Transplant approved (by Cigna)

Don't get too excited....it doesn't mean I'm scheduled to get a transplant.  It just means that Cigna will let me when the stars align.  One less thing to worry about.

Joacim's transplant coordinator called him today after their review, and his kidney function is fantastic, which is awesome news!  They'd would likely take his right kidney, as his left kidney has 2 arteries and they're rather cut less than more.  There is still the question of his a1c.  In order to get more info, they want him to do a glucose test, which is essentially a 12-hour fasting, blood draw, drink awful glucose solution and wait 2 hours, and then blood test again.  I'm not exactly sure when that'll get scheduled but hopefully soon!

Got my lab results from my appointment last Monday.  Creatinine now at 4.1.  I was told by a friend that, after 1.6, the rise is exponential.  Still, going from 2.1 to 4.1 in a month is nerve-wracking.  I feel like an eggshell.

My appointment at the U

I had an appointment with a transplant nephrologist at the U of Minnesota transplant center this past Monday.  I had met with this doctor last year when I was pursuing a pre-emptive transplant.  Now that my eGFR is below 20, I needed to see him in order to get the final go-ahead for active listing on "The List".

I wasn't really sure what to expect from this appointment but right away I became discouraged.  He started talking about my meds, and how strange it was that my creatinine was rising so drastically, as though he was trying to attribute it to one of my meds....as though it can't REALLY be true kidney failure.  Dealing with this for so long, all I heard was "I don't believe you".  My judgement probably became a bit affected after that.  He mentioned the possibility of me going back on cyclosporine in order to see if my protein loss will go down (wtf???), but in the end he mentioned that it's more of an academic exercise than anything else (which tells me ain't no way in HELL I'm doing that).

We discussed what my options are in regards to the transplant itself.  In most cases, a kidney transplant patients' protein drops by 99% within a month of transplant.  Because I'm spilling so much protein (17 grams at last count) it will probably take longer for my protein loss to drop.

There are some who think that any amount of extra protein can cause damage to the transplanted kidney, and steps should be taken to eliminate the risks, i.e. removal of native kidneys.  This is a MAJOR surgery, and it terrifies me.  It has a long recovery period, and would guarantee that I would have to go on dialysis for a couple of months in order to recover, and THEN proceed with the transplant once my levels have dropped.

And then there are some that aren't too worried about all of this, and think that a nephrectomy isn't necessarily a great option due to the inherent risk with that surgery.

And it seems that there's no consensus.  I have no idea what kind of a say I have in this, or if I even have any.  I honestly felt less hopeful after the appointment.  He wants me to come back in 6 weeks for labs.  All I heard was "you have 6 more weeks of limbo hell".

While I was at the U, I asked to meet with my social worker, and I found it to be very helpful.  I asked her to refer me to a renal dietician who can help me work through my issues with food restrictions (which dates back to my predinsone days when I was diabetic.....awful period of my life). I also asked for some references for a psychologist that specializes in chronic illness, as I think I really need it right now.

I asked how medicare works, and she did a great job of giving me JUST enough information to calm my fears without freaking me out.  She told me I'm one of those people that know too much (clearly not the first time I've heard that :)

There are so many crazy/strange/dark/happy/bizzare thoughts that filter through my head all day long, and I'm honestly having trouble being objective and working through them.  I worry about the impact of all of this on Izzy.  I worry about who's going to walk the dogs when we have the donation/transplant, as they told us it would most likely happen at the same time, even though he's not donating directly to me.  I think the plan is for Joacim's dad to come and stay with us during our recovery, but there's still the issue of getting us to doctor's appointments, Izzy to school, dogs walked, groceries, etc.  It's a whirlwind of logistics!!!

And then there's the post-transplant concerns that I have.  I know this is going to sound bizarre, but screw it.  I'm putting it out there because I can't be the only one who's ever thought it.  I'm worried about who I'll be after the transplant.  This kidney disease has become part of my identity....who am I without it?  It's one of the first topics of conversation now....what do I talk about after it's all over?  How do I transition to "normal"???  How do I live a life that's full and rich, being able to forget about how crappy I feel, while still being respectful of the extreme sacrifice of my donor and Joacim?

I'm sure a lot of this crap I won't be able to figure out, but I still need to talk through it.  Now.  Before I get so sick that I can't.  Ugh....the mindfuck continues.......

Joacim's donor workup

Joacim had his donor workup last Friday at the U of Minnesota Transplant Center.  As I had already been through a workup last year as a recipient, I was familiar with the testing that he'd go through.  The only thing that really differed was that he had to do a CT of his kidney using contrast dye in order to see if all of the vessels and arteries were working properly.  His transplant coordinator told him that they essentially build a 3-D image of his kidneys where they can move them into any viewing angle they need.  It actually sounds really cool, I just wish we could see them too!

Here's the patient filling out one of a gazillion forms

Anyway, so far, it looks like Joacim is pretty healthy.  His a1c was high though (well, higher than than they want, which is below 6.0).  A1c measures the average blood glucose control over the past 2-3 months (and he's been on a candy binge lately)   That doesn't necessarily preclude him from being able to donate, it just means that it's something they'll take into account when evaluating him.  His blood pressure is ridiculously fantastic, and he's lost a decent amount of weight in the last year, all of which is great...he just needs to watch his sugars, which is probably one of the hardest things for him to do.  He LOVES candy.  I mean....REALLY LOVES CANDY.  But this week, he's been great.  He's not eating any candy until this Saturday, when he'll then treat himself a little (all in moderation).  He's been very good about the amount of carbs he's been eating all week, going back to hard bread instead of regular bread.   I made pasta the other night and he didn't eat any, opting for something that wasn't so carb laden, so I think that's great!  He's got WAY more willpower than I do!!!!!

I don't know what his labs indicate as I haven't seen those results yet, but so far everything appears positive.  The transplant committee will meet next Monday to review his case, and then make the determination as to whether or not he can donate.  If he can, then they'll run our info through the databases and see if there's a match on the first pass.  If there is, then it's a pretty positive sign that this whole thing will work out.  Of course, this is totally dependent on whether or not he can even donate, and we won't find out anything until sometime next week.  The anticipation is killing me....again, more limbo.  If he can't donate, then I need to start reaching out to people, and I will absolutely hate every minute of it, but I'll do it.

In a weird way, part of me is almost relieved that Joacim can't donate to me directly.  There are a ton of emotions/thoughts associated with this whole process, and to have that in my home every single day sounds like a lot of pressure.  That's not to say that doing a paired donation is any less pressure, but it's just different.  I'm finding it so much harder to articulate the thoughts that I have now.  I think I need to just sit down and write more...I spend a lot of time thinking about this (nearly every second of the day :) and my thoughts go into all of the dark places no one wants to go.

Please everyone.....please send positive vibes that he can donate!!!!!

Latest trip to Mayo

Finally back home after a SUPER long day.  Since I was getting my lipids done I had to fast, which I did a pretty good job of on the drive down this morning...until I found the stash of candy in my car.  Let's just say my glucose reflected a minor little binge.

But you know what?  Screw it.  A few jawbreakers aren't going to hurt my kidneys.

It's so very humbling whenever I go there.  Even though I'm going through my own struggles, and I don't want to compare mine to anyone else's, it's easy to see how much worse it could be.  I mean, think about all of the people all over the world that go to Mayo Clinic to see if they can make a miracle.  The amount of hope yet despair that the campus can contain is nearly palpable.

I don't think I've ever seen the Hilton Building lobby that full of people waiting to get labs drawn.  The phlebotamist told me this wasn't a busy day.  I beg to differ.  Again, I reiterate that Mayo is a well-oiled machine, yet I'm always treated with the utmost patience and respect.  It doesn't ever feel like a cattle call, and for that I'm thankful.

I had a ridiculous amount of time to kill between my blood draw and actual appointment with Dr. F.  I grabbed some breakfast to cure the hungry, and then walked around aimlessly in the sunshine for a bit.  I went back to the car and worked for about 45 minutes or so (brought my work laptop but didn't want to lug it around) as I had some things I needed to get done today, and then headed up to the penthouse of the Mayo Building (I kid....it's just the top floor).

Yup....hanging out with my iPad.  I was all excited to watch the last 2 episodes of this season's Game of Thrones, when I realized that I cancelled HBO last week without watching them, and now I don't have access to the recorded episodes.  Dumb dumb dumb dumb dumb....

I read a comment on this blog today that humbled me so much.  I feel honored and wanted to say "thank you".....you were a bright spot in my day.

So, anyways....results.  Well, nothing too new here, except that it's getting worser faster.  My creatinine is up to 3.5 now (creating clearance at 22 and eGFR at 15).  Dr. F says that I need to start being careful with my potassium levels now, as my kidney function is so low now.  I'm taking 3 medicines that technically increase my potassium, so I'll start doing an electrolyte panel every 2 weeks now to self-monitor.  If my potassium starts to go up, I'll need to stop taking the meds, and eventually start diet restrictions.  It's crazy how this is a complete switch from 4 months ago where I was in the hospital because my potassium was too low.  This ESRD stuff is such a HUGE balancing act!!!

My iron was low again, so I headed over to the infusion center for a boost and on my way I caught the end of this performance:

<iframe src="//player.vimeo.com/video/103390250" width="500" height="889" frameborder="0" webkitallowfullscreen mozallowfullscreen allowfullscreen></iframe> <p><a href="http://vimeo.com/103390250">IMG 1560</a> from <a href="http://vimeo.com/user1496827">Jenn Trunk</a> on <a href="https://vimeo.com">Vimeo</a>.</p>

I posted on Facebook "Expert advice and entertainment too!".  I LOVE it when I get to see something like this.  Some kid from somewhere walks up to a piano and knocks out THAT performance.  Inspiring.

While I was waiting for my iron to be delivered to the infusion center, a young volunteer walked by and asked if I wanted a hand massage.  Score!!!!  She did a lovely job, and was so personable!  What a nice way to have to get a shot (and that particular shot HURTS!!!)

Guess that's all that I have to report for tonight.  We're off to the U on Friday for Joacim's donor evaluation, and I have my follow-up at the U on Monday.  Such attention being paid to the defective beans this week!

Where's a rainy day when I need it?

(image courtesy of http://rosymairim777.deviantart.com/art/Stick-Figure-Animation-Jump-Off-a-Cliff-358390289)


Today has been emotionally challenging for me.  I'm just not "in it to win it" today, if you know what I mean.  Ever have those days where everything feels like a battle?   Yup...had one of those today.

I don't know what triggered it.  I had a horrific nightmare last night (and I'm not one prone to those) but I couldn't get back to sleep (probably added to the overall misery of my day).  I had to go into the office, and while I may have been there physically, my mind was a gazillion miles away.  When I finally got home this afternoon I went straight upstairs and got in bed.  I laid there for 3 hours listening to an audiobook.  Who does that?

This chick does, apparently.

I crawled out of my own ass long enough to eat dinner and pick up Izzy at gymnastics.  I swung by CVS pharmacy to pick up 2 meds that I had needed refilled, and it wasn't until I arrived home that I noticed the note on the bag that said, "COUNSEL - NEW DRUG".  Uhhhh...what?  Eventually arrived at the discovery that my own doctor sent in a new prescription for the wrong form of the drug (powdered drink instead of tablets.....and the powdered drink is HORRENDOUS).  People would probably be surprised at the number of mistakes that happen when you have this many meds to manage.  Today was not the day for this.  I know it'll get fixed tomorrow, but now I'm stuck with 60 of these packets of shit "fruit-flavored" potassium that I had to pay for and it's highly irritating to me today.

I shall now put my jammies on and crawl back into my cave.  Hopefully I can sleep the grump off.

Confirmation

I finally have it....confirmation that is.  And lab results to prove what I already feel in that I'm finally sick enough to be active on the transplant list.

And it hit me harder than I thought.  I think I'm still a little stunned and a lot scared.  Honestly, no matter the number of years I've been preparing or the research I've done can prepare you for someone telling you that you're in kidney failure.  It's odd how much hearing those words has rattled me.  I kinda feel like I'm in a bit of a fog right now.

So far, I've spoken to my transplant coordinator at the U of M and set those wheels in motion to get me active on the list.  She's also spoken to the transplant nephrologists and I have an appointment with him in a couple of weeks.  My insurance company has gotten back in the fold again and re-opened my case.  Joacim is scheduled for his workup the 2nd week of August for a paired exchange.

I have soooo many questions.......

1. When do I get a social worker?
2. Is there anything that they'll do to help  me feel better or am I just resigned to getting worse and worse and worse?
3. How does this whole paired exchange work?
4. I feel a noticeable decrease in my energy/stamina....is this real or imagined because I know my numbers?  It feels pretty damn real.......
5. Will my toes fall off because they're SO FREAKING COLD ALL THE TIME (okay, that's not a REAL question, but still.....fuh-reeezing)
6. Will I have to go on dialysis or will I be lucky enough to bypass it?
7. Are they going to do a nephrectomy?
8. How much time off of work will I need?
9. How do I go about getting time off of work?
10. How do I continue to wake up every day and putting in the effort when all I want to do is lie down and take a nap all the time?
11. Will I still be able to take vacations?  I mean, once you're on the list it can really happen at any time (technically). When will the surgeon/nephrologists say it's time?

Not all of these questions have answers, these aren't all of my questions and some answers will reveal themselves as this process moves along.  One thing I've already noticed is that I'm going to get VERY tired of hearing, "Oh, don't worry about that.  You've got PLENTY of time."  Okay, first of all...fuck "you/whoever" for saying that.  No one knows how long I have...no one.  And to try to "poo-poo" away my fears is condescending and irresponsible, and it honestly just pisses me off beyond words.

Thank dog for social media.  Honestly, I may bitch, complain, and generally be irritated by it a lot of the time, but the amount of knowledge I gain from my kidney groups is unparalleled.  There is no question too personal, too annoying, too "out there" and I get enough of a variety of answers to take back to doctors to talk to them about.  And my FSGS/pregnancy group on Facebook is such an amazing group of supportive women....I'm just amazed at their generosity and the effort they put into helping others in the group, even though they're also dealing with their own issues.  I heart them all.

The one thing I DO wish is that I had ASN (American Society of Nephrologists) membership.  This would allow me to do much deeper research, but that's a pricy membership that I'm not quite willing to shuck out.   I can read a lot of abstracts, but usually not full articles.

Ugh.....sooooo many thoughts.  So many questions.  So many emotions.  

Ummmmmm.......the downward slide?

I haven't been feeling well these last few weeks.  "Not feeling well" can mean a million different things, but in this case it's a "ohmygodi'msofreakingtirediliterallycan'tgetoutofbed tired".  Honestly, the levels of tired I can be never fails to amaze me.  I have been doing yoga fairly regularly, drinking green smoothies (not because it's cool but because they're yummy!).  I wouldn't say I've been eating as well as I normally be do, but I haven't bellied-up to a deep fryer or anything.  But no matter what I do, it doesn't help.  Nothing does.

So, labs.  I had the done last Thursday.  My thyroid was COMPLETELY wonky again, but that might be explained because I switched blood thinners.  The new one will not require the weekly blood draws, and I can eat green things again (double bonus!!!) without fear.  My iron was low but not awful, but my creatinine jumped.  I think it was 2.1 back in Marck, and it was 2.9 on Friday.  That gave me an est. GFR of 18.  Wow, kinda freaked out then.  I had the labs faxed to Dr. F @ Mayo, but he was on vacation Friday, and he didn't call me back until this evening at 5.  My primary care wanted me to make sure I was hydrated and repeat the labs, which I did today.  Now my creatinine is at 3.1, GFR @ 17.  So, worse.

Okay, I've got a LOT of thoughts on this, so I'm just gonna verbal diarrhea them right out of my head so I can sleep tonight, k?

1.  My thoughts are that labs should reflect your actual state, meaning I don't believe that I should put extra effort into being any more hydrated than I normally am in order for my lab numbers to improve.  Today's numbers show what's real.  I usually drink 3-4 liters of water a day....how much more is expected?

2.  My primary care wrote me a note telling me she'd recommend I hold off on taking torsemide (diuretic) until I talked to my nephrologist.  I think this is when I really started freaking out.  Seriously, these diuretics are literally the only way I could live a fairly "normal" life.  2 days without them and I can't wear most of my shoes or pants.

3.  So, do I stop taking the diuretics to see if it helps, knowing I'm going to suffer horribly?  And what if it does help?  What then?  Will I be expected to not take them at all?  In my brain, I think that sounds like drowning in my own retained fluid.

4.  I hate getting lab results late so I don't have a chance to review with my doctor and can spend the next 12 hours ruminating over everything awful.

5.  Am I now "sick enough" to be listed active on the transplant list?

6.  I'm scared because those numbers jumped quickly.  Nothing in this damn disease has been linear.

7.  Am I totally freaking our for no reason?  What if Dr. F calls me tomorrow and says something to the effect of "well, we knew it was headed in this direction" kinda thing and is all blasé about it?  I swear, the reaction a patient has is sometimes so dependent on the reaction from a doctor.

8.  If I were to go to an ER right now and they do labs, they'd probably hook me up to a dialysis machine out of sheer panic.

9.  I don't need to go to the ER....I feel technically fine, just tired and sleepy.  All.  The.  Time.

10.  How in the hell do I go about preparing my employer?

11.  What the hell is next????  I'm a planner people!  Knowledge is power.  And I have neither plans nor knowledge at this time.

Okay, verbal outburst complete.  I DO feel better ;)

Randomness...

I realized lately that I've become "that person".

You know that person...heck, maybe you're one of them too.

I'm talking about a Facebook lurker.  Or a "liker".  I spend my Facebook time scrolling through my feed, hiding shit that annoys me (of which there is plenty), and "Like"-ing things, but I hardly ever comment now.  I used to pride myself on being "engaged" with people, but now I'm just.....not.

Maybe it's depression.  Maybe it's lack of time.  Maybe it's sheer laziness.

Whatever it is, it's bothersome to me for some reason.  I know...I know....cut myself some slack...it's only Facebook, but I don't quite see it that way.  I have so many people I consider friends that I've never met in person through Facebook (a lot in the kidney community).  Heck, I started a group on Facebook!  But I hardly engage there right now.  Maybe it's because I don't have something sarcastic to say, and I feel that that's "my voice".  Sometimes I'm just wearing of all the bad karma crap I see out there.  As a liberal feminist, I'm shocked/appalled/horrified by the things that are happening in our world, and feel completely powerless anymore.

Maybe I'm going through a bit of a dip in my emotional state again.  It isn't easy always trying to pretend I'm normal, because I'm definitely not normal.  I push...I strive....and then I need a serious break.  Shit, I'm tired.  I need about 10 hours of sleep a night to feel decent the next day, and that's not been happening lately because I'm busy trying to pretend I don't need 10 hours of sleep.

I joined a kidney transplant group on Facebook and I'm learning a lot.  Some things are scary, while some things are just good to know.  Knowledge is power, right?

Joacim received his packet on the paired exchange program today.....maybe I'm subconsciously freaking out about that too.


Wow.  That's a whole lotta "maybes"........Maybe I'll have an answer someday :)

Antibodies are good......unless you need an organ

I'e mentioned before that my husband is going to be my living donor and that we started the process with the U of M.  Joacim did the initial blood workup 2 months ago, and he had to give a saliva sample a few weeks ago because too much time had passed since his blood work.  I also had to go to the U to do bloodworm for the antibody comparison.

Honestly, I've been incredibly disappointed by the lack of engagement and response from the U's transplant center.  In my ideal world, I would've thought that we'd get great service.  It isn't every day that a living donor comes along, right?

Guess I was wrong again.  Finally, I decided to follow-up with my original transplant coordinator (Joacim and I have different ones), and I left her a message to get information about the results.  Some lady named "Ann" called this morning from the transplant center, but didn't leave a last name or a phone number on her message (nice, right?) so I called Joacim's coordinator.  She looked at our file and flatly said, "There are antibodies."

Okay, for those of you that know nothing about organ donation....antibodies aren't a good thing.  Essentially one of us has antibodies in a percentage high enough to indicate a high risk of rejection.  Transplantliving.com gives a much better explanation:

Antibody Screen: an antibody is a protein substance made by the body's immune system in response to an antigen (a foreign substance; for example, a transplanted organ, blood transfusion, virus, or pregnancy). Because the antibodies attack the transplanted organ, the antibody screen tests for panel reactive antibody (PRA). The white blood cells of the donor and the serum of the recipient are mixed to see if there are antibodies in the recipient that react with the antigens of the donor.

 She's going to call into an immunologist, and the transplant team is meeting next week for review.  She said she'd follow-up but I'm doubtful.

I'm kinda stunned.

She's saying that he most likely won't be able to be my donor.

What the hell does that mean for me?  What do I do?

Honestly, I don't have a fucking clue.  I'm freaking out, no doubt.  Joacim's willing to be part of a paired exchange program (where he donates a kidney to someone else, and in turn, someone else donates a kidney to me as part of a chain) so all hope is not lost, but things just got a HELL of a lot more complicated and uncertain.

In my mind, for the last 2 years, I've just assumed that this would all work out.  Joacim would donate his kidney to me, I'd recover and then be off living life again.  Now, that all feels incredibly optimistic.  Does this mean I'll have to go on dialysis?  Will I have to wait a long time for a kidney?

I'm going to have to be someone that asks strangers and friends to make a supreme sacrifice for me.  How heartbroken will I be if no one steps up?  How emotionally rattling is this all going to be.  I hope that, when I look back on this one day, that my current freaked-out state will give me a good laugh.

I'm just wondering what the hell I'm doing with my life.

Radio silence....

It's been 2 months since my last post.....one would like to think that means that I'm doing well, but it's more like I don't have anything horrifically tragic to report, which I guess is good, but sad that my scale of life is "okay to horrifically tragic".

I think my job will be the death of me.  I'm a busy that I can't understand, describe, or get a handle of.  I don't have time to notice the nuances of my health that I once did, and for a person with a chronic illness, nuances are important.  They can help me identify triggers that make me feel bad, or help me notice things that make me feel good.  Now there's just.....no feeling.

A few weeks ago, I noticed that I was having a noticeable difficulty catching my breath.  It felt like I was walking up multiple flights of stairs, when in fact I was only walking from my car to my desk (a trivial distance, really).  I called my PCP to set up an appointment, as I was due for a thyroid check anyway, and ended up describing my symptoms to a nurse, who then told me to go to urgent care.  So I went to urgent care, and that's always a process.  People like me walk into places like that, and you can see the look on their faces when they see my labs.  It's like they're shocked that I'm still breathing.  Whenever checking in at any new place now, my line is, "I'm the healthiest sick person you'll ever meet".  They laugh, thinking I'm a nut job, and then they'll do labs.

Long story short, I ended up getting referred to the emergency room from urgent care, where I spent 6 hours essentially being ignored.  And get this....it's all because the urgent care's stat lab for potassium measured me at 2.9 and yet a couple of hours later, it measured 3.4 without any intervention.  So what that means is that the lab's measuring equipment is off.  And I got to spend 6 hours in an emergency room (out of network, by the way), only to drink a hideous orange liquid containing a boost of potassium and be on my merry way.

And yet, miracle of all miracles, I still have the exact same symptoms (sarcasm, my friends).  I can do a yoga class one morning, and yet the next day become winded walking.  It's unpredictable, insidious, and just plain awful.  And I guess I'm just supposed to "be okay" with it.   To feel "lucky that it isn't worse".

Screw that.  (I have harsher words, but that'll suffice for now).

Here's a great little ditty that I discovered last week.  I go to a medical building that contains my lab, my primary care doctor and my urgent care.  My PCP and the urgent care is an in-network provider, but the lab isn't.

They're in the same building.

They're all under Park Nicollet.

But CIGNA is a bloodsucking insurance company, so there's that.

My husband started the donation testing process and even that isn't going as I had thought.  Does anyone at the U of M give a shit?  I'm thinking no.  He's sent in blood work, I've done bloodworm, he did a saliva follow-up because time had expired.  And yet, here we are....3 weeks later, and no contact.  What the hell?  I mean......LIVING ORGAN DONOR WANTING TO DONATE ORGAN HERE!!!  WHAT THE HELL DO I HAVE TO DO?????

This would be my surrender flag.  

Sometimes ignorance really is bliss......

Today was THE BIG day.....which meant I spent a lot of time with this.

This (for those of you that don't already know) is called a bonnet, and it sits conveniently over the toilet seat so you can easily collect your urine (which is WAY better than a using a dixie cup :)

It was a fasting appointment, so all I had this morning was this.....can't describe how terribly unsatisfying this glass o' water was.

I saw this posted on Facebook today and had to steal and share.....it's too funny not to.

Safe delivery of precious cargo is muy important!!!

Blood....always more blood.....

Also a random urine sample up arrival....

....tucked away neatly in a tiny little bag.  They have specimen drop boxes all over the place.  It's really amazing how it all manages to work and get the labs processed in time for my afternoon appointment :)

Here is the delicious treat I rewarded myself with after I had dropped off my specimen and gotten blood drawn.  This is usually the highlight of my visits to Mayo :)

Okay, so, let's get down to the nitty gritty, yes?

Well, it didn't work.

In fact, according to the numbers, my kidneys are getting worse.  And I've been blissfully unaware of my numbers since last November.

This could be a temporary blip, or the actual failure I've been waiting for, I'll never know.

I'm not surprised.  I kept my expectations low.  Yet I was still sad when Dr. F told me. I think he genuinely was too.  He said he was sorry that he couldn't help me, and I believe every word of it.  I'm a puzzle that can't be "solved".

So where do I go from here?  Honestly, in this moment, I have no idea.  I've spent 8 years looking forward to "something", never really knowing what it was, only that I had hope.  And now I no longer have hope.  So that's a pisser.

I'll discontinue the infusions now, and do a follow-up in 4 months to check-in.  I'll start taking potassium supplements because I apparently can't eat my way into good numbers here (regardless of the amount of tomatoes and bananas that I consume).

For those that are interested in numbers, here they are:

Albumin:  1.7g/dL
BUN:  27mg/dL
Cholesterol:  306mg/dL (LDL 183, triglycerides 190)
Creatinine:  2.1mg/dL
Potassium:  3mmol/L
Creatinine Clearance:  31mL/min/BSA (this is my GFR......magic number for transplant listing is 20)
Total Protein:  16130 mg/24 hr

So now, I wait..........I don't really want to be cheered up.  I want to whine and wallow for a bit.  I'm allowed at least that.