
I can’t remember ever posting anything personal since starting the cyberspace communication hobby almost a year ago. I’m not counting commentary, of course. Opinion is different than personal fact so today I am breaking new ground.
Many people don’t believe in miracles. I do. I will only share one example of my experiences.
Three years ago, a wonderful, 15-year-old young lady walked across the rural street where she lives in Hot Springs, Arkansas to help her neighbors pack. Her neighbors were two, elderly ladies who had come to love the young girl and her brother.
The elderlies were moving from Arkansas to Georgia. The mother (90 years old) and daughter (65) did not want to leave their home in the woods just outside of the city limits. They had no choice, however, as the daughter’s health wasn’t great and she could use some help with her mom. Her son was to live with them in their new home in Georgia and assist when necessary.
They had loved their spot in the woods that surround Hot Springs. All of the birds knew where they could get a reliable and tasty meal. Fatter birds were to be found nowhere. The two ladies would miss the woods and the birds would miss them.
A large truck was rented and the neighbors helped fill it. The 15-year-old helped until around lunch time when she had to head back across the street because she wasn’t feeling well.
Her parents should have known then that something was wrong. The teenager had wanted to help her friends. Her Dad thought she had the flu as he watched her walk, with her Mom’s help, weakly up the sloping driveway leading to her house.
No one knew how sick the teenager was that day.
A month or so later the young lady was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring.
No one knows what causes FSGS, but it is the most prevalent acquired kidney disease leading to transplantation among pediatric patients.
The teen was so sick that her body should have shut down. Something bad should have happened. Medical tests showed numbers that were off of the charts in a direction that was not good. The doctor said it was a miracle that she was still standing.
The young lady was good at researching her own sickness and educated her parents. There are two forms of FSGS, the aggressive type and the non-aggressive type.
Everyone hoped that the non-aggressive form was the type she had. Those with FSGS eventually lose kidney function. However, FSGS can go into remission and sometimes may take many years to for someone to get to the point of dialysis or transplantation.
Unfortunately, the opposite was true for the young teenager. There were no remissions. There were lots of drugs that sometimes work. They were not able to stop the scarring. The young lady’s kidneys went into End Stage Renal Disease (ESRD) in a little over two years.
In all of her research about the illness, the now 18-year-old has only read of one case where the onset of ESRD occurred more quickly.
During the two and ½ year “battle” to stop the scarring, the doctors were audibly hopeful. They used every “weapon” available to fight the disease. During that time, the young lady sat at home and did her school work and watched The Price is Right. She relied heavily on the Bible verses that she had learned while planning a career as a Sunday school curriculum writer.
When her kidneys became unable to handle the job for which they are designed, home dialysis became a daily duty. Peritoneal dialysis is different than hemo dialysis. Peritoneal dialysis is done while sleeping. A machine pumps fluid in and out of a natural body cavity to remove waste.
God has blessed the teenager with a good mind and, with drugs in her that made thinking difficult at times; she graduated on time and with a golden cord around her neck. That was a month ago.
This week she will be having a transplant. All possible family donors were checked and a 30-year-old cousin passed each test and has gracefully offered one of his kidneys as a gift. The cousin lives in California and he is a fine young Christian.
By next Friday, I should know how the surgery went. Hannah, my daughter, and Tom, my nephew, should be out of surgery and healing. We should already have indications of how well things will go for Hannah in the near future.
Would you pray for them please?
I not only believe in miracles, I also believe in the power of prayer and I hope each one who reads this post has someone who is willing to pray for them.
I must mention another “miracle.” Over 600 people have had kidney transplants at the hospital where Hannah and Tom are having the operation. A small percentage of those transplants have involved living donors. How special is the young man from California!!!
My wife and I were going to pay for Tom’s transportation and housing costs during his stay in Arkansas. We were going to offer to pay his parents’ expenses also since they were coming for part of Tom’s stay. A request was made to a foundation that helps with such things. The foundation decided to cover Tom’s and his parents’ transportation and housing costs. It was the first such decision, by this particular foundation, in the 600 transplants done at the hospital.
We did nothing to deserve the help. We had not given money to a T.V. “evangelist” who had promised us a return if we sent in a certain monthly amount. Our church attendance is certainly not perfect. This was another gift of grace.
As one gets older, one realizes that one can’t take credit for anything. Jesus said, “Apart from me you can do nothing.” It is by grace that I have a faithful daughter. It is not because of anything I have done. It is by grace that Tom is giving Hannah the gift of a longer life. It is not because of anything she has done.
It is by grace we are saved, through faith; it is the gift of God, not of works, lest any man should boast.
As of August 22, 2008 3,818 FSGS patients were waiting for a kidney transplant. Of these 3,818 individuals, 653 had already received at least one transplant which has since failed.
Some of you may not be designated as an organ donor on your driver’s license. If not, it is something I hope that you will consider the next time you are at the tax revenue office.
Finally, I would like to thank all who have supported and prayed for Hannah in the past few years. The list is too long to even try and begin it. You know who you are. You are greatly appreciated.
May God bless you.
Chris Reimers
Comments on this article will not be posted. They will be answered to email directly.
I’ll add to this post next Friday, if not before, to communicate how the transplant went.
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***This post is continued at TRANSPLANTATION STATION REVISITED here:
http://chrisreimersblog.wordpress.com/2010/10/12/transplantation-station-revisted
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REPORT FROM DAY OF TRANSPLANTATION: (Tuesday, June 22nd, the first day of summer)
After surgery, the doctor of each patient said that things went well. Tom’s doc mentioned that the young man had a heart “as big as New York,” something we all knew already but it was nice of him to say it.
Tom’s kidney, now Hannah’s, began making urine immediately. This is a very good start. The urine does have some protein in it. We will not know for awhile if the protein is coming from the bad kidneys or if the new one is “infected.” Hannah’s doctor is cautiously optimistic. Now, as always, it is in God’s hands.
Thank you all for your prayers.
Will post again when I know more. -CR
Update 2 (Thursday, June 24th)
The day after surgery, Hannah had a bit of a set back. The new kidney was not “waking up” as fast as the doctors would like. A procedure with a name too long to mention was prescribed for the following five days. The procedure is amazing. Hannah’s blood will be removed from her body, the plasma and the blood cells will be separated, and new plasma will be returned to her body with the blood cells.
At posting, Hannah has had this procedure twice. Thankfully, the procedure appears to be working. The kidney that had started working immediately upon transplantation, and had taken a bit of a nap, has now started to waken.
We are truly thankful.
Update 3 (Friday, June 25th)
What a difference a day makes. Tom was released from the hospital at 6:00 this afternoon. He will stay in town to be checked by the doctor for the next several days.
Tom’s kidney is wide awake. It is doing an outstanding job in Hannah. Her numbers are very good; much better than previously recorded. We are truly thankful. We are thankful for the outcome to this point and for the many prayers that were put before our great God. Hannah will have two more blood treatments. At this point, one doctor is saying that she will be released after that.
Update 4 (Saturday, June 26th)
The new kidney (named Ned by someone close to the situation) is working very well. PRAISE THE LORD!!! The latest numbers are as good as thought possible.
Hannah is still in a good deal of pain as she is very anemic. She is very pale as she is way past having a transfusion. Her doctor is trying to avoid the transfusion for several reasons.
Hannah was given a shot that encourages blood creation a few days ago. She has had the same shot – and gave it to herself many times – during her illness. It usually takes a few days to kick in.
Update 5 (June 27th, Sunday)
Hannah’s new kidney continues to do well. Tom slept all day yesterday and is healing quickly.
Hannah’s doc (who took leave the day after the surgery) will be back tomorrow. He will decide if she will get a transfusion. Her anemia is not going away. She had her fifth plasma treatment today. We pray it is the last.
We continue to be thankful that things have gone so well.
Update 6 (Monday, June 28th)
It is 9:00 P.M. Hannah is finishing the transfusion the doctor decided upon. She is already feeling better.
Things are now day to day. Her “numbers” will be checked daily and the doctor will make decisions accordingly.
We are very thankful for Hannah’s progress.
Tom is continuing to heal. He’s not allowed to drive yet, but he is doing well.
We are very thankful for Tom and that he is healing so quickly.
Update 7 (June 30th, Wednesday AM)
Hannah’s doctor just left. He said that there is bleeding going on inside somewhere around the surgery site. He has ordered a third transfusion today. That means at least one more day in the hospital for Hannah.
The doctor said that they might have to do another short surgery to try and find where the bleeding is. He thinks the anemia is being caused by the internal bleeding.
The kidney is doing very well. We are so thankful.
Tom is doing great. He is going to do some goofing around with relatives today.
Update 8 (July 1, 2010, Thursday A.M.)
We continue to be surprised. Yesterday, Hannah’s doctor said that if her blood count elevated the same as it had the previous two days, there would need to be an exploratory surgery to look for a source of bleeding.
Later in the day, before the transfusion that the doctor ordered, Hannah’s blood count had increased over the amount the doctor wanted it at for surgery to be taken off of the table. It appears, although the doctor hasn’t seen the numbers yet, that Hannah will not have to have another surgery.
I also found out recently that the doctors thought that Hannah’s new kidney had been “infected” by fsgs when they saw the numbers the day after the surgery. They have been very surprised and pleased that their thoughts were wrong.
We are very thankful for the healing that is going on in Hannah. We are thankful for everyone’s prayers.
Tom is also doing great. He is well enough to play laser tag. He, his nephew, and his uncle took a break from it all and put on the vests with the blinking lights. Tom had to call it quits after some games, but his stamina is returning. Before you know it, he’ll be ready for that marathon run that he’s looking forward to. Tom’s last medical check in Arkansas is scheduled for today.
Thank you for your prayers,
Chris
Update 9 (Friday, July 2nd, 7 AM)
Tom should be on the plane and heading for California as I write this. It was wonderful spending time with a nephew that I hadn’t seen in 15 years. The first thing I said when I saw him was, “You are tall.” I used to tower over him and now it’s the opposite. Tom has been an example of God’s love. It is unconditional.
Hannah’s story yesterday…surgery…no surgery…surgery…no surgery. She finally was able to eat after her surgeon decided to put surgery off for now. The anemia is still there but it’s a wait and see thing.
We are so thankful that her new kidney is doing a great job.
Update 10 (Friday, July 2nd, noon)
Just found out that Hannah will probably be coming home today. The last test results were great, and it looks like she will spend the night in her own bed. It will be the first night in months that she hasn’t been hooked up to a machine of some kind.
I am so thankful. I can not express how much I appreciate all who prayed for my daughter. Our prayers have been answered with a “yes.”
Chris
Update 11 (July 2, Friday, 3:45 P.M.)
Hannah walked through the door at 2:30 this afternoon. The man of the house had just woken from a nap and was madly cleaning things up when in walked the girl with the new kidney along with her mom. So ends the longest 10 days that I’ve had in a awhile.
I just realized that I should be posting these with the latest at the top. I’m too lazy to change it now. I will continue to post items for those who are looking for stories about people with fsgs. I have tagged this post “fsgs.” In the quarter of a million wordpress blogs, there are only a few posts with personal stories about the illness. Now there will be one more for parents and patients to read. One of my frustrations during Hannah’s illness was the lack of personal stories about fsgs on the internet. It was a very difficult illness to research. There is not enough information out there. The few personal stories that I did find were helpful. The illness is a strange one and the more information in cyberspace for patients and parents the better. This is why I will continue to post Hannah’s story. With this illness, the story never ends. Many with happier endings never get posted anywhere so there is a unbalanced perception of the illness.
We are very thankful to have our wonderful daughter home. We are thankful for all of the prayers that were laid at the foot of God’s throne in her behalf. We couldn’t have asked for a better outcome to this point. We are very blessed people.
We received word the Tom arrived safely at his destination in California. Kim and I spent a good deal of time with Tom when he was a kid. His parents allowed us to spend time with Tom and Nicki (Tom’s older sis) when they went on vacations. It was great to see him again and reconnect. We will keep a closer eye on his life from this point forward.
Chris Reimers
Update 12 (July 4th, Sunday)
Hannah’s sole trip out thus far was the one home from the hospital. During the past year, trips out have been few. Church will soon be a good option again. She continues to heal and is hoping to help with Vacation Bible School. The large bruise on her side where the internal bleeding occurred is looking better. She is able to eat things that she hasn’t tasted for over a year.
It was a blessing to be back with some of the saints who prayed for my daughter again. Those at the church I attend have been concerned as have many others. I can never adequately thank all who prayed .
Independence Day in 2010 is a good one for all who love Hannah.
Here’s Hannah’s latest journal entry:
Sunday, July 4, 2010 11:14 AM, CDT
HAPPY 4th of July!
Happy Independance Day!
So here’s an update on me… I wouldn’t say I’m doing “great” just yet, although I know it’s coming! There are so fewer downsides to transplantation than I expected- my only ones so far are
the stupid K-Phos (but prayers and our plan, which is basically to eat tons of no-sodium lean meat, no-sodium cheese, and milk, should eliminate the K-Phos soon; the K-Phos diet isn’t quite as hard as I thought it would be either)
my anemia is still terrible, although much better than it was
and the pain of the bruises, which should go away 2 weeks at the most- more likely five to seven days
In other words, every downside is temporary. The anti-rejection meds are very powerful right now, but the doses I’m on (which are much higher than they will be in a year or more) are already so much lower than I expected! Prednisone is also tasteless in the capsules- the taste was half my issue with prednisone, so it doesn’t bother me much right now. At these “mega” doses, my only side effects are…
Stomach issues, but I had those on dialysis anyway (CellCept)
Extreme moodiness- happy one minute, crying the next (Pred)
Acne- but it’s not on my face, so I’m happy (Pred)
Very slight rounded face- but you can hardly tell, and it will decrease from here; it’s much much less than I thought it would be (Pred)
Hair loss- I needed to get it thinned anyway!!! (Prograf)
Shaking- but I had that on cyclosporine and this is much much less (Prograf)
I haven’t had weight gain (I’ve actually lost tons of water weight already!), my blood sugar is great, I’m actually eating again, even though I’m on more pills for now they’ll decrease and I’m actually on less meds, I’m extremely anemic but even so I have more energy than I did on dialysis, my protein urine is NEGATIVE, my creatinine is great, I actually feel more mentally alert, my schedule is less of a hassle than on dialysis, I can’t even taste prednisone, the meds aren’t bothering me…. I could go on and on and on with the positives! Thank you Tom, thank you Baptist Health, thank you everyone who reads this, thank you to my family and friends who’ve supported me so far, and especially thank you God! Even though I’ve got a LONG way to go and there’s sure to be bumps in the road, I feel like it’s my Independance Day!
Well, that’s all for now! Have a wonderful holdiay.
PS- For anyone who’s written me a personal email, thank you! Just got into my email for the first time in two weeks yesterday… I’ll try to respond soon
Update 13 (Wednesday, July 7th)
Again, I will let Hannah’s posts today, give you the update.
Wednesday, July 7, 2010 12:17 PM, CDT
Another “Bump in the Road”- Please Pray for Ned and Me
Yesterday I found out the results of my first lab- it showed my creatinine (blood poisons) had gone up from 0.4 to 0.7- 0.7 is still within the normal range, but a 0.3 rise is something they get a little concerned about.
This morning my post-transplant nurse April called and said they were worried about possible acute rejection- acute rejection happens to almost everyone who has a transplant, and it is treatable, but it is important to check it out right away. My mom and I are now back in Little Rock on Baptist’s floor 4B (the short stay floor- a little longer than outpatient, but I should be out of here in 1-3 days at the most). They did lab already (don’t know results yet) and will have an ultrasound and biopsy this afternoon.
For the biopsy, I will be slightly sedated but not totally asleep like during a surgery. They will use a machine to map Ned out before taking a needle and quickly getting a tiny sample of him to see if my body is trying to reject him. (Poor Ned, he’s just trying to do his job). This is not as serious or as risky as my biopsy back in September 2007, since Ned is overall healthy. There is even a chance it isn’t rejection, possibly just dehydration or something like that. If it is rejection, we should be able to save Ned fairly easily- like I said, the chance of having acute rejection is 99%, and it is treated with IV anti-rejection meds.
I don’t think it’s a relapse of FSGS because just yesterday my Albumistix dipstick was negative for protein again. However, that is a possibility too.
Please pray I can keep Ned, that it isn’t rejection or FSGS, and that it is, that it gets treated quickly and Ned does fine.
Wednesday, July 7, 2010 2:04 PM, CDT
Good News, Bad News- 2nd Update
If you didn’t see today’s earlier update, please read it first- thank you!
Well, good news, bad news- the good news is my protein is still negative and Ned’s function is almost back to what it was Friday. The bad news is even so, we’re still going to do a biopsy “just in case”.
The Ultrasound is over- it showed some fluid around the kidney; I’m hoping this doesn’t mean additional surgery or anything!
I can’t eat until the biopsy is over (or drink anything- total NPO, nothing by mouth). But today for whatever reason, I’m not hungry like I’ve been, so it’s no big deal (yet!) We don’t have a time for the biopsy, but April (my nurse) guesses around 4:00 PM Arkansas time. My biggest concern is that they’ll want to do surgery to fix the fluid surrounding Ned; it isn’t hurting him, but it’s blood, so they may want to fix it. I’m not sure.
If all goes well (biopsy shows nothing, surgery not needed for fluid, no other bumps in the road) I should be released tomorrow afternoon.
Thank you for your prayers- oh, and another good thing, my phosphorus is coming up to normal! This means I will be able to decrease my K-Phos supplement and increase my sodium intake (when I can finally eat again, that is!)
Wednesday, July 7, 2010 3:35 PM, CDT
Update #3 (for today…If you haven’t visited yet today, please read updates 1 and 2 first! Thank you!)
So I’m still waiting for the biopsy- still NPO (but it isn’t bothering me; no food or any liquids is easy today; must be a God thing! I want to eat, but the urge isn’t unbearable like it has been in the past, especially considering it’s been about 19 hours.)
The lady from radiology (where they do the biopsies) came to see me about three hours ago. I guess they have one big case (which was in progress back when she talked to me) and two smaller cases before my turn, which is considered a small case. Wow! I’m a small case for once!
I actually feel really good today (ironically, as April said!) Ned is doing well again, as far as the lab results show. The biopsy will tell us more. Biopsy results will come tomorrow afternoon (they take a while to read).
I’ll update again later or if anything changes.
Wednesday, July 7, 2010 7:46 PM, CDT
Update #4 (for today)- Please Read Today’s Other Updates First If You Haven’t Already, Thank You!
The biopsy went well; no more NPO (which means I can eat and drink again). I haven’t heard any concerns about the fluid around the kidney yet- as far as I know, they figure that’s just left over from the previous bleeding and should go away soon.
Biopsies are fun- this one was a lot better than the last one. I wasn’t sedated for the first 2/3rds of it- a lot of it is just mapping, which is painless and actually really interesting. You just lie on your back as the table moves back and forth, in and out of a big “donut” looking machine. They sedated me for the last part, which was when they used the needle to get a little part of Ned. I felt a little pressure, like someone pushing hard on your stomach with their thumb, but it was totally pain free. I have to not get out of bed until 10:00 PM tonight, but that’s no big deal. The other good news is that, since I’m not being zapped with IV meds right now, mom can stay with me in the room- they have a recliner thing. The place where they poked Ned hurts now, but they are going to bring me pain medicine. It isn’t too bad anyway.
If there is no rejection, or any other concerns, I’ll probably get to go home late tomorrow afternoon (we won’t get the results until then). If there is rejection there are plans…
1. Mild rejection gets “pulse steriods” for a week- meaning at home (by my handy dandy capsules that make it tasteless!) I’ll take 600 mg prednisone the first day, 300 the second, 150 the third, 75 the fourth, then 50, 40, 30, until I get back down to 25 mg, my current dose.
2. Moderate rejection would get an IV infusion of a heavy duty immunosuppresent (one besides those I already take at home). I’d probably be in the hospital for a few days, but this is unlikely.
3. Major rejection would get both treatments- I think this is very, very unlikely at this point.
I’m not worried, and I’m convinced that 0.7 was either a mistake or just because of dehydration. Another reason to trust God!
Good night and thank you for following my busy day!
Update #14 (July 9th, Friday A.M.)
I just got off of the phone with Kim (Hannah’s Mom and my wife). The results of the biopsy are back. The kidney is 100% normal. Tom’s kidney, that he named “Ned” when he gave “him” to Hannah, has no signs of fsgs and there are no signs of rejection. Dr. David says that this is the most mysterious case that he has ever seen. There is no explanation as to why “Ned” began working again. There are possible reasons that “he” stopped. Their was a good amount of fluid around the new kidney that has now been drained. It is possible that it caused the problem.
I asked Kim how old Dr. David was and she guessed around 50 so he has probably seen more than a few kidney patients.
Why should today be any different?
Since the day that Hannah was diagnosed, her case has been different. As I’ve shared before, she should have had major problems before her diagnosis. Hannah’s Hot Springs Doctor, John Wayne, has been surprised over and over.
We are indeed thankful.
Grant and I were in Little Rock last night to visit Hannah. Things were still up in the air at that time, but Hannah had urinated a few times – a very good sign.
Kim says that they may be home tonight.
Thank for your prayers.
Chris
Here is the post that Hannah wrote after we left:
Thursday, July 8, 2010 8:19 PM, CDT
Sorry It’s Been So Long… I’ve Been Sick
What a day… a scary day! This morning, Ned continued not to urinate, even with a catheter, meaning Ned was not working. April (my nurse) was concerned; my pain was going up and I was losing blood again. I honestly thought at the time the end of Ned had come.
The wonderful doctors and nurses were not giving up, though (and neither was Jesus!) They took out the painful catheter (this time it was a lot more than annoying; it was very painful because it was sitting on a nerve). The draining of the fluid procedure pulled tons of redish-clearish odd fluid out of my sight (while I was sedated- some people don’t fall totally asleep, but I did by God’s grace). They dosed me on 625 mg of IV prednisone- a very high dose, which accounts for the drama in this paragraph, even though I admit it was pretty dramatic- in attempt to help little Ned create urine. My mom and I prayed and prayed. I knew God had the power to heal Ned, but I felt His will was to let Ned go.
While we still are waiting for the results of my latest blood test and biopsy, so we don’t really know what’s going on, I have good news- Ned has created 400 ml of urine in the last two hours. This is a lot- when I first went at about 5:00 tonight, mom and I immediately began praising God, and for the first time today, I strongly feel Jesus will save Ned, and that Ned will last me to the rapture. I don’t know these things for sure, and who knows? He could get “sleepy” again tonight, but at least I know Ned is still alive, and I’m very thankful.
My Bible verse of the day (although I forget where it comes from- anyone know? Philipians sounds right to me?) was what came to mind when I was in a lot of pain- “I can do all things through Christ who strenghtens me.”
It gave me an amazing insight. As I thought about that verse, I realized something.
I can pray, I can follow my doctor’s orders perfectly (which I have been doing), and I can ask others to pray, but other than that, I am helpless. I can do nothing. There is nothing I can do. No matter what I do, what I say, what I think, I can’t save Ned.
BUT…I can do all things through Christ. All things. Without Jesus, I am nothing. But because of God’s grace through Christ alone, because of what He did two thousand years ago on the cross, and because the Holy Spirit is living in me, I can do all things through Christ who gives me strength.
As of right now, my pain is gone (yeah Jesus and yeah pain pills!) I am peeing enough to know Ned is at least surviving, and I pray he thrives soon. I’m not NPO (meaning I can eat and drink) and although I’m not hungry, I’m drinking a lot.
My biggest concerns are my blood sugar (it’s up a little with the prednisone- I’m praying it will go down) and that Ned will continue to struggle. Other than that, I’m doing much better than this morning.
Tomorrow will tell a lot. I will also have a simple procedure that will use an X-Ray to watch some water go through my system (luckily, there is no sedation, so no NPO- I can eat!). Please pray for excellent (miraculous) lab results. Nothing is impossible with Jesus.
Have a good night. Thank you for reading and for your prayers,
Hannah 
And Ned- my family says hi
PS- It wasn’t a totally bad day- I’ve had some young handsome male nurses today who were all very sympathetic
and Hannah’s first post today…
Friday, July 9, 2010 8:48 AM, CDT
Thank You for the Prayers- I Can Do Nothing, Jesus Can Do Anything!
I peed a lot last night- not quite enough yet, but Ned is waking up again.
I had that special procedure this morning to watch water go through the kidney- the bladder grew and grew! One of my incredible doctors, Dr. David (Dr. Young is sick or something- you CAN’T be sick around kidney patients!) came into the room and shook his head. “You are the biggest medical mystery I’ve seen!” he said.
My biopsy was CLEAR- no FSGS, my rejection. Dr. David said he doesn’t know why the kidney stopped, or why it started again. He took me off the pulse IV steroids, meaning my prednisone dose will go back to 25 mg (SO much better than the 625 I was on yesterday). My blood sugar was so high yesterday they gave me insulin and I was crazy on prednisone, but both of those will go away today or tomorrow at the latest since the prednisone dose is back to normal.
The only solution (besides Christ, of course!) was that the fluid around the kidney was causing it to stop- once drained, it got a little better… but this is still little of an explanation. They left in the “grenade” (a very comfortable port- unlike all the other ports I’ve had, you forget it’s there). The “grenade” has a tube line connected to where the fluid build-up is; the “grenade” itself collects the extra fluid. When it is full, we drain it out.
We don’t have my blood tests back yet- IF they are good, we could go home later this afternoon (EARLY!) If there are any issues at all, I’ll stay for observation tonight and most likely be dismissed tomorrow.
Thank you so much for your prayers… I can do all things through Christ who strengthens me. Praise God!
Update #15 (Sunday, July 11th, PM)
Hannah is home. Take 2. Hallelujah!!! Everything appears to be working.
Update #16 (Thursday, July 15th)
As a parent, the following posts are as important as the preceding ones. This is true, not only because I love my daughter, but because another parent who has just discovered their young one has been diagnosed with fsgs may stumble upon this story. I wish there had been more stories like this out there for me. The story is tagged “fsgs,” so it is bound to happen sooner or later. Fsgs is a disease that one can live with, but it is never over.
Here is Hannah’s latest post:
Thursday, July 15, 2010 2:13 PM, CDT
Ned’s Great, Magnesium Isn’t!
I had a very good day- especially considering my magnesium levels are almost dangerously low! We left this morning at 7:30 for lab; headed to Wal-Mart, Hobby Lobby, and Kroger (and I didn’t use a wheelchair AT ALL!); and went to mom’s classroom at CMS briefly so she could work on her room. I was out from about 7:30 to 1:00 and still feel good!
April (my post-transplant nurse) called to let me know Ned is doing good (creatinine 1.0- higher than originally, but April and Dr. Young aren’t worried about it; it’s in the normal range and as long as it drops or remains stable everything’s okay). However, I’m still very anemic (the two numbers are 23 and 7.2… normal are 40 and 12.0); again, we’re going to let this be because my blood is slowly building. My magnesium is almost to the point of dangerous; they are going to put me on an OTC supplement. Other than that, I’m doing good- great for being extremely anemic and low on magnesium!
Thank you for your prayers… God is so good! I see Dr. Young on Monday (Little Rock) which will be my next blood test! I may or may not update until then. I’ll just wait and see!
Have a great day… Ned and I are!
UPDATE #17 (August 18th, 2010)
It’s been a while since I’ve added anything here. Another transplant recipient (Kidneygirl) with fsgs in remission contacted me to ask about Hannah today. Kidneygirl was one of the few personal sources of information I had before Hannah had her transplant. Kidneygirl’s had her transplant about 6 months before Hannah had hers. She, like Hannah, has had to deal with certain complications from the illness. Please pray for Kidneygirl. If you would like to see her blog, go to:
http://kidneygirl.wordpress.com
I will continue to add updates for patients and parents so that they are able to see one person’s experience with fsgs. The latest news is that Hannah has steroid induced diabetes. It is controllable and we are very thankful that her new kidney continues to work well. -CR
Here are three of Hannah’s latest posts:
Monday, August 9, 2010 4:52 PM, CDT
Clinic Day!
Mom and I just got home from our long Little Rock day. At the diabetes office, Dr. Rapp adjusted my insulin and diabetes medicine- we are hoping this will keep me from the nighttime spikes. I’m still doing the “sliding scale” with insulin (when you check your blood sugar at certain times- if it is very high, you give yourself insulin; if it is normal or mildly high, you don’t do anything). However, I’m also taking insulin once a day at lunch now, even if my blood sugar is normal.
My results at Dr. Young were good- creatinine stable at 0.9. Dr. Young, however, is a little bit concerned about me at 0.9- even though it is normal, he says that “my normal” (everyone’s normal is different) was 0.4-0.5 right after transplant. We’re not doing anything about it at the time, but he says if it rises again, we will have to do another biospy to rule out an acute rejection episode. In other words, it’s probably fine, and if it stays at or below 0.9 it’s fine, but if it goes to 1.0 we have to do a biospy. (In the joking words of Dr. Young, he’ll come running at me with a biopsy needle! Ha ha ha, he’s funny.) Please pray it drops a little from 0.9 at next Monday’s lab! That would be great!
Now, on the more positive side, my visit with Dr. Young did go well, besides the concern about my creatinine. He dropped my prednisone to 15 mg (which could help the diabetes issue). He also lowered my magnesium supplement and even lowered another anti-rejection medicine Prograf (my Prograf level is a little high in my blood- if it goes too high it can poison the kidney and cause creatinine to go up). I think the best news is no matter why the creatinine is a little higher than we’d like for me (it’s still normal, just higher than my original post-transplant days) we know when reason it’s NOT higher- there is still no recurrence of FSGS that we know of at this time. In Dr. Young’s words it’s totally “at bay” for now. Ned remains NED as far as FSGS… praise God!
Friday, August 13, 2010 8:01 AM, CDT
It’s Friday!
I’m still doing well. My blood pressure has been a little crazy… it’s either really high or a little low when I check it! This isn’t something we worry about though- it’s just kind of strange.
My blood sugar has been a little better between the lower dose of prednisone and the medicine/insulin changes Dr. Rapp made. It still hits the 200′s at night, but it’s better than it was.
The best and worst thing is dropping from 20 to 15 mg of prednisone. I’m so glad to get on less of it, but tapering is really hard on your body. This is when the mood swings are at their worst- last night I had one of those can’t-think-to-save-my-life-but-so-incredibly-happy-and-laughing-at-everything moments that lasted about 20 minutes. The next hour I was depressingly sad about everything, even good things. Well, that’d be a prednisone taper for you… especially a 1/4 decrease in dosage! It should get better in a few days.
Sunday, August 15, 2010 11:07 AM, CDT
Eve, WHY did you have to sin?
First of all, let me say that overall we’ve had a good week. Mom’s back to school (teacher inservices- preschool starts next week). I start my one online college course (pyscology- the only thing still opened when we registered! Whether I go the nursing route or the teaching route, physcology is required for either) on Wednesday this week. Grant starts school this Thursday. Dad continues to work at the family crisis center.
So, I’ve been feeling pretty good. My blood test is tomorrow; please pray everything is great, including my two biggest concerns of the week- creatinine and anemia. If you don’t really want to read about WHY I’m anemic (guys, I’m sure you really don’t want to know) you probably don’t want to read below the line.
If you chose to stop here, thanks for visiting! Have a great day!
And please pray my creatinine is 0.9 or lower (I’m hoping lower!)- if it’s 1.0 or more I’ll have to have a biopsy, most likely this week, which would not be great with school starting!
Have a great day!
Update #18 (September 9th, 2010)
It’s one of those “no news is good news” stories. Hannah is doing well. She’ll be going to Little Rock to see her doc next Monday. She is taking one college course on-line. She’s still not real physically active yet. We are so thankful that the kidney is still working very well.
Chris

Hannah and Tom at Arkansas Baptist Hospital after the Transplant
THE GREATEST FEAR
June 27, 2010I learned the answer from David, who was giving a lesson on “speaking without notes” at a public speaking conference yesterday in Little Rock.
You might think that death is the greatest fear. That was the first thing that came to the minds of many in the room of 25 or so.
According to David’s research, people fear public speaking more than they fear death. This is probably true since humans are creatures that don’t plan well and most figure that public speaking is on the agenda sooner than death.
After sharing his research, David shared knowledge he had about being a better public speaker.
Death, by the way, was the second most feared item on David’s short list.
The speech club that I belong to makes a serious attempt not to enter into religious and political topics that may be offensive. This is so that the main goal may be achieved. The goal? It is to provide a mutually supportive and positive learning environment in which every individual has the opportunity to develop oral communication and leadership skills, which in turn foster self-confidence and personal growth.
If you wish to stay away from such topics, attend a speech club like mine near you. This blog is a different “animal.” David was making a point. I would like to make one here since this isn’t the speech club.
No one needs to fear death just like no one needs to fear public speaking.
Everyone has heard this famous passage at a funeral:
4 “Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;” (Psalm 23:4)
I know people who used to be petrified before an audience of any kind. They are now able to speak in front of a group off of the cuff. “How did that happen?” you ask. Look at the environment the club attempts to create as noted above and the question becomes, “How could comfort in front of a group of folks with that attitude not happen?”
It is the same with death. The “environment” created by the Word of God instills a trust that is greater than death. The Word of God is more powerful than death.
As far as I know, only two men have ever escaped death: Enoch and Elijah. Many think they will be the two witnesses mentioned in the book of Revelation and, therefore, they will eventually die. I will not argue the point. But, I will quarrel with those who think they might escape death.
“Everyone knows they will eventually die,” many would articulate. If this is so true, then why are people so unprepared? They are as unprepared for death these days as they are to give a public speech.
It is the same old lie that keeps folks unprepared.
1Now the serpent was more crafty than any beast of the field which the LORD God had made. And he said to the woman, “Indeed, has God said, ‘You shall not eat from any tree of the garden’?”
2The woman said to the serpent, “From the fruit of the trees of the garden we may eat;
3but from the fruit of the tree which is in the middle of the garden, God has said, ‘You shall not eat from it or touch it, or you will die.’”
4The serpent said to the woman, “You surely will not die!
5“For God knows that in the day you eat from it your eyes will be opened, and you will be like God, knowing good and evil.”
6When the woman saw that the tree was good for food, and that it was a delight to the eyes, and that the tree was desirable to make one wise, she took from its fruit and ate; and she gave also to her husband with her, and he ate. (Genesis 3)
Today there are many who promise that you can be God. You can heal yourself. You can make yourself rich. You can create wonderful relationships for yourself. You can visualize that you will be great at something and it will happen. You can verbalize something that you want and “poof,” it will appear. You can make God anything you want, because you are God. You can add the salt and ignore the pepper. You can wish for jewels, and you will find a shiny gem, a maybe more, when you pull down the covers at night. And all of these promises can be claimed, “In the name of Jesus.”
I know that there are great promises in the Bible, but the only place I can find a promise that we can be God is in Genesis 3. The promise is made by the serpent.
The same promise that was made by the serpent is being made in too many places today. It is everywhere.
I am not God and you are not God. However, we can be prepared for death.
After the major mess up in the garden, a plan was formulated by THE Almighty God. Man, no matter how hard he tries, cannot remove sin. The only way to remove our sin was for God to take it upon Himself.
26For it was fitting for us to have such a high priest, holy, innocent, undefiled, separated from sinners and exalted above the heavens;
27who does not need daily, like those high priests, to offer up sacrifices, first for His own sins and then for the sins of the people, because this He did once for all when He offered up Himself. (Hebrews 7)
The ultimate offense is to think we can be God. We should, however, ask God if we can be more like Him.
22But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness,
23gentleness, self-control; against such things there is no law.
(Galatians 5)
I liked David (now President of a speech club) very soon after meeting him. He was like God in that he was not afraid to share his best. After spending some time with him, he asked me to accompany him and his date (a wonderful young lady named Ann) to dinner. We had a meal to remember.
Are you afraid of public speaking or of death? If you are, you should find a source to deal with your problem. Email me if you would like to know where you can find a speech club like the one to which I belong. My email address can be found under “About” at the top of this blog. Being afraid of death is a much higher problem. God’s Word, the Bible, is the only antidote for the fear of death.
Chris Reimers