Tuesday, November 24, 2009
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
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
Thursday, November 19, 2009
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.
Wednesday, November 18, 2009
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
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.
Monday, November 16, 2009
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.
Sunday, November 15, 2009
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
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 chairs, 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 prayer is that his job is done.
Pre-surgery self-portrait at 1am, November 14th — excited, nervous, hopeful...tired...
Friday, November 13, 2009
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:
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.