Saturday, December 26, 2009

No news is in fact good news.

I've started several update posts the past few weeks, but with Darren home, back to work full time and the holidays thrown in there for good has officially been a chaotic month! However, now that Christmas has passed, I have a moment to sit down (in bursts, I still do have a 3 year old) and let you all know that...Yes, it is true, no news is in fact good news. ;)

Darren has been back home for almost 3 weeks, and continues to heal. He feels a little better each day, although recovery this time around has been slow. Even with this kidney working well, the extended amount of time he was on dialysis took such a toll on his body that it could be a while before he really starts to feel normal. However, with all that his creatinine is down to 1.93 which is the lowest its been yet. Couldn't ask for a better Christmas gift!

It's been a truly peaceful and blessed Christmas. I can't give thanks enough for Darren's recovery and the prospect of a healthy future. I'm also so thankful for the time with my family. I often think of the family of the woman who was the donor of this kidney, and through all the joy and thankfulness we feel I'm sure there is equal grief. We have an opportunity to write to her family, and I've started 100 letters in my mind...but never quite know how to articulate my gratitude. I guess I just hope that they'll find some solace in the fact that their loved one lives on through the life and health that she gave to others like Darren.

Thanks, again, to everyone for all of your love and support. I promise to do better posting good, boring, healthy news as often as possible. ;)

Wednesday, December 9, 2009

Home Sweet Home (take 2)

Darren is home from his second week long stay at the hospital in the past 3 weeks! I think we've logged our time (and have gotten our insurance's attention).

It is so wonderful to have him home and to know that he can pick up where he left off on healing from the surgery. He feels and looks good, it's such a blessing. This morning we got the news that his creatinine is going back down, which is such a relief.

I'm happy to leave the hospital food and excitement behind us for a while, and get back to celebrating the amazing gift of having a healthy husband and Daddy at home. Our deepest gratitude to all of our faithful family and friends who have swooped in and supported us through all of this, we really have felt and appreciated your loving support.

Glad we only have to deal with life one day at a time. ;)

Our comic relief showing off the fancy hospital socks while taking Daddy for a stroll...and "silly face" made by Darren's nurse. Oh the fun a 3 year old can find in a hospital!

Tuesday, December 8, 2009

Results In....

The results of the biopsy done on Darren's kidney came back late in the day today, and there are NO signs of rejection in his kidney! Wooohooo! Big exhale...

Dr. Cryst, Darren's Nephrologist, said the kidney does show some damage, but most likely that's because it's such an early transplant. It's very likely any "damage" it shows now will correct itself over time. In the meantime they have put Darren on extra IV fluid (Darren has not been able to drink more than a very small amount for 5 years so it's hard for him to break that habit) and he will at the hospital again tonight. They want to ensure that all his numbers look good tomorrow, so no commitment yet as to when he'll be able to come home...However, we all will sleep better tonight knowing that his new kidney is being made welcome by Darren's body. ;)

I know I say this every night, but thank you for all your prayers and support. We could not do this without our family and friends, you have been our rock.

Monday, December 7, 2009

Results Tomorrow

I just got home from the hospital (okay, I got home an hour ago but had to run around outside and thaw all our spigots and cover's cold!). Darren had the biopsy done this afternoon, the procedure went well. We won't know the results until tomorrow however. He's looking and feeling good otherwise, and quite ready to leave the hospital. We've spent more time there in the last 3 weeks than we've spent at home...quite a bit more time!

We're both feeling hopeful that his creatinine going up is a result of the medications and the Serum Sickness, not rejection. Regardless, he's in the right place right now with the right team of people strategizing solutions for we're thankful for that.

I'll put up a post tomorrow once we get the results of the biopsy. I'm renewed after seeing him tonight, he just looks so much better...and I'm thankful for his restlessness in the hospital, that means he feels good enough to not be there anymore (the hospital is a wonderful place...until you feel better, then all you want to do is get out of there!)

Thank you all for your faithful prayers and support for us. We feel every bit of it, and can't thank you enough...we are humbled and overwhelmed by the love we have experienced through all of this.

Sunday, December 6, 2009

The Roller Coaster Continues

After some good news on Friday it appears we are back on the roller coaster. Darren's creatinine came back up again yesterday, and some more again today to 3.3. They think that one of his anti-rejection drugs is the culprit (this particular drug can actually damage the kidney if he gets too much of it, so it's monitored closely). They've backed off on this drug in the hopes that it will correct itself, but it hasn't yet.

Therefore Darren will continue to stay at the hospital and tomorrow they'll do a biopsy of the kidney to see if there are any signs of rejection. That's the only true way to tell if the kidney is okay or not.

The Serum Sickness has gotten much better. Darren is able to walk now and the pain is under control, so we're thankful to be on the upside of that issue at least.

This has all felt like such a setback, and our hearts are heavy with the news this morning. Please pray for not only the healing of Darren's body and kidney, but for his spirits too. It's been a very trying week and although the care he has received has been wonderful...hospitals can be a depressing place...particularly with the waiting. Please also keep me in your prayers, it is hard to be on the sidelines. Even though it feels like life has stopped, it continues to go on and all the stresses of the day to day weigh heavily on me when I reenter reality and realize how far behind we are on everything. I've missed a lot of work, have maxed out my paid time off and have all the millions of day to day tasks hovering over my head at the moment. I know everything will work out, God is so faithful and we are so blessed...we continue to find our strength in Him. "Nothing is impossible with God." (Luke 1:37)

Thanks again to all of you for your continued love and support.

Friday, December 4, 2009

Heading in the Right Direction

Good news today, Darren's creatinine has started to go back down. It got up to a 2.7 yesterday and came down to 2.4 today. There had been talk of doing a kidney biopsy to check for signs of rejection, but since the creatinine is coming down and the donor specific antibody test came back negative they feel comfortable giving it another day of watching/waiting.

The steroids they started Darren on yesterday for the Serum Sickness have started to make a difference today. He has regained movement in his hands and arms, not 100% but much much better than yesterday. However, the joint inflammation has gotten worse in his knees and ankles since yesterday, so that has kept him bed bound. I think since his knees and ankles were affected later than his upper body, they might just be behind the curve a little. (That's my professional hospital rat opinion...and to think, I didn't even go to medical school...)

They are going to keep him here until he has better mobility, the pain is under control and they're sure his kidney function is normal....all this could happen by tomorrow or Sunday. I am aching for some normalcy in our lives, enough of the excitement for a while!

I'm very thankful that he's starting to feel better, and extremely thankful that it appears his body is not rejecting the kidney... Now if we could just keep ourselves out of the hospital for a while, and me off the hospital cot and hospital body would be grateful. ;)

P.S. Our official physician count is now up to 12...and surprisingly enough, I could probably name all of them if asked (but I can't tell you what day it is....I guess that's a fair trade).

Thursday, December 3, 2009

Possible Answers

It's been a long day of tests and talking and doctors (I think I count 9 that we've seen all multiple times) and more tests and more talking....but finally this afternoon they think they know what's going on.

As part of Darren's post transplant treatment he underwent induction therapy with a drug called thymogloblian (most likely not spelled correctly, I don't have a nurse handy to help me;). This drug is known to cause reactions in patients, typically at the time of administering however. In Darren's case it appears he is having what's called "Serum Sickness" to this drug...meaning, his body is reacting to the foreign proteins...basically he's allergic to it.

The joint inflammation has extended from his hands, arms, shoulders, neck now to his jaw, knees and ankles...which is awful for him, but a good indicator as to the cause. When his joint pain and weakness was only in his upper body, there was concern of this being a neurological issue (which thankfully it's not). They have put him on high potency steroids to help eliminate the inflammation, however because this is an a-typical reaction they're not sure how long before he starts to feel better and regain movement. He currently has very limited hand, arm and now leg movement so isn't able to stand or use his hands for much. It's very frustrating and very painful.

They don't believe that his kidney is in trouble through all of this, but are keeping a close eye on things. His creatinine has climbed up from 1.9 to 2.6 since we've been here, but they feel the cause of that is this inflammation. Of course his kidney function and health is high on our list of things to pray about, he's not out of the woods yet.

I'm really hoping that the steroids they've put him on will start to make some improvements in how he feels. This has been a real bump in the road to recovery, all of which had been going so well.

I'll keep the blog updated with any new information. I think that he'll probably be here for a couple more days, hard to say...we just have to wait and see how he reacts to the medications. Thank you so much for all of your prayers and support!

Wednesday, December 2, 2009

Prayers Needed

Just when I was getting so good at writing "good news" posts... Darren was admitted to the hospital this morning with some strange symptoms. I'll keep this short for now, but will elaborate more tomorrow (once I know more).

Last night (Tuesday), Darren started getting some very severe pain in his hands/arms/shoulders/neck and spiked a temperature. We tried to get him comfortable with some of the strong post-surgery meds we had at home, but nothing was touching the pain he was having in his hands in particular. We went to the hospital first thing this morning and along with these issues, his white blood cell count was extremely high (meaning his body was fighting some sort of battle somewhere).

They have ruled out Neuro issues after doing an MRI this afternoon. And anything to do with the kidney rejecting or loosing function is low on the list of probabilities. That being said, they're scratching their heads as to what's going on and if the infection he has somewhere in his body has any connection to the pain and limited function in his hands.

They put him on some antibiotics and are trying to control the pain for now. Tomorrow we'll have more results back from some of the tests they've done, and we'll be meeting with ID (Infectious Disease) for additional work ups on the source of the infection...along with joint specialists to see if they can shed any light on what's happening in his hands/arms/shoulders.

He was finally somewhat comfortable this evening due to a very high dose of pain medication, so I'm hopeful he'll be able to get some rest (that goes for me too!). It's been a particularly stressful night/day because we haven't known what is wrong, and this is by far the worst pain I've ever seen Darren in (and I've seen the 8" scars on his belly and his creatinine hit the high teens).

Please keep him in your thoughts and prayers today. More soon....

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 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'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) and happiness. Its what we always wish for people, right., 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 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 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 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 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 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'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 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'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.

Friday, June 26, 2009

Testing Update: Not a match

We heard back at the end of the day yesterday (Thursday) that neither Zach or Matt are a match for Darren. Darren's anti-bodies reacted strongly (adversely) to both Zach and Matt's blood samples. I'm thankful for a clear result (although, wish it was a clearly good result!) and know God has a plan, good thing we don't have to worry about that. ;)

We are disappointed, of course, but not surprised...and certainly not giving up hope. I'm confident that the right person/situation/kidney is out there, and we will be patient until then. We are so immensely thankful for both Zach and Matt for coming forward and committing to donating Darren a kidney, even if it wasn't to be. The hope and Grace we feel in our lives is ever present.

So, what's next? With your help we can continue to reach out, share and inform...and through that, I hope that the right person is found.

Thursday, June 18, 2009

The Perils of the National Waiting List

Every day at about 3:30 I get a Google News email listing all the articles related to "kidneys" that come across the internet that day. Lately there have been a lot of articles about living donors (daughter gives to Mother, friend gives to friend, woman gives to My Space acquaintance...etc.) which is really wonderful. (And apparently there is a trouble making soccer player by the name of Kidney in England that I get to follow as well.)

However, there is also a lot of sobering news. I came across the below article this week in the LA Times, which I thought was worth passing along. The statistics don't surprise me when I see the difference between the amount of people waiting for a kidney on the national waiting list (80,000) and the amount that actually receive transplants each year from that list (less than 10,000). With 400,000 people on dialysis now in the US and the projection being more than 2 million by 2030, the realities are truly sobering. It really drives home the importance of being an organ donor. If more people educated themselves, checked that box on their drivers license and made their wishes known to family...these statistics could change.


Number of patients who die awaiting kidney reaches new high

2:00 PM, June 18, 2009

The shortage of donor organs has been a problem for many years, and it isn't getting any better. A study published today found that 46% of patients age 60 and older currently on the waiting list for a kidney transplant will die before receiving an organ from a deceased donor. The study is published in the Clinical Journal of the American Society of Nephrology.

People in search of a kidney may have better luck trying to find a living donor -- someone who will give up one of their two kidneys.

"We have now reached a notable benchmark in which nearly half of newly listed older candidates will not survive the interval to receive a deceased donor transplant," the lead author of the study, Jesse D. Schold, said in a news release. "Our results emphasize the particular need to consider living donation as an alternative source for some older patients -- or alternatively, the critical importance of navigating the steps to receive a deceased donor transplant as rapidly as possible."

Schold, an associate instructor of medicine at the University of Florida, analyzed data on nearly 55,000 patients over age 60 who were on the U.S. waiting list for a kidney transplant from 1995 to 2007. Patients age 70 and older and African Americans were even more likely to die before receiving a kidney. Besides age, factors such as blood type and being on dialysis at the time of listing also affected the odds of receiving a transplant. The study also found wide variations in regions of the country.

The number of people who need kidneys is increasing while the number of donors has remained stable. That means time on the waiting list has grown and more people die. Only certain patients are viable organ donors at the time of death. While many family members consent to donation, an astonishing number of Americans refuse to offer what has been called "the gift of life."

Information on organ transplantation, donation and procurement can be found on the websites of the United Network for Organ Sharing and Donate Life America.

-- Shari Roan
Photo: A patient receives kidney dialysis. Credit: Mark Boster / Los Angeles Times

Tuesday, June 16, 2009

Testing Update: Step 1 - tomorrow!

Darren, Matt and Zach will be going in tomorrow (Thursday, June 18th) to do the blood draw for the first step of the matching process. As I mentioned before, this test will determine if Darren's body will react to either Matt or Zach's. A "negative" reaction is good (meaning, there was no fighting antibodies) and a "positive" reaction is, as you have guessed, not so good. So, let's pray for a "negative" reaction!

We won't know the results of that test for 10 - 14 days. So as we patiently await the results, please pray for clarity in this process.

Now off to hold my breath for two weeks...

Wednesday, June 10, 2009

Testing Update: Here we go!

Well, here we go....

I've been waiting to post an update until I had as much concrete information as possible. But I can't wait any longer. In the next couple weeks, Zach Entwistle and Matt Peloza are going to have the HLA and genetic typing test done to see if they could be a donor match for Darren! This is the very first (and big!) step in the testing process. Basically, this test will determine if Darren's body will react against Zach's and/or Matt's tissue. If it does, it means that they are not a match for Darren.

As most of you know, Darren has had a very high sensitivity due to the previous rejection, meaning he has many active antibodies ready to throw down and fight. This has been the reason none of the half dozen or so people who were tested for Darren several years ago were a match. Over the years he's been back on dialysis, his sensitivity has subsided...although still considered high, it's not nearly as high as it was when others were tested for him. All this to say, a match right now is about a 50/50 chance....I'll take those odds!

Although we are cautiously optimistic, we are unexplainable thankful for Zach and Matt (and their lovely wives, Suzi and Cami :). They're not only willing and ready to give a part of themselves, but with such compassion and confidence. The gift of hope they have given us is a true blessing.
Through all of this, what I hope and pray for the most is clarity and secondly, for patience.

Right now the test is scheduled for the next couple weeks. Once it takes place, we won't know the results for 10 - 14 days. I'll be sure to update the blog with the timing and results as things progress.

So...stay tuned!

Wednesday, May 27, 2009

Our Feature Film Début

Last Thursday was the Northwest Kidney Centers Breakfast of Hope fundraiser. It was a great event, filled with hope and inspiration for the future of kidney disease research. We were fortunate to be asked to share our story for the event, so a video was made of us talking about the challenges of living with kidney disease and shown at the event. I just received a copy of the final video, which I'll post below.

We met many wonderful people, made lots of connections and were endlessly humbled by the strength of people who live, like us, with these same challenges. Thank you to all who attended the event with us, we feel very loved and supported by all of you!

Tuesday, May 19, 2009

Fighting words

I was checking out the Seattle Times article this morning and noticed all the comments made to it online. All good except for one very cynical individual who has jumped to some grand conclusions about Darren's situation (ie: that he did this to himself). My first Mother Hen reaction is to hunt that individual down and let them know the reality...however, after thinking about it, it seems a better approach would be to bombard them with our own comments to the article. So, if anyone sees fit, I'd encourage you to take a moment to overrun one sad individual's comment with many good and insightful comments. I mean no ill will to "pcadmingirl" from Capital Hill, WA...and in fact feel a little sorry that she/he lives in such a small mind. Too bad small mind learned to type.

Here's the link again, go get 'em! "Living with kidney disease"

P.S. I've heard that adding images to postings increases traffic, so here's a photo that shows how we feel about bad comments!

Words from a loving brother

Darren's brother, Mike, called last night to say he was having trouble posting a comment to this blog. I was, as I am every evening from 6 to 10pm, consumed with a lively child... so Darren told me Mike would email me his comment and asked that I would just add it to the comment section.

Well, what Mike failed to mention (thanks a lot Mike) was that I shouldn't read what he wrote when at work otherwise people were going to ask what was wrong with the blubbering girl sitting at her desk. (Allergies is my answer...)

This message—from a very loving older brother—does not deserve to be a "comment."


After reading the article today by Jerry Large [Living with Kidney Disease], I sat thinking and began to play Monday morning quarterback. What else could Mr.Large have said to drive the importance of this situation home? After contemplating the 'woulda's, coulda's, and shoulda's, my mind shifted to the positives. Thank God Mr. Large has seen fit to shine the light on not only on my brothers situation, but on the situation of kidney disease and its effects on individuals and families as a whole. Mr.Large's macro approach to shining the broad light is very welcome and necessary. When more people become informed of the the relatively simple testing procedures and the amazing and gratifying sense of selflessness and the knowledge that their deed has in fact provided the mercy and grace that we all pray for. Thank you Cynthia for not only saving my brothers life, but for providing an example for those who choose to donate or at least are contemplating the idea. Thank you Sara for taking the micro approach and shining the light on Darren's ordeal and making it personal. You single handedly have provided family & friends with hope and most importantly knowledge. With a soldiers spirit and an angels heart you choose to fight the good fight. You started a dialogue where before, people have been silent. You informed people whose minds were previously closed to the idea of donating. Most importantly you have given my brother the ability to see the possibility of living a long life; the ability to see Alice growing up; the ability to experience honest and selfless love. For this I will always be grateful. For all of you bloggers out there, you are being educated and informed. Spread the word, get tested, save a life; at the very least sign the back of your drivers license.

Michael Patillo

Monday, May 18, 2009

Seattle Times article link

Pretty nice article in today's paper on Darren written by Jerry Large at the Seattle Times:

Thursday, May 14, 2009

Breakfast of Hope: Staring the Patillos

The Breakfast of Hope is a fundraiser Darren and I are involved in for the Northwest Kidney Center (NKC) and the Kidney Research Institute. The NKC is a non-profit organization that supports dialysis patients in the Northwest. Darren went to their centers for his dialysis up until about a year ago, when they trained him to do home hemo dialysis. Basically, they keep us armed with the supplies and knowledge to keep Darren alive (and for that, I support them 100%!).

The NKC has teamed up with UW Medicine to create the Kidney Research Institute. This is particularly exciting for us as they will focus research on early detection, improving treatment and delaying or even preventing the need for dialysis altogether. Darren's kidney failure is hereditary, so we obviously are in full support of any dedication to the area of prevention as it relates to our daughter and the next generation.

Darren and I were asked by NKC to be the feature patient/family for the Breakfast of Hope event. So we recently became movie stars for the video they'll show at the event (and by "movie stars" I mean 5 minute documentary participants). Click here for a sneak preview. On top of that Darren has been interviewed by Seattle Times columnist Jerry Large for his column coming out on Monday (5/18). We'll relish in our 15 minutes (okay, maybe 5 minutes) and hope that it will bring greater awareness to the desperate need for research in the area of kidney disease and the 400,000 people affected by it today. We feel pretty honored to have an opportunity to take this challenge in our lives and use it to give back.

The Breakfast of Hope is next Thursday, May 21st at the Westin in Seattle. I'm sure there are more seats if you'd like to attend and see Darren and my heads larger than life on screen (oh my). Thankfully our daughter is in the video and will surly steal the show! We're also happy to sign autographs afterwords, first come first serve. ;)

Tuesday, May 12, 2009

Kidney update: A lesson in patience

I think patience is a lot easier when you're in denial (or maybe it can't be called patience when its denial...ahh, deep). Once you realize that things can be different, that zen goes out the window and you want change NOW. I always thought I was the most patient person in the world, but as it turns out, I'm miles from that self-proclamation...(the realization is not only true for this situation, but being the mother of a 3 year old really drives that fact home!) We continue to practice (and I say "practice" because we've not got this mastered) patience as we wait for the right person, situation, kidney to come along.

No matching tests have taken place yet, but we remain hopeful. The decision to pursue donation is a big one. It's so very inconvenient, voluntary, scary, intimidating. You don't know what to really expect, how things will turn out, how you'll feel, if you'll get the support you need....honestly, the concerns are endless. I can completely and utterly understand the apprehensions, and they are all very legitimate. I've not donated a kidney (yet) so I can't even comprehend the sacrifice one would have to make to give a gift like this. But what I can speak to, first hand, is the result.

The result of Cynthia giving Darren one of her kidneys changed our lives. Even though it lasted only two short years, it gave Darren two more years of life. His spirit came back, his energy, his outlook, his hope, his inspiration, his passion...all the things that fade when you don't feel well. I also honestly think that we wouldn't have a daughter if it weren't for Cynthia's kidney. Even though we had our daughter once Darren was back on dialysis, we knew that there was hope he would get another chance, just like before. And we also learned that life can't stop for the "what ifs."

Now, please don't misunderstand my soliloquy. I am not trying to guilt anyone into anything, because honestly, the best situation for everyone is if it's the right situation for everyone. I'm just trying to be open and honest, and say the things that are on my heart...after all, this is my new shiny blog. ;)

Monday, May 11, 2009

The Small Print

I am actually getting this blog off the ground! It's like the Christmas card that comes in July (trust me, I've considered that). I've been teasing for months that I was going to start a blog to keep information all in one place and allow people to NOT have their in-boxes filled with emails from me. So... here we go!

I plan to use this blog to keep family and friends informed of our journey in finding Darren a kidney, to include information on the testing process and to generally be a place of community and support for Darren. Thinking of the internet as "community" seems odd, but with friends living in far away places and with the busyness of our everyday lives, this is a way that we can reach and inform you... and you can reach back.

Before I get into my first official and informative post, I would like to include a disclaimer.... I am a smart woman, but somehow missed the "spelling" gene (as my family and Cynthia can attest). So, there is a high probability that you will encounter words that even spell check couldn't decipher. My tip is to just sound them out, and don't judge. ;) Also, I am not a writer. I can write, but it comes with great effort and many rewrites. So I will do my best to be timely with my posts, but know that much contemplation and many drafts may hold up my good intentions.

I will spontaneously send out emails to remind you to check the blog, but you can sign up as a "follower" in the right navigation area if you'd like to keep track. Also feel free to send this blog to others you think may be interested. Keep a look out for my next postings... I'll be putting up a video soon of the Patillo clan from a fundraiser we're involved in called the Breakfast of Hope for the Northwest Kidney Center, also a general update on where things are with the testing process for living donors.

Whew, I finally get to check this off my list (now I need to start my Christmas card for 09).