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.