www.kidneysnowincluded.blogspot.com

[Jill Ziegler]

Many of you have been so kind to follow my kidneys not included blog but since a new chapter has begun.....like a butterfly (thank you Linda) I have started a new blog following my journey post transplant.

www.kidneysnowincluded.blogspot.com

I hope you will find it uplifting and encouraging. And please feel free to ask me any questions. I am an open book and honestly, nothing is too personal! LOL

If you are not familiar with my old blog you can get up to date pre kidney transplant, especially if you are new to ahus or still on the journey. www.kidneysnotincluded.blogspot.com

They are only one letter different but very different blogs.

Happy Reading and let me know what I can do for you!

God Bless-Jill

[Dana M Simone]

I guess I speculate too much by nature, although, I have gotten much better through the years of putting everything into God's hands and going on faith! 

[Cheryl Biermann]

Yeah, we've always always said, normal doesn't have to be typical, you don't focus on what can't happen, but only all the multitude of things that are possible, now our list of possibilities just got a lot longer!!!

[Jill Ziegler]

You know, I see this expereince in a totally different point of view. Yall were the healthy mothers with sick children and I was the sick mommy with a healthy child. I am 110% happy it was me and NOT Madeline. But when I look back over the three years of horrible, I can look at all of the good that has come from it. We have been the pioneers, sort of, to be the first on this drug and we are helping future ahus generations. I take comfort in that. Also, who knows what great and wonderful things these kids are going to grow up and do. They have been thru a very traumatic  experiences, life changing but its a part of who we are. I try to look back and smile bc despite what ahus was capable of the Jills, Alyssas, Nathans, Jacks, Hydes, and on and on......beat ahus! And rejection or reaccuance are two "R" words not allowed in the Ziegler house. We were surviving back then like you said, just to get by. Now it is time to put it all behind us and start living. Just my thoughts. I hope maybe it will help ease your worries. God has brought us all TOO far to worry about the what ifs and stuff like that! We are so truly blessed! xoxo to you all!

[Cheryl Biermann]

I just find myself tearing up when thinking about everything, whereas before, just as you said, you just do what has to be done, no matter what, where there is a will, there is a way!

I don't dread that bad things might reoccur, only if something is unusual, then I just try & let docs, & this community know, so that in future others know what wacky, unusal things might happen and what the reaction/results were.  I think I must just be too busy to dwell on what ifs.

[Dana M Simone]

Jack also went through a brief period of adjustment post-transplant (06/13)....I think it was just overwhelming to suddenly be free of dialysis after 4 years, plus he had just graduated, and was turning 18. Almost 4 months later, his life is 180 degrees different. He has gained over 20 lbs, eats all the time, and has a ton of energy. He is in his first semester at our community college and just started working, too. Best of all, he is SO HAPPY...he is living life as a normal kid again. We continue to marvel at everything he does, much like the way we did when he was newborn! The joy in watching him cherish his new lease on life is beyond explanation - we thank God for this miracle. What I didn't expect is this - I find it incredibly painful to look back on what Jack went through; it's as if we dealt with everything at the time because we had no choice, we just did it, and now it's a sort of post-traumatic syndrome. The thought of it ever re-occurring devastates me.Have any other moms experienced the same? To end on a bright note - SO happy for Nathan, Jill, and the rest of our Soliris transplanted family. I hope and pray that those waiting receive their miracles soon.

[Jill Ziegler]

I bet he is doing fine. Chris says I talk super fast now.....prob the steriods:) Its prob the mama bear in us to worry about our kids,

[Cheryl Biermann]

T plant was 8/31.  Yep, Nathan's a pretty laid back kid, but he's waking up before me, talks non-stop sometimes, nit picks his sister & reminds us of things, like, will dad miss mass when he's at Iowa?  He'll keep us on our toes!  He's always been super affectionate with me, but after the t-plant, Bill started telling him, "Hey, that's my woman, go find your own!"  Haha!

[Jill Ziegler]

I cant remember, how many weeks has it been since transplant? I know Bill mentioned that at the conference about he says yeah I feel better with no enthusiasm. But he is younger, a boy and may not be able to describe how he feels. I think I would watch his actions and see if he seems more active, happier in general.....sometimes actions are louder than words. And also, psychologically a transplant is a HUGE thing. I remember trying to process that my friend just gave me a body part. And even as an adult that is a hard concept to wrap your mind around.....will always be. Kids for sure deal with things differently than adults.

[Cheryl Biermann]

Jill,

It was wonderful to have an adult's perspective for all the parent's sitting in the audience, for me, I can imagine it would be like a light bulb going on in a dark room. 

Here is an example of what is is like with Nathan...I'm looking at him watching "The Grinch that Stole Christmas" with Jim Carrey, after a full day of shopping for a fake tree, (the previous year we almost didn't get a tree!), and he's getting really lethargic & pale. " Nathan", I ask,"do you feel okay?"  uh, he replies. "Let me lay you down you don't look good." " I'm fine, mom."  I turn my back and he throws up all over the place!  There was a really long stay in the hospital   following this...this non-communication thing a boy's thing???

Everyone is asking him if he feels better after the transplant and he always says he feel the same!  Everyone else sees the changes, but not him!

 

[Jill Ziegler]

Very true Linda! June 23rd not only healed me, but also those two very special people in the room with me yesterday! Both the loves of my life and I think anytime I tell my story, the only time I get choked up (as you saw) is when I remember those early days of not knowing whether I would live or die. But thats when I had to dig deep bc as I told the docs, NOBODY was gonna raise that baby girl but me! And look at my hubs.....women would have been lined up at our door after him if I died! LOL, but seriously! Sometimes my words arent as eloquent as they are brutally honest, but I believe thats what everyone deserves to hear. No sugar coating, the hardcore truth but in the end happiness prevailed. I pray that for every single family struggling. I think being there was good for me and a new fire is burning inside of me to do more. I have been an advocate for dialysis patients all along but I saw a need yesterday with perhaps an added calling to my life. Put me to work Linda!!!!!