Tick tock goes the clock

I feel that I have experienced every single second that has passed since my great news 3 weeks ago.  I'm still thrilled, but now I'm READY for the next step.

I was finally able to get in contact with my donor coordinator this week (she was out on vacation) and she's had a chance to speak with the transplant nephrologist regarding my labs, and it doesn't sound like they were very good.

While the nurse coordinator can't tell me many details, she did mention that there could be more drastic measures needed in order to stop my proteinuria so that we can move forward with the Rituxumab.  She mentioned something about PD not being ideal, but I've spoken with my dialysis nephrologist and I'm not sure I agree.  It doesn't really matter all that much what I think though....I'll do pretty much whatever they tell me.

I, of course, head to Google to start researching nephrectomies and bilateral renal embolization, because I'm worried that one of those might be in my immediate future.  It's not easy to find anything that's understandable, but I stumbled across a couple of articles that might help me have an intelligent conversation with the nephrologist when I meet with him next Tuesday at Mayo.

As I understand it, a nephrectomy is probably a 2-month recovery.  Then there's 2 months of Rituximab.  THEN transplant.  That's a LOOOOOOONG time.

I felt awful when I told Adam.  He keeps telling me to not worry about him, but that really doesn't help much :)  I was talking to Joacim the other night and I actually made the statement, "I wonder what it's like for him to be waiting".  And then I realized that I know EXACTLY what that's like, and that he's now in my never ended state of limbo.  Sorry, Adam :)

I've gone to yoga 2 times this week (yay) but my weight is still wildly fluctuating.  Fuck...I don't know what to do to get to where I was.  Maybe I'm crazy for trying, but this weight just doesn't feel right to me.  And I don't feel as good as I used to in the morning.  I'm groggy, and never feel like I got enough rest, and that's after sometimes 12 hours in bed!  I'm freaking out a little!

I have no catchy title...just a lotta whine

More whine today....

I'm not feeling better, and I'm losing patience.  I'm sluggish both physically and mentally....what I wouldn't do for a burst of energy.

I know that yoga makes me feel better....it always has.  Back in January and February, I was going pretty regularly, and I felt so strong and vibrant.  And then pink eye and sinus infection.....nothing's been the same since.  I've tried to go to yoga after work, but I think I described what that's like in my last post :)  I went the other morning, and it felt amazing.  It just made me realize how much of a physical difference there is between the me at 9:45am and the me at 6:45pm.

I've been doing a few manual exchanges during the day to try to help take the weight off, but I can't tell if it's helping or not.  I'm not sure if I should fill with more fluid for a shorter amount of time, or less fluid for a longer amount of time.  It feels like a guessing game, and I'm guessing wrong at every turn.  The weight just keeps creeping on, and I feel powerless right at this moment to stop it.  Usually I can "course correct" quicker, but all o my little tricks aren't working right now.

And my labs.....damn damn labs.  My phosphorus is getting better (lower) but I've been relying on those binders and I didn't ever want to do that.  I saw today that my potassium was high right now, and that worries me more.  It's at 5.9 right now, and high potassium is a risk factor for heart issues, so I feel like a freaking ticking bomb.

I need time. Time to get into a morning yoga schedule.  Time to plan more appropriate meals.  Time to prepare them.  All of these problems are fixable in theory, but the amount of energy it takes to do any of it isn't something I can fix, and it's my limiting factor right now.  Eating healthy takes work, and I don't want to spend my beautiful,  sunny Sunday meal prepping.  We don't get enough of this beautiful weather, and I want to soak in as much as I can.  Besides, I'm so exhausted and sleepy all the time that even if it were a crappy day, I'd still be too tired to do much.

I may have a smile on my face, but in  my head I'm thinking, "fake it till you make it".

Also, no answer from Mayo yet.  My coordinator is on vacation, but I was able to talk to another nurse who's covering for her.  They do have all of my labs, but it probably won't be until Tuesday that I hear anything back.  Good news is that my labs today showed that my albumin was at 2.0, and I don't think it's been there in 4-5 years.  Hopefully it's enough!

The frustration of weight control

I have become acutely aware of my weight since I started PD.  Every morning when I wake up, the first thing I do is go to the bathroom and then weigh myself.  It's also the last thing I do before I hook up every night.  The reason is to help me understand my fluid balance, and to help me select which concentration of dialysis solution I need for that evening.

Unfortunately, it also has the side effect of making me bat-shit crazy about gaining any weight.  I had heard horror stories of PD...people gaining 20 pounds.  At the beginning of this journey, I didn't understand.  The fact that my kidneys still work a little helps me control my fluid balance a lot, and I was usually able to pull off all the extra fluid every night.  But I've noticed that changing in the last few weeks, and it's quite unnerving.

Nothing feels right right now, and I can't put my finger on it.  The level of exhaustion has reached new highs.  My sleep requirements are starting to get in the way of everything.  And any physical activity is met with a general flu-like feeling the next day, with aches and pains (especially in my hips and legs).  I'm cramping quite a bit at night too, and Joacim tells me that I was throwing punches in my sleep last night.

It's all very, very draining.

I'm not sleeping.  I'm gaining weight.  I'm not exercising.  I'm sore ALL THE TIME.  I have occasional (and unpredictable) pains in my stomach that are only remedied with a prone position and a heating pad (which makes customer calls a bit difficult).  And I have no idea what to do to fix any of it right now.

I suffered last night through a manual fill just to try to pull off extra fluid.  I put in ~1800ml, but then I had such a hard time breathing that I never left the bedroom after that, and just hooked up to the cycler to remove it before my full nightly dialysis.  I was able to pull off an extra 400mL for that manual exchange, which is great, but I had to stop my full cycle an hour early because I got on it so late, so I was only able to pull of 850ml overnight, when I typically pull 1100-1300.  Essentially, 2 hours of extreme discomfort for zero gain in overall fluid removal.  And I weighed myself this morning, and I'm heaving in my morning weight than I've EVER been since starting dialysis.

It's all horribly discouraging.  I'm trying to keep a smiling face, but that smile is waning.

Still no word from Mayo yet either, even though I know they have my blood results.

Even more bad news for me is that my amazing PD nurse, Amy, is moving on to a brighter future at a new location.  It's great for her, but I'm really sad about it.  Amy is an AMAZING nurse, and I also knew that she had MY best interests at heart.  She truly cares about her patients, and has been with me since the beginning.  I'm not sure if they're going to replace her position, but even so, they can never replace the compassion that she showed me.  This makes me really nervous because I know how hard she's been working with Mayo to ensure my transplant continues to move forward.  It looks like it's going to be more work for me coming up.

Amy, if you're reading this, I want to tell you Thank you.  Thank you for treating me like a human, and for giving me the credit that I know my body.  Thank you for teaching me, and listening to me.  You're an incredible nurse, and an even better friend :)

Rough few days....

I feel pretty rough right now.  The last few days have been a struggle for me, physically.  I'm still riding my high, but days like I've had recently ground me quickly.

I've spent a stupid amount of time the last 3 days sitting.  Sitting in meetings. Sitting in my car.  Sitting in my desk.  Sitting at lunch.  This job seems to entail a LOT of sitting, and it's killing me, literally.  Days like these I gain wait.  I feel sluggish.  I feel awful.

I've been struggling with diarrhea (tmi, I know, but deal with it), so that's no picnic.  All of the swelling is limiting my range of motion, and I'm cramping a hell of a lot.  I had one in a meeting yesterday, and it took everything in my will to not cry.  I'm tired of putting on a good face at work.

I went to yoga, FINALLY, tonight. This was the first night that I thought I could actually make i though the class.  I did, but just barely.  There's such  drastic difference between when I go to yoga in the morning and when I go after work.  In the morning, I'm full of energy, an feel graceful and beautiful and strong.  In the evening after a long day at work, I feel like an elephant crammed into spandex doing yoga on a balance beam.  It's not pretty.

I got home, took a shower, and this overwhelming exhaustion game over me. I even asked Joacim to brush my teeth for me, but he didn't take me up on it.  Then I started to feel REALLY bad.   My blood pressure is okay, but my heart rate is up around 100, resting, and it's normally around 70 (not much better :(.  My heart rate freaks me out, especially when I compare it to Adam's.

His lowest measurement was 37bpm.  Holy hell, that's awesome.  Granted, he nearly rode enough miles on his bike during the month of June to go to New Orleans, but still :)

I have such an uphill climb to get to where I want to be physically, and it's daunting.  I can tell that this is getting harder.  My sleep is not as great as it was in the beginning, and it's getting REALLY hard to wake up, even though I'm in this bed 9.5 hours a day.  I have no idea how much is enough sleep, as I haven't reached that point yet.

So.....when's the big day?

"When's the date?"  This is a question I get asked daily.  Totally makes sense since I got THE BEST NEWS EVER a week ago, but unfortunately, I don't have an answer to THIS question....yet.

The last time I was at Mayo was back in October to get evaluated for transplant.  This was BEFORE I  started dialysis and I was pretty sick at that time.  Since then, all of my care has been through Davita, so Mayo has no idea if I'm better or worse because they haven't seen any labs.  I've been in contact with my donor nurse coordinator (Tammy), and she's now in contact with my amazing PD nurse, Amy.  Together, these two ladies will do whatever they can to keep this process going.

I had my regularly scheduled nephrologist appointment on Monday, which was great because Tammy was able to talk with Amy before and get lab orders created.  I did a random urine collection at my appointment, and they did a blood draw as well.  These will be processed at Davita, and the results sent to Mayo.  Amy also sent my last 4 months of labs to Mayo as well.  The only thing we didn't already have was microalbuminuria, which is what the blood draw and urine collection will be used to measure.

Once Tammy has everything she needs, she'll work with the nephrologists on the transplant team to determine a course of action.  The biggest concern right now for me is my albumin.  It's at 1.9 right now, which is better than October when it was 1.6.  Unfortunately, normal people have an albumin that's 4.0 or higher, and I'm pretty far away from that.

I've been working on bringing my albumin up for years, but it doesn't budge much because no matter how much protein I eat, I pee most of it out.  Oddly enough, right now, my biggest hurdle to getting a new kidney is trying to get my existing ones to stop completely.  Often times, people on dialysis stop urinating completely, but I'm still going, which means my kidneys are too.  And while my kidneys are still working, they're still spilling protein.  The question is how much protein.

The reason all of this is important is primarily because of the FSGS Protcol that I need to follow.  Because my disease has a higher chance of recurrence after transplant (meaning it can come back in the new kidney and we start this whole rodeo all over again), I have a medical protocol to follow to help ensure I'm in the best condition possible to prevent recurrence.  That protcol entails taking one dose of a drug called Rituximab (or Rituxan), waiting 2 weeks, taking another dose (this is by IV, btw), and then waiting 2-3 months to see if there's been any reduction in B-cells.  If there has, then I do plasmapheresis (basically dialysis) to clean out the cells from my blood.  

But I can't do ANY of this until my albumin goes up.  Based off of my October labs, this makes sense, because I could go through the process of getting the Rituximab, but I'd just pee it all out.  So, here's what the future looks like:

1. get labs done at Davita
2. wait
3. hope
4. work with Mayo to determine course of action to get me healthy enough for FSGS Protocol
5. get healthy enough
6. Rituximab
7. wait
8. Rituximab
9. wait for what seems like an eternity
10. hope like hell that it worked
11. plasmapheresis
12. GET ADAM'S KIDNEY!!!!

So, what are some of the options that could be presented to me once Mayo gets all of my labs? Honestly, I'm not sure, but I've got a couple of possible scenarios (this is all me guessing by my own research, btw):

1. albumin infusions - seems least effective because if I'm still losing a lot of protein through my urine, then I'll just pee out the albumin too
2. possibly change to hemo as there is some extra protein loss daily from the PD fluid - this also seems unlikely based off conversations with my dialysis nephrologist, but not sure how unlikely
3. take a bunch of NSAIDs to knock 'em out
4. cut of blood supply to kidneys (via radiology) so they essentially starve and die. This was described to me as potentially painful, as it's like giving your kidney's a heart attack.  I haven't researched this too much yet though

Overall, it's a bit frustrating because I don't have answers, yet it's not NEARLY as frustrating as not having a donor.  Having Adam approved opened up the door to having these conversations now.  I'm frustrated because I'm not patient, and it feels like I've waited forever, but I can wait a few more months if I know it increases my chance of success.

And I still can't wipe this smile from my face.

Details of the "yes"

I slept blissfully last night.  I slept for nearly 11 hours, and I woke up feeling physically and mentally better than I have in quite awhile.

So, I wanted to write details about yesterday because I don't want to forget a thing.  This blog is my entire record of this process.  I plan on printing a book for myself of it when I'm on the other side, so I want to make sure I capture everything.  I haven't been doing a great job of that since I've been on dialysis, and I'm sure I'll be disappointed with myself later on for not keeping up.  It's strange....before I started dialysis, I wrote about every minute little thing, but once I started dialysis I completely changed and wrapped myself up in a little emotional ball, not wanting to deal with it.  I got to the point where I just didn't feel like I had any more to offer, and I stopped writing.  Part of it was denial, part of it was depression.  But now my little black cloud has lifted and I'm ready to write again.

A bit of a recap of last week.  Mayo was kind enough to allow Adam to do his follow-up blood pressure testing at home, and they set it up through the University of Minnesota.  Adam picked up the monitor Thursday morning, and then wore it the remainder of the day while he was at home (having taken a vacation day).  I think he binge-watched a lot of shows on Netflix and hung out with his dog.  He turned in the monitor on Friday morning, and received the results Friday afternoon.  The results were incredible, really, from my perspective.  His heart rate average was in the 40's (which is a little more than HALF of my heart rate!) and his blood pressure was OPTIMAL.

Needless to say, we were feeling pretty good.  I'm so thankful for Adam and how dedicated he is to this, and his willingness to do whatever it takes to keep things moving forward.  He reached out to his coordinator, and we had hoped for a call from the nephrologist at Mayo on Monday.  We didn't get a phone call, but he did get an email from his nurse coordinator that said the nephrologist had reviewed his results and that she agreed they looked good.  Frustratingly non-commital.....it's like they're trained to not get anyone's hopes up, right?

Adam and I spent Tuesday together driving to Iowa for work....I feel like we've seen a LOT of each other this week ;).  We knew that Wednesday was the BIG day in that its when Adam's case was going to be presented to the transplant committee again.  I knew that meeting was in the morning, so I was on pins and needles after 10:00am.  We had a meeting together at 11:00a, and neither one of us mentioned it...I think we were both anxious.  I went out to lunch after with another co-worker, and got back into the office around 1:15-1:30.  I dropped my stuff off at the conference room in the front of our office, and then I headed back to Adam's office, and ran into him on my way back.  He was on the phone, and I KNEW that it was THE call.  All I heard was "yes" and saw this immense smile flash across his face.  Damn....that was an amazing moment!!!!!!

I ran off to call Joacim, but he wasn't answering his phone, so I just sat in a conference room and cried.  No, I sobbed....like a baby.  All of the frustration and anxiety and fear and hope just washed over me.  I think is stared hyperventilating a little bit ;)  I honestly didn't know what to do with all of my happiness.  Ideally, I would've been at home with my family, but I was at work so it was a bit of a different experience.  I found Bill in another conference room (Bill's brother was my nephrologist before I went on dialysis, and he used to be Adam's boss, so we know each other really well).  Anyway, he's always been a bit of a calming influence, so I went in to talk to him and just get out some of the happy.  Adam must've heard me sobbing and came in, and we both just talked, and it was just freaking amazing!!!  Shit, words are never going to do the feelings justice here, but this picture pretty much sums up the emotions!! :)

I wish I could've just left work right then.  I clearly wasn't capable of doing much except for smiling and talking about it.  Unfortunately, Adam and I were both doing a presentation for work in an hour...what a buzzkill!!!!  We had to go, but it wasn't willingly :)

After that was over, we headed downtown to the rooftop garden of Adam and Noel's (his girlfriend) apartment to sip some champagne and celebrate!  Joacim left work early, picked up Izzy and headed down as well.

It was literally the perfect little celebration.  I just don't think I can wipe this smile off of my face.  I read all of the Facebook comments, and this warm gushiness washes all over me.  I want to thank every single one of you who took the time to write a positive message to us, but my fingers may bleed because that was A LOT OF PEOPLE!  I felt every single drop of the love that was flowing yesterday, and I just feel so damn lucky right now.

It feels as good as I thought it would :)

YES!!!!

It's 3 little letters, but combined together, today, made all the difference.  Adam has OFFICIALLY been approved for kidney donation!!!!

I'm giddy.  I'm so damn happy that I can't hardly stand myself.  I had an appointment with my physcolgist this morning, before we found out, and I told her that I wanted to hear "yes" and I wanted to feel every awesome feeling that went along with it.  And I have.....all of 'em!

Over 250 people took the time today to let us know how happy they are for us (or to tell Adam that he's incredible :)  It's so freaking WONDERFUL!  Thank you to everyone who has reached out in some form or another.  Honestly, you guys....no one will ever really "get" how important every single one of those interactions are.

I have a gazillion things I want to write here because I want to remember every single detail, but it's SUPER late for me and I'm emotionally spent.  I think that I'm going to stop right here for now and have what I hope to be the most peaceful night of sleep that I've had in a LONG time.

June 19

The donor coordinator for Mayo Clinic called Adam today, and let him know that they want him to repeat the blood pressure monitoring in 30 days, which is June 19th.  So it's "sort of" an answer for now, I guess....

I know...I know...it's not a "No".  I swear...if one more person tells me that I may freak out.  It's not a "No", but it sure as hell isn't a "Yes" either, and that's what I need.  Telling me that I should be glad it's not a "No" makes me want to punch you.  Seriously.

I'm much calmer today regarding the outcome than I was Monday (which, after reading my previous paragraph, you may doubt :), which is either because I've had time to let all of the feelings settle, or I'm already emotionally dead inside.  Some days, I definitely think it's the latter.

I'm not going to go on and on about what I feel today, because frankly, it doesn't matter.  There is absolutely nothing I can do to better this particular part of my situation except for wait, which just sucks.

I may go a little silent here over the new few weeks as there really isn't much else to update.  Dialysis continues to go on, and I'm continuing to do "well" considering I have a tube coming out of my abdomen and require a machine 9 1/2 hours a night to live.  I'm struggling with a LOT of fluid retention right now, and I'm really hoping it's somehow related to the anxiety of the last couple of weeks.  Having a few weeks to get off of this roller coaster sounds good right now.

Thank you....ALL of you...for your support and kindness.  I AM "feeling the love" right now, and I'm truly grateful because it DOES help me weather the storm.

I wish no news was good news...

.....but it's not.  It's just limbo.

Adam turned in his blood pressure monitoring unit last Wednesday at 3:45pm.  While neither one of us expected to hear something that day, we DID think that the nephrologist would call Adam on Thursday and let him know something, but that didn't happen.

And she didn't call on Friday.

And she didn't call over the weekend.

And she hasn't called today.

As far as Adam and I can "guess", she (the transplant nephrologist or the donor nurse coordinator) is waiting until after the transplant committee meets this Wednesday to see if they'll move forward with Adam.  He's left messages, so they know he's anxious to hear.

The wait is endless.  The amount of anxiety flowing through my body daily is indescribable.

I can't seem to hold it together right now.  Today at work, I cried in front of the entire office during a presentation.  It was a short "Who am I in 5" (essentially tell everyone a little bit about yourself in 5 minutes).  One of the statements I had on the slide was "Advocate in the kidney community", and I don't know what happened, but when I read the word "kidney", I started crying.  Like, not a little tear, but the UGLY cry.  I couldn't stop.  I can't stop.  I can't seem to talk about my situation very well right now without tears, and it's really frustrating to me.

I'm all about being open on this blog, but I never want to be weak, and I feel weaker than I've ever felt right now.  Limbo, for me, is worse than "no", because there's no conclusion.  There's no "what's next?"  There's just waiting.  And it's not as if this is something that I can just tuck away and forget about it.  It's permeating every since minute of the day for me.

It's affecting my job right now, as I'm not really able to focus very well.  It's affecting my health in that I've gained nearly 3 kilos in the last week, all because I'm constipated from the stress (tmi, I know, but constipation can be a big problem for PD patients).  And I'm not sleeping well...at all.  It just affects EVERY.  DAMN.  THING.

I am just a basket case in the worst state of limbo.

Hope is a 4-letter word.

Today didn't go as hoped.

There were so many good things over the last 2 days, but it only took one "not so good" to derail the happy train, and it sucks.  I was telling my friends Lie and Emily how emotionally complex and and draining this all is and that I needed to get these thoughts out of my head, so here goes.

I went down to Mayo today to keep Adam company as he was completing day 2 of his donor evaluation.  He had sent me a pdf of his lab numbers the previous night, and I was nearly giddy (and terribly envious of his numbers :), and was feeling pretty positive.  I met him at Starbucks after his CT scan this morning, and he recapped the previous day, and then off we went.  Every time he came out of an appointment, he did it with a smile.  Each appointment seemed to lead us both to believe that this was nearly a done deal...that a "yes" would be the ultimate outcome.  I let "Hope" creep in a little bit more with each appointment.

But then he met with the nurse to review the results of his 18-hr blood pressure monitoring, and the numbers weren't where Mayo wants them.  According to Mayo, he is hypertensive.  I think we both knew that these results kinda popped the happy bubble we were both in.  At the end of the day, he met with the transplant nephrologist again to re-cap the testing, and she essentially told him that he needed to cut things out of his diet, and that they'd retest in a month.

It felt like "Hope" gave me a roundhouse kick to my ass.

What I am amazed at is that Adam somehow convinced Mayo to let him retake the test.  Right then and there.  I don't know how in the hell he did it, but I can't convey in words how thankful I am that he's so invested in this.  I'm not sure many people could do what he did, honestly.  And so now he's spending another night at a hotel in Rochester with a blood pressure cuffed strapped to his arm for 24 hours.  He'll turn the monitor in at 3:45pm tomorrow, and then we wait.  No matter what happens, it'll be at least a week before we hear good news, and by good news I mean "YES".  Every other test result was stellar.  It's just this blood pressure.  Now, I take my blood pressure at least 2 times a day, so I know how susceptible it is to my own emotions (good or bad), so I've got to hold on to that right now to get through these next few hours/days.

Okay....so that's the facts.  Now let's get to the feelings.

I feel sad, scared, frustrated, mad, worried and empty all at the same time.  I'm going to go out on a limb and say say that he's having similar thoughts right now, but he also has the additional feeling of a short term/high pressure situation that he's worried he really wants to succeed in.  I'm not going to be all "rainbows and unicorns" about it.  I'm worried too.

You see...this is why it's so complex.  I'm having a hard time writing down my feelings honestly because, no matter what I type, I think I sound selfish.  But seriously, we are talking about my life here, so I guess selfishness is a little OK.  Honestly, right now I'm more worried about Adam through tomorrow.  Dammit...this whole thing sucks.  And when I look at the last 2 people who've tried to donate to me (Buffy and Adam), I see the picture of health.  Buffy is heavily into fitness and eating right, and Adam takes 100 mile bike rides on the weekend...for FUN.  If THESE two people aren't able to donate to me, then what are my real chances of ever finding a match?

Hope

I'm feeling hopeful right this very second.  Who knows how I'll feel tomorrow (or the day after that, for that matter) but I'm hopeful right now.

I've gone "radio silent" again here on my blog.  Actually, I've been pretty silent everywhere lately when it comes to social media.  I'm pretty sure it's depression, as I think I've withdrawn into my own asshole sometimes :), but as with everything, I'm working through it in my own way and on my own timeline.

I've tried to explain the emotions that go along with this whole "thing" to dozens of different people, and I always find the verbal explanations pale-ing in comparison to the raw emotions.  I want to hope...to honor the people that are trying to help me by getting tested, yet my heart remains guarded and somewhat cold.  It's not intentional....honestly.  It's just survival.

I was surprised about how much of a mental setback it was when we found out that Buffy couldn't donate to me.  When I heard the news, I just instantly fast-forwarded to Christmas, and still relying on a machine to keep me functioning and alive.  I thought about all of the weekend getaways I'll miss this summer because it's such a hassle to get everything together to go anywhere that I just don't even try, even though PD dialysis was the least impactful type of dialysis in regards to my lifestyle.  Hassle is a HUGE deterrent for me, especially now.

But here I am again, feeling hopeful and guarded.  My friend, Adam, is at a hotel room in Rochester right now (hopefully sleeping) in preparation for 2 days of testing to see if he's a match for me.  He's O+, and as I understand it, he's a 5/6 for HLA matching (that's good, btw).  Now he has to go through the mental screening, meet with nephrologists, surgeons, social workers, and get some other tests done like EKG and a CT scan.  After all of those are done, we wait until  probably the following Wednesday to see if it's a go or no go.

I've been here before.  I'm not confident, nor am I pessimistic.  I'm nothing right now, but there's safety in nothing (at least in my head).

I'm going to go and spend the day with him at Mayo on Tuesday.  I didn't do this with Buffy, but I wish I would have, and I'm not to going to make that mistake again.  If someone is willing to do this for me, then I'll drop everything.  I think with Buffy, I didn't know what to do.  I didn't know what my place was or how I was "supposed" to act....I was scared that I was going to intrude.  But after all was said and done, I realized there are no rule books.

The 2nd week April, Adam and I went to lunch.  This was right after Buffy and I found out that it wasn't going to work out, and I was in a pretty bad place.  I don't know what it is about Adam, but I find it very easy to "dump" out my emotional diarrhea, and that's what I did during our lunch.  But the biggest surprise of all came when he told me that he had called Mayo and started working through the process.  I had no idea....I was completely stunned, humbled, excited, terrified and hopeful.  And through that simple little act, my faith in humanity was restored.  I talked to him about the process, and my emotions going through it.  The weird thing for me is that I don't want to say too much about it to anyone because, if it doesn't work out, I don't want him to feel bad.  I felt the same way about Buffy too.  But then I realized silence isn't going to change that.  People that do this have a special quality about them...they become invested in the process, and even excited about the prospect of being able to give someone the ultimate gift.  By being silent, I'm doing THEM a disservice.

Also, by being silent, people forget.  People move on about their life, seeing me go about through my day, and they forget that I'm very ill.  They often don't know that I'm just hanging by a thread sometimes because I put up a pretty damn good front.  I can't let people forget.  I'm sick.  I will be sick until I get a kidney.  Even after that, I may be sick...there's a chance but I don't know what that percentage is.  Right now, I have a 100% change of living on a machine.

Even if he isn't able to donate, I couldn't be more thankful.  Every person who goes through this process with me is just one more voice....or an advocate, for me and the hundreds of thousands of others like me....waiting.