I can't believe it!

[Birky]

valve

valve

Thanks for your reply. Yes the grandkids do keep me busy especially the 6 yr. old twin girls. Identicals and are full of pep. We were talking about this valve last night and I guess he made the right decision. I didn't want to have to take Coumadin, but I didn't want another surgery either. I can't tell you how many people have come over and told me "how much better I look" I know I didn't feel "right" at least a year before the surgery which I blamed on stress and age but didn't realize that it showed so much. My kids were getting really worried about me when I started avoiding doing things that I did before. They are happy that it is done and they have their regular Mom back. Have a lot more energy and coping abilities. Looking forward to going fishing, eating and relaxing in Wisconsin for a week. Love fishing. I have been going to the same area since I was 2. Gotta get back to work. Took a break to answer. Marcia

 

[John S]

How you look

How you look

Marcia,

I'll cheat a bit here at work and answer you back! Yes, people keep telling me how much better I look, and how much "color" I have now. Makes me wonder how awful did I look before?

I could never get anyone to go fishing with me. My big thing was camping, but now the kids are on their own and scattered.

Have fun in Wisconsin!

 

[Sherry]

Hi, Jim,
You've gotten lots of great insight already, but I'll add a bit more. I'm 39 and was 33 at the time of surgery. My cardio was going to repair the mitral valve, but after six hours of surgery, I was still leaking, so he put in the St. Jude's instead. I didn't have a choice, but now after six years with it, I see the coumadin therapy as a minor nuisance (most of the time). Sounds like you're doing all the necessary research, plus you're in great shape physically. Best of luck with your decision, and by the way, the little one is adorable

 

[chilihead]

Thanks Sherry,

Glad to hear you doing well. I'm trying to come to a decision in the next 4-6 weeks on valve choice. The cutie in the picture is my daughter, Sadie. She is now 3 1/2 and has quite a bit more hair. We have another one due in a few weeks. I want to make sure I'm around to see them graduate from college (and pay for it).

Regards,

Jim Johnson

 

[greggo32]

Dear Jim,

I'm glad I was able to comment about pacing yourself prior to surgery. I was referring to any exercise that is above and beyond conditioning. Just stay in good health and don't push yourself. You have a lot coming up (new child and new valve). I see you have had a tremendous amount of feedback and that is great. Remember that all of the feedback is from a self-selected audience. You make the valve choice based upon your needs.

As for your question about my repair. I had 5 good years, 2 minor-moderately symptomatic years, and 2 moderate-severely symptomatic years. Overall, it lasted 9 years ('92-'01).

All the best and don't get too obsessed with all of the advice. You must trust your MD and surgeon.....

 

[Tom F.]

I would add to the discussion about the Ross Procedure. If you have not yet discounted it I would urge that you contact the International Ross Registry in Missoula Mt. for the most recent data about re-operations etc. They can also recommend people that have had significant experience performing the Ross. I had a David-type valve repair in Dec. of 2002 by Dr. Robert March at the Rush Heart Institute in Chicago. A Ross was my second choice. Dr. March has performed over 100 Ross's, so he might be a good choice. He is also one hell of a nice guy. My surgery was done on Dec 20th, I was released on Dec 24th, Christmas Eve. The next day, Christmas, he called me at home just to see how I was doing. Can't get much better than that.

 

[chilihead]

I'm off to see Dr. Ryan, The local Guru of doing the Ross procedure, next week. I figure if anyone can talk me into it, he can. Following our discussion I have to decide on the valve jobe of preference. My new baby was born two weeks ago, so that hurdle is over. Now if I can get myself fixed up we can move on and live happily ever after. I hope!!!!!!!!!!!!!!

Thanks to the forum members for all the information and support.

 

[nadi]

Good luck with your appt next week. Keep us posted.

Enjoy that new bundle of joy.

 

[Nancy]

Hi Chilihead-

Congratulations on your new baby! nd best wishes with your appointment. Let us know how it goes.

 

[sylviayasgur]

hi jim!
congratulations on the new baby! what did you have? name??? how is mom doing? and baby?
you must be thrilled... i remember that feeling... swollen heart (but for good reasons, not bad).

please let us know how it goes with dr. ryan and what he says.
wishing you all the best, sylvia

 

[Susan Allen]

Hi Jim,
Congrats on the new baby. I am in the same boat your in. I go see the surgeon on Mon.. Like you I am interested in the Ross Procedure. If you get a chance you should read www.hsforum.com/stories/storyReader$1473. Don't read the depressing story about the little boy Adam (I didn't). It explains the procedure in layman's terms. It gives pros and cons - patient selection etc.. It is really good. I can't wait to get as I call it stage 3 over - surgeon - date and valve choice (Stage one echo - stage 2 heart cath.).
I also have researched backup plan the Carpentier Edwards bovine pericardial valve. Type this in a search engine and read anything by the Cleveland Clinic. Very good reading. Like you I am sure I will probably go for the mechanical (some of the Coumadin stories are pretty scary - although I have to keep it in perspective that everyone is different.
I am also in Texas and am going to the Heart Hospital of Austin. Here they have a doctor who has supposedly performed the most Ross in the country. I was very impressed with the doctor who did the heart cath. as soon as I was done he spoke to me and asked me if I wanted to speak to a surgeon - I told him yes and he had one call me within 30 minutes in recovery to discuss when I could come in. The hospital was also very impressive - so I do feel good about going there.
Give that baby a big hug for me.
Let's keep each other informed.
Susan Allen

 

[chilihead]

Susan,

Thanks for the info. I'll le tyou know what I find out Tuesday. I was out for a bike ride last night with my local cycling club and I believe I'm starting to feel the "symptoms" of a person with a bad ticker. I rode hard and came in first place but really felt weird. Maybe it was because I was off the bike for two weeks with the baby business. What is the name of your surgeon? I'd like to see if he is by chance on my HMO insurance. The doctor I'm going to see has done over 100 Ross procedures but is not on my current HMO. If he convinces me that he can fix me up, I'll switch insurance during open enrollment in October and wait until it kicks in in January to get it done. Hopefully I can wait that long.

You can call ne at my office 817 935 4578 if you have question.

Here is a picture of young Jake Riley Johnson taken when he was about 2 days old at the hospital. He looks a lot better now and I'll get some digital shots in a day or so.

The password is JOHNSON
https://www.growingfamily.com/webnursery/babypage_view.asp?URLID=0S2B2L1U6L

Take care,

Jim

 

[bvdr]

What a darling picture! I am so happy for you. Now be good and sure you take care of you for them. Have a great day today.

 

[Susan Allen]

Hey Jim,
Your baby is sooo cute he looks chubby and healthy.
The surgeon I am seeing is Dr. Stephen Dewan. There is also Dr. John (Chip) Oswalt. Both are very experienced in the Ross. Both have travelled world wide performing the procedure.
Go to www.austinheart.com and click on for patients and it will list insurance and also has a number (512) 206-3636 if your insurance is not listed. You can also go to www.ctvstexas.com and there will be a list of surgeons (gives pictures and small biography), an area about insurance and articles you can read on the doctors I have mentioned above.
I have been doing so much research I can't find it off hand but the Heart Hospital of Austin was rated top in Central Texas as far as low mortality, patient treatment etc. Many of the doctors there have financial interests in the hospital. It is really impressive. The doctor who performed my heart cath. there was one of the founders and first president. He honored all my requests (2nd heart cath. so I knew what to expect and had a few things I wanted to be told in advance.) he recommended Dr. Dewan and told me he wouldn't hesitate to have him operate on himself or his wife. As soon as I told him in the cath. lab I wanted to speak to a surgeon he immediately got a hold of Dr. Dewan - and as I said earlier he called me right in recovery. Leaving this area for surgery would be out of the question for me. I have one at A&M and one at Austin Culinary and an 11 year old. My children and husband are my only family so I am hoping to coordinate everybody if they tell me I have time. I am also considering Dec. when my 2 oldest are on Christmas break and my husband's restaurant closes for 2 weeks. But I am not getting my heart set on it (sorry bad pun).
I see the surgeon this Mon. at 9:00 and hope to be back at work by noon or so ( live 70 miles from Austin and traffic is a joke). If you want to ask questions call me at work 1-800-759-8107(after 2:00) before you go Tues.
If not I may call you Wed. to compare notes.
Good Luck
Susan

 

[chilihead]

Susan,

I just read your reply. I'll try to call you on Wednesday. Best of luck!

Jim

 

[chilihead]

Well, time is passing and I must decide soon. I think the Ross procedure is in my future.

Regards,

Jim

 

[Susan Allen]

Jim,
Aren't you glad you made a decision???? My Ross procedure is (God willing) tomorrow. Can't lie I'm terrifed yet relieved. Soon it will all be over. Do you know when???? Are you going there in Dallas?? Did you solve you insurance concerns?? Who's doing it??
Sorry got a case of the nerves really bad - can you tell??
Good Luck
Susan

 

[chilihead]

I'm planning on getting Dr. William Ryan to do it at Presbyterian in Dallas. Where are you getting yours done. Feel free to call me at work. 817 935 4578.