Transplant update....good news actually!!!

It's funny....I woke up today trying to find excuses to get out of going to the U of M this afternoon for a consultation with ANOTHER transplant nephrologist.

Let me sidetrack a little bit by saying that I wake up EVERY day looking for excuses to get out of whatever I have planned.  And it's not really because I don't want to do that particular activity....it's more because I don't want to do anything.  At all.  Except for lie down and watch TV.  Oh wait, I already blogged about that problem....well, at least I'm consistent :)  In all seriousness, I think this is part of the kidney disease and part of the anti-depressants.  I mean, I'm extraordinarily tired, and everything requires planning and effort now, so it kinda sucks the fun out of things sometimes.  But also, there are no true joys right now, emotionally.  No butterflies...no living in the moment.  I just feel emotionally dead.  That being said, I think I'm going to try to wean off of these damn "happy" pills.  I figure the best way to do this is to start seeing a therapist, but I'm not exactly sure how I'll be able to find time to do that.  I mean, it would be borderline irresponsible to wreak my emotional havoc on my family by going "cold turkey" off of these things...that's just stupid and at least I know that.  But I WOULD like to get off of them...

Anyway, back to my appointment.  All I can say is that I'm glad I didn't find an excuse.  I think I didn't want to go, initially, because I thought it was just going to be another "no" appointment, but that wasn't the case, happily!

These are the doctor's notes from our meeting.  I'm going to have a hard time conveying how important this particular meeting was, but in a nutshell, it's the first time that a doctor said everything I've been thinking, and said it before I did.  I mean, this doctor got it...got everything I've been thinking...he understands my drivers and it was just so truly amazing.  At the end of the day, even if the final answer is still a no, I consider this my biggest win.  Just knowing that there is a doctor out there like this restore my faith in the medical field and my hope that this will all work out eventually.

Anyway, I'll break down the notes.

1.  Chance of FSGS -> 100% (meaning that I have it, and it's apparently not going away considering all of the drugs I've tried.
     Chance of recurrence -> 5% - 30/50% (if I have a genetic form of FSGS, which I don't know at this time), then the chance of recurrence after transplant is around 5%.  If I don't have the genetic form, the chance is between 30-50, but that's still a 60% chance that it WON'T recur...straight from the doctor's mouth ;)
2.  Have a baby (even though I'm approaching 39 w/ CKD, the dream will never die)
3.  Consequences of Nephrotic Syndrome:
     *  Edema (discomfort, breakdown of muscles)
     *  Coumidin (inherent risks with the drug)
     *  Lipids (what are the long-term effects of high lipids...cardiovascular disease??)
     *  Bone disease (a bone scan would likely indicate issues with my bone density...leeching vit D)
     *  Infection (my risk for infection is high...especially flu/pneumonia)
4.  NSAIDS (Dr. F wants me to try another drug, which is an NSAID, and will unlikely work, but has side effects)
5.  Tiredness (in my case, extreme...as well as nutritional issues)

So, what does all of this mean?  Well, it means that he went through each of these, without me prompting, and made me feel like I wasn't crazy for "wanting it all".  He seems to think I'm on the right track in pursuing this, and maybe it's just a matter of timing.  I'll need to be on dialysis for a couple of months, so it'll be important to plan for when the best time for that is...is it when Izzy's in school or during the summer?  I mean, he gave me options...HOPE!!!

So, the next step is to get a more accurate picture of my kidney function.  There's a test called an iohexol clearance test that will more accurately measure that.  Once that result is obtained, there will be more information to present to the surgeon and the rest of the transplant committee in order to plead my case.

Don't worry though...I'm not totally getting ahead of myself. I know that there are still hurdles that will get thrown in front of me, but hope goes a LONG way in giving me the patience and fortitude to see things through, and I got a BIG boost of that today, which is great because THIS is what I've been dealing with the last few days (notice my right leg at the beginning of the video):

Aug 19 2013 - swelling from Jenn Trunk on Vimeo.

blaaaaaaaaaaaahhhhhhhh.

I have been feeling VERY blah lately.  I mean, nothing really interests me.  I could spend HOURS sitting on the sofa watching TV and be completely content.  I just feel so very lethargic and apathetic, and I'm a bit frustrated by it because I can't seem to get out of this "funk".

I got my labs from Mayo last week, and my protein is still hovering around 11 grams/24 hours.  Next steps?  Well, I'm not exactly sure what the next steps will be.  There's another drug to try, but it doesn't come without side effects, so I need to weigh the pros and cons to see where I land.  I have an appt with ANOTHER nephrologist at the U of M next week to discuss the transplant, but I'm fairly confident that the end result will remain the same.

BLAH.

BLAH.

BLAH.

Happy veins!!!

Last week was the first week since last October that I haven't had to get my blood drawn.

That's pretty freaking awesome, and my veins are VERY happy.

This week, I'm off to Mayo again for my 24-hr urine check to see if there have been any changes because of the clinical trial.  I have no idea how I'm going to do the collection on Wednesday, as I have 2 meetings scheduled right now.  On the urine collection days I typically stay home...anyone that's ever done one of these knows that it's a huge pain, most of all because it has to stay cold.  That's not exactly easy when the temperature is supposed to be near 100 degrees on Wednesday.  Hopefully I'll figure it all out.

Even more so, I hope that something's changed on my labs.  The last couple of weeks haven't been too bad...the swelling is tolerable.  Even so, it'd be nice to see my protein level drop.

Less than inspired - FSGS Sucks

The title of the post describes, fairly accurately, how I've been feeling lately.  I'm not inspired to do much of anything...I don't feel like blogging, taking photos, going anywhere.  I REALLY feel like sitting on some comfy piece of furniture with my feet up, a bowl full of yummy fruit at my disposal, and some Food Network or Cooking Channel.  THAT'S my idea of heaven right now.  But, since it's been a month since I last posted, I figure I better write SOMETHING, right?

I had my last infusion of the clinical trial on June 20, right after we got home from a lovely cabin vacation.  All went well with the infusion.  I did kind of "lose it" a bit.  I went there in an incredibly foul mood.  I was just at that point where I felt like, no matter what I did, nothing would be done to help me.  I was still having bleeding issues, but I know that my GYN won't do anything about it.  Sometimes I think people in the healthcare industry don't understand how hard it is to be a chronically ill patient.  So many doctors, so many drugs, so many complications.  Unless they're all in the same building, talking, it's a no-win situation for a patient.  It's a tremendous amount of work, and I was just at the point where I just didn't care anymore.  I was tired of fighting, tired of all of the effort I was putting into it all....just tired (I think I should rename this blog to "Just Tired" as often as I write it :).

I keep using the past tense "was" but it's probably still at "am".  I AM tired...still, of fighting, coordinating, blood work, urine tests, doctors visits...blahhhhhhhhhhhh.

Dr. F and I had a bit of a "come to Jesus" moment that I won't go into, but hopefully the outcome is good for both of us.  We're working on my diuretic dosages to see if there's something we can do to help the swelling.  I'm taking 60 mg of torsemide and 10mg of metolazone in the morning, and then I'm trying to not take any in the afternoon/evening. I've found that, no matter what time I take them in the latter part of the day, I have to get up during the night to pee.  Not getting a complete night of sleep was wrecking me, so I'm playing around with it all to see what works and so far, so good.  I'm not swollen so much during the day, and even the evenings aren't too bad.  I don't want to take so much that it screws other stuff up (like my blood pressure and electrolyte balance) because I don't need THAT hassle, and I'm terrified of the tolerance that I think I'm building towards these diuretics.  Fingers crossed that I can figure it all out.

I went back and met with Dr. I at the U to discuss the transplant evaluation, and some of the discussions that occurred during the evaluation.  Needless to say, at this time, I'm not a candidate for the waiting list OR transplant.  Until my creatinine starts going up, I'm pretty much out of options.

Dr. L and Dr. I both think that, technically, my kidneys are a lot worse off than the lab numbers are showing.  Due to the fact that I've spilled 12 grams or more of protein for the last 3 years, my creatinine should probably be higher, but my kidneys are most likely hyperfiltering, meaning they're trying to keep up with all of the protein loss by being "super filters", but that eventually they'll peter out within a couple more years.  I'm not sure if I got all that right, and it really doesn't matter because the only thing that doctors look at are the lab numbers.

So I'm feeling physically decent..surviving.  I'm focusing heavily on yoga, both from a fitness perspective (I'm GOING to lose this damn belly) and from a mental perspective....I can REALLY go inside myself during hot yoga, and I love how hard and yet relaxing it is.  I also think that, no matter how yucky I feel, going to yoga helps clear my head, and gets fluid moving in my body, which eases the discomfort.  From a work perspective, I'm still struggling with my memory as well as organizing my thoughts, but I'm going to try some mind mapping apps on my iPad to try to help organize everything up here.

And that's about it!  I'm going back to Mayo next with with a 24-hour collection to see what my levels are at now, so I'll probably post an update again after that.

If you don't like profanity, you may wanna pass this one up.

Sooooooo....things aren't looking so good in the transplant department for one apparently "too healthy" person...yes, me.  And sometimes it's incredibly difficult for me to organize my thoughts, so bear with me if I'm ramble-y and sounding confused (well, that might be because I probably AM confused, but I digress).

I called the clinical trial coordinator today to report to her a potentially adverse effect, being that I've had my period for 3 solid weeks now, and am heavily clotting (gross, and probably too much info, but too bad, it's my blog :).  This has happened once before, which the clinical trial coordinator mentioned.  She also noted that I wasn't on the drug at that time, in other words "not my problem".  Ugh.  My doctor was also in the room with her, and they put me on speakerphone (which is a wonderful yet incredibly annoying invention, don't you think?) and I told Dr. Fervenza what was going on.  He wanted me to change my warfarin dosage because that's what he thinks it is, and started rattling off some dosages.  Do doctors seriously not understand that it's not easy to change dosages???  That I can't take a 3mg pill and make it 1mg????????  FOR THE LOVE OF GOD AND ALL THAT IS HOLY WHY THE HELL CAN'T ANYTHING JUST BE EASY AND FUCKING NORMAL?????????????????????????????????????????????

Whew!  Sorry about that...had to get that out.

Anyway, I told him about my severe swelling (I'm up about 15 pounds from last week...I'm seriously at the heaviest I've ever been), and about the fact that I can hardly sit and breathe because of all of the water pressure on my stomach and chest.  I've had training the last 2 days, and a sales meeting the day before that, and it's absolutely wrecked me.  I wore my compression stockings today just so my feet didn't explode, but it made my size 10 pants feel like leggings because all the water just moved up.  Awesome, right?    So he told me to double my dose of diuretics tonight and tomorrow morning, and then to give him a call back to tell him how much I'm peeing.  I bet no one else gets to call their doctor and talk as much about peeing as I do...jealous, aren't you?  I'm all sarcastic and tongue-in-cheek tonight because I just have to be for fear of losing one of the last little threads of sanity that I feel like I have right now.

Dr. Fervenza ALSO mentioned that he spoke to Dr. Matas (transplant surgeon at the U) and let me paraphrase here when I say that they both think I'm nuts.  Essentially, what I heard was that both of them agree that it's not a good idea to give me a transplant.  And Dr. Fervenza mentioned something about the fact that he's keeping me in mind because he's talking to another company that has a potential new drug.  Now while I appreciate the fact that he's "keeping me in mind", I'm done being a guinea pig.  No more drugs...no more "let's see if this will work"...I'm done.  D.O.N.E.  I don't want to hear about another drug because, let's face it, it's hopeless.  4 years of spilling this much protein with no changes for the better, albumin constantly going lower, swelling always worsening (have I mentioned the fact that I'm too healthy to transplant?????).

So, hopes crushed unofficially.  I'll officially let you all know I'm crushed when I'm officially told "no".

I called and made an appointment with my PCP today because I need a refill on my crazy pills, plus I need to talk to her about the cyst on my hip (did I mention that anytime???  oh yes, I've got a cyst on my left hip that was discovered during my MRI....great, right?), as well as the bleeding.  I called the coumadin clinic that manages my INR, and they don't think that there's any correlation between my INR and the bleeding (and I trust them more than my nephrologist on this one), but I'll go in and get it checked again on Friday when I go to see my PCP.  She'll probably send me back to a useless OB/GYN who will see that I'm coumadin and then blame it on that.

Do you all see the constant battle that this is?  Do you understand how hard it is for people that are chronically ill that have multiple symptoms/issues...who the hell do I go to for an issue?  My nephrologist, my PCP, my OB, a surgeon, the coumadin clinic?????  Somebody tell me who, please.

I've got kidneys that suck but I'm apparently I'm not sick enough for anyone to take me seriously, and the fact that my quality of life is at a big fat zero is of no concern to anyone.  Anyone.  I have a cyst on my hip that was discovered during an MRI, but my nephrologist doesn't "think" that they'll do anything about it, so he's not going to either, meanwhile I'm always in pain.  I'm bleeding, constantly, for 3 weeks, clotting, and probably becoming even MORE anemic, but my OB blames it on my coumadin because she's too damn lazy/scared/not skilled in chronic issues to think it could be anything else.

For fuck's sake...I give up.  I'm fed up...fucking fed up with the system, fucking fed up with these kidneys and how fucking hard it is to do anything, and how fucking much energy and time it takes to try.  I am the best advocate I have, and I'm pretty damn good at it, but I'm so tired of fighting...soooo sooooo tired.

Transplant update

I went to my transplant evaluation at the U of M Transplant Center yesterday, and before I go into any details, I'll just say that it didn't go as I'd hoped.

I was so very focused that I didn't take a single picture all day, which is weird for me.  This is something that I typically would've documented the hell out of, but I think that since Joacim was with me, I'd always leave my purse and my phone with him, so I rarely had the ability to take a photo.  Even so, I won't forget the day.

It started out with 22 vials of blood being drawn, while I had been fasting, mind you.  Oh, and a cup of urine too.  22 vials is EASILY a record for any of my draws...previous record was 17.  After the blood draws, I had a chest x-ray and an ECG.  Next, our transplant class.  Now, honestly, I didn't get a lot out of this class that I didn't already know.  I felt as though it's targeted to people that have no exposure to transplant, which certainly isn't me since I'e done my research.  Joacim and I were kinda floored by the lack of knowledge the other people in the class had about transplants in general, or even their own health.  The instructor asked one gentleman what kind of diabetes he had, and he said, "I'm not sure".  WHAAAAAT????  What do you MEAN you're not sure???  How in the hell is that even possible?  I just don't understand how people can go through all of this and not ask questions.  It's great to have faith in a system, but my nature is not to give up all control to someone else.  And yesterday I realized even more than I am a pretty damn well-educated patient, and advocate for myself.

And then we met with the surgeon, and this is where the wheels fell off of my happy wagon.  The surgeon that we met with is actually the Director of the Renal Transplant Program, which is why what he said makes it so much worse.  I don't remember all of the words, but I vividly recall him saying that he was not comfortable with what I was proposing and advised against it.

Ouch.

It's probably best if I explain a bit how this works.  I met with a surgeon, nephrologist and social worker yesterday.  Next Wednesday, these people, along with their peers (which is more transplant surgeons, nephrologists and social workers) will meet in a committee to discuss the patients that came through the week prior to determine who is and who is not a good candidate for transplant.

Okay, back to my story.  When I heard the surgeon say it, I cringed.  He seemed surprised by what I was proposing, which irks me a bit because I know that my transplant coordinator had full understanding of what my situation was.  After talking with him, I met with a transplant nephrologist.  Unfortunately, he and the surgeon had spoken in the hall prior to me getting to see him, so I felt that his opinion could've been slanted a bit, but he tried to reassure me that he would be very objective during his evaluation, and I did actually get some relief out of that.  When that meeting was done, we had lunch, and then went back to the transplant center to meet with the social worker and the nutritionist.  Prior to that, I had a little scare.  They needed to do ANOTHER blood draw to do a 2nd check on my blood type (to prevent any errors).  I must've been a bit dehydrated, because the plebotamist had a bit of difficulty getting my blood, so he started moving the needle in my arm.  I was watching him, and I started to feel light-headed, and then everything started to fade to black.  They called the emergency response team and put me on a stretcher because my blood pressure dropped to 75/43.  I felt AWFUL.  They moved me to a room (and hit every single corner on the way :) to observe me, and luckily I recovered fairly quickly.  Apparently my body doesn't enjoy it when needles are messed with under the skin :), but they did manage to finish the blood draw (which ended up being 4 more vials, so my record is now 26 vials of blood in a day.....WOOOOHOOOOO!

After that little nightmare, I met with the social worker and nutritionist, and then had an EKG, and was done for the day.  The only good part of the day is that they've agreed to put me on the waiting list (inactive) due to the fact that my GFR was below 20 back in December when I became nephrotoxic from prograf.  The advantage that getting on the list gives me is that, if Joacim doesn't work out as a live donor and I have to rely on a cadaver donor, then my wait time starts from when I was originally put on the list, which would be now, which would be an advantage if I need to go that route.

If my creatinine was higher, this transplant would be a non-issue, but you see, my kidneys are technically still functioning.  They could still function for years to come without intervention.  But the fact that I lose more than 12 grams of protein a day has a host of side effects on it's own.  I have extremely high cholesterol (600+ without drugs, 300 with), a very low albumin (0.9 at last check) and I'm on blood thinners and blood pressure medications.  I'm severely malnourised.  These symptoms and side effects make my life a living hell.  Daily.  But a doctor looks at my labs and sees that my creatinine (which is a measure of kidney function) is down to 1.3, and they say stupid things like "you're kidneys are working great" and "you don't have toxins building up".  Now, stepping back a bit, I know that they are used to patients that are at full-blown ESRD, or in the hospital weighing 400 pounds with diabetes and heart conditions.  I AM NOT THAT PATIENT.  Yet it seems to be nearly impossible for doctors to not compare.  When they check my legs for swelling, and I say how bad it is, they say other extraordinarily insensitive things like "I've seen worse".  Ummmm, pardon me, but I could give a shit what you've seen.  We're talking about me.  MEEEEEEEEE.  MY life is miserable.  MY pain is real.  MY concerns are valid.  Every single patient is different....there are few comparisons to be made.  I know that, as doctors, they are trained to save my kidneys as long as possible, but I'm ready to ditch these things and get a new one, and they look at me like I'm absolutely insane for proposing a pre-emptive transplant.  I never want to hear a doctor say, "Well, we've never encountered this before."  Ugh...my least favorite thing to hear.

Sorry, I'm ranting a bit, but I'm so frustrated/scared/mad/confused/desperate that I don't know what else to do.  I had 20 minutes to meet with people that are going to decide my fate.  I've spent 8 years getting to this point, and if they say no, then what?  What do I do?  What do I have to hope for?  Another few years of my daily nightmare?  Am I supposed to be thankful for that, because I'm not. I want my life back.  I want to crawl down on my floor and play with my daughter right now, but I can't because of my swelling, which is currently all the way up to my chest.  I am carrying 26 pounds of extra water today, and I am SUFFERING.  And what makes this worse is that a transplant may not even help because my disease could come back...within hours, and they won't know until I actually have a transplant.  Their biggest fear is that they go ahead with the transplant, and my FSGS comes back, and my symptoms are even worse.  I know that's a risk...I'm very well aware, but I guess for me, at least this route provides some hope, blind though it may be. My current situation is seemingly endless right now, with very little hope.

When I was first diagnosed with FSGS, I was scared, sure, but I managed it.  It didn't impact my daily life (except for remembering to take my meds and that awful period on prednisone).  But now, as soon as I wake up, I'm in it, and I'm in it deep.  It's affecting my work, my life, my mental stability, my daughter, my husband....every single facet of my life.  And I'm tired.  And I'm scared, because I don't know what I'll do if I really do hear no next Wednesday.

Today is a sad day......

I found out today that a friend of mine...a young friend of mine, lost his battle with cancer.

He was diagnosed last year...2 weeks before his wife gave birth to their 2nd son.

His wife, bless her heart, is such a kind person.  She helped me immensely during my pregnancy with Izzy.  In fact, I was having lunch with her and her first son that day, and it was she who alerted me to the fact that, yes, I actually WAS in labor.

Although I didn't know him as well as I knew his wife, every interaction with him showed signs of his strong character.  His deep love for his family was evident to everyone around him, especially as he fought this cancer with everything he had.  He posted on Facebook about his treatments, or about how he was feeling, and I was always left in awe in how he faced it all and kept pushing through.

Everyone says things like "I can't imagine what it's like" in times like these, and I understand why.  It's because I honestly can't.  I can't imagine what it was like for him knowing that his future was going to be cut drastically short.  I can't imagine what it will be like for those two boys.  But most of all, I can't imagine what it will be like for his wife, my friend, to raise those boys without the man she dearly loved.

She always said that they'd rather spend money on adventures than gifts, and after reading an anniversary posting by him earlier today, I think they did that rather well.  The amazing adventures they had hopefully help his wife in these months and years to come. I hope they provide comfort to her knowing they truly "lived" life.

You will be missed, friend.  You're pain is over now.

Kettlebells are Killer.....

So I've been doing yoga lately.  I've not gotten into a good rhythm, which I believe will be absolutely impossible with my job, but I do the best that I can.  But there are some days where I just don't feel like leaving the house, which is how I felt yesterday.  I felt guilty for not having worked out for a few days, so I decided to pick up my kettlebell and get to work.  I picked http://kettlebellsworkouts.com/ as my resource to start back up again.  I had a Bob Harper DVD, but that thing was killer from the very beginning, so I wanted to ease into it.  I picked what I thought was a relatively simple, easy workout:

Workout 2 – The Buttocks Lifter

• Kettlebell Reverse Lunge – 10 each side
• Kettlebell Swing – 20 reps
• Kettlebell Squat – 10 reps
• Rest 1-2 mins and Repeat 3-5 times

I only did 3 repetitions of this workout, but I already felt it immediately after I was done.  By the evening, I had a hard time getting out of the chair.  By this morning, I was nearly bed-ridden.  Lucky for me in that my husband doesn't believe in pity (insert all the sarcasm you want here) and got me out of bed to do some yardwork, which feels AWESOME (again, note sarcasm).  How in the HELL can a 10 minute workout hurt SO bad the next day????  I STILL can't walk up and down stairs...I took a soaking bath in epsom salt and I'm lying here typing this with a heating pad on my butt.

Effective?  Yes.  Will I do it again?  Yes.  Will I complain as much the next time?  Probably. :)

It's a BIG week ahead!  Thursday is my transplant evaluation.  It feels like a dream, honestly, to be here now.  I'm a little nervous about all of the info I'm going to get, but excited to feel like I'm making progress in this whole nightmare.  My swelling went down for a day or two, but it's back again, but thankfully much more manageable.  It's all in my belly right now, and a little bit around my ankles.  It's certainly uncomfortable, but at least I'm not embarrassed to show my ankles right now, and I can wear bigger shirts to cover up the bulge.  Wish me luck this week!!!

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 ;)