MAYO OR BUST: Surgery April 23

[Jennie]

Folks,

I'm penciled in on April 23 for surgery at Mayo Clinic. Dr. Kenton Zehr will do the honors. If possible, he will repair my aortic valve (severe aortic regurgitation) and maybe put some Dacron reinforcement tubing in the aorta (mild-moderate mid-ascending aortic aneurysm). Otherwise, he'll replace the whole thing (valve, root, aorta) with CryoLife's aortic SynerGraft "CryoValve" homograph (newly approved by FDA).

Timing: Check.
Surgeon: Check.
Valve: Still a bit unsure there.

I ruled out Cleveland Clinic and Dr. Cosgrove, as his assessment of my situation was "50, ah, maybe 60 percent chance of repair". So, I don't think I am limiting my repair chances by going to Mayo instead of Cleveland; it seems that a repair is mainly dependent on the condition of my valve and not dependent on choosing one of these surgeons over the other.

The CryoValve: I may need a bit of a pep talk when I get there, to soothe some doubts. Otherwise, I'll go with a regular homograph. It comes down to the fact that I cannot see the future, so I must go with my best choice at this time. Thankfully God DOES see the future, and I am in His hands, and I trust Him, and He will take care of me.

So, here goes! T minus one month....

-Jennie

 

[Mara]

Good luck Jennie!

I hope all is "go" for your repair. But, if not, I bet the CryoVlave will be just great.

Hey, Mayo is no flea bag hospital! I am sure you will get great care and an excellent surgeon.

Try not to think too much about the surgery, think about how well and un-tired you will feel after the surgery! It's an amazing difference.

Call if you need a general pep talk!
-Mara

 

[Jennie]

thanks!

thanks!

Thanks Mara!

I have your number in my bag, and I mean LITERALLY, and I will probably give you a call at some point for a pep talk!!

I am excited about the hospital and surgeon - meaning, I'm glad I am going there. I know I'll get the best of care....

Otherwise, doing okay, trying to sort out a bunch of details. I'm heading to Alabama afterwards to spend the month of May at my aunt and uncle's, then I'll head back home for June, and hopefully back to work in July.

Otherwise, I am trying to figure out how to tell all my family. There's a lot going on with everyone else (new baby, out-of-country visitors, vacations, my mother was in the hospital herself a little while ago, Easter) - there never seems to be the right time to say, oh, by the way, I'm having cardiac surgery in a couple weeks.... Part of it is that I don't want people freaking out on me, my mind is focused and I don't need folks (yes, they are well-meaning and concerned) to be working my mind over, questioning all my decisions. I think I'll start with my dad, he's logical and calm, and go from there....!!

So, Mara, thanks, and I'll be in touch!!

-Jennie

 

[Tom]

Great news Jennie!

Mayo is a great place. I had my surgery there in 8/99. They will take very good care of you. The doctors and nurses were wonderful.

Best of luck to you.
Tom

 

[Jennie]

Thanks Tom!

So far I've been well taken care of there. I don't know much about St. Mary's Hospital, but I'll be finding out soon enough! I'm glad things went well with you - and I'm looking forward to posting a success story of my own!

I'll keep you posted,
Jennie

 

[Nancy]

Hi Jennie-

Glad everything is working out for you. These decisions are so hard, but you did it and are now on the way to a new you.

 

[Ron K]

Family talk

Family talk

Jennie,

Good luck discussing your up-coming heart surgery with your family.

I would suggest that you present this to them in a positive way, reassuring them with things like the success rate, particularly for younger patients (99%), the confidence you have in the doctors and the staff at the Mayo clinic, how you expect to be feeling so much better after the recovery period, etc.

When they ask if there is anything they can do, ask them first of all to pray for you. You can never have too many prayers. Also, tell them that anything they can do to take care of little things while you are in the hospital and then recovering at your Aunt and Uncle's home in May would be appreciated. This might include checking on your home regularly if they're in the same area, arranging for lawn mowing, and stuff like that.

The fewer things you have to worry about after the surgery, the better off you'll be.

Let your family know that you know that they will be there for you whenever you need them, but for the time being, everything is under control.

Lastly, try to be exceptionally understanding of what the initial news will mean to them. After all, if it was your daughter that was going through this, wouldn't you be a little upset? Once the initial shock is over, they should come around to seeing things like you do now.

Again, good luck with this meeting. I know it will be difficult for you. Stay positive. You know you're doing the right thing and all will be well in a couple of months.

Ron K

 

[sylviayasgur]

hi jennie!
just wanted to let you know that we will be here to keep you company while you wait for april 23 to roll around. the waiting can sometimes be difficult, so just try and keep busy.
i hope it's not too hard breaking the news to your family. i have a big family and somehow, everyone usually has something to say/add. just remember that they mean well and only want the best for you. then, just stick by your decision_ it sounds like a great gameplan you have mapped out.
wishing you all the best,
sylvia

 

[greggo32]

Steady as she goes!

Steady as she goes!

Dear Jennie,

Hi, Greg here. I hope this reply finds you in good spirits. Maybe, drink some spirits and you will be in good spirits! Jennie, you are making the best decision for YOU! That is all that counts. Oh, I spoke with my cousin (Cardiologist from Chicago). He didn't hear anything about the new Cryolife product. He attended selected programs at the Atlanta Convention. You need to stick with the data you are getting from Mayo and other major institutions. Too many chefs spoil the broth. I am still scheduled for April 16th and I am 90% sure I will go with a mechanical given that this is my second operation. I will have to call you soon and talk with you about my meeting with Dr. Colvin of NYU. He's the guy who is the expert in minimally invasive cardiac surgery. My mom and I met with him this past Thursday and he is a real hoot! He has more confidence than George Bush! However, as a reop case, I don't think I will go with him. His demeanor is hilarious. He operates day and night. He was still operating at 7pm.

Talk to you soon,

Greg

 

[John Cochran]

Synergraft aortic valve for me in April

Synergraft aortic valve for me in April

Sounds like we are in a similar situation. My aortic valve is both stenotic and leaky, and probably can't be easily repaired, so I'm going with the Cryolife aortic Synergraft valve. I live in Minneapolis, and have corresponded with Dr. Zehr at Mayo, but am trying to arrange to have my surgery done here in Minneapolis at North Memorial Hospital.

My academic background was in biomedical engineering, and I believe that the Synergraft technology is well founded in both theory and limited experiences to date with those who've received the Synergraft pulmonary valve during the Ross procedure.

My surgery hasn't been scheduled yet, but we're hoping for late April. If you'd like to chat more about this feel free to email me at :
[email protected]

Good luck to you!

 

[Jennie]

Folks,

Thanks for your encouragement, plus the advice with the family matters! I really appreciate this. Ron, I've made a list of stuff that I need to delegate (bills, mail, etc) and have everything ready to give to my dad, probably next Wed (after Easter). That will be a big load off my mind. Sylvia and Nancy, and others (Gail, JenniferO), you are sweethearts. I have a feeling I'll be leaning hard on you all in the weeks after my surgery!!!!

Otherwise, I'm counting down the days, thinking that in 4 weeks I'll be on the other side, in pain, with a big fat scar, and no turning back. Thing is, I go from calm, to worried about WHY I am calm, as that must mean that I am really not fully cognizant of what I have signed myself up for, and then I start thinking about what indeed I have signed myself up for, and then I start to freak out and say WHAT am I DOING....

I had a funny dream last night (though it wasn't funny at the time!!): I dreamt that I went to my cardiologist, and most of his staff and office was cleared out to make way for a big money-collecting table and three new hires to collect payments (can you tell I've been paying too many doctor bills lately??!!) So I went in to see the doc, who did some kind of brain scan on me and determined that I have a heart problem AND some sort of brain problem, and said I would need brain surgery too. Then he said, no, not both, just the brain surgery, and THAT would fix both my heart and brain problem. SO, I left, paid the money people, and came out VERY confused, thinking NOW what do I do???!!! It was "almost" nice to wake up and realize there's "only" heart surgery on the agenda!

John, I'll be in touch! I am very interested in discussing stuff with you!

-Jennie

 

[Mara]

Jennie
I don't think being calm is abnormal. I was extremely calm. I freaked out the day the cardio said it was time to do the surgery and then freaked out 2 days before. That was it. I had known for a long time, probably since I was 6, that I'd being have surgery one day. And my pediatric cardio predicted I'd been mid-30's (33). So heck, I was ready and felt pretty happy about the idea of finally feeling better. I had been so fatigued for the year prior.
I think calm means you know what you're in for and feel at ease with the thought of the surgery.

I am really excited to hear how your surgery goes. i know you will do just fine! Then you'll be all "high-tech" like the bionic woman!

-Mara

 

[Jennie]

Hi Mara!

Calm, yes, maybe you're right! In general, I am in a very good mood, not what I would expect, other than a few staring-off-into-space moments of pondering every day. I've known about my valve since I was 12, but was never told about surgery (did my mother even know?) until I went to my first non-pediatric cardiologist (without my mother) when I was 22. He told me 10-25 years, so I decided I'd take the 25, and that would put me at 47 or 48 for the surgery. But, oops! only made it 12/13 years! BUT, I think the reason that I'm not as upset over this is that I have TWO options - main and backup - that I am at peace with (repair/homograph), and not the mechanical that I was threatened with for all these years and that I do not want (no offense, of course, to you wonderful "clickers" on this site!)

SOOO, yes, I'll keep you posted! Send me your email if you wouldn't mind?

Step aside, Jaime Sommers, it's.......

Jennie the Techno-Woman!

ps. I finally found your wedding picture! Beautiful!!

 

[Zazzy]

Good luck Jennie! I will say a prayer for you that day!

Take care,
Zazzy

 

[Jean]

Prayers with you!

Prayers with you!

Jennie, Good luck to you. I think you are doing great. The panic comes and goes and then on the last day, a great calm just came over me. Is the Cryolife valve the one that they think will incorporate your own cells into it with time? I have been interested in that...if...I guess its when I have to have a second surgery that is what I would like to go with. Since I'm only 2 years past my first surgery, I hope that is still a long time away. good luck to you and please keep us posted...come back just for support.

 

[JenniferO]

Jennie:

I am just checking in since this has been my first week back at work (7 weeks post-op today).

I am glad to hear you have made the decision you feel most comfortable with. That is the most painful hurdle to get over and everything flows much easier after that. No doubt comtemplating putting yourself on that operating table is terrifying and there is no getting past that; we all try to lend the best support we can, and all the people from this website and a few other patients I met along the way were so invaluable to my support as I walked that path up the mountain. I remember laying there on the operating table at Cleveland; my 3 IVs were in and I and the operating crew waited an hour for the anesthesiologist to show up to start everything. I never knew what the delay was, but I had my personal CD Walkman on and was listening to my Diane Tusek meditation tape. (I was allowed to keep the tape throughout the surgery and when I awoke in the ICU all those hours later it was still playing). I had just met Dr. Cosgrove and had every confidence in him; but he had been able to give me a 95% chance on the repair I needed.

Family will be reassured by all the research you have done and the knowledge you have about the procedure and the valve options.

I had mitral valve repair rather than aortic, so may not be able to offer help on technical aspects, but I am here if you need emotional support.

I will remember you in my prayers.