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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

Meet Jami.

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This is Jami.

Jami is a 27-year-old spunky blonde who works 40 hours a week. And then has dialysis for 20-25 more hours. And then goes to the gym to workout. And then also has to juggle the normal every day things like eating, friends, family, housework… I don’t know how she does it all, but she does. Because she has to. She wasn’t given a choice.

The people who know that her kidney is failing know because she’s told them. Not because she acts sick. She’s the most active person I know. She really does have a genuine love for life and the people she surrounds herself with. I asked Jami if she would send me her normal daily routine so that all of you could have an inside look into what her life is really like. In normal Jami style, she ended the message to me saying “I guess it’s better than not living at all. That’s pretty much my life right now. It could be a lot worse.”

3:30am- Wake up

Dialysis exchange, weigh, take 2 blood pressure readings, take temperature, medicine, weigh exchange bag, take pulse and write it all down.

Twice a week, in addition to the above list, she also has to add medicine to her dialysis bag.

Eat.

5:00am – Work

10-11am – Lunch. Repeat above dialysis procedure for an hour.

A normal lunch/dinner would include lean meats, fruits or veggies. She does have a restricted diet. No dairy products and  a few various other things.

4:30pm – Leave work.

5:00-6:00pm – Gym

Go home, shower, eat, get bags and supplies ready for the next day.

8:00pm – Repeat above dialysis procedure again. For the third time of the day.

9:00pm – Bed time

So, there it is. If you have any questions, please comment below. I’ll answer them if I can and if I don’t know then Jami can reply. There really isn’t much to update you on right now as far as the donor testing goes. I had to update my personal insurance policy and that will go into effect on February 9th. So, until then not much is happening. After February 9th, I will have my blood drawn and tested to see about tissue compatibility and blood compatibility. If both of those are a match, then we continue on the testing process. I did have a mini-phone interview and that went well. It was similar to the paperwork I filled out and mailed back. My blood pressure is “ideal” and there were not any red flags. On paper everything looks great. But, like I said, for right now we are just waiting.

Again, Thanks for all of the kind words. You are appreciated. xoxo

 

I want people to talk about this.

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I want all of you to talk about organ donation. Not in an I’m so great & amazing way. But in a what YOU can do way. I wouldn’t have been so public with this decision if I didn’t have a dream that this blog could start conversations. My ultimate goal is to help my friend. My second goal is to raise awareness. When I was looking for information online about being a living donor I found very few articles. I found ONE blog with ONE post about it. I really wanted to reach out and connect with someone who was in my shoes. But, I couldn’t. So I started this blog.

I want people to talk. I want you to all have this conversation with someone you love. If being a living donor isn’t for you, what about after you pass on? Think about it. Talk about it. And make sure your wishes are known. You just might change someone’s entire life. You might be exactly what they need. I know that organ donation isn’t for everyone. But at least look into the options that are out there. If you decide not to donate, that’s ok. But, if you do… You become someone’s miracle. You become a miracle not only to them but to their mom, dad, sister, brother, wife, best friend. You change more lives than just the one receiving your organ.

Just think about it. Research it. Talk about it.

You could save a life. Someone could save your life.

Am I scared?

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One of the things people seem to wonder about is if I am scared. I’m sort of at a loss as to how to answer this. I promise that I will always be completely honest here even if my ramblings don’t seem to make sense to anyone else. Nothing about this situation really makes sense, so this is one of those things that fall into that category I guess. I go back and forth. I haven’t prepared what I’m going to type this morning in hopes that I can “work out” my thoughts through this post.

Some days it feels like the most obvious answer: Yes. Of course I am scared to have a major surgery. Of course I am scared to give away something I may need in the future. Of course I am scared to walk into the dark unknown with nothing but a flashlight. (It feels that way at least) The process seems very overwhelming and complicated and much more than I anticipated. Everything about this seems BIG. Its starting to feel very real. I’m worried that I won’t be able to do this.. either because my body isn’t compatible or because my mind is too weak. I’m scared that Jami will suffer indefinitely if I’m not the “one”. I’m scared that I will be selfish and not give enough of myself to this. Like Jami told me, this thing is bigger than us. This is God. I feel like God (or whatever you want to believe. Fate. Serendipity.) brought us together. That’s the only thing that is crystal clear to me. I feel like a bigger hand has a play in this and I want to follow the plan through. I can’t see the bigger picture yet so I just have to hope I am headed down the right path. I’m trying.

Some days I waiver the other way. I’m not scared. I’m ready. I’m fearless. I want to do this and I’m going to go as far as my body will let me. The days I feel fearless are the days when Jami suffers the most. Those are the days I get my strength and my courage from her. I know that she is sicker than she leads on. She’s not the type to wallow in her misery or to allow others to see her struggle. She has a warriors heart & I know that right now she needs me to try. I know that she’s my friend and I want to offer this to her. I wouldn’t have started something I didn’t want to finish. And I’m ready.

So, I don’t know. I don’t have a clear answer. Sometimes I’m scared and sometimes I’m not. I’ve never doubted my decision.

I’m in.

Scared or not, I’m all in.

 

Questions! *Part 1*

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What did your husband say? Is he supportive? He will be writing a blog about this soon.

What kind of things need to match up to be a donor?

There are a few tests that will need to be ran. They will check blood type, antibodies and proteins in the blood, tissue compatibility, how likely the recipients body is to accept the donor kidney. There are a lot of factors that have to line up for us to “match”.

What kind of recovery is involved?

It will be a 2-3 week-long recovery. Since I do have two small children (1 and 2), I will need to arrange day care for approximately 2 weeks while I recuperate. After 3 or 4 weeks, I will be able to resume activities as I want to. I still plan on living an active healthy lifestyle and I should be able to pick up right where I left off.

Are there any psychological effects?

Sometimes donors experience depression. I’m not sure on the exact percent because right now donors are not followed up with and documented very closely from what I understand. But, yes, it is possible I will experience a depression from losing part of my body. If this happens, I will follow-up with a doctor and discuss medical treatment. I am crossing my fingers and hoping for the best though!

Are you getting paid to do this?

No, I am not getting paid to do this. Not in cash money, anyway. Jami can repay me by living an incredible life.( and I know she will). It is illegal to sell an organ in the United States. However, there is a tax credit that you can receive after the donation.

 

So this is just a few of the questions I have been asked so far. I will post some of the ones with longer answers in the days to come. Just to update everyone on what has been going on with the testing so far: I am currently waiting for the blood kit to arrive in the mail from the hospital in St. Louis. When I receive that package I can go to a local place and have my blood drawn and mailed back to St. Louis. From what I understand, this test will check my blood type and compare it to Jami’s to make sure our blood types are compatible. (I am O- and she is O+). I will update when I know the results from the blood work in the next week or two. And of course, if you have any questions or are curious about something please let me know.

Thank you so much for all of the support and love. When I decided to go public with my decision I was terrified of the reaction I would get. I didn’t know how my friends and family would react. I didn’t know even how to explain what I wanted to do in a way that would make people want to care. But I wanted to raise awareness and I know that getting the word out there about living donation is just as important as the actual kidney transplant. I want you to know that all of the kindness has been noticed and it’s amazing. All of you are amazing. Thank you. Xoxo

Why?

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I guess the most common question that I have been asked is, Why? Why put myself at risk? Why undergo anesthesia? Why take a gamble when I might need this kidney later on in life? Why go through all of this for someone who isn’t blood related?

I believe that life is a risk. Every decision that we make is a calculated risk. We have to weigh the pros and cons and determine what is right with the information we are given. It’s the same with this. I know that there’s a chance I may be on dialysis in my later years. I also know that there’s no guarantee my remaining kidney will continue to function properly. I know there’s a 100% chance that Jami can use this kidney right now. I know that she needs it to live. I don’t know if I will need it or not. It’s a sure bet that she will be able to put it to good use.

There are a lot of reasons I want to be a living donor. It clears a spot on the waiting list for someone else. We can agree on a day and time instead of Jami having to always be “on call”, living donor kidneys have a greater success rate, there are less psychological risks when the donor and recipient know one another. I could go on and on.

Let’s not dance around the obvious. Jami is on dialysis. She is 27. I know that she cannot live a long healthy life this way. I read the average woman can live 5 years on dialysis & I believe that’s way too young to die. Jami is such an amazing woman. She inspires me every day. And it would be a horrible injustice for the world to lose her now. If I end up not being a match I will still fight with her to find someone who is.

I’m not asking that everyone agree with my decision. It’s ok if you don’t. I don’t agree with all of the decisions my friends and family members make either. I am asking for love, support and kindness as I travel into the unknown. I don’t know what the future holds for Jami and I. All I know is, right now I have been handed an amazing opportunity to help someone and I am going to embrace it.

I’m all in.