Monthly Archives: February 2012

It’s an emotional journey

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I’ve been really good at remaining calm. Maybe I’m overly calm about all of this. I’ve been calm to the point where people are asking me if I’m sure I’m OK. Or they make comments that I’m the calmest one in the room. But the truth is, I’m calm because I know I’m doing the right thing. I felt the same way on my wedding day. I am happy to donate to my friend because I love her and I want her to be around as long as possible. It’s that simple for me. I’m at peace with my decision and I’ve never felt like I made the wrong choice. I feel like I’m at the place I’m supposed to be. There’s something calming about knowing that.

A couple of days ago I started a face book page for this blog. I wanted to be able to reach out to others who were looking for a donor and to be a support system. I wanted them to see that this process CAN work and that there is always hope. When you have nothing else, you have hope. I wanted to be able to connect to others. I wanted to be able to talk to other living donors.

I did find all of that. But I also found that this is such an emotional part of the journey. I wish that I had enough kidneys that I could donate to everyone. That’s my only regret. I hate that I only have one, but I am thankful that I do have one. Its hard for me to see all of the “So-and-so needs a kidney” face book pages and to not be able to help them. Miguel is 16 months old. Chad is 23. There is a grandpa and a husband, and a father… There are so many. There are so many stories that touch my heart and bring tears to my eyes because I know it’s hard for them. I know that waiting is hard when you need something so desperately to live.

So today if you get a chance, please reach out and send some love to my new face book friends. Send them a message to let them know you will be thinking about them. Sometimes that makes all of the difference.

Chad – https://www.facebook.com/pages/Find-a-Kidney-for-Chad/342336569122858

Steve – https://www.facebook.com/pages/Find-Steve-a-Kidney/158341700952207

Brad – https://www.facebook.com/pages/Find-a-Kidney-for-Brad/148137185307870

Jack – https://www.facebook.com/FindAKidneyForJack

Ed – https://www.facebook.com/pages/Find-a-kidney-for-Pappaw-Ed/180504475396232

Heather – https://www.facebook.com/pages/Find-A-Kidney-For-Heather/274151245988998

Jim – https://www.facebook.com/pages/Find-a-Kidney-for-Jim/278691182202450

Miguel – https://www.facebook.com/pages/Miguels-Journey-for-a-Kidney/347131441975593

Kay – https://www.facebook.com/pages/Find-a-kidney-for-Kay-Swenson-Jensen/313677415359782

Tomorrow I am headed to the hospital for Round 2 of my testing. I will be having an EKG (heart), blood work, urine sample, and also a pregnancy test taken. I will do an update when I get home. I’ll try to talk Jami into taking some pictures for me. Thank you so much for all of the love and support. I know I say this a lot.. But Jami & I really do have the most loving friends and family. You are all amazing. xoxo

Jami’s reaction

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Brandi called and gave me the news that we were a match just as I was getting off work. My first feeling was bracing myself for disappointment. When she delivered GOOD news, and not bad, I freaked the hell out!

My thoughts –

OMG OMG OMG.

No more weiner!

OMG OMG OMG! Shes playing.

This isnt real! My weiner!

I have to celebrate!

Where can I get chocolate milk!? OMG OMG OMG!

Did I clock out? OMG OMG OMG!

And then I went on a dairy binge to celebrate. So see, Brandi and my reactions were similar. I find we have similar qualities and I can learn a lot from her. She truly is a rare breed. There is no doubt in my mind that we were suppose to meet. God brought us into each others lives on purpose. I havent figured out what the benefit is to her yet but I am excited that she is my partner on this journey. So very blessed.

My reaction

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I found out that Jami and I were a match 1 hour before she got off of work and 3 hours before my husband got home.

ONE HOUR before I could tell anyone. So, here are the thoughts that went through my mind.

(Unedited)

Holy Shit.

I’m going to give someone one my organ.

Holy Shit.

I might save her life.

For real.

My hands are shaking.

Jami, can I send you telepathic messages? Calllllllll meeeeeeeeee.

I need a cookie.

Are my hands shaking or is my phone?

Duh. My hands.

Should I do something? Like, walk somewhere. Or eat something. Or drive.

Yeah. I’m going to drive. To a store.

I can’t think of one single store I normally go to.

I’ll drive to the mall. Yeah. Smart.

Why is that lady looking at me? DOES SHE KNOW?

No. She’s probably looking at me because I look crazy with these shaking hands.

Just walk and act normal. Easy.

WHAT DO I DO WITH MY HANDS?

Holy shit.

I’m kind of excited.

I’m kind of scared.

I wish I had a cookie.

Sharing is caring.

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Yesterday I called my kidney coordinator in St. Louis to see if she knew anything from the blood work yet. To my surprise, I was next on her list to call! As soon as she said “Yes, I know” My hands started shaking and I thought I might not be able to breathe anymore. I’m pretty sure my heart skipped about 8 beats. Before she told me the results, I was given a disclaimer. A way out, should I choose to take it. She explained to me that no one else would be given my results. They would not tell Jami. They would not tell my husband. They would never be released to anyone. But me.

“Brandi, are you ready?”

“Yes?… wait. No…. OK. Yes.”

……. We’re a Match!!!……..

Our blood types mixed perfectly and the cellular reactivity was 0. That means that there was not a negative reaction when our bloods mixed together and that her body will have no problems accepting my blood. They also tested tissue compatibility. Out of 6 tissues, we were a perfect match on 2. That might sound like a low number, but its actually really good considering we are not blood related. The most important number is the one for cellular reactivity.

So, once I knew the results I was given the option to tell Jami or to just leave it alone and walk away. I could tell her anything I wanted to. I could tell her that the bloodwork was lost in the mail or that I wasn’t a match. But I didn’t. I was excited to tell her. I wanted to share the news as soon as I heard but I had to wait until I told my husband and Jami and our very immediate family. It feels very freeing to have it out in the open now.

Please keep us in your thoughts and prayers. I have a lot more tests to come to make sure my body can handle the surgery and the loss of a kidney.

Jami, I feel blessed to have found such a great friend and I am honored to join this journey with you. Like I said on day 1… I’m all in. 

 

A visit with the vampires. (Testing round 1)

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On Monday I went to the local hospital to have my blood drawn for my first round of testing to be a potential kidney donor. I don’t know what I expected it to be like, but it was easy. And for the most part, painless. Barnes-Jewish Hospital in St. Louis had mailed me some blood tubes to take in with me as well as the doctors orders for the blood draw. I think they sent me around 6-7 tubes. I realize now that I probably should have counted them… But I didn’t. So, let’s just go with 7. B-J wanted the blood to test for blood type and tissue matching as well as to check my cell count and stuff like that. Local hospital also had their own blood to draw to be tested here. (The B-J vials were sent by FedEx overnight back to St. Louis) Local hospital is testing for diseases like AIDS and hepatitis. I think the local hospital needed 5 tubes of blood. The lady told me that if there were any red flags on their blood draw I would get a call that day. Since I didn’t get a call, I guess everything was ok for that part.

Twelve vials, y’all.

TWELVE.

One Two.

12.

(Yes, I did pull out my iPhone and photograph this. And yes… The lady did look at me like I was crazy. And yes, she’s probably right.)

The neat thing about going to this particular hospital is that Jami works there. So, after my blood draw I walked to the pharmacy and met up with her. She was headed to get a juice and to do her dialysis so I asked if I could tag along. (By “asked”, I mean forced her to take me along and show me how dialysis works. And I also forced her into a photo.) Since Jami has to do her dialysis 4 times a day, she is allowed about an hour break at work to do it. She goes up a few floors up and is able to use one of the breastfeeding/family rooms. Basically, Jami has a tube in her abdomen that she hooks up to an IV bag. There are two bags… One for liquid to go in (On the IV pole) and one is the liquid that’s coming out (The one in her hand). I think it took about 45 mins total. It’s obviously a much more complicated process than this, so if you have any questions, please ask.

I found out on Wednesday that my blood had arrived in St Louis and that assuming everything went according to plan, we would find out the results by next Thursday. One week from today. This is only round 1, though, so even if I am a match on these tests I still have many more tests to do. I think there are 6 rounds of testing total.

We will find out next week if the journey continues.

Cross your fingers until then…

xoxo

Questions with Jami… part 2.

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Did your husband know what he was signing up for when you got married?

We knew I only had one kidney but I was never “sick”. I really never felt bad until recently.

Do you ever get angry?

I do get pissed off sometimes because of the time, expense and general inconvenience of doctors, paperwork, surgeries and so on. I just want to live a normal life. I have so much desire to get out and do and try new things and this ties me down a lot. But I remind myself, it could be a whole lot worse and is for many people and then I get my head out of my ass and quit the self pity.

When did you know you had a problem with your kidney?

I was 17 when i found out i was born with only one. I got a cold and had some blood work done and they were like “Hey, your blood is dirty”. I hope that answers it. I don’t have any type of disease. I would like to clarify that. Just born with shitty luck.

Is this something you can pass on to your future children?

I don’t think I could pass the one kidney thing onto my children but I don’t know.

Can you have children?

I don’t want kids but can probably have them.

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So, those are the questions that have came in recently for Jami. She’s definitely open to answering things that people are curious about so please don’t feel like you cannot ask if you have something you are wondering about.

Oh, and look what came in the mail today…

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Stay tuned for more updates SOON.

xoxo

Questions with Jami

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Did you ask Brandi to donate? No, I didn’t ask her. She is just a rare breed. Brandi is one of the most selfless people I have ever encountered. She puts others needs before her own. I am still kind of in disbelief at her willingness to help me.

Do you have a disease? Why do you need a kidney? I don’t have a disease. I have been tested and vaccinated for all things. I think they even gave me a rabies shot. Haha I need a kidney simply because I was born with only one. Millions of people only have one and probably go their whole lives and never know it. But mine was shrunken and over time just gave out.

What happens if you don’t get a transplant? Are there other options? If I don’t get a transplant, then I will survive on dialysis for the rest of my life. Kind of a grim idea if you ask me but I will do whatever it takes to live. Transplant or dialysis or death are my only options.

Who pays for the operation? My insurance pays for all things medical and there are other resources in place for travel and so on. Donor will be out nothing other than time, some discomfort, and of course an organ.

Has anyone else tested and not been a match? My husband has tested and his blood eats my blood. My dear friend Randi is eager to test but has a few more lbs to lose and my family either won’t or is not able to due to health reasons.

Do you work? I work full-time at  a hospital doing of all things, making dialysis solution to keep people alive.

Are you freaked out when you think about having someone else’s organ inside of you? No. I’m not freaked out about having someone else’s organ inside me. I don’t feel worthy of it sometimes but I much prefer it to dialysis or death.

Thanks for all of the questions and concerns for Brandi and I. Feel free to ask more anytime. (Leave a comment with questions and we will do this again. Fun!)

A not so exciting update.

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Right now we are waiting. There’s not really anything going on in the kidney donor world. I found out I needed to be added to my husband’s insurance because I didn’t have a full-coverage health insurance policy. I did that some time last week and it will be official on February 9th. I cannot go farther with testing until my insurance is effective… So.. we wait. About 6 weeks from February 9th we will know if I am a match and what step I need to take next. It will either be surgery to give Jami my kidney, or the not-as-positive news that I am not a match and the search will continue.

I sent Jami a list of questions that I have been sent in by y’all. And I have to say they are really good ones. Stay tuned and I will have that Q&A session posted tomorrow!

As always, thanks so much for all the love and support. xoxo