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.

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norma67 05/26/2011

I can't thype very well because my hands are all shakey. Jim has had one crisis after another and I'am not sure he is going to make it. Everytime they try and wean him off the ventilator, he goes into a crisis and they have to wean him off. this is so bad and I wonder if our lives will ever be the same again, I'am scared to death. more than scared to death. I just thought I would take a minute and let you all know that I so appreciate all your notes to me , I read them at the hospital on my phone as we can only go in ICU at certain times, so I have a lot of spare time on my hands. People Jim has known over the years are all coming to the hospital and it'ts overwhelming, I cry at the drop of a hat. The house is filled with flowers and baskets of fruit, there is no room for them, so the kids are bring them to the hospital for visitors in the icu. everyone is here and Jim is never alone at least 2 kids stay at the hospital all night long, they are taking shifts, so he is never alone. i'am going to cry again.. My dauther Terri's flying her son Alex up today so he can see his "papa" one more time, Jimmy's son Ryan, has already seen him as they live in this area. My baby DJ, is bringing his 3 little ones up to visit papa today as well. they are little, but DJ wants them to see him. and Tammy will be flying Megan up from NC to see her beloved papa. here i go going to cry again.

so I'll let you all go and thank you so much once again. I'll try and give you an update again sometime, but in the mean time, thank you all again for all your prayers and thoughts for us.

lots of love,
Norma..

CHeatherS 05/31/2011

Good advice Ruth..... I keep coming and checking to see if there is any news..... I have a lot of hope, and sometimes when folks are going through these unbearable times, the hopes of others carry them through. So, sending lots of love and hope.....

Blessings
Heather

norma67 06/01/2011

Hi everyone, I have a free minute or too to update on Jim's condtion. He still remains in the ICU and is still on the ventilator. I am becoming increasingly upset, but they tell me has to stay sedated and on the vent in order for his wounds to heal, plus his lungs are still too "wet" whatever that means, I am assuming the pneumonia is not gone. They were beginning to wake him up slowly as they were going to remove the vent, but of course didn't do it and now they have him highly sedated again. I guess I really have no clue as to the seriousness of his injuries, however I do know they are extensive. When it blew, it blew with such force that the ligaments on his back were hanging from his spine, again I have no clue what they will do for that, but do know down the road, something will be done. I'am at the point where I am beginning to doubt everything every doctor or nurse says to me. I'am just tired I guess. Thank God for my children, they have been with me every second of this ordeal.

On another note, I want you all to know that Pam is home, I got an email from her this morning, I wish she would post to DS as I'am not able to help her anymore at this time. From the sounds of her letter, she is in a "horror world" I have no idea what she's referring to and don't have time to write back to her at this minute. You can send her a private email, you all know how to do that as she is online again. Of course going to dialysis as we knew was going to happen. So see what you all can do to help her out, ok? I love you all so much for all that you are and have been to me. I will keep you posted the best that I can. I ran into my kidney doc in the hospital on Sunday and he wanted to know how Jim was doing and why I cancelled my apt. So at least he knows. Jim was without blood flow to all his organs during the surgery and they expected the very worse, but we got the very best. His Gut is working and his kidneys are working like a 20 yrs. old. All of this has saved his life and has to be a miracle considering the blood flow was cut off for a time, but apparently no damage was done from it. Thank God for that anyway.

Love,
Norma...

deleted_user 06/01/2011

thanks for the update on Jim and also on Pam. you are so good to keep us up on Pam with all you have on your own plate.
I will post for Pam rather than send a message and encourage others to do so too because it seems more supportive to do it as a group. it also is quicker and easier for her to read than opening several messages.

deleted_user 06/01/2011

Hi Norma, I'm glad your kids are thereto support you while you are going through this. I am here cheering Jim on and sending you lots of love through the cyber ether!

Thanks for updating us on Pam. I have sent her a message and I also agree that she deserves her "own thread" so thanks Helen for starting one.

deleted_user 06/01/2011

Norma thank you so much for your update!!!!

Thinking of you always....hugs!!!!

Barb

CHeatherS 06/01/2011

Oh my, Norma!!! I am so amazed that Jim is still alive, and at the damage that was done, but of course, so thankful for what he has come through thus far. Thank God for your kids being there for you.

Oh my, I am so glad that you updated us. We will all be patient and continue to pray for dear Jim and for you. Thanks so much. Blessings, love your way!!!!!

Heather

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