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.
Thank you for the update.
Love, Jen XXOO
please everyone, keep up your prayers to keep the light burning.
Chewitt
Much love
Heather
Hugs!!!!
Barb
Yeah.
The process of saying good-bye.
Never easy.
I don't know if you follow a spiritual tradition, but I suspect that since you acknowledge prayer that God is in your life in some mystical way.
There will be life on the other of this.
And this community will still be here for you.
Remember, you are not alone.
Peace and Blessings!
CoachRichie
Heidi
My grandfather survived a burst, grapefruit sized, aortic aneurysm when he was in his late sixties but it was not easy and it was touch and go with him, just like it sounds it is with Jim. I sincerely hope that this will not be the last visit for the grandkids and I, like everybody else, is very glad you have your family around you.
Lisa H
Mere words can't describe how I feel reading this. If only I had a magic wand and could take the pain away and make Jim healthy again!You and Jim are so incredibly special; I feel that you're part of my family!
Hopefully Jim just needs some more time on the ventilator, time for his body to heal before he's ready to breathe completely on his own again. His body has been through an incredible trauma and sometimes it just takes the body a bit more times to decide it's ready to give up that extra support right away. This hasn't been long, even through the doctors always have this assumption that on day X all patients should be off a respirator. Well we already know Jim isn't everyone; he's already beat those upstate New York doctors to a pulp when it comes to his throat cancer; hopefully he'll do the same this time.
As for the ICU and having to wait outside; that is done for the convenience of the ICU staff, not for the patient. All they're doing while you sit and anxiously wait is monitor vitals at a nursing station (all monitors are usually seen at a main monitoring station). There is no reason you can't be in the room holding Jim's hand all the time except during shift change. All military ICUs permit one or two family members/close friends to be present at all times once a patient is set up in the ICU (except during shift change, so there's about one hour twice a day that family members need to step out); there's no reason you can't do the same. Be a pest and ask to spend time with Jim instead of in the waiting room (it's ludicrous to have to wait outside!).
Please know you are very, very loved and so is Jim and the rest of your family. You are in our thoughts and prayers and if there is anything we can do, just let us know.
Love and lots of hugs,
Ruth
You, Jim and your family are in our hopes and prayers.
Again, thank you all for your letters, I read them every day. Congratulations to everyone that is having anything wonderful happen in their lives and know that my love is always with you, helping to guide you along this path. I will be back, I just know it, I just don't know when, but feel my love always.
Lots of love,
Norma...
Hugs!!!!
Barb
Much love
Heather
The mere fact Jim DID make it out of the OR and has anxiety about being on a ventilator and having a tube stuck down his throat is actually a GOOD sign. He's already made the miraculous recovery (surviving the aneurysm); now it's a matter of getting him weaned off the ventilator (that will help his lungs and getting rid of the pneumonia as well).
It makes perfect sense that he knows when you're there; he's sedated with anti-anxiety medications only, not in a coma, so he feels your touch and hears you're voice. He's just far to groggy and sedated to do much in the way of respond. But hearing your voice and feeling your touch is most assuredly calming and I'm confindent it helps to hear the you're okay (he''s undoubtedly worried about you, just as you're worried about him). Tell him how you're doing, how the kids are, all positive, loving statements. Let him know that people have called to ask about him and are thrilled to hear he's recovering, and are looking forward to being able to talk with him once he's off the ventilator when he's ready to wean off that as well (ask the doctor about how to address or if you can/should even address the ventilator issue...if it still is an issue).
And if for some reason they talk about him needing a tracheotomy, talk with Dr. Amin about it (it can be done without harming the vocal cords). It may be an alternate way of working to wean him off the ventilator. You have a wonderful doctor who knows what he's doing who is ready and willing to provide you advice and guidance; the mere fact he's called and kept in touch is wonderful!
BTW, next time there are cars everywhere, start riffling through pockets and pocketbooks and take whatever car is closest to the curb and just leave a note. Or wake folks up to get their keys and then send them back to bed. I can't imagine anyone not understanding why you took their car to go to the hospital. And new home rule: NO ONE blocks YOU in!
Love and prayers surround you all,
Ruth