Progress

I've made some progress in my living donor search. 

A couple of people that I know of have contacted Duke (for which I am eternally grateful!) but didn't make it past the initial screen (too old and predisposition to cancer). Another person did make it through the initial screening and is undergoing some further testing. But there are additional complications that would come with this particular person's donation that don't make it ideal. 

A good friend of mine made me some business cards that I can give out to refer people to Duke's living donor referral survey and website with information on living donation. The self-referral survey is confidential and is designed to see if donating a kidney would be safe for you, the donor. Please take it now if you are interested in exploring whether or not this may be right for you.

I have a couple of neighbors who have offered to test. This is a little surprising to me since, when this first came up, they were not more than acquaintances (and fellow dog owners). It made me wonder if for some reason it's easier to commit to donating when you actually don't already know the person well. Strange, but maybe there is some truth to it. It's not my way, but it's hard to not feel slighted when people you know and who care about you aren't jumping to get tested. This is my life, people.

I have also tried to be more open and forthcoming about sharing my story. Instead of saying how tired I am or how I'm annoyed by all the headaches I get, I'll work in that actually, I'm in end-stage kidney disease and in need of a living donor.

"But you look so healthy," people say. "I would never have known." I do take decent care of myself, I'm not scrawny or anything, my skin doesn't look sickly. But I am definitely feeling the effects of end-stage disease. And the fact of the matter is that by the time I am looking very sickly, it may well be too late to find a living donor without first going on dialysis. I'm not sure why, but getting dialysis before a living donor transplant isn't as good as not.

I believe that the right donor will come along without guilt, coercion, or obligation. If someone doesn't want to do this, then they are not the right one for me. My job is to spread the message of need for me and all the other patients in need of kidneys.

Health Update

My health has been fairly stable the last couple of months. My kidney numbers are still crap, but the nausea and brain fog have let up a bit. I'm still having frequent headaches, which may or may not be related, and without this little dog of mine, I'd probably spend every night on the couch binge-watching Netflix. Serena has done wonders for my health. Not only does she keep me walking every day, but getting outside is good for my mental health, and I've met a bunch of really great people who live in my neighborhood. My lungs are doing great, but my sinuses have been giving me some problems that I'm trying to address. My ENT wants me to start on Tricafta, the "gene therapy" pill for people with my cystic fibrosis mutation. I'm considering it, but am not thrilled about adding this to my regimen. It is hard on the liver, can be funky with some of the anti-rejection meds, and some people have unpleasant side effects. 

Life Update

Work continues to be very busy, and I love it. My mom's health has continued to decline after her most recent trip to hospital and rehab for her back (first, they thought she had a broken vertebra and then they tied it to severe spinal degeneration and stenosis.) She may have had a fall that set the whole thing off. However, it's honestly hard to tell because her memory is worse than ever. This has been hard on her and us. I am constantly forcing myself to be patient, but it's so hard sometimes. Her caregiver now comes five days per week and I can't see that changing any time soon. Things with Mohammad remain wonderful. Mr Kitty and Serena are great. Serena has gotten some "winter clothing" recently to keep her little body warm on those cold winter morning walks!

Want to help but not sure what to do?

The number one thing you can do is to share my story. Seriously! Tell one person. There are many of us who need living kidney donors, both to stay alive and to have a life that's worth living. Let people know that this need exists and that it can be a wonderful thing to do!

Secondly, I've set up a GoFundMe page to accept donations in anticipation of expenses incurred by those who may go through testing and eventually become my living donor. All medical expenses will be covered by insurance, but things like travel, lodging, meals, and parking costs are not. Not to mention making up for lost wages during recovery! It's my goal that there is no financial barrier for someone who wants to test for me - wherever they are.

Thirdly, if you think you might be a donor for me, read more about the living donor process on Duke's website. And, if that sounds good to you, maybe even fill out the self-referral survey.

That's all for now!

L

2018-2021 Interlude

Hello, my friends!

I took a few years off from blogging...

At the 2018 Transplant Games of America, I had a revelation. I realized how far I had come since my surgery, and I tapped into a deep desire for change and growth. And, for the first time since my lung transplant in 2014, I felt healthy enough, and brave enough, to explore what exactly this meant. Unfortunately, it ended up being the beginning of the most emotionally difficult months of my life. 

So, I did what many people would do: I found a really great therapist! My therapist helped me to slow down and really evaluate why these feelings were happening, and at the same time to help me realize that for me to come as far as I have after transplant was truly a triumph! And that, if I did not take care of my own feelings, there was no one else who was going to do it for me.

I spent the latter months of 2018 in a state of agony. My self-exploration had led me to see that my husband and I's "perfect" relationship wasn't as perfect as I had thought. While I loved many, many things about him, his family, and our lives together, I began to see that while we had succeeded with love, shared interests, plentitude, and comfort, our communication was broken and we lacked true intimacy between us - the kind where hearts are bonded without layers of skin between them. 

After navigating a plethora of health situations in the four years since transplant, I desired for the part of my life that I did have control over to be different. I wondered what that could look like. If I was able to work, and somehow secure health insurance on my own, I thought, I could practically be independent. The idea was absolutely thrilling! And, simultaneously, terrifying. I had never thought that would be possible, and I wondered what it would be like.

But, to "abandon" someone I loved so much... to hurt someone on whom I had relied so heavily for so many years, and through so many incredibly difficult situations. Not to mention all the other wonderful things that go along with separating from someone. Well, it was the worst. I felt terrible. What kind of person would do that?? The answer was, the kind of person who had been and always will be incredibly, unspeakably grateful for the love, support, and for him even signing up for the journey that we had endured together. And someone who knew that, options exhausted, my obligation was ultimately to myself and my own happiness. Just as he couldn't have supported me through transplant unless he truly wanted to, I couldn't have stayed in the relationship unless I had really wanted to. That is the shitty reality.

So, at the end of 2018, I moved into my mom's place - she was staying in a long-term rehab at the time and her cat was there alone anyway. In January of 2019, I got a part-time job and began working in Durham at Triangle Land Conservancy, where I still work and love love love it! I started dating, including a CF/lung transplant guy in NYC...but it was too soon and ended up a mess. In the summer of 2019, my mom miraculously came home, and I moved to an apartment in Durham. In Dec of 2019, I started dating my current boyfriend, a wonderful man named Mohammad. And, in Dec of 2020, I was able to purchase my first home, a tiny townhome here in Durham, (mostly) all on my own!! It was so amazing, I absolutely never dreamed I would be able to have my own name by itself on a lease. 

And here I am! I picked up a problem cat and an anxious small dog along the way, and life is truly good. I am happy.

Except... I am looking for a living kidney donor because my kidney function is failing. That was the impetus for restarting this blog, because it is absolutely awful telling people about this, asking them to test for me, and I'm hoping this will help more people stay in touch while making the communication process a little easier on me.

Thanks for reading - please subscribe to the right if you would like to receive emails when I post. I promise you I won't be flooding anybody's email boxes. 

l

pictured: Serena and Mr Kitty looking out the front window