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....