Tuesday, September 22, 2015

6 more weeks!!!

Today marks the official start of my kidney countdown....6 weeks from today (tentatively, of course) Adam will donate his kidney to me. Wow.

This also made me realize that my time off work has been F-L-Y-I-N-G.  It's already been 5 1/2 weeks!!!!  I looked at my "list" that I made right when I stopped working, and I'm about 60% of the way through it, so that's not too bad.  Unfortunately, I have the re-organization/cleaning up of the basement ahead of me, and I dread it :(

Speaking of basement...I was down there over the weekend looking for my raincoat and I stumbled across a few boxes of old photos from college. What a sobering trip down memory lane.  I loved going through those photos....they were from such happy, formative years in my life.

This was probably 1997.....l-r would be friends Courtney and Holly (who I've known since 3rd grade) and my freshman roomate Carrie.

     
1996?


I'm so glad I have photographs from that time in my life (I'm sure the friends in these photos will look at these and smile too :)  I'll always have the memories, but photos make them so much better!!!  And then I spent the day listening to music from that time period, which ALWAYS makes me happy.  I woke up Monday feeling like I was 22 all over again.

That's one of the things I hate about this disease.  I'm feeling completely robbed of my 30's as they were spent waiting for the inevitable.  Maybe I'd feel the same regardless of the FSGS, but we'll never know.  I don't exactly like this whole "getting older" thing either.  There are so many things  on my bucket list, and I already feel like I'm running out of time.  My body has put such limits on what I can do.  I'm getting a second chance, but it's still a 41-year old body that's coming out of that surgery.  I worry that I won't have my expectations in check, because I'm not sure if I can blame sore knees or the inability to lose the upcoming weight gain on FSGS or CKD (but of course I'll try :).

I've done one EPO injection so far at home (will do it again tomorrow).  I've had so many people comment to me saying something to the extent of, "I don't know how you do it".  And honestly, I don't either sometimes.  I used to have to give myself injections a few years ago, and I absolutely HATED it, but now it's no big deal.  I just buckle down and stick the needle in my belly.  3 years ago it would've taken me a half hour to do it.  What I'm saying is that you'd be impressed with yourself if you knew what you were capable of doing when there isn't another option.

I'm still going to yoga regularly, but I wish that my favorite instructor had a class on Friday.  He teaches Monday, Wednesday and Thursday, but I usually need a full day in between hot yoga classes so I don't go on Thursday, which means I've only been getting 2 hot workouts a week and supplementing with Yogadownload.com and Youtube on the other days.  There used to be a 75-minute workout on Sundays at 11:30, but they moved it to 9:30 for the summer and that just isn't happening for me on a Sunday.  I found a pretty decent set of videos on youtube today for handstand and headstand prep, and I did one of them today at home and it was perfect!  Good pacing, no annoying music, ~30minutes....perfect.

One of the things on my list was to clean out my freezer.  That particular item isn't going as well as I'd hoped, mainly because I've lost most of my sense of taste.  I can still taste sweet things a little but salty, sour and bitter don't even register and umami just tastes like metal.  It's completely ruining my appetite, and thus I no longer want to cook anything.  This couldn't be coming at a worse time because I need to keep increasing my protein intake, and protein tastes....well....awful.  All I want to eat is cereal.  I'm scared to cook for anyone because I can't taste or season things appropriately.

Ahhhhh....just another thing to look forward to in 6 MORE WEEKS!!!!!

4 comments:

  1. Just stumbled across this tonight. Just to give you hope: I have FSGS. Tx 10-2009 at age 49, living unrelated donor. FSGS recurred 6 weeks later. I've had 7 subclavian catheters, 100+ plasmapheresis treatments, and today I am doing great. Eat right, take your meds, wash your hands constantly (which you already do on pd), exercise and I am a Christian with an unshakable belief in Jesus.

    You can do it! What a blessing to have a living donor! The worst part for me was the solumedrol and a ng tube. The meds are nothing after the torturous routine of pd. The catheters weren't fun; nor was pp, but even if it recurs there are many treatment options. Can't wait to read this after your tx!

    ReplyDelete
  2. I was diagnosed with FSGS 18 years ago, went into remission with the use of a low dose of Cyclosporine, now 7 years later its back with a vengeance. I am currently back on the Cyclosporine, awaiting results to see if it is working and have been placed on a low sodium diet, I'm a chubby girl, food is my drug of choice, so for me this is incredibly tough. Any suggestions on how to make this any easier? So far my creatinine level is good, this has the doctor baffled because according to him I should not be in this good of shape, but my triglycerides are way too high. So my question is am I going to do fine with this and then one day boom, it'll be bad? I have so many questions but I don't want to sound like an idiot.

    ReplyDelete
  3. It is so easy to see the strength in others, why is it so hard to see it in ourselves? You have more strength than you are seeing. If I attempted yoga, my husband would have to help me get off the floor. (maybe onto the floor also....sorry, I forgot...you can just fall and get to the floor) Love and prayers to you. Keep the humor. k8

    ReplyDelete
  4. hot yoga??? my doc won't let me �� dehydration is dangerous! so stay safe!

    ReplyDelete

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...