Tuesday, November 24, 2009

More Good News!

I am lagging behind a little on some great news (turns out life is a little busy when the nurses aren't doing everything for us!)

Darren had his appointment at the hospital yesterday to do labs and check creatinine as well as medication levels. And...drum roll please...his creatinine is down to 3.09 (from 8.5 on Friday)!!!!! We're so thrilled with the news, the doctors feel that his creatinine should settle under the 2.0 mark which would be considered a "normal" functioning kidney. Wow.

Now that his kidney is working, we just have to keep close lookout for any signs of rejection. They are constantly juggling his anti-rejection medications to find the right balance. So our prayer is that they do their job in defending this foreign kidney from Darren's very healthy immune system (ironic isn't it). Conversely, as a result of the anti-rejection medications, he is extremely immuno-compromised...therefore he is highly susceptible and defenseless to any common illnesses from a cold to the flu. If he were to get the flu, for example, they would have to pull back on his rejection meds to allow his body to defend itself, which of course isn't ideal since he needs his immune system suppressed right now in order to protect his kidney. Needless to say, I've purchased an industrial sized container of hand sanitizer and I'm not afraid to use it. ;)

Darren's definitely feeling the benefits of his kidney function, despite the surgery pains and recovery. It's wonderful to see the signs of how good he's going to feel post recovery...we've so cautiously allowed ourselves to accept all that will change due to this transplant....but the possibilities are slowly seeping their way into our consciousness. How blessed we are.

Sunday, November 22, 2009

Home Sweet Home

It has been wonderful to be home. We arrived around 7:30 Friday night, just in time to have a cupcake and celebrate Darren's birthday, what a birthday gift. So far things seem to be going well, he feels a little better each day and his kidney is definitely doing at least one part of its job (every hour on the hour!)

Today, Sunday, was spent at the hospital doing the last of the induction therapy sessions. He'll be back again tomorrow for labs and medication adjustments, then again on Wednesday and Friday this week. I'm pretty sure his lab appointments will be about 3 days a week for a month or so, then slowly taper off if things are going well. We don't know what his current creatinine level is, so we're anxious to find out tomorrow. They said it could take a week or more to creep down to the level it needs to be (under 2.0), so continue to pray that it keeps doing its job and Darren's body accepts this new organ.

It's really hard to believe that a week ago today was Darren's first day out of surgery, so much has changed. Not only getting a new lease on life, but the small things too...like how much better he feels and looks after such a major surgery. We continue to be in awe at all that has transpired in such a short amount of time, his life has been forever changed by the choice of one person...it's humbling to think about.

I don't have the kind of pensive time I had at the hospital, coming home means back to life... full swing (and then some!). But I will continue to update this blog as we get news...especially since all of you are now such kidney experts (by force). Thank you for your continued support and prayers, I really can't begin to express how thankful we are for all of you.

Friday, November 20, 2009

Day 6: The Best Birthday Present

I can not think of a better birthday present for Darren today (or anyone really)...health and happiness. Its what we always wish for people, right. Well...today, on Darren's 41st birthday, he gets that chance again. (He's had the happiness...but the health is a good addition.)

The news this morning continues to be good. His new kidney is slowly doing more and more. His creatinine is down to 8.5 from 10.5 yesterday, slow but steady. He has the 4th dose (out of 5) of a very strong anti-rejection med today that's done through his central line. The induction therapy lasts for 5 to 6 hours, so we should be heading home late afternoon/early evening as planned. Yay! He'll probably sleep most of the day due to the side effects of this therapy, but after being woken up every hour during the night...it will be well deserved sleep. Other than a little sleep deprived, he is really doing great and feeling stronger each day.

We'll be back again every other day for lab work and follow up appts for at least a month, then the appts will slowly taper off as long as things are going smoothly. The first 6 months are the most critical, if rejection is going to happen it will typically be in this time period.

We can't wait to go home...and more importantly, see Alice and Fezzik. What a wonderful birthday this will be with a new lease on life.

Love to all of you and thank you for your continues prayers and support.

Darren holding his "fall risk" star right before they upgraded him to a "no fall risk"...along with a few of the PCT's....and a photo of the many many meds he'll be on for a long time.

Thursday, November 19, 2009

Day 5: Playing Nice

It's only 10am, but we've got the news we've been waiting for! Darren's new kidney has started waking up and, as of this morning, his creatinine is down to 10.5 (from 12.4 yesterday). Wonderful wonderful news!

Darren will stay in the hospital until tomorrow, Friday, late afternoon/early evening. Then home sweet home! Of course we'll be back again on Sunday, Monday, Wednesday, Friday...and so on, but he should continue to feel better and better, stronger and stronger.

The prayer now is for continued function (we're not out of the woods yet) and the biggest foreseeable issue now is rejection. They will be monitoring for donor specific antibodies regularly, and of course we'll be watching for signs of rejection...but with his history, we know Darren's immune system is strong...so we're praying that his body will make an exception and take it easy on this one.

Thank you, again, for all of your continued support. We are so blessed by you.

He's looking like himself again!

Wednesday, November 18, 2009

Day 4: Starting off pretty good

Today, so far, has been an encouraging day. It's only half over, but thought I would share what's happened so far.

The good news is that Darren's creatinine is starting to trend down (creatinine in a person with normal kidney function would be around .5 - 1.0, Darren's is 12.5 currently down from 12.8 yesterday). It hasn't dropped very much, but his doctors said that this is the first sign that his new kidney is starting to work. Typically, once the downward trend starts it keeps going. Encouraging news!

However, Darren isn't feeling all that great. A creatinine of 12.5 is still quite high, which means that on top of the pains of surgery, he is experiencing flu like symptoms that are wiping him out. As his creatinine continues to drop however (pray pray pray), he should start to perk up more and be less drowsy.

The other very exciting thing that has happened today (and you're going to get a sense of my world here for a minute...) is that they took the catheter out of his bladder this morning and Darren has peed for the first time in 5 years.... I see a happy future of reminding him to put the toilet seat down, which I haven't had to do in many many years. ;)

Tuesday, November 17, 2009

Day 3: A Little More of the Same

Today has felt a little like groundhogs day...a little more of the same (except sunny outside, and that goes a long way!). Darren's feeling a little better and stronger, he got to actually eat some food today and has been more alert.

His kidney function is a little better, but still hasn't kicked in to do what it needs to do. Although it is working to process fluids, it hasn't yet really started to do all the other functions it needs to do to really make a marked difference in how he feels. The doctors reassure us that this can happen in these circumstances, that it can take a little while for the new kidney to acclimate and really start working...so we continue to be patient.

If things don't change in the next couple days they mentioned that a biopsy of the kidney might be done. This would show if there are any early signs of rejection starting to happen. The only reason they would do this at this juncture is because of Darren's history of rejection (sounds like a movie title "History of Rejection" ;)....not because they are necessarily assuming that rejection is happening. All the other signs point to a normal start.

Thank you again for all the well wishes, love, support, calls, emails, texts, flowers, homemade cards and most importantly prayers. I can't tell you how much it lifts our spirits to hear/read your words of support...and know that our every moment is covered in prayer. We feel your love and support, thank you.

Our Brave Little Girl

Many of you have asked how Alice is doing through all of this, so I thought I'd do a post about our little trooper.

She has been staying with "Grandmapa" since Friday night, which has been a total God-send. I'm so thankful to not be worried or concerned about her, she couldn't be happier than to be with her doting Grandma and Grandpa right now (well, I guess I do have a concern...that she's not going to want to come home!). My parents dropped everything to scoop her up and acclimate their lives to her three year old whimsy needs (of which there are many). I am so incredibly grateful for my family...these are the times when we are reminded how blessed we are. And I feel almost guilty for having such amazing, supportive, loving, knowledgeable parents and siblings to gather my strength and support from, we are so blessed.

Alice has grown up knowing about "Daddy's machine," seeing the needles and tubes, knowing that blood goes through the machine to "be washed" and that..."noooo, we don't touch Daddy's machine...." She also knows about kidneys and that Mommy and Alice have two, but Daddy's kidneys broke. (Or, I should say, "kidanees.") She knows Daddy has needed a kidney to make him feel better, and has even offered up one of hers as a solution. (She did the math!) ;) So, all this to say, when we got the call about a possible match with the Transplant Coordinator on Friday...Alice squealed "Yiippppeeeee!"

In some respects she's got a good foundation for all of this, for seeing Darren in the hospital and understanding...as much as her brain will allow, that this is all good and temporary. She came to the hospital on Sunday, the day after his surgery, to visit with my parents. She was full of humor (as the photos can attest to), happiness and...of course...questions (but what 3 year old doesn't have questions, "why, why, why"). She wondered a little why she had to be so gentle with Daddy, he's usually the one she gets to run and jump at full steam...but she gets it.

Life will be different for a little while during Darren's recovery at home and our many many trips to the hospital in the next weeks and months, but if all goes well...life will be different in a much better way for all of us too.

Alice checking on Daddy and telling him about all her adventures with Grandmapa... And finding the hospital tape with Mom. ;)

Monday, November 16, 2009

Day 2: Settling In

I can't tell you exactly what month it is, day it is, what time it is...or even what I did all day...but I can tell you how much Darren's new kidney "output" each hour of the last 24.

The day started off a little slow..well, slow for Darren's body that is (if you've ever stayed in a hospital, mornings are anything but slow...I have mastered being able to jump out of my cot and fold it up in seconds flat, all while remaining asleep...it's really an acquired skill.) His kidney function remained flat for most of the day. Not really doing any worse, but not doing any better. An ultrasound showed all normal blood flow, which was a relief...but its still a bit sleepy from its journey.

Around 11am he was given what's called induction therapy with a heavy dose of a very strong anti-rejection medication. Along with that medication he received some allergy medication to counter any side effects...however, what that did was knock him out completely for the entire day. Not a bad thing, he definitely needed the rest....but hard for me. I really hadn't gotten much of a glimpse of my Darren back, which gets a little depressing after a while.

However, around 7pm he started to wake up...and so did his kidney. More labs were pulled and the creatinine level, which measures kidney function (the short description), was holding steady, even slightly down. Darren and I took a long walk down the hall, he enjoyed his first food of chicken broth since Friday...and I got to see my Darren again. The one that makes me laugh and tells me how beautiful I am (and that's a stretch right about now...seriously).

I don't think that I can begin to express how proud I am of him, and how incredibly brave he is in the face of all of this. He's far from over the hurdle, in pain and discomfort, being poked and prodded...yet, he smiles and jokes and doesn't complain.

I'm encouraged by his progress this evening and pray tomorrow will bring more good news, even if it's just "holding steady" news. Our blessings are many, we feel His love and presence each step we take.

Praise God.

Sunday, November 15, 2009

Day 1: Getting to Know You

I'm not sure I have ever been more grateful to be sitting on a cot in a hospital room...well, maybe one other time seven years and two days ago.

Today has been a day of watching, waiting, resting and praying. Darren transferred from ICU this morning to a patient room on the transplant floor of the hospital. His new kidney is functioning, but has started off a little sluggish. An early ultrasound showed that everything was in working order, so the wait is on to see when it will wake up a little more.

This time around has been quite a bit different than the last. When Cynthia gave Darren one of her kidneys, it didn't miss a beat. It started functioning strongly immediately, and Darren started feeling good right out of the gate. However this time, coming off of 5 years of dialysis, it's been a little harder for his body to bounce back from the intensity of the surgery. Additionally, this organ not coming from someone in the surgical suite next to him...had a lot more time and distance to travel before it had a chance to start working again. In essence, it's been a day of "meet and greet" for Darren's body and this new organ (and I'm hoping for no awkward silences!)

We have been reassured that this slow start can happen, and we feel in VERY good hands here. The care has been above and beyond, they even humor all my questions, note taking and reading the labs over their shoulders (I know just enough to be dangerous, not enough to not ask dumb questions).

Continue to pray for the function of the kidney, and for Darren's body to accept this organ. These things are at their greatest risk right now. More very soon, all our love!

P.S. I spent an hour reading Darren all of your comments and messages from the last two days. He was overwhelmed with the love and support, it truly has lifted our spirits knowing what a blessing we have in our family and friends. Thank you!

Saturday, November 14, 2009

November 14th - a new day to remember

After several months of blatantly ignoring my blog updates, how shocked you must be to see a second post...just a day after the last! However, in the last 24 hours I think I have enough material to write, well, 24 posts...so I'll keep this to the point (mainly because I need sleep), and will rejoice to let this post be one of happiness, praise and thankfulness.

Yesterday (Friday, November 13th) we received the coveted
call from Virginia Mason Transplant Coordination Team saying that there was a possible kidney match for Darren. Exciting...well yes, however quite cautiously exciting. (This is the 4th call like this we have received over the past 5 years, and as you can probably guess...the last 3 have not turned out well.) After many hours of waiting, the call came in (around 5:23pm..just roughly) that this kidney was a match (insert mumbo jumbo crossmatch, antigen, etc. language here I can't articulate at the moment). And not only was it a match, but it was a very good match...and not only was it a very good match, but Darren was first in line. After a few more hours of limbo, we were told at 9pm that we needed to be to the hospital at 11pm that night for pre-op...and to play the wait and see game.

After some scrambling, random packing and parents flying through the night to come be with Alice... We made it to Virgina Mason late last night hoping, waiting, preparing for what could be.

Let me back up for a minute... This kidney is not from a living donor or someone we know, this is from someone who made their wishes clear to be an organ donor should something unforeseeable happen to them. I can tell you, being on this side of things, the emotional conflict of this tragic circumstance happening to one family...mixed with the hopefulness of what it can do for another, is truly an overload of emotion. But what I do know–as the admittance nurse chuckled to see that Darren was an organ donor–is that if something were to happen to me...or God forbid, someone I love...I can only hope that knowing more lives were saved from one untimely tragic death is of some small comfort. We don't know all the circumstances of what happened, or why it happened to this organ donor...but I know that she has now saved at least one very important life. And that she was a match, a very good match, to Darren...for whatever that's worth.

Fast forward one very long night shuttling through the hospital, getting hooked up to IVs, chest X-rays, uncomfortable chai
rs, 3am questions about the same thing we were asked at 2am and 1am... AND news came in at 8am that the kidney had arrived, was indeed perfect and surgery was scheduled for 9am, Saturday, November 14th. Seven years and one day from the last transplant that transformed our lives.

After 3.5 hours of surgery I got word (with my faithful waiting room team: Christina and Cynthia) that Darren was out of surgery, everything went perfectly...and...the kidney was already working in Darren's body. A-men.

I'm home tonight, trying (so far not hard enough) to get a good night sleep as Darren is well cared for in the ICU at
Virgina Mason. Yesterday I grieved the loss of the kidney Cynthia so willingly gave seven years ago...and today, I cautiously let seep in that Darren has gotten another chance. The road has just begun... his body still has some adjusting to do, the mixture of intricate anti-rejection drugs has to be perfected, the kidney has to continue to function...but, we're here, with another chance.

Darren will be in the hospital for 4 or 5 days, and I will continue to update this blog (now that I have such great news!) with his status. Like I said, more hurdles are surly to come and the recovery is not immediate, but it is with trusting hearts that we continue this venture.

Off to bed...but not before I unplug the dialysis machine that hums in our room each night. I'll put him to rest, my pray
er is that his job is done.

Pre-surgery self-portrait at 1
am, November 14th — excited, nervous, hopeful...tired...

Friday, November 13, 2009

November 13th

On this day 7 years ago, my best friend gave my husband one of the most amazing gifts one could give of themselves...a kidney. Each year as this day approaches, we all get together and reflect on that day and how it really truly transformed all of our lives. Although the kidney ultimately rejected two short years later, November 13, 2002 will forever be etched in our lives as a life changing moment for all of us...a moment where we suddenly realized what was possible,...all thanks to my very brave friend, Cynthia.

I know I haven't updated this
blog in a long while, mostly because there hasn't been much to update...Darren remains on dialysis and we remain waiting for that right match to come along. So, I asked Cynthia this week to write down some of her feeling about today for me to share...here's what she wrote:


November 13th is a big day for me—happy and sad.

It’s a happy day because it is the anniversary (20 years now!!) of my mother-in-law being cancer free. My mother-in-law and father-in-law are going to Cabo for the week to CELEBRATE health! I can’t imagine my world without her, I love her like she’s my own mother and she is such an awesome part of life for my kids…

It’s a sad day because it’s also the anniversary (7 years) of when I donated my kidney to Darren. I remember on the first anniversary his mom sent me beautiful flowers and wrote me a card thanking me for saving her son. I never liked the “You are such an angel/hero for donating your kidney!” comments from people b/c that’s not what it was about at all. My friend had a need and I was able to help him out. It was as simple as that really! November 13, 2003 was the one year anniversary for celebrating and being thankful for friendship, life and for Darren’s health.

That all changed when the kidney failed and it breaks my heart that Darren is back on the list and back on dialysis and back to needing another kidney. I wish I was a freak of nature and had been born with three kidneys because I would give him another one without any hesitation.

I remember before I had kids my mom told me lies, er, stories about how childbirth wasn’t that bad and really she didn’t remember much pain. HA! I will always remember the pain of childbirth J So I guess I should be honest and I shouldn’t say “it was as simple as that” b/c I realize it was a big deal. It did hurt, I was in pain for a week or so and I couldn’t lift my chunky 11 month old son or my three year old daughter for four weeks. The only reason I can say “it was as simple as that” is because I had a wonderful support system—help with the kids, help with meals, etc. Plus every day of those few weeks while I was healing I would talk to Darren on the phone and he’d give me an update on his creatinine level and I could celebrate and remember why I wasn’t feeling so great. I was reminded every day that my pain was so worth it! What an awesome thing that I got to be part of—giving Darren his life back, giving Sara her husband back. Seriously, I am thankful to have had the chance to be part of that.

So now I feel helpless because I did what I could and it worked for a while but we didn’t end up with a happy ending. I wish that I could help Darren find another kidney. This time not just for him and for Sara but also for ALICE! Sweet, adorable, beautiful Alice. It hurts me, it makes me sad every year on November 13. Well, actually it makes me sad every day because we can’t just think about Darren’s need on November 13th or on his birthday or on a day when Sara sends out an email reminding everyone of his need. Sara, Darren and Alice live with dialysis every day and we—their friends and family—need to remember that. We need to remember to love them, support them, pray for them and hey, maybe even get tested for them!

Here’s what I’d love. How about if everyone helps make November 13, 2010 another day to celebrate. Let’s see what we can do about getting Darren another kidney by then. How cool would it be if Sara and Darren could go to Cabo to CELEBRATE 20 years of health?!

Cynthia's beautiful kids, Asia and Ezra...and Darren's likeness, Alice.