Hello everyone. It has been a few years that I have been on this site. On 12/5/16 I had an aortic bovine value placed in me at Cleveland Clinic. Everything has went larger pretty good. Had a little bump in the road when a year after my surgery after an echo of my heart by my cardiologist showed an elevated aortic gradient pressure of 27mmHg. He was concerned since after the surgery it was 22mmHg. He sent me back to Cleveland and they did another one and they got 22mmHg as it was after the surgery.
Thant seem to solve the problem.
This year a few weeks ago I had another. Now this one reported back an aortic gradient of 34mmHg. My cardiologist has not made contact with me yet. I just finished a letter to him explaining my concerns. Also, in this report there is mention of calcium buildup and stenosis with the aortic valve.
Anyone got any info concerning things such as this?
Just seems way early for these things to be happening with the valve only being slightly over 2 years old.
Any and all help would be greatly appreciated.
I told my doctor in my letter that I feel he should send me back to Cleveland where the expertise and experience is to resolve this.
Always insurance issues.
Just wondering. I had valve surgery on 12/5/16 at CC. They replaced my aortic valve at that time. Things have been going very well and I started back to work last Tuesday.
My question is: How long should it be between the time of my surgery and the next echo to check on the valve condition to see how it is working?
They did an echo 7 days after my surgery at CC.
When I went to my cardiologist in January he said he wouldn't do another one for a year after.
Just seemed long to wait in between. What is the consensus out there among all of you guys? Is there a standard of care for aortic valve replacement patients that says what should be done for follow up care?
Maybe I'm just being paranoid about the whole thing but I want to stay on top of everything.
5 weeks post op as of today. Feeling pretty good too. Going to go to be evaluated for cardiac rehab tomorrow. Wondering if they will begin it or not. Had some blood issues after surgery and needed two units of platelets and two units of blood also. After discharge my HgB was at 8.2 and 2 weeks later it was at 8.6 so I am a little concerned about that. Will have to see what they say about everything. Primary care doctor told me not to begin rehab until Hgb over 10.
When did you ladies and guys start your rehab after OHS? I had an aortic valve replacement at CC on 12/5/16.
Well it's been 16 days since the surgery. AVR. I think everything went pretty dam good. Was in the hospital (CC) from Monday when the surgery occurred and discharged on the following Saturday. Stayed around for a few day and they checked me out on the following Monday. Homeward bound after that. Long 4 hour drive. Been recovering on a steady pace I believe. The one down part is that while I was in the hospital I needed 2 blood transfusions and 2 units of packed platelets also. My last blood test at CC said my HgB was at 8.2.
Had my first visit with cardiologist back home, well PA, and in that 2 week period the HgB went from 8.2 to 8.6. So it is going up but slowly. Sounds as if they are going to let nature take it course and expect it to rebound over the next month.
Anyone else have trouble with HgB being LOW.
Eating lots of red meat and taking Iron also. Just get wore out quickly seems to me the bad side effect. Seems as if this will slow down recovery some also.
I am feeling pretty good though and that is important.
Ok I had surgery last Monday 12/5. They replaced an Aoriic valve. Yesterday they pulled the last chest tupe. The other one was pull several days before. More drainage in the one.
Anyways, about pain. When will it ease up?
Is there a point in time where one moment it's there and then the next it's gone?
I just would have thought things would begin to ease up and maybe they are and I just appreciate the.
Tell me 2 weeks post op your pain levels almost gone?
3 weeks your pain was so Almost gone?
Just wondering at what point I can wean myself off these pain pills
I seem to have little in the way patience I am !earning about myself. I waited for 12 hours yesterday going from cardiac ICU to a step down unit. they kept me ICU for an extra day cause I was putting out to much blood
Well I made it through the surgery ok. There was a little problem with more blood coming from the right chest tube and talk about opening me back cause it was too much. But That cleared up and now just stay in ICU LONGER
It's getting real close now. Monday at 5:15am. CC called me up today to remind me. I think they were making sure I didn't show up at 5:15pm. Been running around getting everything ready. Dealing with the disability insurance company who is suppose to pay my wages when I'm off work. Seems like a never ending battle. I know everyone is just doing their job but dam.....
Put everything is a letter to set my affairs in order. A scary thing. I know it is going to be alright but stuff happens so I can't leave my wife hanging.
When I think of things it is amazing how we all have our little jobs we do in relationships, paying certain bills or taking care of business that the other person is really unaware of or at least unsure of what is happening. The dependence factor.
Didn't really like writing that letter. I'm positive she won't need it but it was the correct thing to do.
Just made it to CC a few hours ago. Had ti!e to check into the Holiday Inn and walk down to the hospital and try to figure out where I was going tomorrow morning at 7:30am. so no food or drink after 9 tonight, long day tomorrow especially for my wife hurrying and waiting
Anyone listen to this visualization stuff off CC website? I downloaded it yesterday and then played around with an Ipod for hours trying to figure out how to load these four recordings on it. Figured it out and started to listen.
Mellow stuff for relaxation. Might help with the nerves. The studies claim it helps a lot.
Have to try it. They have both a pre op recording and a post op recording and a recording for the family when you getting your surgery.
My wife needs that one. I'm a little worried about her. She is holding it all inside but after 50 years with her it is not difficult to tell.
This is the New Cancer Center that we will moving into in June of next year. Looks a lot like one of the buildings at CC I think.
Update posted on...
November 23, 2016
Finished last day at work today before my surgery. Thought I'd take a little time off before the surgery. I am going to CC next week for testing on the 29 and 30 and didn't see any point in going to work on Thursday and Friday and then back to CC on Sunday for surgery on Monday. It was kind of weird leaving work though. I have been in the same place for over 30 years treating cancer patients with radiation therapy at our cancer center. Great job and Great people.
To see my name up there in the Upcoming Surgeries list is making it even more real. I know, one day at a time, think positive and know that I have the best people in the business looking after me and a lot of good people behind me.
Adam I need your help. People at Cleveland Clinic are not being very understanding and it is causing major problems with my surgery. Please if you read this. HELP
I have sent you a email outlining what is happening with additional information like telephone numbers.
Very upset. Got an email tonight from CC. Said there was a problem with my insurance. Now I have to sit around all weekend wondering what is going on.
The lady from my health insurance company called me the other day and told me everything had been approved. From the testing before surgery to the surgery itself.
I'm beside myself with worry.
Got a call from my health insurance company today. They told me all the testing and the surgery will be covered by them at an out of network rate.
I was happy to hear that. Was worried they would deny it and I'd have to fight with appeals and the such. Still going to be paying out some not so small dollars but I feel that the service and expertise at CC is so much worth it.
Wish they had some housing there that was super low cost as a service to their patients.
OK, now I have a date for my surgery and I'm wondering about how long a person stays around the hospital after surgery. I realize that I'll probably be in the hospital for 4 or 5 days if everything goes well and I'm going to insist that is the case. LOL
But sense I'm going to be in CC and about 4 hours away from home I'm thinking that maybe it would be a good idea to stay in Cleveland for several days after just in case and so I'm close to the place where the surgery took place.
I also wondering if the surgeon will want to see me several days after I'm discharged just to check things out.
What has been the experience/advise that all the people here have. My wife thinks they are going to discharge me and I'm going to climb into the car and ride for 4 hours and be home and I'm not so sure that is the wisest thing to do.
So a little HELP would be appreciated.
Got my call from CC today. I'm suppose to go there for tests on the 29th & 30th. Then I come back on December 5th for surgery. The person who called said from the review of my records which were submitted to them for review it would be a minimally invasive procedure to replace the aortic valve.
Have the rest of you ladies and guys who have had their surgery at CC experience something along these lines in respects to scheduling of tests and surgery?
Just got a whole lot more real all of a sudden. Oh well, been expecting this for over 10 years and knew it was just a matter of time. Still a bit scary though.
The insurance company denied my authorization to go to CC. Was not happy. The cardiologist called me as I was driving home and told me about it. He couldn't give me a reason and told me to talk to his people in his office. I got home and called them and they really didn't know why they denied the approval. So did the phone thing back and forth between them and the insurance company and by the time it was all done I had spoken to the lady at the insurance company and she said she would authorize the referral.
Not sure what it was all about and it didn't make any sense to me at all but I got what I wanted and I guess that's all that really matters.
Just don't understand the obstacles and need for the added anxiety.
What can I say, such a convoluted system. A love hate hate relationship.
Hurry up and wait I really don't like it.
I work in a major hospital in the Lansing, Michigan area and have been doing there for over 30 years and I still don't understand how they really function.
My journey is an individual thing, I just have to keep in mind that so many others are on their own journeys and have their own needs.
I guess when the problem is our own we tend to focus on that and forget about all the people that need help besides us.
Just hope the powers that be find me soon cause I feel as if this problem needs to fixed soon.
Saw my cardiologist today. He told me what I suspected after the heart cath. My coronary arteries are in great shape. He also said I needed to get my aortic valve replaced like now. He said he would get my records to CC ASAP and if I hadn't heard from them by Tuesday to call him.
That kind of sounds as if this show could get going really quick. Not sure I was really prepared for that but it has to be done and probably the sooner it is done the better and safer for me.
Tell me anyone else experience this kind of action?
I am finishing up tests that I am going to send off to the Cleveland Clinic in another week or so. I wonder if you guys and gals can give me some kind of idea about wait times and schedule times.
I'm wondering if I'll be waiting for weeks or months.
I'd really like to get this done this year if at all possible. A little worried about my insurance changing in January. Plus I would just like to get this behind me and start the new year with a heart that is right.
Thanks for all your help. It is appreciated very much.
Had my heart cath this morning. The cardiologist said my coronary arteries were in great shape and saw no reason to be concerned about a heart bypass as well as an aortic valve replacement.
That is good news to me. A aortic valve replacement is enough to take on I think.
Now just have to get all the data together and get it off to CC and get an appointment there to be seen and evaluated for the aortic valve procedure.
Any advice or hints on what to not leave out in this package of medical data that I'm sending them?
I'd like to get them all the information they want but I'm fairly sure they will still want more no matter what.
Went and had an echo today. Not good, the average gradient over the aortic value was 49 with the peak being 98. The one 6 months ago was 40 and 78.
I am having a heart cath next Tuesday. This will tell me if there is any other damage to the heart, coronary arteries. Hoping not. Having a aortic value replaced is enough.
Hey anyone out there get their meds from Canada?
Well went to cardiologist today. Scheduled the heart cath for 10/11. I think that will be the last test before I submit my medical records to Cleveland Clinic. Having a echo on 10/4 also. Can anyone tell me all the tests that the Cleveland Clinic required for their surgeries. My fear is that I will arrive for a consult there and they will say that I need this and that and I will spend days there getting more tests. I would really like to arrive with what I needed or rather what they needed instead of getting there and spending time and money I don't have getting tests that I could have had done at home prior to my arrival.
Any information will help.
I realize that every case is different as is every person but all input is truly valuable and appreciated.
At this point I know I will need a Aortic valve replacement, I have a bad bicuspid valve that is been diagnosed as severe now. The heart cath I'm having will determine the health of the coronary vessels and if they need work/replacement.
I'm seeing my cardiologist on 10/21 for a follow-up concerning the heart cath and I'd and if I need anything else before going to CC it would be a good time to convince him of that need.
Still gathering information and getting tests done or scheduled at least.
I had a question about hospital beds. What does everyone think about getting a hospital bed at home for the recovery period after discharge? Wondering if I should be planning on something like this. Been reading posts over the last few days and it seems that laying flat and sleeping is going to be a challenge for several weeks after surgery.
Did any of you experience that problem or did you have the foresight to arrange for a hospital bed to be waiting for you when you got home?
Many people have stated they sleep in a lazy boy for several weeks and I do have one, I'm just wondering what this community thoughts were concerning hospital beds for the first several weeks post surgery.
Need information about Cleveland Clinic, things like where should wife stay while I'm in the hospital, which hotel/motel.
Should I plan on staying around Cleveland Clinic for several weeks after surgery just incase?
Should I start cardiac rehab there before going home?
What doctors would guys/Ladies recommend?
So many unknowns!!
So much to learn.
Any and all help would be appreciated. I want to go into this experience with as much information as possible so I'm really looking for your help in understanding what I should I expect.
I am looking at having surgery in the near future. I have been diagnosed with a bicuspid aortic valve approximately 12 years ago. Been followed over that period of time by a cardiologist who has been doing regularly echo's on a yearly basis for several years and now doing them every 6 months. I am totally asymptotic at this time but the problem has went from moderate stenosis to severe stenosis. I am 65 and I have come to the conclusion that it would be in my best interest to have the surgery when my overall health is good instead of waiting until my condition goes from good to bad.
I am planning to go to the Cleveland Clinic to have the surgery and I am wondering and seeking advice and experiences of people who have been there for their surgeries for aortic valve replacements.
Your input, advice and stories of your experiences would be greatly appreciated.
My anxiety levels are increasing as I am sure all of you can relate to and I look forward to your help in this matter.