Clinical Trial - Infusion #3

No photos from today...probably because I was so freaking tired.  I was probably worse than a drunk driver this morning on the road, and it's not as though I didn't sleep last night.  It just seems that, in the last 2 months, there is no amount of sleep that helps anymore.  I'm ALWAYS tired, and it's now gotten to the point where I can fall asleep almost anywhere within a couple of minutes.  Anyone that really knows me has heard me say that I'm not a "napper", but I guess I am now.

Once I got to my room for the infusion, I laid in the hospital bed, spoke to my doctor quickly and he examined me.  We changed up my meds a bit to try to remedy some of my suffering...cut back on one of my blood pressure meds, as my bp was 95/63.  He also told me to take my diuretics at 2:00pm now because I mentioned that I've had to get up a couple of times a night to pee, and that's a pretty recent development.  Apparently the diuretics last for about 6 hours, so changing it to 2pm will hopefully get all the water out that's possible before I go to bed.  After they put the IV in, I fell asleep.  Apparently, it was such a deep sleep that I didn't even know that my doctor came back in to check on me before he headed to the airport.  Yikes!  Not only am I a napper, but I'm a pretty sound napper!

My swelling is awful right now, and I DO have pictures of that.  This is actually quite embarassing to show, but I think everyone needs to see it....to understand why I complain about it all the time.

I couldn't even bend my knees when I went to bed last night, which might explain why I didn't sleep all that well as I'm a fetal sleeper.  This used to go away with a night of putting my feet up, but that's not working right now.  I wake up like this and go to bed like this, and all-day long I'm horribly uncomfortable, and sometimes in a decent amount of pain.

This has always gone away in the past, and I'm hanging onto that teeny tiny thread of hope again, because this is REALLY getting to me.  I'm depressed, no doubt about it.

I also had an MRI today to check out what's going on with my hips.  While the pain has gotten better, it's not gone yet.  I've had an MRI in the past, but it was an open-sided one.  I'm EXTREMELY claustrophobic, so this part of the day freaked me out.  When I laid up on the table, I immediately put in the earplugs they give you and shut my eyes before I actually went inside the tube.  I kept them closed the entire time...I was afraid that I'd completely freak out if I opened them, and they'd have to repeat the image.  I don't remember it being so ridiculously loud!  I just laid there, my mind wandering (as it does most of the time).

I had to fill out a survey right before my infusion...a normal part of a clinical trial.  Geesh, I think acknowledging how crappy I feel made me feel crappier.  I feel very remote....like I'm watching my life happen but not living it right now.  I can't figure out what to do to make it any better.  The arrival of spring (FINALLY!) has helped, but only minimally.

I found out last week that 4 people I know are expecting babies.  While I'm absolutely THRILLED for these ladies (they're truly wonderful) it makes me sad, as it's just another reminder of what this damn disease has robbed me of.

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.