Update

I've been in touch with my Transplant Coordinator recently - they do post-op follow ups including a 24hr Blood Pressure test, additional blood and urine work, and a questionnaire regarding your health. Of course, me being me, I lost the questionnaire part and had to get in touch to get it resent. While I was chatting with my Transplant Coordinator I did inquire as to how the recipient was doing and they are doing very well... my kidney has not been rejected (I'm not sure they would tell me if it was, but it's good to know that it hasn't been) and they have recovered beautifully.

For whatever reason this almost made me cry. I know this person has a family and just knowing that they are not on dialysis and are able to live a normal life again... I feel really good about what I did.

From my end things are going really well. Life is back to normal in pretty much every way. I do make a point to watch what I am eating and to really keep the drinking to a minimum, but other than making those healthy choices life is as it was pre-donation.

The other thing that came out of my conversation with my Transplant Coordinator was that I am looking to get involved in the peer support program. I have been in touch with the Kidney Foundation and will be meeting with the peer support coordinator next time he is in town.

I know there are not a lot of anonymous donors out there (however the number is growing - yay!), and as such, not only have I offered myself to this program, but I will extend the same offer to anyone reading this. If there is anything you would like to know, any question you may have about the tests, the surgery, the post-op, what life is like, please do not hesitate to comment with questions. I promise to answer any question you may have regarding living organ donation. I know I was the first of this type in my city and as such the only support programs out there were based upon directed donations (typically friends or family), as were many of the questions/procedures. Personally, I was hesitant to connect with these other donors as prior to my decision to donate, I had no connection to kidney disease or organ donation and felt this was a major difference in the donation process.

Having gone through it, I know I would have loved to have spoken with another non-directed donor. Hence, my offer to you. I look forward to hearing from you.

Hollow Spot

I know its been a while since I've posted in anyway, and I do want to thank you for reading my story.

Living with one kidney is living a normal life. It is now mid-April and the phantom pains are gone (even when I am not being as good as I should be), my scars are fading and for the most part it's not even something that I think of daily.

As life is back to normal, I am going to yoga again and it was there that I had a rather unusual reminder that I only have one kidney - we were lying on our backs with our knees pulled into our chests, our arms wrapped around our knees, rocking gently from side to side. I could feel the difference when I rolled towards my left compared to towards my right. The best way I can think of to describe it is I felt like a weighted egg where one side was heavier (and felt like there was something inside). The other side just felt hollow. It felt weird. It's weird being able to feel it in such a random situation. I mean, it makes sense that I could, but it was surprising as I hadn't expected it and this was the first time I had felt it.


In other news, my left leg has the feeling slowly returning. It had been numb on the top of my thigh between my knee and my hip ever since my surgery, and had scared me quite a bit when I first realized it. After a trip to the ER to make sure everything was okay, we found out it was because of where my incision is, and that it is very normal for any type of abdominal surgery with a side incision. The feeling is slowly coming back, and I expect it will be fully back within 2 months.

Life is pretty much back to normal, and outside of the occasional physical reminder my life has not changed from before my surgery.
I hope that if you are thinking of donating a kidney that you will find this encouraging, and please do leave a comment if you have any questions or concerns regarding life after donation (or the donation process itself).
Many thanks!

Ponderous and Pensive

I think I think too much for my own good. I spend more time and energy thinking than I do almost anything else.
My thoughts are random, and jump rapidly from one area to another.

Despite that randomness, today I have found myself thinking greatly about my kidney donation. I have a meeting with the Surgeon on Thursday, September 24th, and this will be the first meeting my husband will attend with me. The meeting is to discuss my anatomy, and which kidney they would take. I will need to get a blood test done as well as I am still working on getting (and keeping) my iron at a decent level.
From this meeting, the team will then go to a Round Table discussion, and my understanding is this is where the final decision, the go/no-go will be decided.


I'm not nervous about the appointment, I'm nervous about the decision. This is really, truly, something I want to do, and I am scared they will tell me no. I am scared they will say that I am a young woman who hasn't had children yet, and that thank you very much for the offer, but come back after you've had kids. I don't want them to say that. I want to do this, and as much as I know I will do this later if they say no now,  I am ready for this now.

I now this is horrible, but I was thinking that maybe they will let me go ahead. I mean, I've had every test in the book. They've spent a lot of time working with me, testing me, evaluating me, making sure I make the grade. To have all those resources go to waste because of my age, and to deny someone a kidney, I think that would be a shame. But then again, that perspective is tainted by my own desire to do this.

The other thing I have been thinking about lately is speaking out. I have been adamant about remaining anonymous, but have started to think that maybe I could advocate for Anonymous Donation, and hopefully encourage more people to enter the program and help save more lives. The only reason, and I must stress this, only reason I would do this is to try and help. There are so many men, women, and children waiting for organs, and kidneys... you can live perfectly fine with just one. So with all the healthy people out there, and all the people that are fighting for their lives, doesn't it make sense to try and match them up? And if I can help with that, should I? Or stick to my original plan which was to donate my kidney, tell as few people as possible, and continue on with my life.

I don't know if anyone actually reads this blog, but if you do, I would really appreciate some feedback. What would you do? Speak up? Or Donate and continue on with life? Why?

Just Adding to the List

I got to meet my little sister today. I have gone through the Big Brothers Big Sisters program and am finally becoming a Big Sister!
My little sister is super amazing! She is smart, funny, and is beautiful, inside and out. I'm really excited to begin hanging out with her, and can't wait to get to know her more.
Today at the intake meeting with my little, her mom, and the mentoring coordinator, I learned that my little is on a reduced sodium diet because she has had some medical issues, and needs to watch her sodium due to the state of her kidneys. She's 11.
That's just one more reason why I'm going to do what I'm going to do. I only just met her, and already I can tell what an amazing young girl she is, and if her kidneys failed and she needed a donor...
I don't even want to think about that.
But what I do know is that I believe in the good of this world. I believe that a single person can make a difference. I believe that despite what so many people have told me, donating my kidney is the right thing to do.
My little sister is one more reason why I am donating my kidney, and am proud to do it.

Now She Knows

So this weekend I told my Mom and Dad about my plans to donate. I was terrified. Nervous. I wanted positive support.

So here's how it went:
My husband and I took my Mom and Dad out to dinner to celebrate their birthday's (which are only weeks apart), and upon returning home, the four of us sat down to play some cards and I got things started.

Me: Mom, I'm thinking of donating a kidney.
Her: Please don't.
 *Crap! Not the response I was looking for.*

But, have no fear, it did get better. The approach I took to this coversation was that I was there to get her thoughts and feelings, and to share information. This was not a sales job. This was information distribution.

So we started talking. She didn't really have a lot of questions for me, but looked as though there were many things she wanted to know. So I volunteered some information, I told her about the tests I had been through, how extensive they are, and what the process has been like thus far.
I also discussed with her the risks. Her main point is that I haven't had children yet, and she was worried about the risks both to me, and to any kids I may have.

Great. That I can handle. So we talked about them fairly extensively. Very happy that I had done my research and was able to provide quantifiable numbers to back up my points. I am very thankful that my husband was there with me. He was able to articulate things in a way that I was having issues with, and between the two of us, we remembered most of the research we've done. Having his support in telling the family was huge, and I think having his support helped my parents be more supportive as well.

Interesting point, Mom didn't seem to care that it was anonymous, her first concern was me. That made me feel pretty good actually, to know that above all she loves me and just wants me to be safe.
She is concerned about pregnancy and how hard it is on the body, and how hard it will be on mine with only one kidney, but with more information I think will be okay. Actually, she said she'd be terrified the entire time as it is major surgery, but that was her job as my mother.


My Dad on the other hand, he didn't say too much about this. His main comment was "you don't mess with Mother Nature." Duly noted.

Thankfully, they both did say that this was not their news to share, and would not be telling anyone else about this. Also, we talked about this on Saturday night, and had a normal Sunday, which was really wonderful. We were able to enjoy the time that we had together and not let this overshadow everything else.
Very glad that this is all done. Well, not all done. Its the In-Laws next weekend.

Dear Mom, I'm donating a Kidney

Okay, so that might not be the best way to start the conversation, but I think its going to have to happen. A very wise friend of mine told me that parents (no matter how old the child is) do not like to be told that something is happening, they like to be involved in the process. So by telling my mother before the date is set, and letting her go through the remainder of the process with me, I am more likely to have her support and the relationship will be better long-term. Therefor I have altered my plan of not telling them until the date is set for surgery.
Thats wonderful. That really is. Now how do I do it?

Part of my anxiety about this is I don't want this to overtake the weekend. I would just like to tell her, answer her questions, then move on. I want to see my family and spend time with them, not spend the entire time talking about this. So I'm thinking I might do it on Sunday before we leave, or maybe over dinner and a bottle of wine.

I love my mother so much, and I want her love and support. But, and there is always a but when it comes to family, I don't want her to spread this around. I don't know if I even want my brother to know. The more people that know the more likely this will get out or something, and I prefer to have it be just something I'm doing, then move on with life when it's done. And the more people that know, the harder that will be.

But, I do know that I will have more support post-op and my husband will have some help taking care of me when I am convalescing.
I guess maybe the reason I'm scared to tell her is that I'm scared I will get the "negative support" that I got from my boss and her husband.
The weekend after I tell my mom and dad, we go visit the in-laws and I will be telling them as well. Not overly worried about that just yet, but I think a lot of how I feel about telling them will depend on what happens next weekend when I tell my mom.

The question is: If they hate the idea and are really against it, how will that affect me? And will they be able to support my decision even if they don't agree with it?
Any ideas?

Timelines

I called the Transplant Center this morning and spoke with the woman who has been coordinating everything for me thus far. I was looking for information on timelines and a bit more about what to expect.

I am still waiting for my psyc appointment, but that should be in May (apparently the Dr is bringing in another Dr to help with his course load as he is overwhelmed with all the refferals he is getting). The appointments with the nephrologist and the surgeon will follow within about 2 weeks, but right now they dont have an Operating Rooms open until July, so the wait time for surgery is about 3 months. I'm kinda hoping I can get scheduled for July as that still allows me to have the time off work that I need without infringing on our busy time. I know I will have to take as much time as I need to heal, and that with laparoscopic surgery I could be back within 3 weeks, but I need to be back at work, and be back 100%, before September.

My other question was about staying local vs going national. I am not opposed to going where I am most needed, but I think I would prefer to stay at home. Here I have my husband to take care of me, as well as a friend or two. I will have my own bed, and not be racking up a hotel bill. Apparently there is a very high demand for Kidneys, almost 1000, so as long as I am a match I should be able to stay here.

Part of me is still coming to terms with some of the reactions I have been getting, and although they do not have me doubting my decision or anything like that, they have made me wonder why I think so differently than other people that I know? The reactions I'm speaking about are not just ones that I have gotten personally when talking to people about my specific choice, rather from when talking about living organ donation in general. Things to ponder as I get back to my day...