Saturday, August 26, 2023

Unconditional Love

This post is about love. The love of yourself despite endless temptation otherwise.

I've always struggled with self love in the sense of taking care of myself, with prioritizing my own needs and well-being. Being diagnosed with ADHD a couple of years ago shed a lot of light on this recurring, doomed-to-be-repeated theme in my life. It explained my tendency to spring into action to take care of the latest mini-crisis at the expense of myself whether with work, life, or family.             

    "A recent study also found that the ADHD brain tends to produce more Theta waves than   average brains. Theta waves indicate a state of deep relaxation ... [an] over-abundance of theta waves can them great in a crisis." -

When there's a crisis to address, I am calm, focused, and on point, whereas, during regular times, my brain can be a distractable force in need of taming. It doesn't help that the ADHD brain is constantly on the lookout for excitement, often to the detriment of ones own self-interest. (Things like eating well, sleeping the proper amount, being mindful and keeping stress at bay.) 

With chronic disease, self-care is even more important. However, so many other daily healthcare responsibilities - taking pills, doing insulin, monitoring this and that (which I refer to as the 'blah blah blahs' of life) - add an additional layer of challenge: it's as if the brain's daily care dance card is so filled up with the 'essential' care duties that it doesn't have room for the less-sexy-but-equally-as-important other kinds of care. Plus, those other things get kinda boring!

All this adds up to a massive headwind. Perhaps this is why self-care (and the opposite, overdoing it) is the life lesson I have been doomed to repeat over and again.

The Doctor Stuff    

Kidney biopsy: I am still waiting on the official results from my kidney biopsy the week before last. I did receive preliminary results that showed no acute rejection and an indication that cyclosporine (my #1 anti-rejection medication) may not be properly processing in the kidney, leading to a build-up or toxicity. This could be an explanation for my creeping creatinine. Stay tuned.

Is this bad news? Is it good news? I don't know. For now, it just "is."

Hematology appointment: I had my first appointment with a hematologist this week. I was referred to this doctor because of my low hemoglobin. I can now add another exquisite doctor to my list of Duke physicians. This guy really impressed me. Our appointment was over an hour long. He was very thorough, asking me about my body, head to toe; he also performed a full physical exam. I was sure to tell him of my mom's hematological issues, that I won't get into now, and which may or may not be relevant to my current situation. 

The next step was to get a new set of hematology-focused labs. We talked through most of the things  that the labs would test. Man, this guy really loves blood! He was very excited at the prospect of getting a sample of my blood under the microscope to look at, in addition to the information gained from the lab draws. Meanwhile, my hemoglobin has slowly been trending up! And, symptomatically, I've been feeling better the last two weeks. Things we are checking include:
  • Thyroid
  • Vitamin B12
  • Other antibodies, acids, and hormones
We are hoping that these will provide some answers. Possible outcomes include additional lab testing, recommendations for some changes with my medications, and the vastly less popular bone biopsy. I should hear from him next week after all the labs have processed. In the meantime, I'm trying to avoid dipping into lab results piecemeal and asking Doctor Google.

One last note: An idea was floated early on in this process that my low hemoglobin and rising creatinine could be related. The hematologist does not suspect that is the case. That bit of information makes an already intimidating situation seem a lot more messy.

Sunday, August 20, 2023

Waiting for Results: A Meditation

Me and Serena, enjoying a *little* sun (with a lot of sunscreen) at Jordan Lake, Aug 2023.

I'm waiting on results from the kidney biopsy I had a few days ago. I've been in a fairly relaxed state of suspended reality, living as fully as possible in the space before good or bad news, the space of denial and infinite possibilities. Dipping toes into the "what ifs." Taking pleasure in the fact that right now, I am ok. If this moment lasts forever, I will be okay forever. 

Saturday, August 12, 2023

One Thing After Another

My one-year kidney tx anniversary came and went with little fanfare. Two of my bestest buddies sent me messages, which brightened my day. ☀️ I called my brother, my wonderful, wonderful living donor. 💜 I might not be here today without him. It’s impossible to overstate how much gratitude I feel toward him.

In general, life has been difficult. 

It started, in earnest, with contacting Covid over the July 4th holiday. While I escaped the most severe phase thanks to Paxlovid, I missed almost two weeks of work due to brain fog and inability to focus on anything except for episodes of The Mentalist. Thank DOG my lungs were spared.

By the time I followed up with my pulmonary team, it seemed very possible that my ongoing body fatigue/lightheadedness/shortness of breath upon exertion were being caused by another issue we’ve been closely tracking: falling hemoglobin. Falling hemoglobin is often associated with fatigue, but the other symptoms I’ve had can also happen. And who really knows when Covid fatigue “ended” and anemia fatigue “started.” It’s been dropping since spring, but by July it had dropped super low (7.5 for normal range of 12-16.) This is most likely caused by one of my 4 immune suppressant drugs. My kidney and lung docs talked and decided I should be referred to a Hematologist to help decode the mystery. That should happen in September. yay  

Now for the (possibly) most problematic thing happening. Let me preface this by saying that this is incredibly difficult for me to talk about because, emotionally, it makes me feel guilt, shame, and an incredible amount of sadness. There is a problem going on with my new kidney. My creatinine (measures kidney health) has been steadily rising since May (bad). Ideally, creatinine is under 1.0. Here’s a visual:

  • Dec 2022: 1.0
  • Jan 2023: 1.2
  • Feb 2023: 1.1
  • Mar 2023: 1.2
  • Apr 2023: 1.4
  • May 2023: 1.5
  • Jun 2023: 1.2
  • Jul 2023: 1.5
  • Aug 2023: 1.8 (most recent)

What. The. Hell. Is. Going. On!? I feel like I’m on the fast track back to kidney failure and it’s completely too soon and seems to be despite the good and healthy things I’ve been doing. For those who don’t know, my donor brother was not just a good match for me - he was a GREAT match. What happened to 10+ years with this kidney? What happened to “such a close match” that if it weren’t for my lungs, I might be weened off rejection meds altogether with this kidney? What happened to the prolific, all-star performance after surgery? 😔

While my brain knows this is not my fault, my heart cannot help but collapse.

The 1.8 creatinine lab this week was devastating. I had a melt down while telling my boyfriend - I haven’t had the heart to tell anyone else except a close friend who asked how my labs went. Fortunately, my wonderful and thoughtful kidney doc called me the next day to discuss the results. We are going to proceed with an ultrasound and biopsy for more information. The problem could be something physiological, which the ultrasound would show, or some kind of toxicity from one of my medicines, infection, rejection, which the biopsy would show. However, none of my other labs raise suspicion for the infection or rejection options. Ideally, we would discover something that would explain both the low hemoglobin and the rising creatinine. I would love to catch that break.


Saturday, October 30, 2021


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!


Sunday, September 5, 2021

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. 


pictured: Serena and Mr Kitty looking out the front window

Thursday, October 25, 2018

The Zen of Walking Two Old Dogs

Some of my favorite clouds spotted recently - mare's tails!

Doc and Sam are now on a three walk per day schedule. Three very sloooow walks. In theory, going out with the dogs is a wonderful thing - getting a little exercise, enjoying the "fresh air" and neighborhood nature, and checking out the changes people are making to their houses. In reality, the situation is rarely that pleasant whether it's the constant sniffing stops, fighting the heat and mosquitoes in the summer or picking up a nasty poo.

Since I am on my own with the dogs this week I am walking them more than usual. The weather has finally cooled down into the 60s-70s and leaves are beginning to change color and fall. The dogs are in their golden years, and Doc (entering his 10th month with an aggressive cancer that we thought would have taken him long ago) more than Sam is beginning to wind down in his own way too.


I used to have no tolerance for letting my dogs stop and sniff while out walking: It's letting the pack guide the leader, and I'm not okay with that. As dog parents, Todd and I assert our leader qualities very little with these dogs, and this one thing was important to me. However, old dogs, especially old dogs who have been diagnosed with cancer, are allowed certain sympathies and leniencies - extra hugs, kisses and treats, occasional human food and, yes, an unlimited pass for stopping to sniff on walks.

Occasionally the stopping still drives me crazy, but it is a good time to practice being present in the moment, remembering that I am outside spending quality time with my two dorks! (Affectionate name for 'dogs' in the Smith-Platt house.) We are here and we are happy. This does not come naturally to me, I have to be deliberate: I notice the trees letting go of a leaf, the blue sky as an abstract slow-motion painting, the ambient sounds of tree-top leaves blowing in the wind or little squirrel feet brushing past fallen leaves with a crackle that sneaks up on you.

*     *     *
It's funny to me how dogs always seem to go to the same places to sniff, pee and poo. "That's not weird," said my friend who was walking with Doc and Sam and I last weekend, "we always go to the same places too." Well, maybe that's true.

I have different walking routes with the boys, but more often than not they are always attracted to the same yards. Sometimes I feel a little bad - one of our regular stops is a neighbor with a (formerly) well groomed yard and (now struggling) nice grass. Fortunately that neighbor has two dogs so hopefully he understands. Another neighbor around the corner has a female golden retriever and we can never pass by that house without a massive amount of yard sniffing. (I'm pretty sure Doc and Sam have a crush on her.) But it's not just yards with other dogs that they like, though that seems to help. There are plenty of houses with dogs for which they show no particular interest.

Corners and intersections seem to be universally popular spots for dog sniffing and peeing. This must be ingrained somehow into the dog psyche - I wonder if it's at all similar to how Native Americans made trail trees as signs for others? It's secret dog navigational information.

The number one favorite sniffing spot - which only shows up this time of year - is leaf piles. The bigger, the better! Forget about walking by a pile of leaves with Doc and Sam. (The leaf pile in front of the girl golden retriever's house? Gold!) They will walk straight into a pile that's up to their chest intently following a smell trail oblivious that they're making a complete mess. I have no solid evidence but I suspect that the best leaf piles are those in which reside massive amounts of stranger dog pee, squirrel poo, mold, grass and maybe even a bit of old road kill. As disgusting as that all sounds, you have to admit that it would be pretty cool to stick your head into a pile leaves and be able to smell all those things at once. Maybe the human equivalent of this would be walking into a coffee shop, a bakery, a laundry mat, or spritzing on your favorite cologne - all at the same time.


Thursday, September 20, 2018

Lung Transplant: Just Like a Hurricane

Sunshine before the storm

I sit listening to the gusts of wind outside and the rain drops intermittently hitting the living room window: What at first seemed like a bear approaching has turned out to be a mere fluttering of wind and rain.

I texted with a friend the other day about how things were going in Raleigh, directly in Hurricane Florence's target: "Good news for us but bad news for someone else," I started, before explaining that the forecast had become ever more favorable in the last day or so.

Fortunately we'd had warning of the storm since Monday (or at least that's the first day I started paying attention) - Tuesday was the first day I went out shopping. I had plenty of time to stock up on supplies: I had batteries, water, non-refrigerated food. I'd waited in line for gas, ordered medications and charged all of my electronic devices. The flashlights and emergency radio were out. We'd even gotten doggie Xanex filled for the dogs - but not before the vet had run out of stock and replenished the supply.

Hurricane Flo with Raleigh in its sights

As I was trying to sneak a walk in with the dogs between bands of rain on Friday, that thought returned to me again: Good for us, bad for someone else. Yes, we had been lucky, but we'd also had days to prepare. Then as the storm approached land, its course had started to move toward South Carolina. I thought about those folks who hadn't had as much chance to prepare - enough time for stores to run out of things like bottled water, restock and then run low again. I was thinking what shitty news it would be to have a hurricane unexpectedly on the way. So while the new prediction was good for us, it was bad for others.

In the same way, receiving a transplant from a deceased donor is an amazing thing for a recipient - literally a second chance at life - and is a terrible thing for the donor's family. Even more so than a regular death, transplant donor deaths often involve tragedy like car accidents, overdoses and other freak accidents of those who's time is far from seeming over. It's incredibly sad, and I think that organ donation often helps donor families find some peace with their loved ones death. I hope that my donor family has found peace.

New lungs have allowed me to hike to beautiful vistas such as this off the Blue Ridge Parkway in the NC mountains

It's always been a difficult thing for me to think about my donor family. Some people claim to think of and thank their donors every day. I've never been like that. I'm a little ashamed to say it for fear of seeming ungrateful.

It's not that I am not thankful - of course I am. When I think of my donor family it's more periodically, like when something happens to remind me that I'm not just a normal person now, which is how I feel most of the time, but that I am living on "borrowed" or "extra" time. You only live twice, I like to say. (Credit to Ian Flemming...although under that logic I know some people who have lived three times or more.)

I am grateful for time I've used to travel, lust after hockey players, see my nephews grow up and much more. I just don't feel I owe anybody anything for that. Is that so terrible?

The truth is, I think being an organ donor is the right thing to do, just as it is the right thing to file taxes, drive on the correct side of the road and not cut in line at the grocery store. These are all things that make society work smoothly. So everyone has to wait their turn to check out, and people who would otherwise die without organ transplants receive them without the "luck" of waiting for a perfect match. Makes perfect sense to me!

These may seem like loose analogies, but I also think it's the right thing for people to give blood, bone marrow or even a kidney to someone in need - as long as it doesn't put the donor in any kind of jeopardy. And when it likely comes time for me to need a kidney, I will not feel bad about asking everyone I've ever known to get themselves tested.

Why do I feel so entitled to this? My life has been hard. I don't remember a time when CF or diabetes did not affect my every day until my lung transplant. When I was a child, it was bronchitis and submitting myself to percussive therapy (which I rarely did without a fight); in high school it was being chronically late to school because my sleep extended into the morning hours as I tried to live the life of a "normal" high school kid; as I started into early adulthood, I dealt with coughing fits in public, coughing up blood, coughing so hard I peed myself...and then eventually I was on oxygen, not able to physically keep up with friends and not able to work at a job that I loved. After all of that, I feel like I've paid my dues.

 Spending time in MI with my nephew Simon has been one of the best ways I've spent my second life

Has everyone who's needed a transplant "paid their dues" in this same way? Absolutely not. Some lung transplant candidates smoked, some liver recipients drank. Many have not lived lives of chronic illness, but rather had acute incidents later in life that led to organ failure.

But I believe everyone deserves to live twice - at least, regardless of bad choices took place in the past. Lord knows I've done my share of irresponsible things. That seems fair to me. I don't want to live in a society in which someone may die because another believes that a doctor may not try to save their life if they have a little red heart on their drivers license. (Not true!)

So I will end with some numbers.

Approximately 20 people die every day waiting for organ transplants.

Currently 115,000 people are on the list waiting.

Only 45% of Americans are registered as organ donors, on average, though it varies widely by state.

And perhaps the most poignant: one organ donor can save eight lives, and enhance the lives of countless others with their corneas, tissue, bone and bone marrow.

Are you registered? Do your loved ones and people you care about deserve the chance for a second life too?