A Quick Note… February 21, 2010

Hey everyone!!

I wanted to let everyone know that my parents will be updating the blog peridoically to let you all in on how the surgery went and how the recovery process is going.  Check back for their updates and pictures!

Also, I have talked to some people about the giving of gifts.  If you were planning on buying me a little flower arrangment or stuffed animal, I would have to discourage that tradition.  I am not allowed to have flowers or any plants since they can harbor mold that could cause an infection.  I also already have a bunch of stuffed animals, so the recieveing of more just seems a little unnecessary.  If you want to do a little something I would really appreciate it if you would take a look at the following list…

• Heifer International – buy a flock of ducks!     <http://www.heifer.org/site/c.edJRKQNiFiG/b.204586/>
• Save the Whales – adopt a whale!     < http://www.savethewhales.org/>
• Save Japanese Dolphins – watch The Cove      <http://savejapandolphins.com/>
• SpringHill Camps – an AWESOME Christian summer camp                                                                  <http://www.springhillcommunity.com/Page.aspx?pid=183>

• Clydehurst Christian Ranch – an AWESOME Christian summer camp       <http://www.clydehurst.com/>
• There is also a medical fund being set up for donations that would help cover the cost of transplantation.  You can get more information upon request.

Thanks so much for everyone’s support and I thank God for all of you!!!

Much Love!  XOXOXOX

Here we go… February 21, 2010

It’s honestly hard for me to believe that the time has come, but here we are.  KNOCK!  KNOCK!  It’s time for your transplant!  While the whole thing has always seemed a little distant, these past couple of weeks have seen a lot of progress in the in whole process and here we stand at the precipice of a new chapter in life.  Back on February 10^th, we received news that the second donor had been reviewed by the transplant board, and had passed for donation.  I cannot say enough good things about this person.  She is a blessing, a joy and for lack of a better analogy, she has given me the moon.

Since that time, we have been undergoing routine blood tests and a couple of sporadic doctors appointments.  This coming Monday, both the donor and myself have to go into the Clinic for a full day of medical tests, appointments, etc.  These days are always tiring and this last appointment date promises to accompany a little more anxiety than before.  On Tuesday, both of us have to be at the clinic by 5:30 am (gross) and the transplant starts 2.5 hours later at 8:00.   It is really weird to only be two days out from surgery since I don’t feel terrible and I don’t think I look that bad (hopefully). To go in and have major surgery is a little mind-boggling, since I am not noticing significant side-effects.  However, I keep telling myself that I really should just be thankful that I don’t have to experience those symptoms and that we don’t have to continue this crazy process for much longer.  I cannot imagine having to go through dialysis, waiting for a deceased donor, or a daily feeling anxiety.  I guess what it comes down to, is that I am just really lucky and blessed.  I’ve got it good. J

As for anxiety, I have really only had one pang of it.  I was sitting in my bed one day and it sort of hit me for a moment.  It wasn’t a heart-stopping moment; it was just more a realization of the gravity of the situation.  Part of me feels that I really have no idea of what I am getting myself in to, but the other feels that I have been well informed and there really have nothing to fear.  God has given me incredible peace, and I have found that for every feeling of anxiety or fear that I experience, the solution is just to pray about it.  Lay it at the foot of the cross.  I am totally not in control here, and for the first time in my life, I feel like that is okay.  I have to fill out this Advanced Directive form, which is basically all these questions about what I want done if things go wrong.  While this would normally totally freak me out, I have come to know that I am in good hands, and no matter the outcome, God’s got my back.

In closing, if you could just send up a little prayer the morning of the 23^rd, we would all appreciate your support.  That is really the only thing I can ask for, and I thank you in advance.  You guys are the best support group in the whole wide world!

Much Love!  XOXOX

Peace January 30, 2010

In 5^th grade we had to write these reports about ourselves; nothing really deep, just our strengths, weaknesses, likes, family, etc.  For some odd reason though, I struggled with one part in particular, the character weakness portion.  I continually refused agree with my teacher when she kept telling me that I was a procrastinator.  Personally, I thought she was off her rocker.  How in the world could I, a straight A student, have a serious character flaw like procrastination?  That idea in my 5^th grade mind was utterly unfathomable.  Now, things are a little different, and I am happy to say that I have grown up a little since 5^th grade and realize that I gave my 5^th grade teacher far too little credit, especially since updating the blog has been on my To Do list for…ooh…about a month (sheepish grin).  So what’s new?

Well, we finished J-term this past Wednesday.  I took Films of Great Directors where we watched a film every day from directors like Ingmar Bergman, Krzysztof Kieslowski, and Alfred Hitchcock..  It was a great class, but turned out to be a little more work that I had initially anticipated.  We had to write a couple papers a week and then had to give a 30 min presentation on a 10pg. paper at the end.  Now, while this may not sound like a lot, compared to my lucky-duck roommate, this was a ton of work.  Be sure to remind me next J-term to take Intro to the Muslim World, like she did.  Anyways, we done with J-term and Monday start the new semester.  As the plan currently stands, I will only attend the first week of classes and then withdraw.  I will move home for good next weekend in anticipation of surgery at the end of February.  Yep!  You heard me right!  We are looking to have the transplant the week of February 22^nd.  As for the donor, the first anonymous donor did not work out in the end, and so we moved forward with our second choice.  This wonderful person went through the ringer at Mayo last week (bless them!), and we are still waiting to hear about those test results.  If this donor passes all the tests, their case is heard on February 10^th in front of the review board.  I just pray that they pass their tests and that the review board recommends them for donation.  That would just be amazing!  So until we hear from my transplant coordinator, we are back in the waiting game.  For some reason, this time around, I feel much more at ease and there is not this anxious feeling to combat.  There is just peace.

I hope you all had a great January, and I thank from the bottom of my heart for keeping updated and sending along prayers.  It honestly means the world to me.  Stay warm out there!!

XOXOXOXOXO

Prayer Requests:

• That the donor passes the test and the review board
• Safe travel
• Continued peace
• Unity
• Continued Laughter throughout the process
• Family
• Doctors, Coordinators, Nurses, Surgeons
• My sister’s college decision
• A new car
• Direction for the summer

I GOT LISTED!! AHAH December 24, 2009

Whoo!  What a season this has been!  There are very few words that can describe how crazy our schedules have been lately.  On top of the busyness of finals and the Christmas season, our days have been filled with doctor’s appointments, medical tests, needle pokes and finger prods, but all in all, it has been totally worth it.  This past week has seen the finishing up of finals and the long-awaited journey home.  It has been really nice to be able to focus, to deal with one thing at a time, rather than splitting my time between my health and my studies.  I am just so glad to be free of the clutches of finals week!  Hahaha!

While at home I have had a couple of doctor’s appointments, but thankfully not the heavy-duty stuff we have had in the past.  This past Monday I met with my family doctor so that she could clear the way for the transplant.  She did a routine check-up, and besides my need for a kidney transplant, everything looks good (PRAISE GOD!).  I also met with my Nephrologist (kidney doctor) and discussed the blood work that I had done earlier in the morning.  My kidneys continue to drop in function, but the rate at which they are failing has started to plateau a bit.  My diet has been able to keep my electrolytes in relative normalcy and my doctors say that we are holding steady.  I am just so thankful that they my kidneys are taking a little break, so that we can all slow down and enjoy the holidays.  As my function and my failure rates look right now, we are looking at a transplant at the end of January, and while this was not exactly what I hoped for, I am nonetheless ready and willing to get the surgery whenever!!  These appointments led to I a stress test as well as an electrocardiogram, both of which measure and monitor my heart’s health and strength.  I have been having a lot of shortness of breath, tiredness and weakness, even while doing the littlest of things like cleaning for Christmas.  I just get really winded!  (Does that qualify me as a fat kid?  Hope not!! Haha).  We are still waiting on those results, but they assured me that my heart was in fine shape…actually they just said that I had a very photogenic heart!  Is it bad that that gave me just the tiniest of ego boosts??  The appointments ended with some really great news!  As of December 23^rd, I have officially been listed on the transplant list, and am now accruing time to get me to the top of the list.  I am so thankful for my doctors, my parents and everyone who went out of their way to get listed before Christmas.  I couldn’t ask for a better gift.

As for your Christmas, I pray that you all have a season filled with Christmas lights and home cooking.  Find the value in little things and reach out to those around you.  If this transplant process has taught me anything, it has opened my eyes to the true value of family and friends and I pray that everyone can find a support group as loving and caring as mine.  I thank you all for your continued prayers and support and I wish you all the merriest of Christmases!

Let Go and Let God

Prayer Requests:

• A donor
• That my support group would find refreshment and relaxation
• Safe travel for friends and family
• The 14 (!!!)  individuals currently getting tested
• My doctors
• Praise for those who have given financially (WHAT A BLESSING YOU ARE!!!)

XOXOXOXO

Keep on Keepin’ on December 13, 2009

The end of the semester is FINALLY here! Finals week starts tomorrow and it will be such a wonderful relief to finally be able to focus on one thing at a time, rather than having my thoughts split between classes, homework, doctor’s appointments, etc. Speaking of doctor’s appointments, last Thursday I had my second work up for the transplant list. For some reason, this day of appointments seemed to go so much better than the Nov. 20th one. We were on the road by 7:30 and had blood draws at 8:00. We had a super positive start to the day when they only needed four tubes of blood! Hahaha (it’s the little things that count right?) I then had two ultrasounds done to look at my vasculature and the pelvic region where they will place my new kidneys. I always feel weird sitting in the waiting room of the ultrasound place, since I feel like people look at me and think “pregnant teen” but my dad assures me that that ultrasound place is in an entirely different region of the hospital. I just wonder why the old ladies seem to stare and gawk…hmmm.

After the ultrasounds, we then met with a transplant dietician, which was probably one of the most helpful appointments yet. The diet for transplantation is really strict, since I need low sodium, low potassium, and low phosphorous…which basically leaves me to exist on cucumbers and water. I tried that once at camp since my ankles kept swelling up from the salt, but that gets old after two meals. The dietician made up a really nice meal plan for me and gave me a couple websites where I could go in and make meal plans for myself using the per day intake amounts she gave me. I honestly cannot express how wonderful it is to have hard numbers and facts to use instead of the wishy-washy “don’t eat that” mentality I had been going along with. Although, this appointment was really helpful, we did get some bad news. My blood tests show that I have dropped in kidney function again, going from 18 to 16% function. Also, my hemoglobin is WAY down, explaining why I am so tired all the time and cannot seem to walk any distance at any great rate of speed. My heart just beats uncontrollably, and I have literally measured my heart rate at 139 beats per minute after walking back to my dorm room after class!! Literally crawling into my bunk at night gets me winded and my heart just races as I lay down. My doctors are now prescribing new medication for me to stimulate my bone marrow to make more red blood cells. The new medication is in shot form, which my dad will inject into the skin of my abdomen. I don’t really have any problem with needles, but for some reason I hate shots, and this sounds like no fun. Its times like those that I absolutely cannot wait to just have this whole process over with, but we’ve got a ways to go yet.

We got lunch at Jimmy Johns and we sat right behind a man with a port on his neck for dialysis. Its this nasty tube that sticks out of your neck and is held down by gauze. To say the least, it is pretty unsightly, and the thought alone of something like that on my neck kind of makes me sick. I just really do not want to have to get dialysis and I pray that this whole this can come together before we have to start that whole process.
After lunch, we met with a social worker to talk about the how I am doing, how my family is doing, and just how the whole reality of the situation is impacting us. I was a little skeptical of talking with a social worker, but it turned out to be really helpful. We just talked about how we want to remain as normal a family as possible and how we really want my sister’s senior year to be a big focus. Its not fair to her that I steal the show during one of the biggest coming-of-age times of her life. It’s just going to have to be a balancing act. My dad also said a lot of super nice things about how easy of a patient I have been. It really just meant a lot to hear such positive support for both him and my mom. It is truly a testament to just how great a support group I really have. God has given me so many blessing throughout this whole process and my wonderful support group is just one of the many gifts. I cannot tell you how much your comments, and prayers have meant to me. They have lifted my spirits and kept a positive attitude in my heart. I cannot express to you my thanks!

In closing, I would really appreciate those of you that would feel comfortable to drop my parents a note or some other form of encouragement. They continually pour into me, and I try to make it easy on them, but they need a little replenishing too. I know they would really appreciate some support throughout this whole thing and I know I would really be grateful for anyone who is able to give such support.

Thanks for all the prayers and comments! I know everything will be okay if we just give it up to God, for its all about letting go. Let go and let God.

XOXOXOXO

Prayer Requests:

• My Family
• The 10 people who have called to get tested!!! (SO GREAT!)
• My roommates who put up with all these shenanigans
• Praise for all of the support and supporters I have recieved
• My doctors
• My nurse coordinator
• My transplant team
• Focus
• Laughter
• Direction

Let Go and Let God December 3, 2009

I’ll be honest, I am the type of girl that really likes to have control of the situation. Don’t get me wrong, it’s not that I can’t go with the flow or fly by the seat of my pants; I love to be spontaneous and crazy. It’s just I like to have some semblance of an idea of what my life will entail. So I planned to go to New Zealand next fall and study the dolphins. I planned on graduating within the next year and a half. I did not, however, plan to deal with my kidney disease, FSGS, until after my senior year. So here, in the middle of my junior year, my November 20th test results surprised me. Rather than being at my steady kidney function value of 32, I found myself facing an almost 50% drop to a value of 18. Any function value below 20 grants you eligibility to start collecting time on the organ wait list. Thus has been my goal for the past couple of weeks. This past Tuesday, I basically started the whole process. My morning began with a chest X-ray, followed by an electrocardiogram. Not too much to ask right? Then we made a little stop to the blood draw lab, where they took 17…count them 17, tubes of blood! Never in my LIFE have I ever had that much blood taken in one sitting. And the changes just keep coming. I then had to go to a transplant class where we sat through a presentation of what a kidney transplant entails. My mom of course was rapidly writing down everything on the PowerPoint presentation, every tidbit of useful information while I sort of sat there in some sort of a daze…information overload. So instead of paying rapt attention to the presentation, I kept looking around the room. The people that filled the chairs around me were going through the same process as I was. We all share the same uncertainty, the same restrictions, etc. Strangely though, instead of getting a sense of comradery, I found myself looking at these people more as my competitors. We are all competing, racing against each other, our body, and time, for the gift of a kidney. Those thoughts clouded my mind as we continued through the days appoinments and still well up within me from time to time.
The day continued with a meeting with my surgeon. A really interesting guy from Spain, he gave us even more information and answered some of our most vital questions. He gave me the greatest gift of happiness though when he said that I could still study abroad in New Zealand next fall, since I will probably get transplanted this next spring or early summer. The most amazing thing though was that he personally knew the head of the kidney hospital in New Zealand. What are the odds?!?!?! I cannot help but see that as a God moment. What else could it be, but evidence of the divine in this whole crazy process. This just solidifies my belief that I really have no control over any of this. This whole process can and should be a testament to God’s power and grace. No longer should I rely on my stellar planning skills (numchuck skills….haha), but I truly need to let go and let God. This process of letting go and relying on God will hopefully give my family and I some peace of mind and I think this sentiment should be my transplant motto. He loves me more than anything in the world and I am confident that He will find me the best match, that He will connect me with the best surgeons, coordinators and support group that I can imagine. So if its not too much trouble, I would love any prayers that you could send along, any verses that you could share, or any smiles that you can pay forward! I am thinking about all of you and am so thankful for all the wonderful people God has put in my life.

Prayer Requests:

• My family
• That we would find an optimal match (blood type A+)
• The ability to focus on one thing at a time (school vs. transplant)
• My surgeon
• My nurse coordinator
• My doctors
• My wonderful roommates
• Laughter
• Peace

XOXOXOXO