Last AVR 5-9-09 another on 1-25-10 following stroke on 1-16-10 PLEASE READ

[KWRice]

Kenny Wayne has been sick on and off since his last AVR just 8 short months ago. We have taken him to the hospital on several occasions but no one was ever able to find anything wrong with him. Friday night he said to me, "I just don't feel right, I feel sick like before my surgery, I am scared to go to sleep." I tried to take him to the local ER but he didn't want to go as they never find anything wrong with him and he didn't want to waste the time to go for nothing. Sat, Jan 16, 2010 he suffered a stroke. He was taken to Halifax Regional Hospital via rescue squad where they were confident that it was a stroke, they administered a drug called APD and air lifted him to MCV, this is where his AVR was done so we requested that was where he go. The drug seemed to work, his speech started to return, and through the night he could finally feel when I touched his right arm or leg however he has been unable to move them. His cardiologist was called in to do testing on Kenny Wayne as I explained all the trouble he has been having with night sweats and spiking fevers and wasted trips to Halifax County ER. After a few test we determined a few things, the stroke affected the brain in 2 areas, he has new vegitation on his heart, and his new valve is leaking on 2 places! He is very weak, he is very tired, he is partially paralized, this may be temporary, and he just turned 27 years old on Oct 11, 2009. If ANYONE out there has any advise to offer, knows of someone that has been in this situation, can offer any comfort at all PLEASE respond to this post. I have been his girlfriend for almost 4 years now, he was once so healthy and full of life, you would have never known we would face this. He was always on the go, I use to beg him to slow down some and smell the roses but there was always work to be done. I am worried, I am confused, I am also 8 months pregnant and highly concerned about the outcome of everything. Any help is GREATLY appreciated!
Thank you,
Stephanie

 

[Ross]

Hello Stephanie, sorry to hear of all the troubles. It's probably too soon in the ball game to make predictions about outcomes, but I pray it's only temporary. I don't know if you have authority to dig into his medical records or not. He'd have to approve you and most likely you'd need power of atty, but I'd start asking a lot of questions, especially why his valve is leaking in 2 areas. While I'm typing, I forget what valve he got, so pardon the question, but was he on Coumadin and if so, was he staying in his prescribed range?

Ok, read his profile, still don't know what valve he got. Endocarditis may have never been completely knocked down? It may have started infecting again or his tissue around the sewing cuff simply isn't holding very well or even a botched job by the surgeon. It's really a guessing game that no one can answer but those who provided/are providing his care. It would be important for you or another significant can be an appointed advocate and have access to his records.

You need to try not to stress out too much. 8 months pregnant, you don't need a premature delivery on top of everything else. Try to remain calm and see about learning whatever you can from the staff and take notes too. Let us know. Sorry I'm not more of a comfort, but simply don't know what to tell you at this point.

 

[KWRice]

It was the aortic valve that was replaced and he has told the Dr's to speak freely in front of me so I am pretty well up to speed with this surgery as well as the previous one. He did still have infection after the previous surgery as he was sent to a rehad facility for 6 weeks as he had a pic line in for his antibiotics. They claim the leak is in 2 areas due to a vegetation that split off into 2 pieces causing 2 leaks. I am trying to determine how we can keep this from happening again? i know that is a question I will need to ask the surgeon however I am just praying there is somone out there that either has been in a similar situation or knows someone that has that can offer some relief, some answers, I really need to read a success story, I need some faith. I am concerned that he may have a stroke during the surgery or the surgery will slow his progress from the stroke, or possibly worse. He is so weak, he is so tired. I know how hard the last surgery was and he was strong and in good spirits and mind where he is not this time.

 

[Nancy]

Stephanie-

This is a terrible thing for your dear Kenny. He is such a young man to be in this much trouble. But this may be one of the most important things for a good recovery. Right now, he has several pretty serious things going on. It is a good thing that some feelings returned after his stroke. It may take some time for a better recovery as the body resorbs the blood from the stroke. So time is important here.

If he has vegetation on his valve/s, that all has to be evaluated. We have members here who have had endocarditis with vegetation and survived and did well.

It may be that he will need surgery for the vegetation. I am sure his doctors will be extra watchful and careful with him in the coming days, and he will have all sorts of tests to get a plan going for his treatment.

We have also had many members here who have had multiple devastating problems and have recovered from them.

My own husband did this several times, and he was a LOT older than Kenny.

So you have to put faith in his doctors at this point. They have the ball and I hope they will run with it and help Kenny.

You both will be in my prayers. Never give in and never give up. Hang tough and keep up a positive image for Kenny so he stays strong. You can cry at home. Keep a smile on your face for him.

 

[Ross]

Never give up hope! I'm writing to you and for all medical purposes, I'm not supposed to be alive today to type this to you. The human body is amazing at what it can put up with. It's not a pleasing experience to the person it's happening too, but rest assured, it can be endured. Nancy's husband is another that went through so much and was at deaths door several times, to turn around and come back. You must believe in your heart also, that it is possible.

 

[dick0236]

Stephanie, my prayers are with you both. I also had a stroke that was called a CVA (CardioVascularAccident) as a young man (age 38) and seven years after OHS. The true cause of the CVA was never determined. I recovered with NO residual effect other than a vision problem which I have pretty much overcome. With the newer "after stroke" treatments available, there is much hope that his recovery will be complete.

 

[Ross]

I too, had a CVA just after my first surgery. A small chunk broke off and found it's way to my brain in the vision department also. No lasting effects from it either.

 

[Maryka]

My thoughts and prayers are with you!

By the way, I think Ross had asked you if the new valve was a mechanical valve (requiring a blood thinner every day) or other type of valve that does not require a blook thinner. That information would be of interest to all of us.

God bless you both!

 

[KWRice]

Sorry, he did and I failed to answer. Kenny Wayne actually received a human valve. He was taking 81mg of asprin a day but not a prescription blood thinner.

 

[river-wear]

Hi Stephanie,

I'm so sorry you and Kenny are going through all of this at such a young age (or any age really)! Youth is on his side and it's amazing what the body can do. I'm sure he will be anxious to see your new baby in a month and that will give him strength to fight when he needs to.

Best wishes to both of you.

 

[Jkm7]

I'm sorry I can't offer helpful information but want to send you both all my best wishes. Hope things go well and he makes a good recovery. Best of luck with the baby. Remember during all that is happening to Kenney now, you need to take of yourself and the baby.

As you learn more, hopefully some here can give more advise.

 

[Danny]

Stephanie, im sorry to hear this news...but prayers will be coming to you and KW.

 

[Arlyss]

Dear Stephanie,

I am so very sorry to learn what has happened to Kenny Wayne. I want to offer you comfort, hope, and courage. We live in a day when there is so much that can be done.
I went through something like this with my husband. He did not have endocarditis – but his stroke was similar to that caused by endocarditis, which can send a shower of particles to the brain. My husband’s stroke hit multiple areas on the right side of his brain. His mechanical valve had to be replaced – there was no choice. There were risks, but surgery was the door to the best possible future. Because of going through that door with his doctors, I still have him today.

I know how hard it is to see him affected by this stroke. Your beloved Kenny Wayne is still there, and his brain is a wonderful, awesome part of him that wants to come back. Feeling is already returning! Kenny Wayne is young, and his doctors will focus on doing everything they know to help him.

If it would help you to go over anything with me, don’t hesitate to send me a private message.

My heart is with you and Kenny Wayne,
Arlyss

 

[Eva]

Stephanie, I do not have any helpful information to share with you, but would like to offer my prayers and good wishes to you three! and to all Kenny's family, and to repeat what was said above that Kenny is young and will fight this strongly and will enjoy to see the baby next month. Keep us posted.

((Hugs))

 

[Jessie316]

Hello Stephanie,
I can say I have sympathy with you. My mother had a stroke in preparation for her first AVR however 3 monthes later she had her AVR and almost 6 monthes from the date of her stroke went back to work. She does have residual with extremity pain, and vision issues. I am an Occupational Therapist and all I can say if they have not started OT and PT they need to start right away. My mother had no feeling in her arm and leg and no coordinated movement but with me and the therapist in the hospital and home she was able to complete blood draws on other people at work 6 months later. Stay with them and push don't be afraid. You guys need to be your own advocate. Don't be scared to ask questions and push hime to use his extremities as much as possible for the best return. Keep us updated. HAng in there and definately take time for you.

 

[nngbwh]

I am very sorry to hear you are going through rough time. Hope things get better.

 

[hall]

I can not offer information but you all are in my prayers.

 

[drivetopless]

Stephanie- Hugs to you and Kenny Wayne.

 

[Lily]

Stephanie, I'm very sorry to read about what you and Kenny Wayne are going through; and I'm hoping for the best. I also hope that the kind and empathetic words I have read here in reply to you will bring you some hope, some encouragement. Best wishes .

 

[Praline]

I am so sorry to hear of Kenny Wayne's problems. I will keep him and you in my prayers. Keep us posted please.