BAV facing OHS in Oct (AVR and aorta graft)

[Jennie]

Jennie, thanks for a great post! You are a true medical authority on OHS. I grabbed the "gold ring" when I went around the valve choice merry-go-round and got the only valve on the market back then. Fortunately for me, it was a mechanical. Your post "dots the eye" regarding valve choice for longevity. I hope your Onyx eliminates any more intrusive surgeries.

PS, For the first thirty-plus years after surgery no doctor ever mentioned "no grapefruit" and I continued to eat/drink it on a routine basis. I learned grapefruit is a no-no from this forum. I cut grapefruit juice from my diet but I continue to enjoy 1/2 grapefruit a time or two each month. My INR is well managed and I have never seen a negative effect due to grapefruit.......I also eat "creamed spinach" from time to time. I am a BIG believer in "dose the diet"

Yes, I dose the diet as well! I've upped the dose a few times so that I can eat the veggies I want. I feel like I sort of know how much to eat at this point.

So which mechanical did you get, and how long have you had it? I'm guessing St Jude?

 

[Jennie]

personally I'd say that you can eat a grapefruit probably without any issue. To me the issue comes from people who just can't stop at one, or people who suddenly gorge on it in ignorance (eg I bought 5 gallons of grapefruit juice at costco because it was $1 a gallon). Remember one grapefruit is not representative of how much juice will be in a tall glass of the juice from a bottle. Few people these days hand juice citrus and are unfamiliar with just how little juice you get from one fruit.

I propose you conduct a test.

1. measure INR on day 1 (perhaps do this and leverage off your regular INR testing day by testing, calling that day 1 and on day 3 test INR again
2. on that day eat a grapefruit (now, I'm going to say don't lather sugar all over it, if you actually like grapefruit you won't need this.
3. test INR on day 5
4. graph this and see if there was a bump in the graph after the grapefruit

if no bump then you can eat a grapefruit

note: if you have to cover that thing in sugar to mask its horrible bitter taste then chances are you don't actually like grapefruit.

also this does not apply to bottled (sugared) grapefruit juice, but you could do the above test on one glass.

If you like to have a glass of that every day with breakfast, then you can test to see what effect that has.

Test and know thyself.

Best Wishes

 

[Jennie]

I do have some grapefruit on special days, like Christmas morning. I really don't worry about it too much. I stay away from juice, it's not "worth the squeeze" as they say. And I never sugarcoat it!

 

[dick0236]

So which mechanical did you get, and how long have you had it? I'm guessing St Jude?

An old Starr-Edwards "ball-in-cage" mechanical that is no longer in production. It was implanted in 1967 @ age 31.....now 87. It appears that the valve will go all the way.

 

[pellicle]

Yes, I dose the diet as well! I've upped the dose a few times so that I can eat the veggies I want. I feel like I sort of know how much to eat at this point.

excellent

 

[Chuck C]

So which mechanical did you get, and how long have you had it? I'm guessing St Jude?

**** got his valve way before St. Jude was even in the valve business. In fact, when @dick0236 got his mechanical valve, Jude hadn't even yet been declared a saint. He was just Jude

 

[pellicle]

... Jude hadn't even yet been declared a saint. He was just Jude

Don't make it bad ... Remember to let her into your heart,
Then you can start to make it better.

oops

 

[Jennie]

An old Starr-Edwards "ball-in-cage" mechanical that is no longer in production. It was implanted in 1967 @ age 31.....now 87. It appears that the valve will go all the way.

That is fantastic!! One and done! Maybe it's good that you didn't have all these choices back then. Gold ring, indeed! Many more years to you.

 

[HokieHaden]

Hi all - my SAVR and aorta repair surgery is scheduled for Oct 25 (1 week) and I’ll be meeting with the Vanderbilt surgeon, Dr Shah, on Oct 24 for one more discussion on valve selection. He told me at the initial consult that I could decide on the valve right up until the day of surgery. And it appears that’s just about what I’ll be doing.

Appreciate continued insights, positive thoughts and prayers as this final week passes. Here we go!

 

[HokieHaden]

Oh, and another interesting tidbit - I received the financial estimate today from Vanderbilt. Who wants to guess what the Total Fee (before insurance discounting, etc.) is quoted to be?

 

[morellib]

Best of luck! I found my Vanderbilt experience to be wonderful with great nurses and nurse practitioners. If they don’t initially mention cardiac rehab, request to do the program at Williamson County Medical Center. It was top notch. They told me they’re using the Dayani Center on Vand’s main campus for heart transplant rehab…..

 

[morellib]

On another topic, I wonder why Dr. Shah would recommend the Magna valve versus the Inspiris Resilia considering that the Inspiris has the tissue treatment to inhibit calcification AND a valve frame engineered to expand when inserting a TAVR in the future, particularly since he mentions the future TAVR option. As I mentioned, my surgeon at Vandy enthusiastically recommended the Inspiris. It could be as simple as his familiarity with inserting the Magna and unfamiliarity with the Inspiris but it might be worth the question. Dr. Melissa Levack was my surgeon….

 

[HokieHaden]

Best of luck! I found my Vanderbilt experience to be wonderful with great nurses and nurse practitioners. If they don’t initially mention cardiac rehab, request to do the program at Williamson County Medical Center. It was top notch. They told me they’re using the Dayani Center on Vand’s main campus for heart transplant rehab…..

Great to hear - it’s a fine institution and I’ve always had a good experience as a patient at Vanderbilt. I live in Williamson County, so rehab at WillCo would be quite convenient. Thanks!

 

[HokieHaden]

On another topic, I wonder why Dr. Shah would recommend the Magna valve versus the Inspiris Resilia considering that the Inspiris has the tissue treatment to inhibit calcification AND a valve frame engineered to expand when inserting a TAVR in the future, particularly since he mentions the future TAVR option. As I mentioned, my surgeon at Vandy enthusiastically recommended the Inspiris. It could be as simple as his familiarity with inserting the Magna and unfamiliarity with the Inspiris but it might be worth the question. Dr. Melissa Levack was my surgeon….

Great question - perhaps the IR is an option - I’ll plan to ask this on Tue morning at that consult.

 

[Chuck C]

Hi all - my SAVR and aorta repair surgery is scheduled for Oct 25

Best of luck!

Appreciate continued insights,

Small tip on the mattress and bed settings in the hospital.

I found that getting the right setting on the bed incline was crucial to my comfort. In addition to the bed being adjustable, the mattress was adjustable, in terms of firmness, like a Sleep Number type mattress. Adjustable bed incline is standard in hospitals, and I expect adjustable mattresses may now be common, if not standard. I found that getting adjustments just right was very helpful for my comfort- kind of a Goldilocks thing. It would literally make the difference in going from feeling mild to moderate discomfort, to feeling totally comfortable.

Mattress firmness setting was easy- it turned out that the softest setting was the most comfortable- like sleeping on a cloud. It took several adjustments to get the bed incline just right. The problem was that every time I got up and out of bed, they raise the bed incline to assist getting up and we needed to start all over again to find the right setting. Turns out that at the foot of the bed there is a digital display indicating the bed incline angle. So, once we got the setting just right, I had the nurse write down on the display chart in the room the setting numbers for both upper body and leg incline, so that we could easily find that Goldilocks position each time I got up and then back into bed. I had them leave the numbers up, so that the nurses on each shift could refer to the settings.

It turns out that about 7 years before my surgery, Sleep Number had a sale and I got a good deal on an adjustable mattress. The package deal included a bed frame with adjustable incline for head and foot, just like a hospital bed, a feature which I rarely used, perhaps only about 4 times during 7 years of ownership. I had almost forgotten about this feature, until I got home from the hospital and it dawned on me. I was able to adjust my home bed exactly as I had done in the hospital and noted the level. Being able to raise the upper part of the frame was also of great assistance getting out of bed. As for mattress firmness, under normal circumstances I kept mine at about 75- I moved that down to about 30, which gave me that soft cloud feeling just like the hospital bed.

Anyway, if you or other members are facing upcoming surgery and it also happens to be about time for a new mattress anyway, it might be something to consider getting a this type of adjustable mattress with adjustable frame. It was really not that much more expensive than other high quality mattresses.

Wishing you all the best with your procedure and please keep us posted on how your recovery is coming along

 

[HokieHaden]

Best of luck!


Small tip on the mattress and bed settings in the hospital.

I found that getting the right setting on the bed incline was crucial to my comfort. In addition to the bed being adjustable, the mattress was adjustable, in terms of firmness, like a Sleep Number type mattress. Adjustable bed incline is standard in hospitals, and I expect adjustable mattresses may now be common, if not standard. I found that getting adjustments just right was very helpful for my comfort- kind of a Goldilocks thing. It would literally make the difference in going from feeling mild to moderate discomfort, to feeling totally comfortable.

Mattress firmness setting was easy- it turned out that the softest setting was the most comfortable- like sleeping on a cloud. It took several adjustments to get the bed incline just right. The problem was that every time I got up and out of bed, they raise the bed incline to assist getting up and we needed to start all over again to find the right setting. Turns out that at the foot of the bed there is a digital display indicating the bed incline angle. So, once we got the setting just right, I had the nurse write down on the display chart in the room the setting numbers for both upper body and leg incline, so that we could easily find that Goldilocks position each time I got up and then back into bed. I had them leave the numbers up, so that the nurses on each shift could refer to the settings.

It turns out that about 7 years before my surgery, Sleep Number had a sale and I got a good deal on an adjustable mattress. The package deal included a bed frame with adjustable incline for head and foot, just like a hospital bed, a feature which I rarely used, perhaps only about 4 times during 7 years of ownership. I had almost forgotten about this feature, until I got home from the hospital and it dawned on me. I was able to adjust my home bed exactly as I had done in the hospital and noted the level. Being able to raise the upper part of the frame was also of great assistance getting out of bed. As for mattress firmness, under normal circumstances I kept mine at about 75- I moved that down to about 30, which gave me that soft cloud feeling just like the hospital bed.

Anyway, if you or other members are facing upcoming surgery and it also happens to be about time for a new mattress anyway, it might be something to consider getting a this type of adjustable mattress with adjustable frame. It was really not that much more expensive than other high quality mattresses.

Wishing you all the best with your procedure and please keep us posted on how your recovery is coming along

Really great practical tip! I don’t have the adjustable bed at home and I’m thinking that’s a miss on my part. Will see if I can get one of those foam wedges to at least help a bit.

 

[Gail in Ca]

I’ll guess $600k!

 

[HokieHaden]

I’ll guess $600k!

Okay, not that high, but the number still had my jaw hitting the floor. I think it’s because I remember my 1990 OHS costing around $60,000.

This total fee was quoted as $207,000! With 30 years of inflation and what I know hospital admits cost these days, I guess that quote shouldn’t surprise me. And again, this isn’t what the hospital will receive, as it will get discounted based on insurance allowable, etc.

 

[slipkid]

Oh, and another interesting tidbit - I received the financial estimate today from Vanderbilt. Who wants to guess what the Total Fee (before insurance discounting, etc.) is quoted to be?

I'll play - I say at least $500,000!

 

[slipkid]

Okay, not that high, but the number still had my jaw hitting the floor. I think it’s because I remember my 1990 OHS costing around $60,000.

This total fee was quoted as $207,000! With 30 years of inflation and what I know hospital admits cost these days, I guess that quote shouldn’t surprise me. And again, this isn’t what the hospital will receive, as it will get discounted based on insurance allowable, etc.

Hey you got a bargain!

My hospital stay alone (b4 insurance) was $450k.

And that did not include cardiologists, surgeon & staff, anesthesiologist, the ER doctors, ambulance ride, and other bills I had to wade through later which took months to go through and straighten out (some were handled wrong by my insurance company on top of it)....