a bed that can move you side to side, etc. without you having to move? I know my son had a bed like that in ICU and I also saw one that fully rotated. I do not have an answer about the coughing. It sounds like you need to find a doctor that will talk to you more. I think the Cleveland Clinic will do a consultation with you, they should have a better handle on a high risk patient like you.
Good luck and please keep us posted.
 
Welcome, Dawn. I can't add anything more to the above posts, but I wanted to welcome you and urge you to go to the Cleveland Clinic for an assessment. As others have said, you should seek out a hospital that specializes in high risk surgery. Best wishes to you.
 
Welcome Dawn -

One of the issues with sleeping on your side is possible movement of your chest / sternum before it heals.

MANY of our members found sleeping in a recliner (or hospital bed) was more comfortable for the first few weeks following surgery.

There is a Surgeon, Dr. Petracek, at Vanderbilt University in Nashville, TN who specializes in Minimally Invasive Thoracotomy Surgery. He even has a video of his procedure on his website. Google "Dr. Petracek" to find the links. He is a strong supporter of the St. Jude Valves. Some of our members have had surgery performed by Dr. Petracek and are doing fine. (Do a VR.com SEARCH for "Petracek" to find posts by those patients.)

'AL Capshaw'
 
Welcome Dawn,
You certainly are faced with a real tough one.
I might suggest you contact William Beaumont hospital in Royal Oak, Michigan, and ask for Dr. O'neil. He did the first successful percutaneous valve surgery in this country. Just by chance I met the man who had the surgery and was very impressed by his condition. Royal Oak is a northern suburb of Detroit. This is my hospital and they have done hundreds if not thousands more heart surgeries than any hospital in this country, including the Cleveland Clinic. They have an amazing heart center there including a heart center just for women.
Just a thought,
Rich
 
There is a machine called a coughalator. Might not be spelled right but electric,turn on, helps bring up mucus and helps one cough. Quadraplegics use it to prevent pneumonia/bronchitis,expand airways,etc. Ask your doctor for something like that. Turning side to side will be good, massage pressure points to prevent breakdowns,deep breath as best you can alot, and eat very healthy-no processed foods,sugar,or white flour foods.
 
Hi,

I have no advice but do want you to know you are in my prayers. You will get plenty of good advice from the VR members.Keep us updated on your progress.:)
 
Thank you ALL for the warm welcome

Thank you ALL for the warm welcome

Hi Everyone,

Thank you all for the warm welcome to the site and for the advice. I still have to have a TEE on March 27th and then i go back to my heart surgeon in Erie, Pa. to see if i need the surgery. I probably will, since i was in congestive heart failure the beginning of November. My BNP test should have been around 100 and it was over 2,300. Also, the cardiac catheterization showed the aortic stenosis to be at a critical level. He wants to do a TEE to make sure the catheterization was correct. I will rely on a wheelchair van to get to the hospital for the surgery, and i found out this morning that I will have to have the surgery in Erie, PA since it's the closest place that does heart surgery to where i live, which is Jamestown, NY. New York State Medicaid will not pay for me to go to Cleveland Clinic for the surgery and followups since there is a closer hospital that will do the surgery. So, if it's imperative that i have the surgery, it will have to be done at Hamot Heart Institute in Erie, PA. I'm sure they're not as good as Cleveland, but i won't have a choice.

Thanks for the information about the coughalator. I will definitely ask my doctor about this, as i have hardly any lung power. I've used an incentive spirometer in the past (or tried to, i should say) and i can't even make the ball (or whatever it's called) move at all. Years ago, i could get it all the way to the top, but that was before i became paralyzed. Hopefully, they have a coughalator and it will help.

Thank you again and i'll let you know what happens when i see the doctor on April 8th.

Dawn
 
Hi Dawn-Marie,

I took the liberty of doing a Google search of the Hamot Heart Institute - here' a link to Leo D Fitzgibbon, MD's bio-page. Just click on the name. There's another surgeon who also has experience in valve repair and replacement surgery there. You'll be impressed with these doctors as pioneers and procedural inventors of minimally invasive cardio-thoracic surgery.

As to post-operative comfort, the key will be in lots and lots of lamb's fleece pads and many, many varied pillows. I hope there'll be many willing and gentle hands to help you through this difficult phase in life. I'm sending my best thoughts and wishes out for you.

Take Heart and all the best in your upcoming procedures.
 
From Pamela's post it sounds like you will be in excellent hands. Our prayers and best wishes in the upcoming tee and be sure to let us know if and when you have a surgery date.
 
I was put on my side the day after my OHS. I was in a coma so there wasn't any danger of me moving so I imagine it could be the same for you. I'm sure they will do all they can to keep you comfy as possible.
 
Hi Dawn-Marie -

Welcome to the site. I don't have any suggestions but recently I was visiting a Critical Care Unit of a nearby hospital and I saw an interesting bed in there that could be set by the Respiration Therapists to do certain and periodic vibrations and bumps and such, designed to stimulate coughing in a patient with pneumonia and other serious lung and medical issues--the movement kind of reminded me of one of those vibrating beds in a hotel a person could drop a quarter in decades ago. It might not be new, and I don't know if something like that could address your needs, but I'd never seen a hospital bed like that before. I hope all goes well for you. Take care :) .
 
Hi again everyone -

Thank you all again for the well wishes and the information. Pam...I am going to see Dr. Strzalka, who is an associate of Dr. Fitzgibbon. He seems to be a very good doctor. Two people i know who have had him recommended him to me. If i have the surgery (i'll know after the TEE and after the doctor decides if i'm too high risk or not), i'll be sure to let both the doctor and the nurses in the hospital know all my special needs and, hopefully, they'll have ways to take care of them.

I'll let you know if and when i'll be having surgery. It helps so much to be able to talk to all of you who have been through heart surgery before, especially since i have no family at all and it's sometimes really hard to go through this without anyone to be here with me.

Dawn
 
Welcome, Dawn-Marie

I don't have anything to add, but just wanted to welcome you and say that it sounds like you are used to advocating for yourself, and that talking about your needs to the entire hospital team beforehand is a good idea. They are probably familiar with treating people with different special needs, and will take it in their stride.

BTW, do you know if Hamot is the hospital that is close to the Shriners' hospital??
 
Hi again - Thanks Marie and Netmiff for the warm welcomes. Yes, Shriner's Hospital is in Erie, Pennsylvania too. Not exactly sure if it's right near Hamot Hospital, but it's not far away. I live in Jamestown, NY (about 45 minutes away), so i don't go to Erie all that often and don't know where everything is there.
 
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