Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Because no one is contributing much these days, I guess I will fill you all in, on whats happening with Jim's diagnosis and our request for a second opinion at John Hopkins. This was not an easy task, but it is finally done and was over nighted to JHopkins yesterday. They have a second opinion coordinator named Paul that guides you through the process, step by step. I think I told you all that we pulled all the forms off the net, filled them out and got all that was required from the doc's and lab results. Everything, pretty much was put on a couple discs. Jim had a CT scan yesterday, with dye and without, the results are on the disc that is in the mail to Hopkins. We don't know what they are. But I do understand that no diagnosis can be made with only a biopsy, a CT scan is required and he had not had one done. John Hopkins is the number one hospital in the country for ENT (ear, nose and throat) issues. I also want to tell you all for your information, they do not do this service for free, it is mildly expensive, but will be worth it to us in the end, no matter what they tell us. If Jim has to have the radiation thereapy, then we will have no other choice, but at least there will be no looking back and wondering if we did all the right things or not. JHopkings has state of the art laser equipment that can do what the people here in Binghamton, NY, say they cannot. This is why we are seeking another opinion, so that Jim doesn't have to endure the pain of radiation, which I have confirmed with his radiologist/oncologist is true.
If anyone has any questions in this regard, I will be more than happy to tell you what and how this is done. I know this is a PKD support group, but my PKD is on the back burner for now.
I hope everyone is doing well and taking good care of themselves as I am trying to do. I don't know where everyone is these days, perhaps getting ready for Halloween or enjoying this beautiful fall weather we are having. I am loving it, especially after moving back to NY from North Carolina and the heat that exists down there. We are a wee bit stressed these days and thank God Jim can still work as it has been his savior. today is his birthday and he doesn't know whats in store for him tonight, it will be a grand birthday, his 70th birthday!
Love to all ....
Norma
If anyone has any questions in this regard, I will be more than happy to tell you what and how this is done. I know this is a PKD support group, but my PKD is on the back burner for now.
I hope everyone is doing well and taking good care of themselves as I am trying to do. I don't know where everyone is these days, perhaps getting ready for Halloween or enjoying this beautiful fall weather we are having. I am loving it, especially after moving back to NY from North Carolina and the heat that exists down there. We are a wee bit stressed these days and thank God Jim can still work as it has been his savior. today is his birthday and he doesn't know whats in store for him tonight, it will be a grand birthday, his 70th birthday!
Love to all ....
Norma
Glad he is settling in ok. I did not know John Hopkins is the best ENT cancer center. He definitely needs to go where he can get great care. I guess all cancer hospitals are different in specialty. Thanks for giving us an update, you have a lot on your plate right now. Please do what needs to be done with Jim. I know he will pull through this. Remain as positive as ever, he should too. You would be surprised what the mind can play during the healing process.
Love, Jen
hope all goes well for you and Jim,you are always in my thoughts and prayers.
happy 70th to Jim
love and a million hugs to you both ((((((((())))))))
So glad to hear from you and to get updates.I pray for you that you will be able to get results soon so you know what direction to head in. Please don't forget to take care of yourself during this hard time, as Jim I'm sure relishes your love and support. Please continue to keep us updated...the more we know, the more we can pray for you specifically.
HAPPY BIRTHDAY TO JIM!!!!
Love and prayers,
Kelly
Yes.
You are crossing your "t's" and dotting your "i's".
Whatever ever happens, you won't feel that "we shoulda done this."
Have you checked to see if there is a DailyStrength "support group" for Jim's condition?
I would think that there might be one.
Have a great birthday celebration with Jim!
Peace and Blessings!
CoachRichie
So glad that you've updated us on Jim's situation and how you're coping. You both continue to be in my thoughts, and I'll keep hoping for the best outcome possible. Look after each other, and have a great time at Jim's birthday celebrations.
Chewitt
So glad that you're keeping us up to date on Jim's situation. It sounds like you're doing the best that you possible can, and I continue to hope for the best outcome possible. Look after each other, and enjoy the birthday celebrations together.
Thinking of you,
Chewitt
it may be that removal of the tumor can be done without destroying the voice box but remember removal is still an option so get as much info as you can. there are many ways to communicate without speaking.
Happy Happy birthday to Jim, although he may feel there's not much to celebrate this time around. I hope he made the best of it. Keeping my fingers crossed about the John Hopkins results. SInce you asked, I''m in Idaho, leaving for Yellowstone on the 22nd and then a week in Salt Lake City. It's a great time to be out of the heat of south Florida.
Lisa H
Thanks so much for keeping is up on all of this. Yes, give him a big round of applause, hugs and kisses from all of us.
We are finally getting some sunny weather, after a record breaking rainy summer up here, NO summer, I should say. So finally this lovely sunshine has had me outside, and I have had a lot of company from out of town. It's been good to get my thoughts off of my issues.
Love to you all
Heather