countdown to cleveland

[Peej]

Hi all

I thought I'd start my own post to document my pre-surgery journey and update as things happen (and hopefully there is a post-surgery one )
9/9 is my date

First, thanks to all who have participated in this forum and have given real patient feedback related to their experiences
I feel it has helped calm some of my nerves a bit though I feel more anxious as we near August
As others have said before, there's not much I can do and surgery is certainly better than the eventual alternative

A little background on me
For a long time I recall going to different doctors even as a kid & none of them really seemed able to figure out what my condition was for a while
Went to Shriner's as a young kid but don't really recall much coming from it
I remember as a teenager I was ready to start football but my gp wouldn't pass my physical due to a heart murmur and sent me to a cardiologist
I recall the cardiologist saying I had mitral valve prolapse and would someday have to get surgery
I continued to go each yr for an echo up to high school and no real changes for many years
I stopped going to see a cardiologist for several years around college and post-college
The cardiologist I had been seeing died from a biking accident
Found a new cardiologist and he did tests that I had not done before - chest x-rays, TEE, etc.
He told me I had the wrong diagnosis and had a bicuspid aortic valve & ascending aorta
He thought the size of ascending aorta would be the trigger for surgery as it was a tad under 5 cm but alas it remained stabled for a number of years
I keep hearing I'd have to have surgery at some point in the future yada yada
Last yr he ordered an echo which I had not done as my yearly test for a few years and said my valve was calcifying & that was his new concern
This Spring, my test/data suggested it was time to start thinking about surgery within the next 6-12 months; still a bit of shock because I was just cruising along for a number of years
He recommended a mechanical valve (On-X) due to age (42)

Decided to I wanted to do surgery at the Cleveland Clinic; I know many people come away with great experiences at local hospitals but I've never had ANY surgery done aside from wisdom teeth (if you count that) and I guess I wanted to go to the place that does this surgery all the time
I did a heart cath and all of my info was sent to the Cleveland Clinic
My cardiologist spent some time at CC and wanted me to go to a senior surgeon if I was willing to go all that way for surgery (~5 hour drive)
He sent me to Dr Pettersson
They reviewed my recent tests and agreed on the surgery recommendation

So....here we are present day
I've reserved a room for my wife at the Intercontinental connected to CC
I've received my packet from CC
I've submitted my short-term disability request at work & jumping through those hoops
I've changed my regular dental cleaning visit from September to August; thought I'd go once more pre-surgery and I also have to give them the dental clearance form anyway
I've continued to remain active; I've always been active but still doing walks each day, riding a stationary bike and very light weight workouts
I've ordered a nice comfortable recliner the first of June that will end up not arriving in time due to the ongoing supply chain issues affecting many industries
Still a lot to do to prep and I am probably not thinking of some things

Overall, I feel pretty good day to day
I do get some shortness of breath but never to the point where I have to stop & rest....I think the change is so gradual that it's easy cough it up to getting older or being out of shape
I've had a strange experience that I suppose could be related to my condition; I've temporarily had very blurred vision out of my left eye twice
I've had several experiences where it feels like there's a small weight plate on my chest; doesn't hurt but I wouldn't say it is comfortable

 

[Zoltania]

I had never had any surgery except wisdom teeth before my heart surgery either. It's a pretty world-shaking concept. But you are obviously well-prepared, and you can look forward to joining the club of the many people whose surgery is in the past and who are healthier than before. As the saying goes, it will eventually be in the rear-view mirror.

 

[dick0236]

Hi Peeja. After reading your post I think you have dotted your "i"s and crossed your "t"s. Good luck and let us know how it goes. You'll find this forum a godsend for answering questions down the road.

 

[Hyp2r]

You seem to have organised things well, all the best for the upcoming surgery. I’m a lot older than you and had my surgery 5 months ago (2 valves replaced) and was really surprised how quickly I bounced back, it wasn’t such a big deal as I thought it may have been.

 

[Unicusp]

Welcome to the club. Good preparation. I think the toughest part is that you are scheduled so far out. When I had mine done this past February, I called the scheduling nurse (at CC) and was able to get in 2 weeks later with Dr. Svensson. It was shockingly quick, but I was glad to just get it over with. I had a severely stenotic unicuspid valve (and also an enlarged aorta replaced earlier in 2013). I also received the On-X aortic valve and have no regrets. It's performing well with no issues. Warfarin mgmt is fairly easy once you determine your individual needs. I do my own weekly testing with a target range of 2.0 to 3.0 I'm not going to go to the reduced range that On-X claims we can do. Not worth the risk and no real benefit.
So hang in there. Keep exercising as best you can without getting dizzy and passing out. Watch your heart rate and BP. Walking is great too, especially with hand weights. Eat healthy.
Don't worry about the recliner. I didn't end up needing one. No issues sleeping in bed.
Are you getting a mini or full sternotomy? Hang in there. It's not as bad as you think.

 

[Peej]

I had never had any surgery except wisdom teeth before my heart surgery either. It's a pretty world-shaking concept. But you are obviously well-prepared, and you can look forward to joining the club of the many people whose surgery is in the past and who are healthier than before. As the saying goes, it will eventually be in the rear-view mirror.

Thanks Zoltania, appreciate it!

 

[Peej]

You seem to have organised things well, all the best for the upcoming surgery. I’m a lot older than you and had my surgery 5 months ago (2 valves replaced) and was really surprised how quickly I bounced back, it wasn’t such a big deal as I thought it may have been.

Thanks Hyp2r, hoping to bounce back quickly while also trying to manage expectations!

 

[Peej]

Welcome to the club. Good preparation. I think the toughest part is that you are scheduled so far out. When I had mine done this past February, I called the scheduling nurse (at CC) and was able to get in 2 weeks later with Dr. Svensson. It was shockingly quick, but I was glad to just get it over with. I had a severely stenotic unicuspid valve (and also an enlarged aorta replaced earlier in 2013). I also received the On-X aortic valve and have no regrets. It's performing well with no issues. Warfarin mgmt is fairly easy once you determine your individual needs. I do my own weekly testing with a target range of 2.0 to 3.0 I'm not going to go to the reduced range that On-X claims we can do. Not worth the risk and no real benefit.
So hang in there. Keep exercising as best you can without getting dizzy and passing out. Watch your heart rate and BP. Walking is great too, especially with hand weights. Eat healthy.
Don't worry about the recliner. I didn't end up needing one. No issues sleeping in bed.
Are you getting a mini or full sternotomy? Hang in there. It's not as bad as you think.

Hi Unicusp. Valid thoughts on scheduling so far out and having it on my back of mind. July was not open due to the doctor's vacation schedule so I guess my thinking was I'd rather be outside walking/recovering in the autumn weather vs August and I had some "loose ends" to tie up first.

As prepared as I may seem on a personal level, I actually have not talked to anyone at CC regarding surgical approach so I have no idea between mini vs full or if it is a choice they offer the patient.

Good to hear about On-X. Seems as though many are pleased with it.

 

[BillDaThrill]

Hey Peej, as Unicusp and others have said - you sound well prepared. I had and used the recliner a bit - but maybe look at buying a wedge pillow to ease your transition back into the bed. The walking prior and plans for recover post-surgery at the Intercontinental (you should expect to stay in town for a few days after release for one final checkout visit) are just what I did and both worked out great! Have a notebook for your wife to take lots of notes throughout the visit. Cleveland Clinic was well worth my trouble coming from New Mexico. Let me know if you have any questions about any of it. Most important thing I'd suggest: Have faith in your surgical and recovery teams. Stay positive. Be calm and power thru it. Post surgery, you will recover quickly - you are going to do great. Oh yeah, and the On-X is an excellent choice!

 

[Chuck C]

Hi Peej!
Welcome to the forum and good luck with your upcoming surgery. It sounds like you are well prepared.
At your age of 42, I believe that you are wise to choose mechanical to significantly reduce the chance of future operations. So, am I understanding correctly that you will be getting a mechanical aortic valve and that they will also take care of your aortic aneurism? If so, that would be a Bentall procedure, which I had done about 18 weeks ago.
I also commend you on being active and staying active. I am very much a believer in going into surgery in the best physical condition possible.
Please keep us posted.

 

[pellicle]

...
He told me I had the wrong diagnosis and had a bicuspid aortic valve & ascending aorta
He thought the size of ascending aorta would be the trigger for surgery as it was a tad under 5 cm but alas it remained stabled for a number of years

I'd say instead "but fortunately it remained stable" ...

I keep hearing I'd have to have surgery at some point in the future yada yada

yadda?

...still a bit of shock because I was just cruising along for a number of years
He recommended a mechanical valve (On-X) due to age (42)

seems a reasonable proposition ... and they'll do the aneurysm then too right? Perfect opportunity for a one stop shop.

He sent me to Dr Pettersson
They reviewed my recent tests and agreed on the surgery recommendation

well I hope he doesn't suggest anything different

Overall, I feel pretty good day to day

excellent!

If you end up getting a mech there are plenty of good options for self management of INR (which will give you the best opportunity to have the best health outcomes).

Best wishes for a smooth recovery.

 

[cldlhd]

Hi all

I thought I'd start my own post to document my pre-surgery journey and update as things happen (and hopefully there is a post-surgery one )
9/9 is my date

First, thanks to all who have participated in this forum and have given real patient feedback related to their experiences
I feel it has helped calm some of my nerves a bit though I feel more anxious as we near August
As others have said before, there's not much I can do and surgery is certainly better than the eventual alternative

A little background on me
For a long time I recall going to different doctors even as a kid & none of them really seemed able to figure out what my condition was for a while
Went to Shriner's as a young kid but don't really recall much coming from it
I remember as a teenager I was ready to start football but my gp wouldn't pass my physical due to a heart murmur and sent me to a cardiologist
I recall the cardiologist saying I had mitral valve prolapse and would someday have to get surgery
I continued to go each yr for an echo up to high school and no real changes for many years
I stopped going to see a cardiologist for several years around college and post-college
The cardiologist I had been seeing died from a biking accident
Found a new cardiologist and he did tests that I had not done before - chest x-rays, TEE, etc.
He told me I had the wrong diagnosis and had a bicuspid aortic valve & ascending aorta
He thought the size of ascending aorta would be the trigger for surgery as it was a tad under 5 cm but alas it remained stabled for a number of years
I keep hearing I'd have to have surgery at some point in the future yada yada
Last yr he ordered an echo which I had not done as my yearly test for a few years and said my valve was calcifying & that was his new concern
This Spring, my test/data suggested it was time to start thinking about surgery within the next 6-12 months; still a bit of shock because I was just cruising along for a number of years
He recommended a mechanical valve (On-X) due to age (42)

Decided to I wanted to do surgery at the Cleveland Clinic; I know many people come away with great experiences at local hospitals but I've never had ANY surgery done aside from wisdom teeth (if you count that) and I guess I wanted to go to the place that does this surgery all the time
I did a heart cath and all of my info was sent to the Cleveland Clinic
My cardiologist spent some time at CC and wanted me to go to a senior surgeon if I was willing to go all that way for surgery (~5 hour drive)
He sent me to Dr Pettersson
They reviewed my recent tests and agreed on the surgery recommendation

So....here we are present day
I've reserved a room for my wife at the Intercontinental connected to CC
I've received my packet from CC
I've submitted my short-term disability request at work & jumping through those hoops
I've changed my regular dental cleaning visit from September to August; thought I'd go once more pre-surgery and I also have to give them the dental clearance form anyway
I've continued to remain active; I've always been active but still doing walks each day, riding a stationary bike and very light weight workouts
I've ordered a nice comfortable recliner the first of June that will end up not arriving in time due to the ongoing supply chain issues affecting many industries
Still a lot to do to prep and I am probably not thinking of some things

Overall, I feel pretty good day to day
I do get some shortness of breath but never to the point where I have to stop & rest....I think the change is so gradual that it's easy cough it up to getting older or being out of shape
I've had a strange experience that I suppose could be related to my condition; I've temporarily had very blurred vision out of my left eye twice
I've had several experiences where it feels like there's a small weight plate on my chest; doesn't hurt but I wouldn't say it is comfortable

A lot of this sounds very familiar except for the calcifying part and the geography. I discovered I had a bicuspid aortic valve just before my 45th birthday and about 11 months later I had surgery due to an aneurysm that was almost 5 cm. I was also told I could wait but I didn't want to. Since my valve had trace leakage and no calcification I ended up keeping the original and just have any aneurysm replaced. I also thought about the Cleveland clinic but I live just outside Philly and I went to the hospital at the University of Pennsylvania and had Dr Joseph Bavaria as my surgeon. I felt comfortable because he's rated as one of the best in the country. Enough about me though I just wanted to tell you that I did all the same, the disability stuff at work, the recliner etc and the surgery went great, I had it in February 2015, and I feel as good today as I did then so it's good that you're getting it done at a younger age you will recover quicker and there will be a time where you will barely think about it. At least that's how it's been for me, but speaking for my own experience for about a month and a half after the surgery I just did not feel quite like myself and was worried that it would be a permanent situation. I tell you this not too scary in any way but to reassure you if you do feel like a truck ran you over and physically weaker than you were it will pass. You will be back as you were before without the worry of the aneurysm.
P.S. I was also told I had a murmur when I was younger but the general practitioner said it was probably just "athletes heart" But I guess it wasn't just that. Best wishes

 

[Hyp2r]

Looking forward to your upcominging posts as you head to surgery, you certainly have a great attitude which I reckon will help you through. I went in largely unprepared- didn’t know this forum existed- and came through with very little drama, you’ll do even better.

 

[charlottekaye]

You seem to have organised things well, all the best for the upcoming surgery. I’m a lot older than you and had my surgery 5 months ago (2 valves replaced) and was really surprised how quickly I bounced back, it wasn’t such a big deal as I thought it may have been.

My Daddyvused to say heart surgery is mainly inconvenient.

 

[charlottekaye]

My Daddy used to say heart surgery is mostly inconvenient.

 

[Peej]

Hi Peej!
Welcome to the forum and good luck with your upcoming surgery. It sounds like you are well prepared.
At your age of 42, I believe that you are wise to choose mechanical to significantly reduce the chance of future operations. So, am I understanding correctly that you will be getting a mechanical aortic valve and that they will also take care of your aortic aneurism? If so, that would be a Bentall procedure, which I had done about 18 weeks ago.
I also commend you on being active and staying active. I am very much a believer in going into surgery in the best physical condition possible.
Please keep us posted.

Hi Chuck C, correct - mechanical aortic and aortic aneurysm will be done together, at least what my local cardiologist has said.
Funny when I was a teenager I had believed that if I stay in good shape I'd be able to keep my heart condition from getting worse (HA) so I've been staying active all these years. At least it created a healthy habit.

 

[Peej]

I'd say instead "but fortunately it remained stable" ...



yadda?



seems a reasonable proposition ... and they'll do the aneurysm then too right? Perfect opportunity for a one stop shop.



well I hope he doesn't suggest anything different



excellent!

If you end up getting a mech there are plenty of good options for self management of INR (which will give you the best opportunity to have the best health outcomes).

Best wishes for a smooth recovery.

Thanks Pellicle
Correct I'm getting the one stop shop
I've been doing some reading and learning on the topic of anticoagulation

Yes, yada yada

 

[Peej]

A lot of this sounds very familiar except for the calcifying part and the geography. I discovered I had a bicuspid aortic valve just before my 45th birthday and about 11 months later I had surgery due to an aneurysm that was almost 5 cm. I was also told I could wait but I didn't want to. Since my valve had trace leakage and no calcification I ended up keeping the original and just have any aneurysm replaced. I also thought about the Cleveland clinic but I live just outside Philly and I went to the hospital at the University of Pennsylvania and had Dr Joseph Bavaria as my surgeon. I felt comfortable because he's rated as one of the best in the country. Enough about me though I just wanted to tell you that I did all the same, the disability stuff at work, the recliner etc and the surgery went great, I had it in February 2015, and I feel as good today as I did then so it's good that you're getting it done at a younger age you will recover quicker and there will be a time where you will barely think about it. At least that's how it's been for me, but speaking for my own experience for about a month and a half after the surgery I just did not feel quite like myself and was worried that it would be a permanent situation. I tell you this not too scary in any way but to reassure you if you do feel like a truck ran you over and physically weaker than you were it will pass. You will be back as you were before without the worry of the aneurysm.
P.S. I was also told I had a murmur when I was younger but the general practitioner said it was probably just "athletes heart" But I guess it wasn't just that. Best wishes

Thank you!
I've also read Penn is a very good place w/excellent doctors and surgeons

 

[Peej]

Hey Peej, as Unicusp and others have said - you sound well prepared. I had and used the recliner a bit - but maybe look at buying a wedge pillow to ease your transition back into the bed. The walking prior and plans for recover post-surgery at the Intercontinental (you should expect to stay in town for a few days after release for one final checkout visit) are just what I did and both worked out great! Have a notebook for your wife to take lots of notes throughout the visit. Cleveland Clinic was well worth my trouble coming from New Mexico. Let me know if you have any questions about any of it. Most important thing I'd suggest: Have faith in your surgical and recovery teams. Stay positive. Be calm and power thru it. Post surgery, you will recover quickly - you are going to do great. Oh yeah, and the On-X is an excellent choice!

Thanks BillDaThrill
Was your decision to stick around Cleveland after release your choice or what they suggest? They haven't mentioned that to me (yet anyway)
I've looked at the wedge pillow...some look like they'd sleep hot so I'll take any suggestions if someone tried and liked one

 

[MdaPA]

Was your decision to stick around Cleveland after release your choice or what they suggest?

Yes, they usually suggest that you to stay locally for a few days post discharge from OHS. You most likely don't want to travel too far immediately after discharge anyway.