It's a date!

I am officially on the books for April 10th to receive the gift of life! I had all of my pre-op appointments already.  I met my surgeon, whose name is Dr. Turgeon.  LOL  She is Amazing already.  She said she felt like she knew me because of the unusually high number of people who called in to be tested for me.  (Thank you, friends and family!! I love you!!)  She said she reviewed my case many many times with each potential donor, but sadly no one matched me directly.  And she also told me that my name came up a few times already for potential paired donor exchanges, but they were stopped before they every began because all the parameters were not met to their standards.  In other words, the matches weren't good enough.  So, they were declined and I never even knew about them.  I understand that that must happen from time to time, but Dr. Turgeon came in the room and gave me a big hug and said she was SO happy to finally have a good match for me!  She explained the surgery, we chatted about how crappy I feel and how we both have high hopes that a new kidney will help me feel better in many ways.  It may not fix everything I have going on, but I should have a good outcome.  I'll come to Emory for monthly infusions for the rest of my life (or as long as my new kidney is functioning.  There's always a risk for rejection, in which case I'll just go back on dialysis.)  

Some of the other transplant doctors talked to me about being immuno-suppressed for the rest of my life.  I'll have to avoid anyone who is sick because the 3 medications that weaken my immune system to avoid attacking the new kidney will allow me to get sick easier, and will make it harder to get over a sickness.  But I think I can live with that.  Not counting pneumonia a couple of times and Legionnaire's Disease once, my Dad has done pretty well with the immune-system suppressing drugs for the past 21 years.  (Seriously, Legionnaire's Disease.  He wasn't even in the Legion!) 

They will have me up and walking the day after surgery.  My case will be in the afternoon on the 10th because my donor's surgery is in the morning, then the kidney gets transported to Emory (From where, I don't know yet...) Dr. Turgeon wants to have me on the table and ready for surgery the minute the kidney arrives in the OR.  The courier who brings the kidney to us will have a GPS tracker thingie that Emory can access.  We will always know how far away it is, and the Emory staff in the OR will know exactly when to put me to sleep for the transplant surgery.

I'm excited.  And a little nervous.  But mostly excited :) Nine more days!

BTW... Mint is a leaf. Right?  It is a plant. It is a vegetable. Therefore Girl Scout Thin Mint cookies are good for me.  I think I can do similar logic regarding coconut and the Samoa cookies.  I'm eating really healthy today!

Oh, the irony!

Emory got some blood from Sarah and I for additional testing regarding the possible kidney transplants.  While I am still waiting to hear if everyone's blood all matches up, I received an approval letter from Social Security.  I'm officially disabled!  Haha I don't know whether to laugh or cry.  The Administrative Law Judge reviewed my case and approved it without the need for a hearing.  But I am on the verge of receiving a transplant, which would (hopefully) change me back to being un-disabled (at least in regards to my End Stage Renal Failure).

Although, SS also approved me on the problem with my back and legs.  So I gotta get all that fixed up too.  

One step at a time.

The Most Amazing Phone Call

It was a dark and stormy night.  No, wait that's not it.  Let me start over... 

The phone rang on a regular Tuesday night.  (It really was storming at the time)  At first, I didn't understand what she was saying.  Our home phone doesn't have caller ID, so I never know who is calling us.  I could tell that it was my sister, but it took me a minute to understand her because she was so excited and screaming.  Then I heard her.  "Erica from Emory called because they found a match and they want to know how fast I can get my bloodwork done to double-check the crossmatch."  Me: "They WHAT?"  Sarah: "Jenny, there's a match, you are getting your kidney!" Me: "I'M GETTING A KIDNEYYYYY!!!"  Mark was upstairs, and I wanted to make sure he heard me (probably along with the neighbors in a 4-house radius) "I'M GETTING A KIDNEYYYYY!!!!" OMG OMG OMG OMG OMG OMG OMG

So, Sarah will be donating a kidney to someone she doesn't even know so that I can receive a kidney from someone who doesn't know me.  This is all from Emory's Paired Donor Exchange Program.  I don't know if it is just one other pair of people that will swap with Sarah and I or if more pairs are involved.  It could be local people or it could be people from clear across the country.  I hope I can find out more soon.

I wish I knew when it will happen and how long to expect to wait.  But I don't know anything else.  I hope this is it.  I know that things can fall through, I know that sometimes the double-check discovers something that will call it all off.  But I don't want it to happen unless this is my perfect kidney.  And also for the other recipient(s) involved.  I don't want Sarah's life-saving and completely selfless act to be for naught.  I want the person who receives Sarah's kidney to go on and live a long and healthy life.  And I also want that for me.  I want to raise my children and see them grow up and have children of their own.  I want to grow old with Mark.  And I want to be DONE with dialysis!

As soon as the phone rings again, I'll post more.  Until then, I'll be over here praying.

My littlest Valentine

Dialysis Living - Photo blog

I am feeling a little better these days, although tired.  My neurologist doubled the dose on one of my meds.   It makes me sleepy so I only take it at night.  I still feel groggy and "hung over" from it in the morning.  Now I have twice the dose.  I have been doing a lot of sleeping the past few days.  I just can't seem to stay awake very long.  It will take me a little while to become accustomed to the new dose.  Other than that, things are ok and I am not so sad.

I grew up knowing what peritoneal dialysis was.  My Dad did peritoneal dialysis for three years before he received his kidney transplant when I was a teenager.  I grew up knowing there were two types of dialysis and I knew quite a bit about both.  I worked as a Nurse Aide at Beaumont Hospital when I was in High School.  I happened to be assigned to the kidney care floor.  So, I was really informed about all aspects of the care of kidney patients even before my Dad was diagnosed with kidney failure.

I chose peritoneal dialysis because I could do my dialysis at home and while I sleep at night.  (It didn't always work like that... Twenty years ago, my Dad had to do manual peritoneal dialysis four times every day.  That's not easy.)

Here's what my cycler set-up looks like...  It's up in my bedroom right next to my bed.  I needed storage for my supplies, but the dialysis carts that are sold through medical equipment providers are much more expensive.  And blah plain.  I got a 3 shelf wire cart from Target and also bought some colorful bins there too.  Much cheaper and much prettier!  It doesn't match the rest of my bedroom but who cares?  I just wanted something cheerful.  Period.  I think Nate Berkus will understand.

Celena added a baby peacock sticker she made for me to make the cycler look pretty :)

Here is my monthly supply of cycler bags.  There are between two and four bags in each box.  (I go through 2 bags per night).

See how icky it makes my office look?

I mentioned in passing to my friends, JoAnn and Jeff that there wasn't anything I could do about those ugly boxes in my pretty office.  Jeff replied "Wanna bet?"  So, he came over and took some measurements.  Here is Mark and Jeff at work installing my new shelf to hide the boxes...

 

Hayden helped too!

And the final product!

Much better, I think!  My thanks to Jeff for making the shelf and to JoAnn for making the curtain for the front.  It is so nice not having those boxes staring me in the face each time I go in that room.  I love my office even more now!

As you can see, I get through all of this with the help of my friends and family!

Peace,

Jenny

Wibbly Wobbly Timey Wimey...Stuff

Never did I expect to fall in love with this show!  I just finished watching all of the old episodes from 2005 until now (I started watching just before Christmas).  Now, when I think, I hear myself with a British accent. Haha.  Thanks, Dad!  I should have been watching all along... 

I'm feeling a little better today, spirit-wise.  I had a nice weekend with Mark and the kids, and reading all of the messages from so many great friends and family members on here, Facebook, and through text and phone messages really helped me know that I am not alone. A kind word goes a long way. :)

xoxo
Jenny

Timey Wimey

I decided I am not going to apologize for not writing more, because then I will be apologizing every post! Haha, so when I'm up for writing, I'll write.

So, I have been on the transplant waiting list a year now. I think hitting this "one year" milestone has really messed with my head.  I don't really like life on dialysis right now.  The newness has worn off.  I haven't gotten used to the uncomfortably-full feeling I get every night.  My dialysis nurses said I would, but six months later, it hasn't happened yet. I am also a little on the petite side, so that much fluid in me is really too much, and not fun at all.  

I know I shouldn't hope too much, but I couldn't help myself.  First, I was hoping to have a transplant before I had to start dialysis.  Then after I started dialysis, I hoped that the transplant would come soon afterward.  I feel like I am out of hope now.  I have braced myself for the long haul, and if a transplant comes sooner, then I'll be pleasantly surprised.  Well, at least every day I am working my way little by little to the front of the list.

I have been pretty positive throughout this whole disease, but BAM, all of a sudden I see the one year date and I feel like my spirit is broken.  I know I shouldn't let it affect me like this, but dialysis is hard.  I don't feel well.  I have little energy for the day-to-day stuff.  I haven't really paid attention to my appearance for a long time now, and all of a sudden I really don't like what is looking back at me in the mirror.  I am gaining weight from the dialysis fluid and not being active.  Because of this, I am the Queen of Stretchy Pants, but you can just call me the Queen for short.  I have no muscle tone anymore.  Just holding my arms in the position to type at my desk makes my arms feel so fatigued.  *in my Queen voice*  "Carry On!"

I think this is just a phase, this funk I'm in.  I am praying for this to pass.  And I am trying so hard to not let anyone see that I am crying on the inside.  But I'll get past this, I know I will.  My kids need me.  No matter how bad I feel and how much I look forward to bedtime (my bedtime), when I hear Hayden ask me "Mommy, will you snuggle with me?" my heart melts and I will not let wild horses (or my bedtime) drag me away from our nightly snuggle time.  I get into bed with him and we talk about our day.  And we always pick our dreams for the night together so that we will be in the same dreams at the same time (his idea).  Hayden reaches his hands up in the air and grabs the dreams that he wants, then he puts the dreams into his head (through his ear. And he keeps his other hand on the other ear so the dreams don't "fall right out."  Of course!)  He makes me catch my dreams too, but sometimes he notices that I don't catch the right ones, so I have to throw it back and wait for it to come back around and catch it again.  His favorite dreams usually include police cars and rescue vehicles and Doctor Who.  God, I love that boy!

Anyways, I think I am allowed a little bit of woe-is-me on this first anniversary of being listed on the transplant waiting list.  I hope there isn't a second year anniversary.  See.... there I go hoping again.  :)  I'll be just fine.

P.S. Bonus to anyone who understands the title ;)