5 weeks 1 day post-op update!

[Prelude_Sarah]

Hello! I just wanted to update you all about my sister and I.  Kaylah is still doing really well, her creatinine has been hanging out right around .88 since the surgery (it was actually .7 the day after surgery!).  Just today, 5 weeks and 1 day since the surgery, she had her stent removed.  She was really nervous about this procedure, but it ended up being painless and easy for her. 

I'm also doing really well!  I had a few hiccups in my healing process though, but even those weren't as bad as I could have ever imagined.  I developed an infection around my main incision, which my doctor thought to be Cellulitis.  I was put on Bactrim and thought that the infection was going away because the redness was decreasing.  Exactly 9 days after starting the antibiotics, I noticed my main incision was pussing and swollen.  I called the hospital right away, but the doctor told me I could wait until Monday (this was Saturday, the ER would have been busy!) to come in because I didn't have a fever.  It continued to be "upset" the next day. 
On Monday, I woke up with a splotchy rash on my arms, chest and legs.  I went to the hospital, where they determined that I had developed an allergy to the Bactrim and a Seroma around my main incision.  They made a hole in the incision to drain the puss and sent me home with gauze and tape.  What's strange to me is that the allergy didn't show up until the first day after my 10 days of taking it had been up...weird!

After a few days of resting and taking benadryl, the rash went away.  My incision continued to puss for a few days (I was changing the bandage quite often) but the pain had gone away since the pressure was relieved.
I thought for sure that I would have a little indentation on my incision from the hole they put there to drain it, but it's almost completely healed up already! 

I don't want to scare any potential donors by relating the minor complications that I experienced.  In fact, one of the reasons I wanted to share this experience was to say that even though it wasn't "fun", it wasn't that bad.
If I had known that I would have these small complications prior to the operation, I would have been even more scared (if that's even possible!).  I would have probably imagined that it would be very horrific to go through.  But even as I did go through it, it was TOTALLY manageable, and if anything, another unique experience to add to the myriad of other unique experiences that make up the whole donation process.

I'm feeling SO good now though.  There is almost no pain left in my abdomen.  I still feel a little muscular pain when I cough hard or sneeze too much, but the incisions are painless now.  One thing that I'm still dealing with though is fatigue.  I'm 26, and prior to this operation I had TONS of energy.  Now I find that I'm sleepy after only half a day of being up and about.  I've been told that this is normal, and should go away after some time.  And also, I had my creatinine checked at the 1 month post-op point, it was down to 1.13 from 1.19 the day after surgery!  That feels good, to see it go down a little bit already.

Another positive little side note...about a week ago, I realized I was flat broke.  I owe my school money and can't register until it's paid off, credit card bills, car registration was up...all of these things I realized at one time.  I hadn't been working for the past few weeks, and had NO clue how it was all going to work out.  I just hadn't planned on the financial side of donating...I don't know why, but I just figured that the little bit I had would last me.  Also, I had planned on going back to work sooner but had to put it off a little more because of the few complications I experienced.  My prayers have been answered however, because my wonderful older brother put up a fundraising website for me.  In just a few days, it's raised enough money to take care of most of the bills that were hanging over my head.  I find it difficult to take money, regardless.  But at the same time, this is saving me from sinking, so I am very grateful.

So, despite a few detours, ALL good news!  I have so much relief now.  I feel so grateful that it all worked out, my sister and I are both doing great.  It's a new kind of euphoria.  I've never been so grateful for the people in my life, and to be alive! 


Much love,

Sarah

[Scott337]

Sarah,

What a great story and journey you've been on and continue to navigate.  I have so much respect and love for someone as young as you, with such honest introspect and feeling.  You are a beautiful person for being so giving, so loving of your sister (by the way, my youngest daughter's name is Kayla - spelled differently) and so willing to share with all of us and with potential living donors who might read and experience your journey and be comforted by what you say.  

Funny how some of the things we've estimated to be of such importance in our lives (material things, self-interest, etc) turn out to be rather devalued by some of our experiences, such as helping others and putting their well-being before ours or despite the risk to our own health and welfare.  

So many say they would like to or have never experienced an actual miracle, but I think it is more that our eyes need be opened to recognize the miracles in front of us.  Your gift of life, your selfless love and sacrifice are simple examples of the miracles God works through our lives.  Rejoice in his love and his care - you'll not want for the things that really matter in this World my friend.  You ARE someone's hero.

With much love & respect my friend!  I'm glad you're doing well and you'll continue to feel stronger and more full of energy with each passing day.  Take care of yourself.

Scott  

[Fr Pat]

Dear Sarah,
     A suggestion regarding fatigue: many experts say that most Americans don't get enough sleep in the first place, and now you need extra sleep to help with recovery. Some donors try to go back to their regular bed-time after donation (even though they were actually sleep-deprived all that time.) Adjust your schedule to allow a FULL night's sleep, plus whatever naps are needed.
    It's a good idea, I think, for donors to have a fund-raising friend/relative ready to go into action. A couple of donors here who had a longer recovery than anticipated found themselves badly behind in bill-paying, and then it is HARD to catch up. Donors are allowed to be re-embursed for lost wages and all expenses realted to the donation, so it is great that you have someone to do the fund-raising for you. Many people, I think, are HAPPY to give once they know the need, so don't feel embarassed. You're not making any profit, just covering your costs, lost wages, etc.
   Fr. Pat

[Jewels]

Sarah  - So glad to hear your story...and that even with some hiccups I can still feel the euphoria in your words.  It is encouraging to hear as I am now officially less than 1 month out...

All the best for you and your sister!
Julie

[shelley]

Sarah, thanks for sharing about your allergic reaction.  I find I'm less scared the more information I have, not more scared.  Now that I know about what happened to you, I won't be as scared if something like that happens to me.

Also interested in the fund-raising website your brother did for you.  Two friends of my recipient and me are working on one too.  It embarrasses me and honors me at the same time.  I REALLY don't want anybody who needs the money more than I do, to contribute!~ so, mixed feelings....

Glad Kaylah is doing so well!  What are some improvements in her life since the transplant?

[Prelude_Sarah]

Scott, thank you for your kind words!  And I absolutely agree with you, there are miracles surrounding us every day.  Kaylah is a great name, with or without the H!!

Fr Pat, thanks for the encouragement.  My sleeping patterns have been crazy lately!  I do take naps and then some days I sleep in really late.  I don't know if everyone around me really gets why I'm so tired still, but they don't have to understand I guess!   And thanks for helping me not feel bad about the fundraiser, I've never been good at taking help, so this is also a good lesson for me.

Julie, I'm so glad my posts have helped you!  It is nice to be on the other side and to have some answers to give to other potential donors.  I remember being 1 month out from surgery.  Being 1 month after surgery is even better, and you'll be there before you even know it!  It all flies by SO fast!

Shelley, I'm SO glad that hearing about my experience with small complications brings you comfort.  Just as I said before, it was all totally manageable
I think it's great that you're also doing a fundraising website!  My brother started mine using www.gofundme.com.  It's actually still going if anyone wants to take a look at it!  Here's the link... http://www.gofundme.com/help-sarah-heal
My brother calls me a "hero" in the title, which is so nice, but kind of strange for me as well.  I really don't feel like a hero.  I feel like I did something that most people would do for someone they love very much.
Kaylah is doing great, here are a few examples of things that she can do now that she has a functional kidney...

1) Eat!  Before, she couldn't even really keep down water.  Now, she's eating everything in sight!  She knows she can't have too much red meat, but she is really enjoying be able to have a hamburger without dire consequences.
2) Be up and about!  Before, she was in bed ALL day with NO energy.  Now, she's running errands, spending time with her dog, going to shows and parties with her boyfriend, going camping, all kinds of good stuff.
3) She is HERSELF again!  Before, she was not herself at all.  She was cranky, a little bit mean to the people around her that were trying to help, and just always feeling so down and hopeless.  She said that she couldn't even think straight, couldn't read a book or keep track of a conversation.  Now, she's the sweetest little thing, going around baking people cupcakes and cookies just for fun and to show gratitude.  She's HERSELF again!  My sweet little sissy is BACK!  And THAT is the coolest thing in the world to me.
4) She looks GREAT!  Her skin looks healthy, her hair is shiny, her nails are strong...she just looks so beautiful.

There are many other little things I could mention, but those are the main things I've noticed.  Truly miracles

Much love!

Sarah

[ohtobeahayes]

Oh, Sarah, your list about your sister is making me cry happy love tears. Isn't it the most amazing thing in the world to see what a "mere" kidney does? (I don't really say that lightly) I am so happy that you have your sister back and so happy that you get to know that you bought her precious time of feeling well, and there is no price that anyone can put on that.  I love hearing from you because you were so nervous beforehand, as many people are, and in a way, hearing from those who have come out on the other side happy and doing well has more impact that hearing from those of us who skipped into surgery singing "Hit me with those fantastic drugs already!" .  
Yup, every time I think of your sister doing things, it makes me cry.
My recipient also was wheelchair bound and down to 101 pounds before surgery. To see him pink instead of grey, and up walking around- well, I couldn't be happier for him and his family. His sister was a donor in our chain also. They lost their brother to kidney disease in 2003, so I can only imagine what it's like for them to have this time and experience also.
Living Organ Donation is a miracle (as is organ donation, period, but the LIVING part puts the guts in donation...haha- kinda pun-ny, wasn't it?)
I just couldn't be happier for the both of you!
Love,
Nicki