Some of you have asked how my son is doing and when I checked I see that the last time I did an update was when he was getting transplanted. For those of you who have no idea about the history in this I will give you a brief synopsis. A year ago, on October 6th my son had sudden unexplained heart failure. He and his wife and twin four year old boys live in California so we rushed out there. He had died twice on the table but was brought back and to survive they had to implant an LVAD, a left ventricular assist device. During the surgery he had a complication and developed compartment syndrome in his left arm. Tests showed that his heart was recovering after a few months and the doctors thought they could remove the LVAD, but in February when he went in for surgery they found his heart was still too damaged to remove it. After that, and much wrangling with insurance companies he was listed for a heart transplant. That came July 5th. With his new heart he was no longer encumbered with batteries and cords that he lived with since October.
Now the new update. Post transplant all tests showed his new heart was doing great, no infection and no rejection. But his BP was spiking and his pulse would race for no reason. He had those symptoms prior to his failure so they did many more tests in order to protect his new heart. The tests revealed an extremely rare tumor on his adrenal gland. This tumor was estimated to be in his body for nearly ten years and was the cause for his heart failure, by forcing the adrenal gland to interact in a way with his heart that wore it down over time. More surgery. This time to remove the tumor. That surgery happened last week and was successful. He is now recovering from that and no longer is on any blood pressure meds at all.
There is only one more hurdle. Yeah, only one more after having his chest cracked open three times and his abdomen cut open once. He had a consult with a micro hand surgeon who is confident that after surgery on his arm he can gain back most of the use of his hand.
Oh, there is one more hurdle. To try to get out from under the mounting medical bills. There is a virtual walk on the 16th. I am not asking for anything, but am including a link. Thank you for everyone who over the past year has offered their concern, thoughts and prayers. It hasn't been an easy twelve months but the light at the end of the tunnel is becoming brighter every day.
10/10/11 - I want to thank everyone for their good thoughts and wishes. I especially wAnt to thank anyone who has made a donation and anyone who has posted the link to Facebook. Maybe there is a philanthropist out there somewhere.
What wonderful news that your son is doing well, I can't imagine how it must have felt to have one piece of shocking news after another.
I hope that the hurdles are now behind you and your family and your son can focus on regaining his health and you can all enjoy the time spent as a family.
Thank you so much for this update. What a "marathon" he's been through and my prayers continue to be with all of you.
I'd not even thought that there might be a cost ... here we would have all of that surgery and care on the National Health Service (NHS) so there is no charge at point of need. If something needs to be done then it will be. Thank you for the reminder that others don't have this privilege. Do please keep updating ... and appreciate the link.
They have found the culprit.. thank you Ray for the latest update..now we hope this is the end of bad news and hope your son will be able to live a normal life again. wishes and prayers are always with you and your family.
@rayswrld You and your family will be in my prayers as you come down home stretch on this marathon! So glad to see the answered prayer thus far. God's speed!
i'm so glad to hear that there is good news for your son and family! I, too, will go check out the link and send all positive thoughts and prayers for a complete recovery.
omgosh what a big thing for him and your family to go through, i thank the NHS every day for free medical care as two of my children have longterm medical conditions. I will share the link - and i pray your son can get back to health and lead a normal life again x
You have had an incredible year coping with all of that but it is heartening to hear that he is doing so well. All the very best for continued good health to him.
My goodness. I have been following this story from the start as I have a young son with a heart condition. Your son has certainly had a rough road but I am so glad they have found the cause and I hope he can now improve in his health. Good luck for the walk & all the best in the future, Thankyou for keeping us up to date xx
I'm so glad to hear things have been looking up. Best of luck with the virtual walk and getting through the last of the hurdles. I can only imagine how much closer this has brought you all.
Thank you for spending the time to give us an update. What a year you and you rfamily have had. As others have said we thank our blessing for the British NHS no matter what criticism it gets. I hope all our positive vibes will help you along the road to recovery.
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I hope that the hurdles are now behind you and your family and your son can focus on regaining his health and you can all enjoy the time spent as a family.
I will go look at the link now.
I'd not even thought that there might be a cost ... here we would have all of that surgery and care on the National Health Service (NHS) so there is no charge at point of need. If something needs to be done then it will be. Thank you for the reminder that others don't have this privilege. Do please keep updating ... and appreciate the link.