Catching up....

 I gotta be honest....I don't feel much like posting here lately.  So many times I start writing the post kind of "in my head" but it all starts to sound stupid and self-centered.  I ask my self questions like "why in the hell do I think anyone actually wants to read any of this?" and then that pretty much kills any ambition I have.

Another reason I don't feel like posting is because things are going pretty OK right now, honestly, and this is the place I come to to vent or rage, and I don't have a lot of that right now.  But in all of the reading that I used to do on all of the kidney blogs that I used to follow, I noticed that, when all the drama was over (for the most part) they all stopped blogging, and that frustrated me.  I wanted to know what they were doing....all of the little mundane things after all of the monumental crises....I wanted to hear stories of their new normal and the journey as to how they got there....I needed to know that it was possible to live again on the other side of transplant or dialysis.  So knowing this, I'm going to work on becoming a more frequent poster again.  Even if it's literally the mot mundane things ever.

I'm a lot frustrated at myself for the entire last year, especially when I realize how far I've come.  We went on a pretty significant walk tonight with Rosie, and I kept thinking in my head "I couldn't do this last year because I was SO sick".  So many things happened in the last year....one of my best friends came to visit me with her family for a few days and it was incredible, another friend of mine decided that her life was much better without me in it and it's hurt me more than I can describe.  I've tackled doing hemo at home, and we finally took a vacation that required me to dialyze while on it, and I finally got back to doing hot yoga again and none of these are really documented well in this blog.  I will forever kick myself for not writing about it, but there were times that I just couldn't, and other times where I just didn't care enough about anything.  I was seriously depressed for part of it, medicated myself, and then finally saw light again.

My best friend and her family with my family during their visit last year

We just got back from vacation last week, and it was probably the most important thing I've done lately.  It gave me the confidence, and it made the world big again.  I was feeling SO restricted by dialysis, and focusing on all of the things I wouldn't be able to do because the travel aspect just seemed to be too much.  But I found a woman who's been dialyzing for years, and called her up....she helped me so much!!  And I sure as hell didn't spend time during the day thinking about dialyzing.  Our days were filled with so much walking that I was actually a little relieved have an excuse to just sit down for a few hours at the end of the day :)

I am suffering a bit from a fairly intense, dry tickle cough that I've had for months.  It'll get better for a couple of weeks in the midst of antibiotic, but it keeps coming back.  I've thought the entire time that it's because of my sinus issues (of which I'm getting surgically remedied on Friday....at least I'm hoping for some remedy) but I did some research today and think it may just be one of the shittiest side effects from my bronchiectasis.  I put in a call to my pulmonologist, who is, of course, not in this week, so we'll see what she has to say.  I honestly get sick to death of dealing with medical crap now that I let things go WAY too long, and then by the time I get a hold of the doctor I'm in a full-blown panic, yet this is the first they're hearing of it and are kinda blindsided by my frustration.  I'm sure there's not much that can be done for this cough, but I hope not.  Joacim has essentially moved into the spare bedroom now because I cough about every 15 minutes ALL NIGHT LONG.  I cough so hard that I vomit.  Frequently.  It sucks all to hell.  I need it to get humid again, because I never seem to cough in the shower, so I'm hoping humidity helps....it's been brutally dry this winter.

My blood pressure is SUPER LOW now, sadly not from the removal of my kidneys but due to a new med.  Now it's a little too low and is causing some dialysis issues, but we'll work on weaning off of some or lowering the doses to figure out what the sweet spot is.  I just cannulated my fistula in the area from my January surgery and it's going well...pressures are good.  I should have a buttonhole established by next week, and then hope to start training for nocturnal dialysis.

I did get to do a fun thing last week with the NKF.  Optum is a healthcare company based here by me, and they have a team of people who were putting together bags full of goodies for dialysis patients that they were going to deliver to city clinics.  I went there to talk to them all about my story and what it's like for me on dialysis.  I didn't have a prepared talk...kinda just went from the hip on this, but it went well.  I got great questions and overall really great engagement from everyone.  Didn't think I could do that a year ago either, but look how far I've come......I hope to get the chance to do a lot more speaking events in the future.

And now a bunch of vacation photos because they're fun and happy :)

Dialyzer (101lbs) and medical supplies (54lbs)

diaysate delivery

first vacation session

First impression of Harry Potter World:  AWESOME!!

Ice cream break

Train to Diagon Alley

Talking photos in Hogswarth

Wet clothes from a ride that, according to Joacim, "we wouldn't get too wet on" ;)

Giant connect 4 at the hotel pool area one night...

Family selfie on the first day at Volcano Bay

Funniest activity with Sue the Raptor

Good to see smiles....

Volcano Bay was amazing

Obligatory family selfie at the end of the day

Boxes of dialysate delivered the day before arrival

First vacation session...

I have a favor to ask...

Hi all!

It's been awhile since I posted an update on my health, but don't mistake my silence for good news.  Things aren't going all that well right now with my kidney, and it gets hard to post updates.  Sometimes because I don't feel well.....sometimes because it's too depressing.....a lot of the time it's because I just feel like I've run out of things to cover.

I'm still doing everything I can possibly do to keep this kidney running, which means 2-3 trips to Mayo every week for plasmapheresis.  It never gets easier, and it's unlikely to get better.  I'm just trying to continue to slog through it and trying to figure out how to squeeze some joy out of this lemon.

But the thing that motivated me to actually/finally post something is my friend (and kidney donor) Adam.  You see, he started a team for the 2016 NKF Twin Cities Kidney Walk called #FSGSSucks.  He and Noel (his wife) have been working really hard to meet an aspirational fundraising goal of $10,000 this year and I've not done a great job of using my voice towards the effort.  They've done a fantastic job so far, but there are still 3 days before the walk, and I'd like to ask anyone that reads this to consider donating to the team.

It doesn't have to be $50 or $100....seriously.  ANY amount will be greatly appreciated.  Adam and I had lunch the other day and were talking about how many people were going to physically join us this Saturday for the walk, and I was kind of blown away by their kindness.  I'm not usually a person who enjoys crowds, but I'd LOVE a crowd of people around us this Saturday for the 2016 kidney walk.  If you can't join us in person, will you please consider donating to our team site http://donate.kidney.org/goto/fsgssucks?

Also, please wish them the best of luck as they are BOTH running in the 2016 Medtronic Twin Cities Marathon on Sunday!!!

NKF Great Chef's Event!

I was invited to the NKF's Great Chef Event, which is an annual fundraiser that they run.  Chef's from some of the restaurants in the twin cities participate, we get to sample great food and wine, and there are silent and live auctions.  Lucky enough for me too was my friend Emily, and the fact that she was in town :)

This was Emily taking a picture of me and my tan...sadly, you can hardly tell in this photo.

I didn't know what to expect when I went, but I know I didn't expect to be overwhelmed with emotion.  There were so many people there telling their stories of transplantation and living donation, and it was incredible.  The hope that these people had/have, and how they all commented on how amazing they felt immediately after the transplant filled me with hope.

Even Matt's kidney donor was there, and it had only been 10 days since her donation!!!  So amazing!!!

NKF Awards Dinner

Because I was one of the the top individual fundraisers for this year's walk, I was fortunate enough to be invited to this year's awards dinner.  It was great to see people again, and to meet some new ones.

I met a gentleman who is also part of the Peers program (which is the mentoring strategy), and had just received his transplant in August.  He looked fantastic, and felt amazing, so it was great to chat with him for a bit.  I also met a lovely couple who didn't have a personal affiliation with NKF, but they were volunteers instead, which is GREAT to meet people like this who do this sheerly out of the kindness of their hearts.  They even live close to me...only a couple of miles away.

Here's the certificate and the medal that I received.  It's wonderful to be recognized for my efforts, so thanks to all of you for donating.

This coming year, I want to do more....raise more money.  I'm hoping to enlist my friends to cocme up with some great and creative fundraising ideas.  So pass along any ideas that you've got.  Thanks again!

NKF Kidney Walk - 2012

On October 13, I had the opportunity to participate in my very first walk with the National Kidney Foundation, and I gotta tell ya....these people know how to do it. I have no idea what the actual numbers were, but there were a LOT of people there, especially considering the crappy weather. There are two things that I'll remember forever about that day. The first is my friends who braved the elements, stood with me and supported me on this day. I don't reach out for help a lot, but emotionally, they all knew that this is what I needed, and I'm forever grateful.

breakfast provided to fuel our bodies for the walk

Caroline enjoying a warm cup of coffee

my friends, hanging out together, waiting for the festivities to begin

Izzy and Joacim playing around in the healthcare tent.

And the dogs.....there were SO many dogs there, dressed up for the dog contest.  Awesome.  Look at this little cutie!

Introducing Sidney the Kidney!!!  He was flashbombing my picture, but in a great way :)

dog + cow = dow or cog

here I am, getting ready to go on stage..yes, on stage

I was one of the top individual fundraisers for this walk, and those of us that achieved this milestone were given the opportunity to speak to everyone.

here's Izzy and Daniel...she was a VERY grumpy girl that day, but she sure does remember it

Here I am on stage, taking the following picture

And here's the picture.  Joacim's right in the front, and to his right is Aaron, who I met when I attended National  Kidney Day in Washington, DC back in March.  He was in the twin cities the day of the walk and joined my team, which was AWESOME!!!!  He also has the only video of  me giving my little schpeel (which went amazing well for me at least) :)

And here we are (with cranky Izzy) in front of my sign (also because I was a fundraising all-star)  Yay me!!

So that's it for the walk.  My girlfriends and I had decided to go out for a girl's night downtown, but my legs were swollen and I was cold, so we decided to have everyone coming back to our house for pizza, beer, wine and hanging out.  Between the walk and that, though, my friend Kristin (who has a membership to Lifetime Fitness) got us in as guests and we sat in the hot tub and sauna (although the sauna last less than a minute), but it got me good and warm from the inside out, and I felt great.  Everyone came over later and we had ourselves a nice little gathering,

at night, it's almost impossible to take a decent photo, but this was everyone chowing down on some pretty great pizza

Murphy...might be possessed by aliens

Caroline loves Rosie..I mean, who doesn't?  She put some sunglasses and a red lei from earlier in the day on Rosie, and it was hilarious, but it didn't last long enough for me to get a picture.  Maybe we'll trick her again sometime soon!

And then we started talking about our upcoming Halloween, and I decided that Caroline would make a PERFECT Grace Kelly :)

Man, it was such a great day.  It's hard to describe how special these people made me felt, even if they didn't even realize it.  Moving to a new state has been great, but building these friendships has been the icing on the cake!

Something's up : FSGS Sucks

Something's up and I don't know what it is, but I know it's something.

People like me with a chronic disease (or any disease, probably) are incredibly in-tune with our bodies, and I  can tell that something's not right...I just wish I knew what it was.

My eyes are puffy.  My entire body feels as though bugs are crawling all over me.  The swelling in my legs is intense...much like it was at this time last year, and it doesn't go away with sleep anymore.  I feel like I need one of those inversion tables in order to have any effect, but then that'd probably make me pass out, which would also equally suck.  Even my pee is different.  And the swelling is not only in my legs, but moving up to my abdomen and my neck.  And I've lost my appetite.

I'm off the Acthar, and I'm getting thicker, and I have no idea why.

If you look any of these things up, put together, they're not so good.  I have an appointment at Mayo on the 15th of October, but I need to move it because I have a meeting for work that I can't miss, so no idea when I'm going to be able to get there.

So that's the physical side of things....the emotional side is worse.  I feel like I've given up a little...or I'm just (say it with me now) so tired of being so tired.  My new job (that I love) keeps me going 100% all of the time.  And when I'm not going 100%, I'm sitting in a car..a lot..watching the fluid pool around my ankles.  The other day, when I was flying home from Detroit, I almost missed my connection because I had pain in my shins that was SO bad I actually nearly stopped and started crying.  I physically couldn't walk any fast...forget running.  And it made me FEEL sick....it made me feel incapable of doing what I want, and it made me so fucking mad that I can't describe it.  I can't think.  I can't remember.  I almost showed up to a party a week early tonight...thankfully my neighbor gave me that look like "are you crazy"...maybe I am...maybe she's right and I've completely lost my marbles.

The physical limitations are growing, and I can't seem to stop them.  I can't rest enough.  I can't sleep enough.  I can't do anything.  I try to eat something good (or eat anything, for that matter) and mid-meal I'm so nauseous that I can't stomach another bite, yet I continue to gain weight.  My shoes aren't fitting again, and neither are my clothes.  I know it sounds as though I'm describing physical things again, and I guess I am, but imagine what it does to a person emotionally.  To know that you're being completely betrayed by your body that should, by all odds, be completely healthy.  I just had shitty odds.

I put my pilates machine upstairs so that I can at least start to use it to become more active again, as all of this "resting" is making me feel like Jabba the Hut.  I can at least start trying to become a bit more flexible...it's something at least.  But we need to move some stuff out of the way, and I can't move it myself.

And right now, at this exact moment, Izzy is screaming, "I WANT TO SNUGGLE WITH MY PAPPA".  You think that'd be cute, wouldn't you?  Now imagine that in a hateful, nasly voice, over and over and over again.  Not so cute now, is it?  I'm so tuned out right now to her...I feel awful.  I just don't have that mental kind of fight in me right now.  I'm fighting all sorts of my own demons, and believe me, I know how selfish that seems.  But how can I take care of her when I can't even take care of myself.  I'm trying to put on my air mask before hers, yet I feel like a complete and utter parenting failure.

I know I'm my own worst critic.  No one is expecting all of these things from me, except for my husband, which hurts because even after all of this time dealing with it, he just doesn't get it.  I feel like the way he looks at me is one of distaste.  Like he's frustrated with my "laziness"...

Fuck, I don't know what to do, and there isn't a single person in this world that can tell me.  Not that that's stopping me from asking.  A guy I work with has a brother that's a nephrologist here in town, and he did a wonderful thing by setting up a call with him.  The doctor was so very kind, and honest.  I told him that I'm interested in learning more about a medical nephrectomy, which is essentially killing off your kidneys by medicine.  I know, I know...sounds drastic doesn't it?  But that's how bad I feel.  I still can't understand why I'm trying to save things that make me feel so awful, and that's because the grass is always greener on the other side, isn't it?  That doctor gave me some things to think about, as well as some of my other kidney friends.  I don't know which way to go, or what to do, but it's time to explore all of my options, no matter how drastic they are.

Would I feel better on dialysis?  Maybe.  Would I be able to handle it, emotionally, if something went wrong and ultimately I was responsible.  There's something to be said for letting nature run its course, but I honestly can't imagine surviving kidney failure.  I don't want to wait until I'm not even mobile before I do something, but I also want to consider how my choices affect my life and that of my family.  What kind of a commitment is it?  How much support will  I need?  How will I take care of Izzy?

Soooo many things running through my head..  Luckily, I've got the NKF walk coming up where I hope to meet more people and talk about them.  The walk is October 13, so you still have plenty of time to donate.

Here's a link to my page:  http://donate.kidney.org/goto/jenntrunk

There's also the Nephcure Lunch and Learn in the Twin Cities on November 10th.  You can go here to register if you're interested as a patient, or just someone who wants to know more.  A light lunch is provided, and the event will go until about noon.

I've got lots of things to think about, and I actually could use some useful advice, if anyone has any.  Maybe a personal story about their experience, or any sites/links that you could send me to for info...anything would be GREATLY appreciated!  Thanks for reading :)

All-Star : FSGS Sucks

I got an email from the NKF the other day, telling me that I'm $300 away from being an NKF Kidney Walk All-Star.  Now this may not be a big deal to other's, but it's HUGE for me.  I cannot change the course of my future all that much.  The ONLY thing I can do is to raise awareness and money.

I raise awareness by posting on this blog, by posting on Facebook, and by the FSGS and Pregnancy group on Facebook

I raise money by walking.  And I need you're help to meet the goal I've set for myself.  The last few years I've raised well over $2000, but this year I haven't even hit $1,000 yet.  I knew it would be harder this year, as I didn't have Lilly people to harass :), but I didn't think that $1,000 was impossible to achieve.  Now I'm starting to get worried.

Here's the link to my donation site.  Will you please take a moment to donate if you haven't?  Or if you have, can you share the link with friends?  I'd really appreciate it.  Thanks!

http://donate.kidney.org/goto/jenntrunk

2012 NKF Kidney Walk Update : FSGS Sucks

OMG.  I just looked at my page and say that I'm over 80% of my goal.  I'm celebrating the awesomeness of my friends, family and supporters, but I'm also greedy when it comes to raising money for my personal interests, so I'm not done yet.

I've got a little more than a month to go, and I want to shatter my goal.  Won't you please help me do this?  I had to turn down volunteering for the event due to the unpredictability of how I feel lately, which makes me feel even worse.  So the least I can do is raise more money.  I gotta tell you, they take this SERIOUSLY up here.  Every day I get new emails about some fund-raising that some team is doing.  Since I'm new to this area, it's not as easy since few people know me, but I have hope for next year.

I need to make a flyer to post up at my work and Joacim's work for people to make cash donations (always acceptable because I know there are some people who aren't comfortable doing things online.  Hopefully I get that done tomorrow, but it's a busy work day so it may be delayed a bit.

For those of you (Caroline and Daniel :) that still haven't joined my team, please sign up!  You don't have to be here to participate, but you can help me raise money.  I've said before, and I'll say it again, I miss my Lilly folks.  They've probably forgotten about me, but I haven't forgotten about them, nor have I forgotten about their generosity.  I mean, it's truly humbling to have people step forward and donate to help a cause because it's something that affects someone they know.  I do it to...I donate to other organizations because I know what it's like for them.  Asking for money is uncomfortable at best...I'd rather volunteer.  But volunteering doesn't fund research...it doesn't fund educational workshops, and it sure doesn't fund legislative assistance, and financial donations do.

Here's a video about folks waiting for a kidney transplant.

<iframe width="640" height="480" src="http://www.youtube.com/embed/k607dCg9HNM" frameborder="0" allowfullscreen></iframe>  

There is one statistic that I want you to remember.  As of September 3, 2012, there are 93,142 people waiting for a kidney transplant.  I'll be on that list someday, maybe sooner, maybe later, but someday it's my fate.  The NKF does a fantastic job of bringing awareness to the plight of kidney disease, as well as providing education for CKD patients, funding research opportunities for physicians, etc.  There are SO many things that they do, and none of them would be possible without donations.  So please, take a moment and click on this link which will take you directly to my donation page.

My page:   http://donate.kidney.org/goto/jenntrunk

Lots of love from me!!!!!

NKF Kidney Walk

Since there wasn't a Nephcure chapter when I moved to Minneapolis, I signed up for the local NKF (National Kidney Foundation) walk.  The NKF has a very active chapter here, and I wanted to make sure that I stay involved.  Nephcure is finally starting a chapter here (more details to come, as I'm involved in that too ;).

I wrote back in June about my meeting with Kristin and Breanne, but I kept forgetting to sign up for the walk.  Well, Breanne contacted me again with a gentle reminder, and here I am now, soliciting you to help me reach my fundraising goal.  It's only $1000, which is a much smaller goal than I had with the Nephcure walk in Indianapolis, but I also had lots of friends at Eli Lilly that were very generous in their donations.  Now that I'm not there bugging people, my fundraising efforts have lagged behind.  So I'm asking you...friends, family and anonymous readers, to help.

Here is a link to my team page:  Team FSGS Sucks.

For anyone that's local that wants to sign up and walk with me, PLEASE do so!  The walk is Saturday, October 13, so mark your calendars!!!  Thanks so much for all of your kind words and support ;)

So here's what I'm dealing with today : FSGS Sucks

Well, folks.....LOTS of things have been happening this week.  I can't tell you yet, and it's totally unrelated to my kidneys, but it's potentially great news.

On the health front, things don't seem to be going too well.  At my last Mayo appointment, Dr. Fervenza noted that my Cpk value is quite high at 240 (normal range is 38-176), which puts me at a high risk for rhabdomyolysis.  Here's an explanation of what rhabdomyolysis is.  Essentially, more muscle wasting.  And I'm worried that it may be happening.  The last week, I've noticed that my muscles are MUCH weaker than normal.  It's difficult right now to hold my arms up and type this...THAT'S how weak they are.  And my left calf muscle feels as though I pulled it (and I haven't been physically active enough lately to pull ANYTHING).  We cut my Lipitor in half, as statins can make it worse, and my doc advised me to stop taking it immediately if I noticed muscle pain.  I don't notice pain as much as weakness, but when I put the weakness with the calf muscle pain, and started researching, I'm thinking I better call the doctor and send him a message via their system.  And I'm sooo freaking shaky...not just my hands anymore, but other muscles are twitching all the time.   And my balance is completely wonky.  I haven't fallen over yet, but there've been several times recently when I thought I would.  I took a video of my hand shaking, but my video host is currently experiencing delays, so I'll have to post it later.

It's so damn frustrating.  I want to be active.  I want to be healthy.  I want to be normal.

Okay, now for some good news.  I got another mentee with the NKF, and she's AWESOME!  Soooo much like me personally, and in the very early stages of kidney disease.  I think we talked for 2 hours the first night!  Anyway, I LOVE to help people when it comes to CKD, because there's so much info out there (and not all of it good) so I'm thrilled to have the chance to help.  My other mentee is doing well too...she's stable and she's started volunteering, so that's INCREDIBLE!

I also got in touch with the local NKF, which is quite active in the area and on Facebook, and hope to meet with them next week to start volunteering.  Plus, the wonderful ladies in our Facebook group have started working on a way to help others like us that don't have the emotional/physical support that's needed (sadly, it's more than you'd realize), so I'm going to see about working with NephCure to see what we can come up with.

AND I've started seeing a therapist.  The first appointment was this morning, and it was great.  I can feel the "snippy-ness" taking over sometimes, and I just think that, generally, it's good to have someone to talk to that's COMPLETELY out of the picture...to provide some perspective and some coping mechanisms.  I like that one of the things she specializes in is chronic illness, so she already "gets" it.  And let's face it...things are probably going to get worse before they get better, so it's important for me to be prepared to face whatever's headed my way, and I'm confident that she can help.  We really clicked, and that's paramount.