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 food...my 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).
Friday, December 4, 2009
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!
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....
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.
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.
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.
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.
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