All the sad, all the worries

As many know from my social media posts, this last week has been particularly difficult.  Last Wednesday, we had to say goodbye to my faithful companion of 12 years....our dog Murphy.  He was my best bud, my 2nd longest roommate, the first dog that we raised as a family.  He was there through the rough parts of FSGS (prednisone, moonface, crushing lack of self-esteem), when I was pregnant with Izzy and happy about everything....he was right there in our bedroom the night we brought Izzy home from the hospital (although initially probably not thrilled about it).  He was there waiting for me to come home from Mayo, and has been my constant dialysis companion since I started doing it at home back in November.

Man, the number of hours that we spent playing with him as a pup because he was so high-energy.....I mean, there'll never be another dog that will get that time and attention from us.  In his older years he became such a distinguished gentleman, with his gray beard and soulful eyes.  I could talk to him....tell him everything that was on my mind, and the only thing he requested in return was constant affection.  I couldn't imagine how difficult it has been to say goodbye to him.....

I've been struggling a lot, emotionally, and this last week feels like it tipped me over the edge.  The first question my nephrologist asked me on Monday was, "Are you down?".  I guess it even shows in my physical appearance.  The waterworks flew for a bit, and she was kind and listened.  She suggested I start back up on Zoloft, but I'm hesitant because I felt nothing.  I stopped taking it last November, in part because I new my time with Murphy was coming to an end, and I wanted to cry about it.  I wanted to feel all the feels.  I wanted to honor him as he had been such a sweet companion to me.

But I don't want to start back up on the Zoloft....not yet at least.  I'm going to try to set aside time every day, even if it's just 5 minutes right now, to meditate.  I'm also going to see what I can do to start getting back into yoga.  I've done it the past 2 days, and I'll admit I was surprised at how sore I am, but I need to push through it.  I think, in the long run, it's going to make me feel so much better, both mentally and physically.  My body doesn't have much range of motion anymore because of all of the sitting/laying I've done over the last 2 years.  I'd love to just jump into a class at Lifetime, but I swear I think I'd either pull every muscle in my body or have a heart attack, so I figure I'm going to baby-step back into it.  I have a membership at yogadownload.com, and they have a TON of classes to fit my needs as I'm building up my strength again.  I do, however, look forward to when I feel strong enough to go back to a hot yoga class.  Those classes are so damn "cleansing" for my brain, and I push myself so much harder in a class setting than I ever will here at home.  And I need any excuse to get the hell out of this house.

I'm going batshit stir crazy in this house.  I'm here all the f-ing time.  I look for useless reasons to leave all the time (except this last week....I think I needed to spend as much time at home as I could with our other pup, Rosie).  February, in general, is a difficult month to get through....it's just so cold here, and the cold starts to seep in everywhere.  I'm freezing inside all the time, so I find myself moving less and less, just so I can be in front of a heater/fireplace or on a heating pad....anything to stay warm except actually moving.  It's just too cold to be outside for long, so we're all stuck here a lot more than we'd like

It feels like dialysis takes up so much of my day....it's really wrecking any sense of control that I have over my life.  I am wanting to switch to nocturnal hemo at home.  It would still be 5 days a week, but it would be a 6-8 hour run overnight.  Maybe that's what I loved about PD....it was overnight and didn't seem intrusive at all.  I'm worried about keeping the needles secure and not making an unholy mess, but lots of other people do it, so I figure I can too.  But I can't make any progress on this until my fistula is fully healed, which I'll find out about on Feb 28th when I return for an ultrasound.  Then I can establish new buttonholes on my forearm again, which will be much easier to secure.  It's healing decently though...

Many people have asked about my blood pressures.  Well, I'm sad/angry to report that they're truly awful.  Just as bad as before.  I have no idea why the nephrectomy didn't do anything to affect them, and I now think I'll forever feel like a ticking time bomb.  I'm back on nearly all the meds, except the one that caused excessive hair growth, but it won't be too far behind at this rate.  Fuck, it's scary with these blood pressures....I just wish I knew there was something else to try, but there just isn't.

On a lighter note, I'm taking a trip, leaving tomorrow.  Nephcure, which is the organization dedicated to finding a cure for nephrotic syndrome, MCD and FSGS,  is hosting a leadership conference in Dallas, Texas this weekend.  I have been completely shying away from any opportunity like this because I just didn't feel like I was in the right mental frame of mind to do anything positive.  I'm not sure if I'm there yet, but I'm hoping this weekend will be the kick in the pants I need to reengage in my life.  I'm nervous to travel, although I have no idea why.  I have to get up at an ungodly hour tomorrow morning to fit dialysis in before I fly out. This will allow me to take this trip without having to worry about dialyzing while there, which is a HUGE relief.  Of course, I'll get off the plane on Sunday, come home and have to dialyze again, but at least it'll be at home, and I don't have to stress about that stuff.  Wish me luck!

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!

Nephcure needs our help! : FSGS Sucks

If you have FSGS, I'd like you to go to this link and read it.  And then I'd like you to complete the survey.  This is how information goes to researchers and drug companies in order to determine if it's viable to pursue treatment options.  If they don't know who we are, they aren't going to work on what we need.  So I'm IMPLORING you to spend the 10-15 minutes....thank you :)


http://www.nephcure.org/find500

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 :)

Lunch and Learn in Minneapolis : FSGS Sucks

Great news, everyone that's near Minneapolis.  Nephcure is hosting a lunch and learn on Saturday, November 10!!! This is a great opportunity to meet others like us, and hopefully learn something new.  I also believe that my doctor from Mayo is one of the speakers.  I'm VERY excited to attend this.  I hope you'll sign up too!!!