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.

Another day, another infusion...

Today was infusion #4, and this one was smooth as butta (that's butter, but said like "but-ah").  Anyway, the appointment was completely uneventful and quick...I didn't even have a chance to get my iPad powered up as I was answering work emails and making calls during the infusion.   Sometimes I laugh at all of the juggling that I have to do....sometimes :)   But I'm still smiling...

I was telling my friend, Emily, that I think a key to me feeling so good right now is the discovery of the hypothyroidism.  I mean, LOOK AT MY FEET/ANKLES/LEGS!!!  (Okay, my leg looks a LITTLE bigger than normal, but that's because of the crappy angle of the photo and the fact that I'm resting my calf on the sofa)

I go back in another 2 weeks for labs to see if my thyroid is at the right level, and back to Mayo again at the end of February for infusion #5.

Abatacept update and another diagnosis code!

Lately, I just haven't felt like writing.  Hell, I haven't felt like doing much of anything.  I had a BIG case of that utter exhaustion that pops up every now and then.  Luckily, I got a new PCP that identified the problem....hypothyroidism!  I went in for a physical a few weeks before Christmas and she decided to check my levels.  I'm actually not even sure what prompted her to do it, but I'm glad she did!  Let's look at the symptoms of hypothyroidism, shall we?  According to Mayo Clinic's website, hypothyroidism signs and symptoms may include:

• Fatigue
• Increased sensitivity to cold
• Constipation
• Dry skin
• Unexplained weight gain
• Puffy face
• Hoarseness
• Muscle weakness
• Elevated blood cholesterol level
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Heavier than normal or irregular menstrual periods
• Thinning hair
• Slowed heart rate
• Depression
• Impaired memory

Well, that about sums up every thing I've been feeling.  Hell, if I hadn't already had 2 kidney biopsies confirming my FSGS diagnosis, I'd say it was ALL hypothyroidism.  Sadly, I'm not that lucky, but I AM lucky enough to finally be on some medicine, and I think it's really working.  I mean, it's only 5 days in, but I definitely have more energy, and I can feel the fog lifting from my brain..I'm quicker, wittier (okay, that may be debatable, but I think I'm pretty funny via text messages) and just generally all around happier.  I'll go back in 6 weeks to get my levels checked again, so keep your fingers crossed for me, okay?

Someone anonymous posted a comment on this blog a couple of days ago asking me to update everyone on the abatacept infusions, so that's really what prompted this post.  Whoever you are, thank you for getting me in gear writing again!

Okay, so I've had a total of 3 infusions so far.  I did these on Day 1, Day 15 and Day 30.  From now on, I'll be going to Mayo once per month to do them, assuming the drug works/continues working.

Sometimes I don't feel so well after the infusions.  I do notice some nausea, most noticeably in the mornings.  I have some zofran left over from a hospital stay and I take that, and that's a HUGE help.

Sometimes my face gets really PUFFY.  This picture was taken the same day as my last post was written, and if you read that one, you'll know that it was a REALLY bad day.

I honestly don't know if the drug is working.  My pee is still ridiculously foamy.  That being said, even if I had a 50% reduction in my protein loss, I still lose a shitload of protein, so I probably wouldn't notice a difference anyway.  I'm not going to lose hope, and I'm not going to spend a single second wondering if it's working.  If it does, SUPER!  If it doesn't, then I'm no worse off today than I was before I started taking it, right?

There are a few weird things that are going on, but I don't attribute these to the abatacept at all.  This is just a result of the awful things that FSGS does to my body.  Case in point:

This is my fingernail.  Gross, right?  Yeah, I think so too, and now some of them GROW OUT THIS WAY.  I've got 4 nails right now that are growing out with what appears to be bruises...they look like the kind of bruise you get when you shut your finger in a door, only I haven't done that (I mean, I'd remember THAT!).  I'm blaming this one on the nutritional deficiency that is occurring due to the protein loss.

I also get weird rashes that are unexplainable, incredibly itchy, and totally gone the next day:

This month, I think I'm seeing a total of 4 doctors, if you include my dentist (which I do).  I FINALLY was able to get an appointment scheduled with an orthopedic surgeon to check out my left hip that I had MRI'd at Mayo this past summer.  My hip has been feeling pretty good, but in preparation for the appointment, I started on the elliptical machine again, hoping I can aggravate it enough.  I know this seems counterintuitive, but I've been to so many doctors for things that are bad when I feel good that they don't pay the same level of attention, so I want this thing to HURT so he understands how bad it can be, and how much it affects me.  Initially the doctor looked at the radiology report and told the nurse that nothing needed to be done.  Thankfully, I'm nothing if not persistent, and told them that someone was going to see me because it hurts like hell and I wanted to start running again.  Wish granted :)

Okay, I really hope that captures the last month or so.  My wrist hurts from typing, so I'm outta here :)

Eeeeeek.....not feeling so hot

This day has sucked from the moment I opened my eyes.
Strike 1: Izzy slept with us last night and did crocodile rolls ALL night.
Strike 2: I woke up at 5:30am so I could actually be on time for my infusion. had my 2nd infusion today at Mayo.
Strike 3: I didn't make it on time because traffic issues caused the normally 2-hour trip to take 3 hrs 45 minutes.
Strike 4: the nurse had to stick me twice because my veins weren't cooperating
Strike 5: rolled down the window of my Ford to pay the parking garage fee, and then the window wouldn't go back up again.
Strike 6: it was -2 degrees (I did end up finding a service station where they were able to get the window up)
Strike 7: I drove 2 hours back to Hudson, WI, met my coworker, and then spent another 5 hours in the car to drive to Milwaukee
Strike 8: I reserved 2 rooms. They only had 1 under my name (luckily, this was also fixed)
Strike 9: I ordered a Caesar salad from room service, and they put 2 whole anchovies on it. It's now a fishy nightmare, so it looks like I won't be eating dinner tonight
Strike 10: I'm SO terribly nauseous and shaky. All I can do is lie in bed and chan scan. However, I need to work. I won't, but the guilt is there.

The only good things about today are that I made it everywhere safely, and I brought my heating pad and sequential compression booties. Score 3 for me.

Gawk, I hope I feel ok tomorrow.

Last clinical trial appointment and a new drug....

It kind of all started with this article that was posted by a friend of mine in my facebook group:

http://www.sciencedaily.com/releases/2013/11/131108153524.htm

So, you look at those numbers and you start to weight the odds.  5 people really isn't many, but you have to admit that the results are intriguing.  I had made a note to discuss with Dr. F when I had my next appointment, but he actually called me the week after this was posted and asked me if I wanted to try it.

This made me happy because that means he's truly current with what's going on out there (not that I really had any doubts about this one, but still nice to have some confirmation) and that he's truly looking out for me when things like this come up!  I researched what I could find about the drug, and the side-effect profile is really low, so I figured "why not"?

My first infusion was last the Tuesday before Thanksgiving.  Everything went really well...completely uneventful.

As part of this visit, I had my last official clinical trial appointment for the study I've been participating in.  I was also able to get some labs done...here are the results:

Potassium:  3.4mmol/L (this would explain the AWFUL leg cramps I've been having)
Creatinine:  1.6mg/dL
eGFR:  36
Albumin:  1.5g/dL (yep, still swollen)
Protein:  12000mg (predicted, as it wasn't a 24-hr collection)

It's good to have some baseline numbers to see if this drug will work.  The plan is to do an infusion on day 1, day 15, day 30, and then once a month after that.  I have another infusion tomorrow morning.

Since this is an immunosuppressive drug, I need to be a bit more careful again.  It's been awhile since I've been on one, and I forgot how they can make me feel.  Drained is a pretty good word.  And I've instantly gotten sick....no idea what this will turn into but it feels pretty darn crappy right now.  I'm really worried as I never had time (or kept forgetting) to get a flu shot, so I'm terrified.

What sucks more is that I KNOW I need to rest, yet I can't.  I have to drive to Mayo tomorrow for  my infusion, then drive back to work, pick up a co-worker and drive to Milwaukee for 2 days of business plan planning and presentations.  I'm not up for it.  I just want to lie down.  And these next few days will do nothing in the way of helping me get better.  What's worse is that I truly don't believe my employer understands the precariousness of my health, nor do I think they care all that much.

I miss working for my former employer.  They were with me the entire time through this diagnosis, and they completely understood and supported me.  You don't realize how truly wonderful and stabilizing that is until you no longer have it.

Everything seems like one big chore right now, and I just don't have the energy to get it all done.....wish me luck over the next few days that I don't get sicker.