Per my transplant coordinator 6/30/16: “We just received the results of the virtual cross matches and unfortunately one of them came back strongly positive. But this happens so we are working diligently to find a new swap. We also just did a 4-way swap today so we will be refreshing the system early next week. We will keep you updated as soon as we find something new.”
So the 5 person chain discussed earlier in the blog is off the table due to an incompatible match, but they are searching for a new chain now. Just drinking my water till they come up with something new! Still shooting for a donation in August.
12 thoughts on “Back to Matching”
I just read your entire blog, and loved it!
I learned so much from it that I already didn’t know about donation.
We are both on the same journey and you can follow my FB page at Kate’s Journey to Donate a Kidney.
You expressed so many emotions in your blog that I am currently experiencing!
I feel like we could be great friends!
I especially enjoyed the remark abut boating season because my life pretty much revolves around my boating time although my boat has been in the shop it will be completed hopefully this week.
I am anxiously anticipating my coordinator’s phone call this week to let me know if I’m starting a 4 or 5 person kidney chain at UK.
I can donate to 1 person now if I want, but have opted to be patient and wait while the chain is put together.
One 4 person chain has already fallen apart so I’m hoping this one stays intact!
I look so forward to chatting with you.
I haven’t had as much support as I anticipated so no one quite understands the emotions I am going through to date.
I am so happy I found your blog!
Hopefully I will be donating within the next 4 weeks which will make for a bumpy recovery on my boat!!
Thanks for your comments Kate, they are my first! Your work sounds extremely interesting, if it ever brings you to Chicago, I would love to meet in person and get a coffee (or water, sounds like you drink a lot of it). Best of luck to you in your journey, and I definitely look forward to following your FB page, and staying in touch. I just found a FB page called The ALODF Donor Support Group- I have found some really interesting information on that page, you should check it out. There are a lot of non-directed donors on the site like us. Take care and stay in touch #1beanpower!
Thanks for your response!
Yes, I would love to meet you in Chicago soon.
I was there a couple weeks ago.
I love staying at the Drake & hanging at the beach to relax.
I just finished up my meeting with Indiana Donor Network and told them about you & that I finally found someone who was going through the same emotions as I am, and who can relate to me!
Maybe chat later?!
Super excited I just got my call!
5 person kidney chain next month!
I’m feeling things I’ve never felt before in my life!
I had to share with you since we’re on this journey together!!!
(Hope you don’t mind!!!)
Wow, a lot happened in a day! Congrats, you must be so excited. 5 person chain is nice and long too, even more exciting! Would love to chat over tea at the Drake, or call anytime! My cell is 312.927.7655
My name is Rebecca – I just finished reading your blog as well! I am going to be donating a portion of my liver to a friend of mine from high school. I currently live in York, PA, but the she lives in our hometown in the Chicago suburbs and our surgery will also be at Northwestern!
Just like Kate said, it is so nice to know there are other people out there going the such simillar things. I don’t think anyone in my immediate “family” really understands. They can try, but having not gone through it, they just won’t truly get it.
I am hoping for a surgery date in September – maybe we could meet up when I get to town!
That is just awesome, and if you don’t know already, Northwestern is THE BEST. Thanks for reading my blog, and it’s cool to have met you and Kate now- 2 people on the same journey at the same time! I work a few blocks from Northwestern, I definitely want to meet up with you and your friend, and know where all of the good food is in the area, and can feed you! Keep me posted, and call or text anytime, I would love to hear more about your journey! 312.927.7655
Hi Rebeccah & Laurie!
Super excited we all found each other due to our desire to help other people.
No one truly understands what I am going through, and all the different emotions involved.
I cannot wait to meet both of you!
Chicago is one of my favorite cities in the world & I travel there frequently as a getaway.
Most of the people at The Drake know me & have become like family.
Let me know, Laurie, when we can meet in the next couple of weeks.
I’ve had the travel bug lately since I know I’ll be stuck at home for awhile after surgery.
Even staying an entire day at home is a rare occurrence for me.
When you come to Chicago let me know Rebecca & maybe we can all meet!!
I told my coordinator I was willing to donate part of my liver as well, but they opted for just my kidney.
Do you have a blog we can follow your journey?!
Congratulations & keep us posted!!
As for meeting up ladies, feel free to take it offline, we can get a group email going if you are interested! My email is email@example.com
Hi Rebecca and Laurie!
I hope you both are doing well.
I’m sorry your chain fell apart ,Laurie, but I’m sure another will be put together soon!
I see you will be in Chicago soon , Rebecca, to see your surgeon for clearance.
When will you be there?
I would really like to meet up with you ladies if we can arrange it while you are in Chicago!
My donation is August 17th so it’ll need to be before the 15th for me to make it happen.
Please let me know!
I need to talk with people who understand what I am going through.
I still have people trying to talk me out of donating, people that are not accepting of the idea, but mostly people that won’t even acknowledge that I am donating which hurts the worse.
It doesn’t make any sense to me, and is very hurtful.
Currently, I am keeping busy and trying to set up a fundraising page with Sigrid with the American Living Organ Donor Network to help raise funds for living donors.
I’m hoping that my story will touch the recipients in my chain and others, and that they will want to give back to help the donors in my chain with any leftover money going to the general fund.
I hope to meet you soon!
Wow, talk about right around the corner! You must be so excited! Yes, I’m free to meet. I work right by the hospital so except for weekends, name the date and time and I’ll make it happen. You can call or text me at 312.927.7655. I am really excited to hear what you have in the works with Sigrid and would like to be a part of that. I have a few resources that might be able to help too.
I’m really sorry you have some hurt and frustration in your life surrounding this event that should be about love and light. You are ahead of where I am in my journey and I’m not looking forward to feeling that way, and know I will feel like you do now if people react that way to me. I have had (only) one person who I look up to ask if my blog is about getting media attention/ attention/praise. It’s NOT! I don’t even post it on my own FB page because that makes me uncomfortable! And when they suggested that, I didn’t defend my position because, well, F*ck that Sh*t. Anyway, I would be a liar if I said I didn’t think about that comment a lot. I think less about any positive feedback I have had from people about what I am doing (which is much greater than the 1 negative comment). So silly. Silly brains we have.
We’ll have to come up with a mantra to remember that this has nothing to do with those people. It’s such a waste of energy to allow them to negatively effect this experience. When I am hurt or upset by somebody’s words or actions, my mom always asks me, “Did the person make you feel bad, or did you allow them to make you feel bad.” She’s right about pretty much everything, and I think that word of advice really applies here. It’s OK that we aren’t all on the same path, and not everybody will understand the path we are on. People can only make you miserable, sad, defeated, happy, whatever, if you give them the power to do so! That being said, this is a great exercise in not judging the paths of those around us. Now you know how it feels, and I bet you will be more mindful than ever not to judge someone else’s path now. That is power and compassion that we can gain from the negative here.
PS- please read this back to me when it’s my turn 🙂
What an incredible writer and inspiration you are!
I try to not think too much about the negativity, but it’s hard not to some days.
I know the reason I am donating, and that is all that matters.
You are very lucky to have a mom who is there for you, and she has given you wonderful advice.
Last week I had someone ask me if I get paid for my kidney!
I kindly explained how it worked and that I will be spending thousands of dollars out of my own pocket in order to give the gift of life to someone.
I also had another person ask the same question, and also told me it sounded as if I were having a kidney orgy. That really bothers me!
It’s hard to put something like that comment out of my head, but if he considers swapping kidneys an orgy then so be it. The more the merrier!
I do have a Facebook blog that I post on. It’s called Kate’s Journey to Donate a Kidney.
I do post about my donation on my personal page as well, and I do have a few supporters, but most of my posts are not recognized.
I like to share other stories of people needing kidneys, and rarely anyone will like those posts.
I understand that this is my journey, but I’m hoping to advocate for living donors.
Most of my friends are Coroners and Funeral Directors who are not advocates for donation because it is extra time and effort on their part dealing with a body post donation.
These are the ones who won’t even acknowledge that I am donating.
The few I told were rude and asked me why I would want to do something like this, including my best friend.
That really hurt, but the silence and pretending that they don’t know hurts even more.
It will be interesting to see what happens when I go in for surgery and afterward if these same people will acknowledge what I did.
I’m not looking for praise or recognition, but my friends and clients completely ignoring my journey speaks volumes for their character.
Needless to say, I am coming to terms with who is my friend and who is not.
I just looked through my calendar, and cannot believe that there isn’t one day between now and surgery that I can make it to Chicago.
I’ll be traveling to Lexington next week for a couple days to finish my cross match, final blood tests and meet with my coordinator.
My son is getting ready to go back to IU so I’m busy helping him set up his apartment prior to my surgery too.
I was really hoping to meet you before, but it will be several weeks after instead.
That may be of benefit to you since I will be able to answer some of your questions, if you have any.
Sigrid has been a wonderful help to me today.
I have given her all the information she needed so hopefully a Generosity page will be up and running soon.
I do not need financial assistance, but had to fill out a financial application anyway.
I asked for $1.
All the money raised will be given to the donors in my chain, and if they do not need the funds then the leftover money will go to the general ALODF fund to help other living donors with their needs pre and post surgery. I feel as if money may be holding many potential living donors from making the decision and moving forward with donation.
I’m curious what your ideas are in regards to what I am doing with Sigrid.
I can send you our email thread if you like so you know exactly what we are doing.
Do you have any idea when your surgery will be?
I know Rebecca will have her surgery date very soon.
Hopefully I will be recovered in time and we can all meet and offer our support to each other.
I will definitely remember your mantra on the difficult days, and hope that you only have positivity in your journey forward.
I look forward to your next post!