Lindsay, Please don't feel terrible about this, it's no one's fault. There were extenuating circumstances that very few were aware of, I'am not even positive that her doc's knew about them, although she told me that they knew. Who really knows....:( I've started a prayer chain for her and it's probably half way around the world by now, I just hope that it helps. Sometimes there are things out of our control, and belive me I know as I am a control freak, have been all of my life and having no c ontrol over a situation is very hard for me. It would seem we have little if any control over PKD and thats the tough one for me. Just continue praying for her and I have to think that it will work. I can't wait to talk to her friend today and see how Pam is doing, although I'am not sure she will go back to the hospital today. She told me when she left Pam yesterday that she went to church. We didn't know, it wasn't our place to know, but it was her doctor's place to know and find out and I'am not positive that they did.

lots of love,
Norma...

Yes, I have no words that would express how I feel.... all I can do at this time is pray, and hope......

So much love for you Pam!

I've had some good news today!! Pam has begun to rally!! She knew where she was and knew her husbands name! HALLILUYA, and thank GOD!! She's not out of the woods by any means, but she is aware of where she is and that her husband was with her. I am so grateful, aren't you all too! My Gosh, this has taken it's toll on me and I'am sure it has on all of you too. Thats all I know for today, but it's sure better than what I knew yesterday. Keep praying, she has a long way to go, but at least she is aware of where she is and knew her husbands name. That in itself is a huge step forward! Praying for good news tomorrow!!

Lots of love,
Norma...

Sure hoping to hear from anyone about how Pam is doing..... she is so often in my heart, prayers and hopes.

Blessings dear Pam.

Heather

I have been wondering about Pam but had no way of getting in touch with her husband - and with all you have been going through Norma, I just had to worry and wonder.
it is so good of you to let us know about her improvement, despite all the worry you have right now.

Hello everyone and thanks for your prayers. They pulled me through. I got home from the hospital last Friday and have been in a lot of pain. More pain than I could ever remember. Can't spell too well right now so you will have to excuse me for that. The surgery was tough and went to 6.5 hours. I had a reaction to the medications and I was already in pretty sad shape. The other problem was that I was on some medications and the doctors just cold turkeyed them with my husband's permission and it almost killed me. I tettering around here and I have been to two dialysis sessions so far which weren't bad. I just hope that the pain gets to the point where I can move a little move and possibly drive by the time school starts in August. This is so big and so overwhelming that I truly cannot get my head around it. I love you all and I am worried about Norma's husband. Pam

So good to hear from you, and that you are finally home!!!!! Did you see the other thread where we all sent our greetings as well? Hope you sense our love and prayers for you..... I hope that you will be so surprised at how soon you start gaining health and LOSING pain. Thanks SO MUCH for the update!!!!!

Much love!
Heather

Heather,
The pain is intense and all they gave me is Tylenol 325. They work better than nothing, but not much. My mother-in-law has been a Godsend and I wish that she could stay longer. I didn't know I was in such bad shape! I do remember praying a lot because I knew something was really, really wrong. Thanks for everyone again. Lindsey always seemed to have such a positive attitude and I'm sure that a the biggest part of this whole thing. It's something I struggle with daily because of the pain, loss of quality of life, you name it. My son's last day of school as today. He was so happy. I hope to be able to take him to school in the Fall. I have one simple goal, to walk and if this surgery relieves the pain, then I guess I'm on my way. Love you all. Pam

Pam...whatever you do, please don't knock yourself for not having a "positive attitude." You are in pain. You had a difficult surgery and you are also afraid of what the future holds. I was able to have a postive attitiude because I had very little pain. That was my dumb luck...my body is good at blocking pain. Unfortunately, yours is not at this point. I know you will be better at some point in the future...and I hope it's soon! Until then, be gentle with yourself. Try to see the good things but don't beat yourself up when you cannot. It's normal to feel down when you are going through a trial like this. And remember we are here to support you!

Oh Pam, I am also thankful for your mother-in-law!!!!!! Some of us just don't have anyone around to help out, and when someone shows up, wow! It's really appreciated.

I just want you to know that I am praying for you.... I know the pain must be more than I can understand at this point, and the fear as well..... but I am holding a lot of hope for you.

Much love!
Heather

Pam, I am so happy you pulled through. I've been worried about you since this all happened. I can put my mind at rest. Now all you have to worry about is getting well.
God bless.

Jen XXOO

Pam,
I'm glad to hear you made it through the surgery and that you're on the path to recovery. I am very sorry to hear your doctors made the decision (despite your husband's agreement) to stop all the pain medications; they should know better than to stop anything cold turkey, period. Going through abrupt detox, especially immediatelly after surgery can cause signficant harm, to include torn stitched (inside and out) and all sorts of other complications (not to mention the sheer misery). This is one of the things all of my doctors (including the surgeons) have emphasized is that even post transplant (if/when that happens) I MUST stay on my maintenance pain medications IN ADDITION to any pain medications needed for surgical pain (above and beyond what I'm on now). Then, as the situation dictates (assuming it's a dual transplant), SLOWLY taper off the current maintenance pain medications so I avoid that horrid experience you've been through. I'm so sorry no one did that for you.

As for the pain you're in now, please talk with the doctors. Pain does not help with healing. While absolutely no pain is not realistic (just as it wasn't when you had your kidneys), pain so severe you can't move is going to impede your healing. All the pain does is slow healing and cause high blood pressure and you don't need to deal with either one of those! If you need something stronger than Tylenol 3, ask for it and discuss how you're going to manage the medication and taper off it as needed when you no longer need it (have that discussion up front so no one even considers stopping the medication cold turkey on you again). And remember to start with a stool softener right away (as approved by the nephrologist) so you avoid the constipation from the pain medication; you no longer have that extra fluid flowing through your system to help your GI tract propel things along.

Take it very easy this summer; it's going to take far longer for you to heal on the inside than that outside scar takes. A pillow held to your stomach while laughting and even as a passenger in a car will help; it gives you something to clasp and provides some support and cushioning (don't put it between you and the seatbelt, hold it outside, but have it gently against your abdomen if it's comfortable so you can hold it closer for those abrupt starts and stops; I find it helps me even now with all this "stuff" inside me). And be sure to ask your driver to avoid potholes, racing starts and stops, and to avoid dramatic lane changes if possible (hopefully driving in your area isn't like DC traffic!).

I wish you all the very best!
Ruth

Hi everyone,
Thanks for writing. Good day yesterday and bad one today so I guess this is not a straight and narrow patch. Good advice from Ruth about Stool softener. The doctors, at least mine didn't tell me much! I did see all the other threads and I am humbled by all of you. For caring so much for keeping up with me for praying. I am having a really rough time emotionally. Sometimes it's just unbelievable and other times I find that I can't even think straight. I hope it gets better. I believe it will. I have too. Pam

Pam, sweetheart, I'am just off to bed but have read your posting. I just know that your going to make it, you have what it takes and I so totally agree with what Ruth has said, it was barbaric and dangerous to do what the doc's did to you.... but, it's done and overwith now. You have to deal with it and you will, I just know that. You are a stronger person that you are aware of. I wish you all the best and all my love.
Norma...

Hey Pam,
Ruth is right, pain sucks in so many more ways than "just" personal discomfort. If the path doesn't become more 'straight and narrow' pretty soon, please take action!
Lisa H