I wanted to write a quick update and let everyone know that Brent and Craig are both doing great.  Recovery is slow but steady and there have not been any problems.  Brent gets blood work done Mondays and Wednesdays and sees his doctor each Wednesday.  Thursday he gets an infusion of Eculizumab which is to prevent the aHUS from coming back and causing damage to the new kidney.  This is the medicine that they toyed around with giving him a year ago, but it was just FDA approved for aHUS a few weeks ago -- again another huge praise. 

We are looking forward to spending a relaxing and quiet Christmas break here with Craig's family.  We will not even have to cook because we were just informed that we won a contest for a free Christmas dinner for 10!  Brent entered a contest by writing a paragraph about someone that deserves to have a free Christmas dinner.  Unbeknownst to me, he wrote why I deserved to have a break from cooking after all we have been through this year, and we won!

 The house looks different with the dialysis machine moved out and we are very happy that dialysis is not a part of our daily ritual anymore.  Our thankfulness is just overflowing.  Craig and his family are our heroes, what a huge blessing.

Brent is home!  His creatinine is down to 1.1 today.  The kids are thrilled and it is so nice not to be down at the hospital all day.  He is tired and very happy. 

"The LORD is good, a refuge in times of trouble.  He cares for those who trust in him...."  Nahum 1:7

 

I just talked to Brent.  They are talking about letting him go as early as tomorrow or Monday.  His creatinine has been staying steady at 1.3 for the last three days, which is on the high end on normal.  Brent was retaining some fluid from surgery so they gave him some Lasix last night (a diuretic) and he took a lot of the fluid off.  He has been up and walking and feeling a lot more mobile.  He even went 12 hours without pain medicine last night.  Craig came up to the room again yesterday and did a lap around the hall with him.  Craig was discharged yesterday afternoon!  My kids are doing well and have had a good couple of days.  Every few days they are drawing antibodies, since Craig wasn't a perfect match, so make sure that Brent isn't creating new antibodies against Craig's kidney.  So far, they have been great, and not elevating at all.

Okay, here is the picture of us.  This was the first meeting of the brothers after surgery.  Continue to pray for Craig, as he has not been feeling great.  Brent has been enjoying his first taste of chocolate and ice cream in over a year, since they were not allowed before.  Our kids had a much better day today which was awesome!  Please pray for me to stop trusting in anything other than God for my well-being.  I am feeling anxious over things like lab values or urine output dropping.  There is a big picture of a dollar bill in the hallway outside of Brent's room, but the words have been changed on the bill to, "In Johns Hopkins we trust."  It hit me that I don't want to trust anything other than God.  In fact, this morning I read three words from the Bible that just reinforce this, "Trust in Him" from psalm 37.  However, sometimes is seems easier to say than to actually do it.  
Thanks for your continued support and prayers

day 2 post op

everything with the kidney is looking great.  the urine output has been good and the creatinine, which measures kidney function, is down to 1.3 which is normal!  the doctors say his kidney is doing bette than average.  brent is still hooked up to  various tubes and lines lines in different places, which bothers him more than anything.  his appetite is really good and he is starting to slowly move around.  last night craig was able to get in a wheelchair and come up for a visit, which was awesome to see him.  brent cant leave the floor because he is so immunosuppressed right now.  here is a picture of them together.

Day 1 - Post-Op

Today was a great day, still producing a lot of urine! Brent's lab numbers are excellent, creatinine is down to 2 (was 4 pre-op) and is trending toward normal.  Both brothers were able to get out of bed and go for a walk around their separate floors. They have not been allowed to see each other yet due to Brent's immunosuppression.

Brent is feeling great.  Not sure if it is the pain med or the high doses of steroids he got today, but his gratitude and praise are very raw.  He feels so thankful for the successful surgery.  He has lots of tubes and bags and meds.  The nurse said he will be on up to 20 different meds a day at first.  Please keep praying that the kidney continues to function well and does not have any rejection or problems.

Craig is moved into his room.  He gets to stay in Marberg, which is where the rich people stay.  I guess they think that if you give up an organ, you deserve to stay in the five-star hotel hospital room.  Really.  Stacy plans to stay with him tonight.  He is struggling with pain and some nausea -- please pray for his night!

On the way home from the hospital tonight I was listening to Chris Tomlin (thanks Kelly!) and heard the song Rejoice that says, "Rejoice, Rejoice Sing with the angel voices.  Rejoice, Rejoice, All heaven and earth rejoice."  And I just felt so thankful for Craig and the doctors and the successful surgery and God sustaining us this year.  And I do feel like rejoicing.

Thank you to all of you for all you have done for us!  We appreciate everything, all the ways you have cared for our family and Craig's family is unbelievable.  You all are wonderful.

Brent is out of surgery. The kidney started working right away! (he is making urine) I should be able to go back and see him in about an hour. The doctors said it was a success. Stacy has been back with Craig and he is in a lot of pain. He will be moving to his room soon.

Craig is out of surgery and it went well! The doctors are sewing the kidney into Brent now. Craig's kidney had two arteries so it might take a little extra time to attach both arteries. They told us they will attach the arteries and vein and then open up the clamps to allow the blood flow to the new kidney. It should immediately start making urine and then they will sew up the ureters to the new kidney. Brent should be done in about an hour anda half. Stacy should be able to go back with Craig in 30 minutes.

craigs surgery started at 7:45.  we got an uppdate at 8:45 that he is doing well.  they are removing his left kidney.  brents surgery started around 9:00.  stacy and i are here with ron and jan pohl, john frain, keyne and jenna.

brent here.  we are waiting for surgery to start.  they have taken craig back. i have been marked with an x where the new kidney goes.  we saw the surgeon just now and he loves my look alike beard.  he says it gives off a cool mojo.  time to go!

Brent goes into the hospital this morning for a full day of pre op procedures.  His surgery is at 8:30 tomorrow morning and should last about 4 hours.  Craig's surgery starts at 7:30 am and lasts about 3 - 4 hours.  Please pray that Brent's body accepts Craig's kidney and it starts working right away.  Craig will be in the hospital about 3 days and Brent will be in 7 - 10 days to make sure the kidney is working well and his medications are all adjusted. 

Please continue to pray for our three kids and Craig and Stacy's 2 kids.  The stress of all that is happening is definitely affecting their behavior and there are lots of concerns.  Please also pray for me, I have been fighting a virus and I just don't seem to be getting better and I feel like I need all the energy I can get right now.

I read this today, and it gave me so much peace, I want to share it with you.  It is from Jesus Calling by Sarah Young:

I am taking care of you.  Feel the warmth and security of being enveloped in My loving Presence.  Every detail of your life is under My control.  Moreover, everything fits into a pattern for good, to those who love Me and are called according to My design and purpose.

Because the world is in an abnormal, fallen condition, people tend to think that chance governs the universe.  Events may seem to occur randomly, with little or no meaning.  People who view the world this way have overlooked one basic fact: the limitations of human understanding.  What you know of the world you inhabit is only the tip of the iceberg.  Submerged beneath the surface of the visible world are mysteries too vast for you to comprehend.  If you could only see how close I am to you and how constantly I work on your behalf, you wold never again dobut that I am wonderfully caring for you.  This is why you must live by faith, not by sight; trusting in My mysterious, majestic Presence.

Craig and Stacy and their two girls (Karis, 9 and Aimee, 7) got in to Baltimore last night.  We enjoyed a fun day here with them today.  Craig is going to the hospital tomorrow for final pre-op testing.  Brent is being admitted to the hospital on Monday December 12 for plasmapheresis (to remove antibodies from his blood to prevent kidney rejection), eculizimab (an infusion to prevent the original blood disease from coming back), and dialysis.  Surgery is at 5:30am on Tuesday morning December 13.  Thank you for your continued prayers for endurance and peace!

We have great news.  We received a check today that put us at our goal for BP4TB!  We are so thankful for what has happened with just an idea Brent had one year ago while he was in the hospital.   Thousands of Africans will benefit from this tuberculosis machine, and thousands of lives will undoubtedly be saved through certain diagnosis and susequent treatment. 

We really want to thank all of you who gave and joined in our effort to raise this money.  It has been a huge encouragment to Brent.

We have had 8 dear friends go through the process of being tested for donating a kidney for Brent and no one has shown up as a better match than his brother, Craig.  The doctors feel that instead of searching longer for a better match, it would be best to get the transplant done as soon as possible.  So we have a date!  Surgery is scheduled for December 13.  Craig, his wife Stacy, and my two nieces, Karis (9) and Aimee (7) will be flying into Baltimore from Ecuador on December 3.  We are so thankful for them and their willingness to put their lives on hold for us. 

Lately, I have been thinking a lot about the importance of remembering what God has done for us and where he has brought us already. "Remember the wonders he has done, his miracles...1 Chronicles 16:12"  As I have thought back over the past year, I am really blown away by what God has done for us. 

It was almost one year ago today that Brent was first admitted for his month stay to Johns Hopkins hospital, where he was diagnosed with atypical hemolytic uremic syndrome that had caused kidney failure.  But prior to his being admitted, Brent had been stuggling daily for a few years with the symptoms of ulcerative colitis.  Since December, Brent has been completely symptom free from the colitis.  The doctors exact words were, "this defies logic," and he has been taken off all his colitis medication.  His last colonoscopy was normal.  This is amazing!  God is the one who defies logic and can heal in amazing, non expected ways! 

Brent was also taken off all his anti rejection medicine because they thought it might be interfering with the aHUS.  Unfortunately, Brent's liver, which was stable for 9 years, started to have some mild rejection.  The doctors weren't too worried, but they thought it might be a chronic condition.  However, in September, the liver function tests all came back completely to normal!  Again, the doctors were thrilled and it was unexpected.

We choose to trust that God is faithful because He has shown that He is faithful.  We thank you for your prayers for us in the coming months! 

Here is an email we sent out last week:

Dear Friends,

After much discussion, prayer, listening and watching for God’s lead in this we have decided to send out this request.  We hope you will thoughtfully consider it and pray that the best donor will be selected.

Background

As you may know I was diagnosed with kidney failure last November and in March went on full time dialysis.  Fortunately my health is very stable now on dialysis and, in general, I feel the best I have felt in years.   I am a candidate for a living donor kidney transplant and the team at Johns Hopkins has cleared me for a transplant if we can find a suitable matching donor.   

Brother Craig

We are so thankful to have had four potential donors go through the process already, however, only one emerged as a candidate for transplant.  My brother Craig matched 3 of the 6 required antibodies and if I undergo a couple de-sensitization treatments (plasma pheresis) the rejection risk of non-matching antibodies can be lessened.  In other words, it IS possible for my brother to donate, though not a perfect match.   The possibility for rejection with kidneys is much greater than other organs (including the liver –which is doing great by the way) so we (and the doctors) felt it would be important to make a final attempt to locate an even better match if there is one out there.

“Quick” Test Approved

Just today, we heard that the transplant team met and discussed my case.  The doctors, one of whom knows me very well (Dr. Kraus) lobbied the transplant panel to bring the best resources of Hopkins to even more quickly identify matching donors.  They have approved a quicker test that will be done on every potential donor.  This test will provide an answer in days before the longer (couple weeks) test will be run.  This will allow us to screen several people very quickly and hopefully get a bead on who could go to the next round. 

Basic process:

1.       Blood type should be O (they will test it also)

2.       Call the DONOR transplant coordinator Valerie Bell 410-614-9345

3.       Give a brief medical history over the phone or by email

4.       If that looks okay, they will send  4-6 empty tubes which you can have filled any Quest/LabCorp/Doctor’s office that does blood draws.

5.       Fed-Ex to Hopkins so it arrives before Friday of the week (shipping material provided)

6.       Quick test (couple days) is performed  on your blood

7.       If that looks good, full test is performed (on same the same samples)

8.       Couple weeks to full result

9.       All information is confidential from me, so you can ask any questions you want, in fact I will never know you called unless you tell me.

Surgery

A lot of people ask what is involved with the surgery.  There are a couple incisions (it is actually arthroscopic), the largest being to get the kidney out – maybe a couple inches.  Surgery lasts several hours and recovery is 1- 3 weeks typically (only a few days in the hospital).  My insurance will cover all the medical expenses.

Thanks so much. 

Brent and Nicka

Last week we had the privelege of meeting Dr Perry Jansen, who runs the medical center at Partners in Hope in Malawi, Africa.  This is the medical center that we are trying to raise funds to buy them a instrument that diagnosis tuberculosis.  Right now, all the diagnosing is done manually and is difficult especially in those people with HIV/AIDS because the disease is less symptomatic.

It was simply an amazing meeting.  Dr. Jansen was very impressive in his understanding of the medical issues, political climate and spiritual needs of those coming to the clinic.  They have many programs underway including one where they send people out to villages to do HIV testing and counseling (over 10,000 tested).  Their HIV treatment is going well about 4100 patients under treatment with only a 6% mortality rate (national average in Malawi 9%).  They are added on to their free clinic 25 beds an curently have 30 patients there (kinda like the ER at Hopkins right now - people in beds in hallways probably). 

Amazingly by God's providence Dr. Jansen has been planning and branistorming with UCLA, NIH and others ways to expand the TB program.  Our gift of the TB diagnostic instrument comes at the perfect time, because it is needed to really progress the program, in some ways it is the cornerstone piece that makes it possible.  We decided to purchase the MGIT 960 (which is a refurb unit, but functionally identical and has 3x more capacity than the one we were going to get) - it may take a few more months to procure, but well worth it and less expensive.  The money we save there can be used to purchase a lab computer to track all of the patient's test data - BD is planning on donating a piece of software ($35K value - can you believe a CD costs that much) for free.  Unbeknowst to me, Dr. Jansen and team have been looking for the past several months for such a product, and providentially I found out yesterday that BD would donate it!   God is great!

To find out more, go to http://www.bp4tb.com/

Yesterday, Brent came home from Home Depot with a gift for the kids: three beautiful big orange balloons.  While David and Charlotte were excited to have them, Laura was ecstatic.  She thought it was the most wonderful gift ever.  And she decided to go outside to run up and down the sidewalk with her new balloon, showing it off to her neighborhood friends.  As she went out the door, we cautioned her to hold on tightly to the string, it would fly away if she let it go, and she gripped the string between her little fingers.

A few minutes later, Laura came sobbing in the door, still gripping the string in her hand.  The string had come untied from the balloon and it had floated off into the sky.  She was crushed!  Gently, I said, "Daddy has something else to give you and it is worth way more than a balloon."  Laura looked up at me expectantly.  "Daddy can hold you in his arms and love on you."

He held her for more than five minutes.  And as they held each other, I though of what I had just read a few days earlier about a child getting hurt:

"The child can rebel against his hurt.  He can throw himself on the floor; he can kick the piece of furniture on which he hurt himself; he can strike out at his mother who is trying to help him.  But then he suffers even more, for his pain remains and now he has to be in it alone -- alone with his frustration.

If he loves his mother, he goes beyond his pain and throws himself into her arms.  She does not take the hurt away, but in holding her child, she bears the hurt with him.

In precisely the same way, we can choose in our pain an attitude that further separates us from the Father or that draws us closer to him.  It all depends on the outer posture of our hands and the inner posture of our hearts."

Brent wasn't making the balloon come back, but he was "bearing the hurt with her".  I had had a few days where things felt difficult, too.  One of our potential donors (one whom we expected to be a match) is not a match.  The dialysis schedule can be weary and keeps us from doing things we want to do and being with friends.  But I sensed God saying to me that he wants to bear the hurt with me, too.  That He holds me like Brent holds Laura and He wants to draw us closer to Him. 

After Laura spent her time being held by her Daddy, she responded out of love by writing him this note:

She lost her balloon, but she was able to receive her Daddy's love.  Then she was able to respond back to him in love, too.  I want to be like that.

Hopefully now that the kids are back in school, I can start doing more regular blogging again to keep everyone informed on us.  Thank you for all you who continue to pray for us and ask about how we are doing.

Brent has had to go through a few tests in the last month to clear him for the kidney transplant.  He had 24 tubes of blood drawn, a liver biopsy, a stress test and he had a colonoscopy last week,  The liver blood tests had been elevated since March and the liver biopsy showed that he has had very slight rejection of his liver.  The doctor said that he was really not too concerned.....he has had to increase his prednisone and he is getting his blood retested tomorrow to see if the blood work is back to normal.

The stress test was normal and amazingly, the colonoscopy looked great, too!  We are still praising God for healing Brent's ulcerative colitis. 

We have three friends who are currently gettiing tested to see if they are a match for donation.  We are still praying for a perfect match and we will keep you updated.  Until then, Brent is continuing to do dialysis five times a week. He usually feels very good and is still working full time.  I am thankful to have friends come in once a week to put the kids to bed and stay with Brent during dialysis so I can go out for a bit.  Charlotte has recently started praying several times a day asking for Daddy to not have to do dialysis anymore. 

Since we have the approval to get a kidney transplant at Hopkins, they have started the ball rolling rather quickly.  I was surprised to get the phone call on Tuesday asking us to come in the next day for an all day kidney transplant evaluation.

So early Wednesday morning, we trekked down to Hopkins again for the day.  We met with the social worker, dietician, surgeon, coordinator, and the nephrologist.  While they are hopeful that his liver is recovering well, they would like to have a liver biopsy performed to ensure its health.  In addition, Brent needs to have a stress test and a colonoscopy before a transplant. 

Brent's brother, Craig, has been worked up as a potential kidney donor, however, at this meeting they informed us that he is not a great match and our goal is to find a better match. 

So we are now in the process of praying for our next steps.  On the morning of the meetings I read the following verses.  I kept them with me throughout the day, reading them in between the meetings:

 Summon your power, O God, show us your strength. (Psalm 68:25)   He strengthens me with power through his Spirit in my inner being. (Ephesians 3:16)  Your strength will equal your days (Deutoronomy 33:25). 

It has been a long time since I have posted.  Brent has in general been feeling great.  He started back to work full time in early July and feels well, but our schedule is a bit exhausting.  He is doing home dialysis on Sunday, Tuesday, Wednesday, Thursday and Saturdays.  It takes about 4 hours each time.  On the days he works, Brent comes home around 6 and immediately hooks up to dialysis until bedtime. 

Brent's liver blood work has come back -- previously three different values were elevated.  One has come down significantly, and the other two are stable.  We are switching to a new gastroenterolgist, Dr. Hamilton, who is the head of liver transplantation at Hopkins.  We think he will probably do a liver biopsy to diagnose the reason for the elevated blood work.

We have not gotten anymore bloodwork back from Iowa to assess the cause of the HUS.  The HUS still is in remission and Brent' red blood counts are higher than they have been in years, which has attributed to him feeling so great.  Hopefully we will get those results back soon.

The insurance once again denied our appeal to do a transplant at Hopkins.  However, Hopkins has told us that they will accept the 70% that our insurance will pay, and the 20% that Medicare will pay and waive the rest of the fee after we pay our deductible.  This allows us to do a transplant at Hopkins (when we get to that stage) and not have to switch to new doctors and a new facility.  This is a huge praise.

We are continuing to turn to the Lord for our strength and joy each day and have found many things to be thankful for.  I read a book this summer called One Thousand Gifts by Ann Voskamp that I have loved and it has kept my perspective looking at all that God has given us.  I really recommend reading it.   As always, we are so thankful for you and your prayers and your love for our family. 

Here is a quick update to let you know what has been going on with Brent.  His aHUS has gone into remission, indicated by several different lab tests.  This is a huge praise, and a step toward healing.  Recent lab tests have shown an elevated liver function tests, so please pray that these go down on their own and isn't indicative of something more serious.  We have gotten a few of the big Iowa tests back and they look good.  We are waiting for a few more results and they will help us and the doctors know how to proceed with Brent's care. 

Brent has successfully "stuck" himself for two days in a row now for dialysis and he admits it is not nearly as bad as he thought it would be.  He will start dialyzing himself at home on Friday and start back to work next week.  Please pray for endurance as he goes back to work.

On another note, when Brent was in the hospital in the fall, he read a book called A Hole In Our Gospel.  It is a great book and I recommend it.  The book describes the plight of those in third world countries and our call as Christians to serve them.  It also describes the poor healthcare in those countries and how many are dying from preventable and treatable diseases.  He felt the desparity between the healthcare he was receiving, at one of the best hospitals in the country, in comparison to that which was discussed in the book.  From this, came to the dream for bp4tb.  Brent works at a company that makes tuberculosis testing instruments and he was reading about the millions in Africa that die because they aren't diagnosed with TB.  Please visit our website:   www.bp4tb.com that furthur explains our dream.  We are partnering with a woman from our church who has become a dear friend, Cricket Barrazato.  She has started a non-profit called God's Economy with African partners who will be receiving this TB instrument. 

Another way you can help with this dream is this Saturday from 11 - 8, Panda Express at Towson Town Center is giving 20% of every meal to God's Economy.  Thanks for all your love and support!

We met with our hematologist last week.....as I said in the previous post, we have two of the genetic tests back and they are both normal.  The best case scenario seems to be if there was a genetic mutation that was localized in the kidneys, because then if the kidneys were replaced the disease would never come back.  This test has not come back, yet, though. 

The great news we received from him was the aHUS looks like it is in remission.  The platelets are normal and the red blood counts are fairly good.  There is also a blood test called haptoglobin which indicates if the red blood cells are being broken down that was completely normal, too.

Unfortunately, Brent's liver function tests were all elevated.   They had gone up a little bit when he was in the hospital back in April, but they were even  higher this month.  The doctor is doing some more blood tests to see if he could find out why they had gone up, but obviously this is a prayer request since Brent had a liver transplant 9 years ago.  Our hematologist wanted us to see Brent's liver doctor, Dr.  Herlong (who Brent has been seeing for 16 years) but Dr. Herlong wants us to switch to another heptologist who can better manage Brent since he is so complicated. 

Please pray for Brent's liver tests to go back to normal.  He is getting another blood test next week. 

We know that in all things God works for the good of those who love him, who have been called according to his purpose (Romans 8:28)   What a tremendous claim Paul makes in this verse!  He does not say, "We know that is some things," "most things," or even "joyful" things" but "ALL things."  This promise spans from the very smallest detail of life to the most important, and from the most humbling of daily tasks to God's greatest works of grace performed during a crisis.                   Streams in the Desert

Brent has continued to feel really well with a lot more energy than a month ago.  We just got back from Williamsburg for the weekend, where we said goodbye to his brother and family who are headed back to Ecuador.    The nurses started using Brent' fistula last week and he will start to learn how to access his own fistula next week.  This involves sticking two needles the size of a small nail into the blood vessel in his arm.  Brent is feeling a bit anxious about doing this, so please pray for that.

We found out last week that 2 of the genetic mutation tests were normal.  We are awaiting the results of about five more (these are the Iowa tests).  I guess that in about 30% of the people with aHUS, all of the genetic mutation tests are normal.  We should hear the results back in the next few weeks.    We have started thinking more about the possibility of a kidney transplant in the future.  Unfortunately, our insurance has told us they will not cover a transplant at Hopkins, so we are in the middle of an appeal process.  Please pray that the insurance company would see how important it is for Brent to have his transplant in the hospital where all his healthcare team is. 

The blood pressure has been doing much better, and has been pretty well under control for the last few weeks.  Thank you for all those helping us mow our lawn, watch our kids for all the different appointments, and for all the continued encouraging notes and emails.  If you haven't already, please check out Brent's website:  http://www.bp4tb.com/.  Thanks!

We have had a great week.  They took blood work at the end of last week that showed that Brent wasn't being dialyzed enough so his daily treatments increased to about 3 1/2 hours each day.  Since then, his energy and appetite has increased, and he has had energy to do some things around the house.  He even got out and washed our whole boat in preparation for putting it in the water next weekend. 

He will be continuing the training for home dialysis for about another 3 weeks, because his fistula has to be used several times before he can access himself at home.  We got the machine for dialysis this week and we are getting all set up for his home treatments.  We were even given a lazy boy from my brother (thanks Doug and Karin!)  because he has to recline during the treatments. 

Please check our Brent's new website  http://www.bp4tb.com/   This is one way God using all things for His good.  Our good friend, Shana, is a professional video editor and did this video for this project.  Thanks Shana!

Miraculously, Brent woke up Sunday morning fever free.  Thank you all for your prayers!  He has some symptoms of an upper respiratory infection, but is not in any discomfort from it.  His blood pressure has been under better control this week and he has been feeling more energy.  He even worked on the basement some yesterday afternoon.  He is surprised by how easily he tires out from just even the little things, but I am thankful for the even the small chunks of time that he has some energy.

The training for home dialysis is going well, he can hook himself up, run the machine and unhook himself when he is finished.  He is meeting today with the surgeon to see when he can start using his fistula for dialysis.  He is very anxious to get the tube out of his chest!  Just having the tape there for weeks on end is getting irritating.    We are starting to look like a hospital here, with all the supplies we have gotten for home dialysis.  Yesterday we got a delivery and they delivered 32 boxes of supplies!  We get the machine delivered today.  We have a centrifuge and a fax machine and we are getting all set.  We will probably start doing this at home in June and it takes about 3 1/2 hours a day 5 or 6 days a week. 

We love you all, thanks for all the encouragement and prayers!

Brent developed a fever last night.  At first we were concerned that his central line might be infected, but his fever is not high enough and he doesn't feel bad enough for that to be a concern right now.  He did go to Patient First this afternoon and they think he has a virus, but put him on a Z-pack just to be sure.  He is feeling fairly bad and doesn't have much energy for anything.  We have also had a difficult time this week regulated his blood pressure medication, so we could sure use prayers for both of those concerns.  Thanks!

Here is a prayer that I came across today that really spoke to us:

Lord, as hard as it is for me to let go of the hopes and dreams I have for my life, I lay them all at Your feet.  I know that as I die to them, You will either bury them forever or resurrect them to life.  I accept Your decision and fully submit to it.  Lead me in Your path, Lord.  You never said life would be easy.  You said You would be with me.  I now take each step with the light of Your presence as my guide.

I will rejoice in the Lord, I will joy in the God of my salvation.  The Lord God is my strength; He will make my feet like deer's feet, and he will make me walk on my high hills.  Habakkuk 3:18,19

Back from Disney

We had a wonderful trip to Disneyworld.  It was a really special family time together that I will really cherish.  Brent ended up renting an electric scooter to get around, and still was pretty tired but he is recovering.  The kids had a wonderful time and it was great to spend time with our nieces and brother and sister-in-law.

Thank you so much for praying for our time....Brent commented to me, "It's so great to have tons of people praying for you while you are on vacation!"  We are blessed by you all.

For the past week, Brent has been having trouble with his dialysis catheter.  It has not been flowing well and is getting clogged easily.  So early this morning he had to go into a dialysis access center (who knew that these places actually existed?) to get his catheter removed and a new catheter placed.  He will have to use this for about another month until his fistula is ready to be used. 

We are leaving Sunday morning for Disneyworld for a week -- Brent is all set up to have dialysis in Orlando on Monday, Wednesday and Friday.  The kids are beside themselves and we are pretty excited, too.  Please pray for endurance and no medical complications while we are away.  We will definitely post some pictures when we get back.

I read this yesterday from 1 Peter 1 and it encouraged my soul:  "Praise be the the God and Father of our Lord Jesus Christ!  In his great mercy he has given us new birth into a living hope through the resurrection of Jeus Christ from the dead, and into an inheritance that can never perish, spoil or fade....In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  these have come so that your faith .. may be proved genuine and may result in praise, glory and honor when Jesus Chris is revealed."

We have  had a great week.  We were able to travel for the first time since Brent got sick in the fall -- we went to visit his parents in Williamsburg.  We also went to see my family for Easter.  Overall, Brent's energy level is increasing, but he still days that he feels very tired.

Yesterday was Brent's birthday -- we had a great celebration with a Mickey Mouse cake in anticipation for our trip to Disneyworld on Sunday.  He also started the training for at home dialysis.  He will be training for at least 4 weeks, and he learned yesterday how to set up the machine and will start learning today about the error codes on the machine. 

Everyday that he goes in for dialysis, they weigh him and then take off as much fluid as he has put on.  When he drinks a lot, they have to take off a lot of fluid, and this makes him feel tired, weak, and crampy for the rest of the day.  It is recommended that Brent only drinks 1 liter of fluid a day.  This means about 8 ounces at each meal and 1 1/2 glasses beyond that.  So Brent is going through the day feeling thirsty all the time, but unable to drink without repercussions. So when our pastor at our Good Friday service spoke on Jesus saying, "I'm thirsty" while on the cross, we listened up.  He said that Jesus was certainly physically thirsty at this point, but even more that Jesus was spiritually thirsty.  And we were reminded of Jesus' own words when he said, "Whoever drinks the water I give him will never thirst.  Indeed, the water I give him will become in him a spring of water welling up to eternal life." 

Please continue to pray for us and pray that we would thirst after Jesus.

Dialysis Training

Brent had his fistula placed on Thursday.  Dr. Cull at GBMC made a small incision in his forearm and connected the vein to the artery so the vein can develop thicker walls and tolerate the high flow rate needed for dialysis.  This takes 6 to 8 weeks to develop so until then, they will still use the tube in his chest for dialysis.  While Brent has this in place, he cannot get it wet.....so he has to be very careful with showering and no going in pools.  Dr. Cull did a great job, and we were very happy with him.  If we had waited to go through Hopkins for this, we wouldn't have surgery scheduled until late May.

Brent has felt pretty good for most of the week.  His energy level is continuing to improve.  He walked to school with us a couple times this week.  He did go into work one day to talk to his boss and they are so understanding and wonderful.  They really set his mind at ease about being out this long.  He isn't schedule now to go back to work until the end of May when he finishes his at home dialysis training.  This training will start on April 25 (Brent's birthday!) and continue on for 4 or more weeks.  During this time he learns to hook himself up to the dialysis machine, run the controls, make dialysate, follow his blood pressures, take blood samples and centrifuge them.  He also has to learn how to stick the fistula to hook himself up to the machine.  We are planning on having a whole supply cabinet for the materials. They also require a lazy boy because you have to recline while getting dialysis. 

We are trying to put weight on Brent....he has lost about 20 pounds since first being diagnosed with aHUS in the fall.   Unfortunately, we have to follow a very strict low phosphorus diet, so that means no dairy, beans, nuts, chocolate, whole grains. 

Here are some prayer requests: 
For Brent to put weight on
Increased energy
Good control of blood pressure
All details to come together for our trip to Disneyland (May 1 - May 8)  Brent is getting set up for outpatient dialysis in Orlando on Monday, Wednesday and Friday
Patience dealing with all the paperwork and insurance and social security (Brent gets to go on social securtity since he is on dialysis)

Weekend Update

We have so much to be thankful for this weekend:

Brent has progressively felt better throughout the week and has finished his first week of dialysis.

Signs of spring are popping up all over and my girls and I are excitedly pointing them out to each other as we walk to school.

I got to gather with my neighbors to pray for my family and for another neighbor who is bravely battling cancer.

The children are spending the weekend with my parents and Brent and I are getting a weekend of rest and retreat.

Brent has an appointment for surgery this Thursday to have his fistula placed.

Our family has begun to prepare ourselves for the celebration of Easter.

Brent had outpatient dialysis for the first time yesterday.  He will be having this Monday, Wednesday and Friday for the next several weeks until he starts the training for home dialysis.  Since home from the hospital, he has had days where he has felt fairly good, fairly bad, days he has felt tired and in pain and nauseated.  My natural tendency is to let my mood be affected by how he is feeling that hour.  But I was challenged by the sermon at church over the weekend on idols.  My pastor said an idol is "anything we look to for our sense of well being other than Almighty God.  When I look to how Brent is feeling for my sense of well-being, then that becomes an idol to me.

One day over the weekend, I was feeling discouraged and then read this from one of my devotionals:  "Do not yield to discouragement no matter how severely stressed or surrounded by problems you may be....  Flee every symptom of the deadly foe of discouragement as you would run from a snake.  Never be slow to turn your back on it, unless you desire to eat the dust of bitter defeat.  Search for specific promises of God, saying aloud of each one, "this promise is mine." 

So that is what we did.  After the kids were asleep, we went through different scripture and picked out promises that God has given us and we said, this promise is ours!"  There is power in believing God is who He says He is!

Brent got home from the hospital again yesterday at dinnertime.  He had three days of dialysis in a row and afterward was feeling much better.  I have people ask me what I think about Brent starting dialysis and on one hand it has been hard because I really believed that God would heal him before needing dialysis.  On the other hand, though, Brent was feeling so completely horrible before he started dialysis, I am just so thankful that there was something we could do to make him feel better. 

Our next few week are going to be really busy.  Brent will start going to an outpatient center at Greenspring for dialysis on Mondays, Wednesdays and Fridays for two weeks.  He is soon getting a fistula put in his arm for long term dialysis (right now he has a temporary tube coming out of his chest).  Starting in two weeks, Brent is going to start the training to do hemodialysis at home.  He has to go to the training center 5 days a week for 4 - 5 hours a day to be trained to give himself dialysis, draw blood, hook himself up, run the machine, etc.    This training takes about 4 weeks. 

Please continue to pray.  Brent is not feeling well this morning.  He usually feels good for a couple hours a day.  Some of his lab values are pretty out of whack, and the doctors are sure that the aHUS is still "smoldering" -- not nearly as bad as last fall, but still causing problems throughout his body.  A transplant is out of the question until it goes completely into a remission.  We just had a doctor yesterday tell us that aHUS is a very difficult disease to treat and manage.

 We thank you for your prayers  -- we know that God works miracles in the impossible situations.

Our Story

For those who are interested in following our story -- the story of our life as we trust God in the midst of Brent's challenging health issues.  Sometime when I have the time and energy, I will write down the whole story.....but that's for another day.  Today, we started dialysis and before Brent got started, he felt too bad to even have a conversation.  About all he could do was lie in bed....

He had a line put in his chest for dialysis for the short term.  He will get a fistula in the arm for long term dialysis which will be eventually at our home (not in a center).  After dialysis, he was feeling remarkably better, after getting all the toxins cleansed from his body.  I'm sure there is an analogy there somewhere, but I am too weary to come up with it tonight.

I read this today:  I am taking care of you.  Trust me at all times.  Trust me in all circumstances.  Trust me with all your heart.  when you are weary and everything seems to be going wrong, you can still utter these four words, "I trust you, Jesus."  By doing so, you release matters into My control and you fall back into the security of My everlasting arms.