Have Patience Patient!

I am so excited to have this transplant. I cannot put into words how excited I am. I am so amazed by our God, who has had this master plan. Of course, we all hear it has to be in God's time....He has a plan for you. But it is astonishing to sit back and watch the plan unfold and start to make since. He has been working out my kidney problems long before I knew I had kidney problems. I am convinced that the reason Lindsey and I worked together at that flower shop (Petal Pushers) was all a part of his master plan for me. It is incredible. I think too, Chris has a big part in helping me get the transplant. If he didn't work for such a phenomenal company as Nucor Yamato Steel, I couldn't afford the drug Soliris and my transplant would not be possible. God new the day I married Chris that someday I would need a kidney and his place of employment would play a part in that. I am so thankful that Nucor values not only their employees, but their employees family. You can tell that they are about family! SO for the next few months or possibly weeks, I am just going to sit back and watch God work this miracle out. He has been in control the entire time and He knows what He is doing.

Lindsey should be a great example to all of us. Not just because she is sacrificing a kidney and giving it to me so that my life can be better....but we never know who is going to impact our lives and to what extent. The lady behind the counter at the gas station or the person five pews back in church just might save your life one day. What if I had been mean to Lindsey when we were younger? I might not be sitting here typing how excited I am to be getting one of her kidneys. Knowing Lindsey and her heart...she would probably give me the kidney anyway! She is just an above and beyond, top notch kinda girl. Whom I have had the privilege of knowing. But you never know why God has you meet the people you meet. It's got to be all a part of his master plan for all of us.

Lindsey and I have to go to Iowa soon for her final evaluation and last minute stuff for me before the transplant can happen. I am so looking forward to our ROAD TRIP!!! After being in the car with me for 8-10 hours she might be sick of me!!! I am looking forward to girl time and hanging out. So now I wait, patiently. I am waiting with patience to not be a patient anymore!

APPROVED

I just found out today that the drug I need Soliris has been approved for my use!!!!!!! This is huge! I am so grateful for a God who has cleared the path and making it possible for me to get a transplant. Two years ago, this wasn't even an option. And now He has given me the gift of a donor and the drug!! I feel like I am on top of the world right now!!!! I am seriously considering having this approval letter framed. I am deeply thankful for the company my husband works for. They have shown compassion and an appreciation for quality of life and I will forever be grateful. Once Lindsey's beautiful kidney is working in me I promise to do great things in my life. I feel like this is a rebirth or second chance at life kind of opportunity and I want it to count for something big. I don't know what plans God has ahead of me, but I pray that I make everyone who has been involved with making this transplant possible, proud.

Soon I am going to be able to drink any amount of fluid, eat foods I haven't had in 2years, quit taking phosphorus binders, quit epogen shots, START peeing in a toilet, stop puking everyday, have energy, have this tube removed from my stomach, go to bed at whatever time I want and STOP DIALYSIS!!!!!!!! I feel like the whole world has been handed over to me!

Life On Hold

Still waiting on a big decision. I am trying to be patient but the worry has really gotten me down. I know God has a plan and that His plan is best but taking that advice from myself and putting it into application is very hard. I know no matter what the ultimate decision is, I will eventually get a kidney. For now though, it feels like my life is on hold. I am usually so excited about Valentine's Day but not this year. I am doing the best I can to make it special for Madeline and because I feel so anxious, I probably have done above and beyond for her. I always worry how my feelings are affecting her and Chris. I try to shelter her from as much of the reality as possible but truth be told, she is very smart and picks up on it quick. I just pray those that have the power to make the biggest decision of my life can put themselves in my shoes. I think the last two weeks have been the hardest in two years. Knowing that I have a willing and matched donor and may not get to have it, is killing me. I am praying for strength to get me through the next couple of days until a decision is made. It feels better to get these words out of my head. I have been an open book through out this entire experience so to admit that I may be mildly depressed at this point does not bother me. I think it is the "not knowing" what is going to happen that is the hardest. Once I hear, yes you are approved, a tremendous burden will be lifted and I can get on with life. It is crazy how you can get stuck in life.....I just want a kidney and to live a normal life. I have such good family and friends around me to support me. Hopefully in a few days, I will post that the drug got approved and we will be moving forward with transplant. Life will have to go on either way...I am really praying and trying to stay optimistic for good news. I will forever be grateful for Lindsey who has made all of this possible in the first place!

It is so much easier to give other people this advice, but being on the receiving end of it is really hard!

Quick Update

No real news yet. I did hear from my doctor in Iowa yesterday and he said people from the insurance company have been contacting him, so that is good news. I am praying they make a decision soon because I am a ball of nerves. I know God has BIG things in store for me, I just have to exercise my patients.

With regards to the dialysis machine, #5 will be here anytime. This has gotten so ridiculous I don't even care anymore. The old saying, "if it ain't broke, don't fix it" really applies to this situation. I should have put up a fight to keep my Baxter machine. The only thing I keep telling myself is that hopefully I won't be on home dialysis much longer. That transplant is just around the corner....I can feel it!

Anyway, been a crazy week. Walking around on pins and needles waiting to hear news about my transplant, trying to get a dialysis machine that works and trying not to piss off my dialysis clinic in the process, has led to a very tired and strung out girl. Add in the fact I have puked every single meal since Sunday......yeah, it's been a crazy week. I don't think being snowed in has helped either....perfect storm at the Ziegler house!

Getting a Bit Ridiculous

So I have been on this new Frecenius machine for 2 weeks now. They have all been malfunctioning in one way or another. Machine #3 was delivered at the house today and Chris just began to set it up for tonight's treatment. And it wouldn't even come on! It has a touch screen that is not working, therefore I cannot do my dialysis tonight. So as you guessed, Frecenius machine #4 will be at my door tomorrow. Before I start bashing the hell out of this machine (that is supposedly so much better than Baxter machine)let me remind you all how much I LOVE my doctor, nurses and support staff at the Frecenius clinic. They have nothing to do with these ridiculous machines! Baxter is by far a better choice for home peritoneal patients. I had the same Baxter machine for 18 months without any problems! This is just complete craziness. I don't know what else to say about this. The only reason I had to switch from Baxter to Frecenius is money. And that makes me really sad. Frecenius thought they could make a machine comparable to the Baxter unit and so far 3/3 chances have failed miserably. Freceniud is making a killing, monetarily speaking, by making all of their patients be forced to switch from Baxter to Frecenius. I would give anything to be able to stay at my clinic and have Baxter again. But I must choose my battles wisely and at this point, my PD nurses are a greater assest to me. Maybe tomorrow when machine #4 arrives it will actually do its job. All of this chaos is making me really antsy and ready for this transplant to take place. This is just a temporary issue. Please God let the next Frecenius machine work!!! But thank yo Lord for the good PD nurses who are helping me though this difficult transition!
Luv you Sharon!!!!

My Beautiful Donor

Today I had the pleasure of having lunch with my donor, Lindsey and her sweet family. I cannot express enough how grateful I am to her for her kindness and generosity. She is giving me the ultimate gift anyone can give, life. I am so blown away by her. She is definitely my angel here on earth. Isn't she beautiful? She is so special because her insides match her outsides......And I get a tiny part of her insides...LOL! I will forever be thankful to her and Erick for making the choice to help me. I know it wasn't an easy choice but my family and I love you guys forever!

Best Email I Ever Got!!!!!

"Jill, we just got the results back and the cross match is negative. That is good news, it means that currently you do not have antibody that would reject her kidney. J Will you let Lindsey know? Once the drug approval is in place we can move forward with her evaluation. I still need to get back to you about the plasmapheresis schedule but thought you would want to know right away about the cross match! J Trisha"

She's A Match!!!!!!!!

I wanted to blog this right away even though I am crying harder than I ever have in my life. And it's happy tears!!!!! My sweet friend who I can only describe as an angel, is a match for kidney donation. I am beyond excited right now. I have waited to hear these words for two years. The chances that a non related donor would be a match.....and the first person to get tested....is like one in a million. I had a feeling the day she emailed me and told me she wanted to get tested that God was working his magic! I can only thank and praise God for this miracle. He has blessed me in such a way, I can't even describe it. My God is an awesome God!!! Who knew that working in a flower shop 10 years ago would have such an impact on my life. But that is how God works. Thank you Lord for my donor! She is giving me the ultimate gift and I am so thankful for her.

Plasmapheresis Machine

I never got a pic of my pheresis machine back in January 2009. This is not my machine but mine looked similar. It would remove my old plasma and give me new plasma, donated by kind strangers! This machine made me sicker than anything. My body did not respond well to this treatment. Hope I never have to use this machine again.