Johnny Stephens Update #2

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mrsgeek

Update from Kathy his wife:

The good news: the heart is still doing fantastic. Cardiac ouput is great. Blood pressure is great. Echo looks great. Fantastic, superb, etc.!

The bad news: He is still in the ICU on the respirator!

He still has fluid in the lungs. Apparently, his radiation treatments 22 years ago damaged the lymphotic drainage system. There is no treatment for this, it just takes more time to drain and we have to wait for Johnny to accomplish this.

They cannot take the tube out because his pulmonary pressures are too high. When they tried to wean him off nitric oxide, the pul. pressure shot up 30 points today. They are telling me that due to this high pressure, he has less ability to oxygenate his tissues and drain his lungs. If they take him off now, his lungs will fill up, he could get pneumonia, and they would have to just put him right back on. This problem coupled with the lung drainage problem is a very large problem indeed.

He will be on the respirator for the weekend. On Monday, they are calling in the head of the Pulmonary division, Dr. Ralph. They have a treatment for just such a situation but it is a drastic step, and has side effects, but will get him off of the respirator. It is called Flolan (sp?). Only Dr. Ralph can approve it. It is delivered by pump, and it is something they can send him home with! They are hoping that by Monday that he won't need it.

The good news to this issue: they say that because of this valve surgery, they caught the pulmonary hypertention early so that they can prevent ARDS (Acute Repiratory Distress Syndrome). Other than these instruments that are inserted into his neck right now, there is no way to detect this problem. So most never find out until it is too late and can lead to the need for lung transplants.

This is the positive side I must cling to!
 
..and thank you for your kind replies and support!

I take comfort in the University of Washington Hospital. He would have been transfered to UW if he had started out anywhere else in the state (they are the only hospital in our state that has the Flolan infusion treatment).
 
Thank you for the update.

I will keep the both of you in my thoughts and prayers.
This is a big bump in the road and hopefully with some time, it will resolve itself.

Please let us know what happens Monday. I know this isn't what either one of you expected.
 
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Hi Kathy and Johnny-

Things are difficult right now. It sounds as if Johnny has some terrific, caring doctors who will perform the necessary miracles. They will help Johnny get over this bump.

You can feel so alone when these things happen, but we're all here and are your buds too, Kathy, so feel free to check in here when you feel the need.

I have been in a similar position after Joe's last surgery when he had to be readmitted for Serum Sickness which landed him in the ICU for a week. He was very, very sick, and I wasn't sure he would make it, he wasn't sure either. The worst thing was that Serum Sickness is rare, so some doctors hadn't seen it for 17 years, and some never. He had a huge team of specialists caring for him. And thanks to their brilliance and perseverance, he got better. It took some time and it set his heart surgery recovery back by several weeks, but he's here and his heart is doing well.

My thoughts and prayers are with you both.
 
Dear Kathy - so sorry but so glad - Sorry he is having such a time, but so glad that they found out and can prevent later problems. Both of you are in my prayers. Guess he's kinda still climbin the mountain, but we know he will be over it soon. Ya'll just hang in there. Please give him my best - and keep a bit for you. God bless
 
Kathy,

Thank you SO MUCH for informing us of this complication from Radiation.

I too have been treated for Hodgkins Disease with Radical Radiation Therapy MANY years ago. I will be discussing Johnny's case with my surgeon BEFORE my AVR. Fortunately for me, I did not have such a complication after my bypass surgery, although I did develop 'walking pneumonia' 3 weeks post surgery.

Do you know how wide his radiation field was across his chest?
As I recall, mine was fairly narrow and long.

'AL'
 
Kathy,

So sorry to hear about Johnny's bump in the road. It seems we all have them, not necessarily the same bump, but one none the less. Hopefully Johnnys hospital stay will end soon and he can go home.

You and Johnny are in both Tina and my thoughts and prayers.

Chris
 
HANG IN THERE JOHNNY !

We're all pulling and praying for you.

Best Wishes for a full recovery.

'AL'
 
hi kathy!
i am so sorry johnny is still in the icu. it can be so distressing when things don't go as expected. fortunately, they have discovered his pulmonary hypertension and can take care of that problem.
it must be so upsetting to you and johnny though and i want you to know that we are here for you anytime.you are in our thoughts and prayers. please let us know what dr. ralph says and how things progress.
God bless,
sylvia
 
Johnny and wife-
Well, that's a drag. But, better to get over it in the hospital and know you are well taken care of.

Get better soon.

-
 
Please let Johnny know that lots and lots of thoughts and prayers are coming his way. My son Clay had a number of bumps in the road during his recovery, so I know what it likely feels like for your family. Very best wishes to all of you!

--John
 
I'm sorry to hear Johnny wasn't doing so good. At least the doctors caught it. Tell Johnny I wish him a full recovery. I will have him in my thoughts and prayers.
 

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