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!!!

Clinical Trial - Infusion #2 - FSGS Sucks

I had my 2nd infusion last Thursday.  I had to wait almost 2 hours for the drug to be prepared prior to the infusion, but no other hiccups :)

Isn't this crazy looking?  It's a little safety that goes over the IV needle once it's pulled out.  So.  Cool.

more blood

This is my less than interesting view.

I had to have blood drawn on the other arm after the infusion was over.

I'm not experiencing any side effects, that I know of. I thought I was getting a lot of bloody noses after the first infusion, but now I'm thinking that might be more allergy related than clinical trial related.  I AM pretty swollen, but that's nothing new.  I'm also very very sleepy, which is getting frustrating.  No matter what time I go to bed, I'm exhausted when I wake up.  I drove to Eau Claire yesterday and had to stop at a grocery store on my way home to get a snack to help keep me awake.  It was only a 2 1/2 hour drive.  I'm heading to North Dakota next week...guess I better bring LOTS of snacks to help keep me awake ;)

Left out again

I'm in Cleveland at a training event for work.  And I'm in sales.  I don't know if you know this, but sales people like to socialize after working all day.  And it's a great time to get to know people on a more personal level, and bounce ideas off of people in a more light setting.

But I'm missing all of it right now.  Instead, I'm stuck in my hotel room with my feet propped up because my ankles grew into tree trunks today.

And I knew this was going to happen.  It does every time I sit for extended periods of time, which is exactly what I'm doing this week.  We're working in groups, and the training is intense.  There's little time for getting up and moving around, except to run down to the bathroom, but that's about it.  My legs didn't get elevated at all today, so they were screaming at me by the time we got back to the hotel, 13 hours after we left.

I would LOVE to go down and socialize.  Have a glass of wine and talk shop.  But I can't do it.  I only have so many "spoons" to give, and I'm tapped out today.  I need to rest, get a good night's sleep, because more folks are coming in tomorrow night, and I feel like I NEED to be at that one, so I'm going to have to suck it up for that.  That's one of the gazillion crappy things about being chronically ill.  Nothing is spontaneous.  I always have to think ahead...what do I have coming up?  How much can my body take?  I can suck it up occasionally, but my body will eventually give out if I do it to much, and then I'm totally useless, so I have to pace myself.  Sadly, I'd rather have to worry about pacing myself drinking than pacing myself to have enough energy to make it through training.  This just blows.

According to UrbanSpoon.com, I'm a "spoonie":
Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion... sometimes having an abundance, other times coming up short.

Now there have been people that criticized this, but I don't care about those people, because this illustrates exactly how I feel right now, at this moment, and a lot of other times as well.  I always feel that I have to weigh the benefits of every activity, wondering if I'll have enough energy for it all, and if not, things have to start coming off the list.  It's very frustrating to not be able to do everything you want because of things like swollen ankles.

And I've noticed more recently that my ability to comprehend things has certainly been affected.  I used to feel that I was smart as a whip..easily able to pick up new concepts, but not anymore.  I can hear something over and over again, and it still doesn't sink in.  And don't even get me started on names.  I'm EMBARASSED about how bad I am with names.  Faces?  I'm totally good though, so at least I can still recognize people.  Guess I gotta be thankful for that today, right?

On to the University of Minnesota...

I called Dr. Lee on Monday and left a message with his office regarding the "No Referral" status of Hennepin County Medical Center in regards to my insurance, and within 5 minutes he called me back.  Within a day he had spoken with the director over there, got me hooked up with the transplant coordinator, and started the ball rolling over there.  I tell you...he's fantastic and efficient!

So I spoke with the coordinator at U of M, and she explained all the things that would happen next.  I received a packet of info from them yesterday that I perused last night, but hope to spend more time this weekend digging in.

I realized that I MUST get this stuff organized at the beginning.  I've already lost one set of notes that had all of the Cigna nurse case manager info on it, so I can't let that happen again.  Not exactly sure what method I'll use, but I'll figure something out.

The last 3 days I've spent on my feet at a convention center for a trade show, which means my legs and back are horribly swollen.  And I'm a level of tired that I can't quite articulate, but I wanted to get this post out so I can go to bed.  I thought I'd do all of this research tonight, but I realized that I'm too tired to make sense of anything.  This is the first week in a few where I've had to be up so early every day.  It's taken a lot out of me...I'm not getting the sleep I need nor the exercise.  And I'm traveling next week to Cleveland, where I'll spend another 4-5 days in a classroom, swelling.  Awesome.

I wanted to go for a run tonight when I got home because my couch-to-5K program is lacking right now, but we had a freaking snowstorm in April overnight, and so that's been officially ruled out until the snow is gone again.  I want to run, but no way in HELL am I doing it out in this weather!  Maybe Izzy will want to go to the gym with me on Saturday :)  I guess I better check to see if my hotel has a treadmill or something, although I doubt that my schedule will permit much time for me to do anything next week.

I'm thinking of my friend Kinga tonight.  She recently had a baby, and then had to go on (what I would consider) emergency dialysis.  She has a catheter that is causing her quite a bit of pain, and she's frustrated trying to be a new mom and a person dealing with FSGS.  I'm wishing her all of the best, as she's been through a lot.  Please help send positive vibes her way....

I have a nurse case manager!

I guess I need to get my ducks in a row.  Now granted, I'm actually pretty organized when it comes to my kidneys (not so much in other areas, but I digress).

So, Hennepin County Medical Center is in a "no referral status" with Cigna, which means that if I were to choose them for a transplant, then my benefits would only be covered at 90%.  With choosing a Lifesource facility, which is Cigna's way of saying "preferred", they're covered at 100%, plus travel benefits if a center is 60+ miles from my home.  The 2 Lifesource facilities here in Minnesota are Mayo and University of Minnesota, so the next step for me is to contact my nephrologist here in town and see what he thinks of U of M.

Once a facility is selected and Cigna contacts my nephrologist, I need to be evaluated and approved for a transplant via the insurance company.  There'll be a battery of tests (most of which I've already done) including chest x-rays, EKG, ECG, dentist, and visits with a social worker.  I'll also provide my previous results for pap, colonoscopy and mammogram so that I don't have to do THOSE again.  Once all that stuff is done, AND if they approve me, THEN Joacim can get typed for donation.  It's a bit frustrating that we go through all of this before we even know if he's able to donate, but then on the flip side, it wouldn't make sense for insurance to pay for typing if I wasn't able to get a transplant.  So I guess it's a wash.

This will be interesting...to see how it all plays out.  Who knows what will happen....if this will even go through.  I'll just keep my fingers crossed that we make it to the point of typing Joacim, because as I said earlier...if he's not a match, then it just doesn't matter.

Other than that, things are good.  The only side effect that I think I'm experiencing from the trial is an occasional bloody nose, but since I live in Minnesota, that could be weather-related.  I've communicated this info to the coordinator for documentation, but it's not sever enough to warrant worry, just annoyance.

It looks like we're starting up a chapter of Nephcure here in Minnesota now!  And we may hold our first walk at the Mall of America.  There is an amazing woman who I consider to be a friend that is affiliated with the mall, and sadly her daughter has FSGS.  She's going to be an amazing asset to the organization!!!  We also have a new regional coordinator who is excited and energized, and planning on making a trip up here.  There are apparently quite a few FSGS patients in Minnesota, so we need to do a better job of getting the word out!

Nerves...

Mine are frazzled. I'm lying in bed at 8:00 to TRY to relax, but I'm finding it nearly impossible. Murphy has a squeaking toy, Izzy wants to "snuggle"...I just need some peace and quiet. I've had a headache the last couple of days and some nausea, so a good night of solid sleep is just what this chick needs.

Clinical Trial

This past Friday I started my 2nd clinical trial.  You may remember that I am participating in the FONT II trial.  I had to stop the drug portion early due to a cervical cancer scare (thankfully everything is OK), but I'm still being followed on that one.  This newest study is another drug trial, but this time I have no idea if I've gotten the drug as it's a randomized study.  It's a 3-armed study (placebo, half dose and full dose), and it lasts 252 days.  I'll have 4 IV-infusions and then follow-up labs/surveys for the duration.  The infusions are 28 days apart, so my next one is scheduled for the end of April.

My nurse.  We're kindred spirits :)

The tools required for the job

Warming up the veins

The IV

The vampire's request

the bag

the setu[

and a selfie

So far, I don't feel any different.  My urine is still ridiculously foamy, and I'm swollen.  Hopefully I got the drug, and hopefully it works to reduce my protein.  Fingers crossed :)

Freaky eyes

Thursday sucked.  And here's why:

I had cried a lot on Wednesday due to the fact that my kitty cat has gone missing (and no, he's not home yet ).  And when I cry, my eyes freak out and swell up.

 

This is not only freaky to look at, but it's nearly impossible to really see things clearly.  There's so much extra weight in my eyelids from the water that it makes my eyes feel bizarro, and everything's pretty blurry for awhile.  It take a few hours for gravity to take effect and allow me to venture out in public.  What's weird about this when it happens is that my right eyelid actually raises due to the amount of water that's trapped in there.

I had a lot of things planned for that day..I was going to do newborn photos in the morning, but had to cancel because I couldn't focus my eyes, or really drive, for that matter.  Thankfully we were able to reschedule.  It probably all worked out for the best anyway, as I stayed home and did my 24-hr urine for my clinical trial that started at Mayo the next day.

Tired. Tired. But not-so-swollen.

Annnnnnddd...my weight is swinging the other day.  It started on Monday, and by today, I'm down about 10 pounds for the week.  I tried to start keeping track of everything (weight, food, mood, phase of the moon ;) to see if I could draw any conclusions, but honestly, if I'm feeling better, I forget.  Maybe SOMEDAY I'll come up with a sustainable system.  But I won't be holding my breath.

I had another iron infusion on Monday.  This time, I was able to do it at a local hospital, which worked out  well.  It was a craptastic winter day outside (the best word would be blustery) so a few hours in a warm room with a blankie and some iron is just what this girl ordered.

It looks like coffee, doesn't it?  Too bad it's not :)  I COMPLETELY fell asleep during this infusion.  The last one I had at Mayo was a push, but this was a drip that took around 2 hours, plus another half hour for observation.  No biggie...glad it's done, but I don't feel any different..not worse, but not better either.

I've got the clinical trial infusion that begins this Friday, so it's ANOTHER trip back to Mayo.  Keep your fingers crossed that I get the drug :)

Oh, and more good news.  My "friend" Matt from www.onekidneymatters.com is GETTING A KIDNEY!!!!  CONGRATULATIONS Matt!!!

Tired. Tired. Swollen.......

I'm still swollen.

Actually, I'm a bit worse than I was earlier this week, and I didn't think that was possible.

I wore compression stockings all day, and it didn't make a bit of difference.  My eyes are swollen, my face is swollen, my belly is severely distended...there's swelling up to my chest and through my lower back.  My skin is irritated and sensitive, and I have heartburn that a dragon would probably be jealous of.

For me, this drastic weight gain is like going from normal to being 9 months pregnant in 10 days.  And the associated pain in my back and hips from the added weight is unbearable, let alone the stiffness in my knees and ankles.  Putting on a bra feels like a medieval torture device due to the constriction it puts on my breathing.

In essence, I'm miserable.  Horribly, horribly miserable.  My husband is out having drinks with a friend, which means I'm at home with Izzy.  Normally, no biggie, but it's taking every ounce of strength I have to be coherent at this point.  I wish he'd come home.  I wish he'd get up with her tomorrow morning, but I doubt that'll happen.  I feel like I need to spend the whole day in bed, but I look around at the disaster that is my house, and I know that it'll be impossible for me to do it.

I bought this awesome light tent and some lights the other day to start playing around with my macro lens, and I haven't even gotten them out of the car.  Anyone who knows me knows this is unusual...I LOVE new toys and gadgets, especially those photography related.  I just don't have it in me.

I met with another doctor on Thursday, and the experience was amazing.  I hope to write more later, but needless to say that in that short conversation, I already feel like I gained something.  I'm signing up for a dialysis education class with Joacim, as well as meeting with a transplant surgeon to discuss the possibility of a surgical nephrectomy.  Yeah, I know...HUGE step.  This is not to say that I'm going to do anything...I just need to educate myself at this point.  But this is the first step in getting Joacim and I typed to see if he's a match for a live donation.  If he's not, then all of these conversations I'm having with this doctor will stop, and I'll wait for the inevitable failure of my kidneys.  But if there's even the remotest possibility that I can ditch these beans and get a new one, then the chance to live a normal life might be too good to pass up.  There's A LOT to research..a lot of questions to ask, but I'm thrilled that there's someone out there who's willing to entertain my ideas.

Thanks for all of your kind words and thoughts.  I'm in a pretty low place right now, physically, and it's affecting my mental health as well.  Not being able to move around, or fit into my pants, or even bend at my waist at this point is wearing very, very thin.  I'm tired of winter...tired of snow...tired of wearing boots and my winter coat...tired of salt on my car...tired of this messy house..tired of the clutter...tired tired tired.

Okay, thanks for visiting my little black cloud of doom today.  It'll get better, I know...but allow me the wallow, won't you?

Clinical trial pre-screen

I had my pre-screen appointment for the newest clinical trial today at Mayo.  It was an early morning...got up around 5:00am in order to make it there by 8am, which was my first appointment at the Clinical Research Center.  I had to drop off a couple of urine samples and get some blood drawn, and then I was off to get my ECG (electrocardiogram).

waiting for my ECG

right before the ECG...not a great photo, but she wanted me to put my arms by my side

I think you can guess what this was

The ECG was incredibly quick...I'm thinking it was only about a 60 second reading but I passed.  After that, I went over to the Nephrology department to meet with the clinical trial coordinator and Dr. Fervenza.  She asked a bunch of questions for the study, and he did a physical exam.  He was wonderful this time, making sure to allow plenty of time for my questions, and I could tell he was definitely making the effort, which was such a great feeling.  Anyway, my blood draw had to be sent out due to the study, so we didn't have my hemoglobin results, so he ordered a blood draw in order to get that taken care of.  It came back at a 10 this time, which means I'm unofficially cleared for the study, but Dr. Fervenza wants me to get more iron, so I'll have to get that taken care of sometime this week.

I was EXHAUSTED by this point.  I made the drive home, stopping in Eden Prarie to run an errand.  Once I got home, I went straight to my pillow and woke up 3 hours later.  Izzy was kind enough to take a photo of me once they got home.

I'm swelling A LOT right now.  I've gained 10 pounds since Sunday morning.  During the physical exam, Dr. Fervenza noted that my swelling has gone up through my lower back, which (physically) feels awful.  This wildly swinging weight gain/loss is getting old and painful.  It feels terrible to gain so much weight so fast, and it takes a few days to adjust to it.  In the meantime, I feel like a penguin waddling since my thighs are swollen and rubbing together.  I have the exact opposite problem I had 2 weeks ago when I couldn't find pants to fit because I had LOST so much weight.

I have 2 meetings tomorrow and at least 5 hours in the car.  When I feel like this, I can barely manage one appointment a day.  It completely wipes me out, and it's about all I can manage right now, until I re-adjust.  This makes it hard, work-wise, but makes me grateful for the flexibility that my schedule allows.