Bad news today

[aussiemember]

Glenda,

Hugs and best wishes - Jeanne

 

[gijanet]

Oh, Glenda ((((hugs))))

Oh, Glenda ((((hugs))))

I can't think of a sweeter person to get such awful news. I second Al. Get another opinion. I know it may seem weird consulting a pediatric cardiothoracic surgeon, but as JodyC, just found out, Dr. Bove does specialize in working miracles and working on very small organs. He was able to place a 25 mm valve in Katie when she was four years old ( course I know you know that as you were here rooting for us! but I really think you need to go for the best, and Dr. Bove does not charge for an opinion.

Whatever you decide, we will be praying and here for you. Much love. Janet

 

[susieq14]

Sorry no technical advice just more prayers and best wishes to you as you deal with this disappointing news. Don't beat yourself up for your first post - you reacted like anyone would. And now like you said you're ready to fight - so best wishes!

 

[perrypiratesdad]

May God bless you Glenda. Keep up the fight and I will keep sending the prayers.

 

[Faye]

I don't know what to say other than my heart and soul hurts for you. You will be in my thoughts and prayers!

 

[ALCapshaw2]

I received some bad news today. It was time for my echo and while the technician was doing the echo she called my cardio in and he was watching her do the echo. Now mind you I have been feeling bad for about a month, just not up to par, in fact feeling the way I did before I had the AVR. Well, he said my aorta valve is shutting down again. If you remember I had to have a pediatric size tissue valve put in because the surgeon said I had very small internal organs. It's almost like a birth defect, my organs didn't grow with the rest of me when I was small. That's been four years ago. I sure was praying it would last at least 10 years. He said this time they would be an adult size in but it would be a tougher surgery because they would be cutting away tissue around the heart in order for the adult size to fit. I wonder why he didn't do that the first time! I knew deep down that I was having problems. Just this last month my fatique level has been unreal. I get winded really bad. I break out in cold sweats all the time. My heart beats so hard that I literally think it's going to come right out of my chest. Last week I was weed-eating and my chest started hurting so bad that I nearly crawled in the house.

Glenda, your question about WHY didn't your surgeon put in "an adult size" valve the FIRST time is a Good One!

Jody C. was in a similar situation. She had her First Surgery done locally. When the Surgeon "discovered" her Aorta was only 15 mm, he just sewed her back up and refered her to Dr. Bove, the pediatric specialist at the University of Michigan (and NOT to Cleveland Clinic in her own state) because he realized he was not up to the challenge.

Bottom Line: Not all Heart Surgeons can deal with Complex cases.

You know that the common theme here on VR.com is that when you have a Complex or High Risk situation, you need to see a surgeon who has LOTS of EXPERIENCE with what YOU need.

Your Cardiologist did his job by recognizing and diagnosing
your condition. He probably knows the Local Surgeons fairly well, but does he know the Top Surgeons nationally for your condition? How many Valve Patients do our Cardiologists see? Maybe 10% of their total number of patients.

Here on VR.com we have around 1500 currently registered VALVE Patients representing all regions of the country. Many of our members are some of the 'worst of the worst' situations and have gone to some of the Best of the Best Surgeons.

When you (we) have a condition that can ONLY be treated surgically, it makes sense to me that the Best answers will come from Surgeons who are experienced with our conditions.

From information I've gleened from VR.com, I've identified and contacted some TOP Rated Surgeons (out of my local region) for their opinions. I've learned a LOT from these consultations.

That's why I'm suggesting you contact surgeons who specialize in what you need so that you can make a truly INFORMED decision about another surgery BEFORE you are in Critical Condition and needing to select a (presumably) local surgeon from a hospital bed.

All I had to do was call their offices, tell them my condition, send them my latest test results (and films) for their review, which they gave, either through an office visit or via telephone. NO REFERAL was needed from another Doctor.

My Cardiologist is most familiar with local and in-state surgeons but has indicated he would be glad to consult with any surgeon whose opinion I wanted. I expect your cardiologist would have a similar willingness to consult with any surgeon who could offer you hope for a good outcome.

To my mind, this time you have before your next appointment with your Cardiologist would be a good time to 'get prepared' by consulting with some of the experts that have been recommended.

To my mind, that is your best HOPE for 'getting it right' the NEXT time.

'AL Capshaw'

 

[Glenda]

Al, I think I'll do just that. I see my cardiologist every Wednesday when I volunteer in ICU. I'll mention it to him and I'll also see if I can get my records. I always get my report from my oncologist but I've never asked for it from my cardio. Then I'll give Dr.Kouchoukos a call in St. Louis. I'm only five hours away from St. Louis.

Thanks for all the advice.

 

[Mary]

Al, I think I'll do just that. I see my cardiologist every Wednesday when I volunteer in ICU. I'll mention it to him and I'll also see if I can get my records. I always get my report from my oncologist but I've never asked for it from my cardio. Then I'll give Dr.Kouchoukos a call in St. Louis. I'm only five hours away from St. Louis.

Thanks for all the advice.

Glenda,
I'm not trying to put the cart before the horse, but when I was in St. Louis for my replacement with Dr. Kouchoukos they had rooms available on the hospital campus for family. There was a charge, but it wasn't too much.
His office is in the Missouri Baptist complex and is right off I-270 and the junction of I-40 East.

 

[Kathleen]

Glenda Congratulations on your wedding anniversary.
I had a mitral repair that lasted 5 years and at the time we did mechanicals in both the aortic and mitral. I never once thought why did it only last 5 years I thought great I got 5 years and then the aortic could announce itself. It takes a bit to gather the guts to go in again but with great support you will be glad to get the worry out of your mind and the mindset to recoup. Best of luck and positive wishes to you
Kathleen

 

[Susan BAV]

Glenda, you have my very best wishes that things will go well for you .

 

[Harrybaby666]

Hugs To You Glenda!!!!

Hugs To You Glenda!!!!

I read the post I sent yesterday and I thought to myself, how depressing! I should have waited until today to tell everyone. I did sound like I was giving up and I think yesterday I kinda of felt that way but TODAY, TODAY is a new day and I'm not going to give up without a fight.

Harry, I'm so sorry you aren't feeling better. Hugs and prayers are coming your way. You are such a sweet man. I can tell by your posts! I wished we lived closer so we could lean on each other more. I would be there for you in a heart beat. Is that a pun? No, it's the truth.

Thanks again guys, you all are the best! !

Glenda, I am sooooooo glad that your fighting the fight and not giving up, although I know realistically, people do get to feeling down in the dumps from time to time, no matter how positive we are...I certainly know I do....Please know that we are all fighting the fight right along with you, so if you gets to feeling down, remember to let us know so we can help you through it in prayer and support. I do so badly want to go on a trip to meet VR members in person, and this is what's keeping me in College, so that I can eventually go see a few people. ( I have a cousin who lives 90 miles from you in Marshfield, and a friend who lives about 4 hours south of you in Arkansas, and I know if I went to visit my cousin, I would drive over and meet you, God willing and the creek don't rise). (((((((((((((((((((((((Tons of Hugs))))))))))))))))))))))))))))) Harrybaby

 

[Glenda]

Oh Harry, that would be wonderful. Where at in Arkansas does your friend live? We have a old log cabin on Table Rock, real close to Eureka Springs. If you ever come to visit your cousin please, please give me a call. We could even meet halfway. Just let me know.

Hope you are feeling better.

 

[Harrybaby666]

Well Glenda....This is hilarious...but....

Well Glenda....This is hilarious...but....

My friend Armand, ended up moving to Coweta Oklahoma due to financial issues, and now, he's moving BACK to Canehill Arkansas right back into the same house that he lived in before moving to Oklahoma...he's moving back, because he was getting too much flooding and Tornadoes (VERY similar to what I got here in NH yesterday when 2 tornadoes hit us), this will make his 10th move in 16 years....It would be fun I think to go visit him and surprise him....
Where is Table Rock and Eureka? Is it any where near Canehill, which is in the North West part of the state?

I would most certainly get ahold of you before I even left for Missouri to arrange to meet, but I would also like to find a way to meet Ross somewhere along the way. I guess I really had better get going on School so I can actually afford to do something. (((((((((((((((Hugs))))))))))))) Harrybaby

As for feeling better, I had an EGD done yesterday and they found nothing, Dr. Maher thinks that stress is making me sick, but I am wondering if I am not having another bout with Pancreatitis...I had to be hosipitalized for a week 4 years ago because of it, and I am wondering if I am having another round of it. I cannot hardly eat, and if I do have a meal, I feel soooooo nauseated about 1 hour after and most of the time now, I just cannot eat.. We will keep fighting the fight though.

 

[Praline]

Glenda,
I will keep you in my thoughts and prayers.

 

[twinmaker]

Glenda, I'm so sorry to hear about this. Please know that I will be praying for you each day. LINDA

 

[marky]

Glenda..
I am not sure when you started this post..but know that I am praying for you

 

[Sherry]

Glenda, I am so sorry that you have to deal with yet another medical issue. You have certainly had your share of hardship. Many cyberhugs are coming your way as you face this upcoming surgery. Please keep us posted.