Exciting News!

Well, it is time to fire up the blog once again! I'm hopeful that this round of updates will all be good news. So, let's start with a super duper awesome announcement....

Esther is having a kidney transplant on Wednesday, September 16th! Her wonderful, kind, generous, lovely, talented, funny donor is Katherine Blume! She is Tom's cousin and has come all the way from California for the big event. She brought along her 5-year old daughter, Nicole. We have all enjoyed reconnecting with Katherine and look forward to doing the same with other long lost family members who will be arriving throughout the week to support Katherine. The second cousins (Nicole and my children) have been having a great time together swimming in the hotel pool and doing some sightseeing.

Before Katherine and Esther's big day on Wednesday, Esther has to have a double nephrectomy on Monday (tomorrow!) to remove both of her native kidneys. On Tuesday, Esther will have dialysis, and on Wednesday, the surgeons will reopen the same incision to do the transplant. Two surgeries in three days is a lot, but this routine was used successfully when Katie had her transplant, so they are going to try it again on Esther.

There is so much more I could say...so much has happened in the last few months...but it is getting late and we have to be at the hospital tomorrow at 6 a.m. Please keep both Katherine and Esther in your prayers this week. It will be a hard week for both of them.

Here's a picture of Katherine and Esther after a tour at the Ben and Jerry's factory in Waterbury.



Katherine, you are a hero in every sense of the word! I struggle to find words adequate to express my deep gratitude for your gift. Please know that we recognize the incredible sacrifice that you are making on Esther's behalf and we are so, so grateful! A thousand thank you's!!

Still Waiting

As of today, Samuel has accumulated 600 days on the waiting list. There have been no offers of a kidney from the organ bank. It seems Samuel has developed a significant number of antibodies which makes him incompatible with a large percentage of the population. We have recently had three wonderful people step forward to donate. Sadly, because of these antibodies that Samuel has developed, he can't receive a kidney from any of the three. The transplant team is beginning to explore other options.

A Party and a Procedure ...or... A Festivity and a Fistulogram

Wednesday will be a particularly busy day at the hospital for us. Samuel will be "celebrating" his 300th dialysis treatment. He spent all afternoon baking cookies (all by himself!) to bring for tomorrow's party. It will be a time to recognize and thank the team of dialysis nurses who has taken such good care of Samuel for these past 27 months.

A couple months ago as we were driving to dialysis, Samuel said to me, "Some days I wish that I didn't have kidney disease [long thoughtful pause], but then I think about all the nice people that I would never have met." Samuel proceeded to list many of the doctors, nurses, and hospital staff whom he has come to know and enjoy.

After all the terrible and difficult things that Samuel has been through these last 2 years...after all the pain that he has endured...after all the disappointments...after all the days, weeks, and months that he has spent in the hospital...for him to have that as his focus is pretty incredible! I am so thankful for the young man that the Lord is shaping and the amazing attitude that He has given Samuel.

Today is Samuel's 550th day on the waiting list. We are still waiting, but not so patiently. Every time the phone rings, I wonder if it is "the call". Most mornings, Samuel optimistically announces, "Today I am getting my transplant!" One of these days he will be right!

Wednesday will also be a busy day for Esther. As you may know, she started dialysis back on June 24th. It was not a very auspicious beginning. After two dialysis sessions of multiple needle sticks trying to get her hooked up and her fistula working properly, Esther had had a total of 50 minutes of dialysis and was black and blue from her wrist to her elbow. They started talking about putting in an ash split catheter (like Samuel had for so long). As far as I was concerned, things were moving too quickly and in the wrong direction!

I petitioned for a time out and we shipped Esther off to the Jersey shore with some dear friends for a week of R and R. She came back home this past weekend and we are ready to try again. The consensus is now that she has a narrowing (called a stenosis) in her fistula that is causing all the trouble. Tomorrow, while Samuel is partying, Esther will be having a surgical procedure called a fistulogram. I'm guessing they will use angioplasty to try to expand the stenosis and make the fistula useable. If they are successful, a groggy Esther will be wheeled directly up to Shep 4 for dialysis. If they are not successful, I fear we will have to resort to the dreaded catheter. Based on Esther's labs from Monday, we no longer have the luxury of postponing treatment.

I'd be grateful for your prayers tomorrow. As I've probably shared before, one of my least favorite things in all the world is having multiple family members in the hospital at the same time. I can manage okay when everyone is in the same place, but when they start getting spread around the hospital, I have a harder time being calm and serene. On the bright side, I'll likely get my exercise tomorrow running back and forth between the 1st floor and the 4th floor. I sure don't want to miss the party!


Lydia and Esther on Long Beach Island in New Jersey. Thank you, Brian, Katherine, Faith, and Lark! What a gift!

Esther to Begin Dialysis Routine on Wednesday

Well, we’ve known it was coming, but I am still sorry to say that Esther has reached the point of requiring dialysis. She starts tomorrow.

We have been hoping that Esther would be able to have a pre-emptive transplant and skip dialysis altogether, but it seems the Lord has other plans for her.

Esther will join Samuel in the 3-day-a-week dialysis routine. She's disappointed, but is taking it all in stride. She is amazingly matter-of-fact about the whole thing. As of today, she has accrued 74 days of waiting time on the organ bank list. There is no telling how long it might take to get a kidney through the organ bank, but we are hoping and praying for something to come through this summer.

Samuel, on the other hand, has 536 days of waiting time accrued. That's a lot of time for a pediatric patient! He was activated on the waiting list in May and could get "the call" at any moment. Everyone, including the transplant team, is surprised that a kidney hasn't yet become available for him.

We can only wait and trust in the Lord and His perfect timing for Samuel's and Esther's transplants.

It has been a long time since I last posted. If I get a chance, I will try to fill you in on some of the highlights of the last five months. In the meantime, I would be grateful for your prayers for Esther as she begins a new phase of her personal kidney adventure.


Esther and her horse, Candy, enjoy some quiet time together.

Medication Woes

Katie is having a terrible time with her medications. It has been a challenge for the docs to find a combination and dosage that keeps her protected from rejection without lowering her white blood count too much or torturing her with side effects. If you remember, she was hospitalized last summer for a couple days because her white count was dangerously low. Her transplant was 9 months ago and she is still having blood drawn once or twice (and sometimes even three times) a week to monitor medication and WBC levels.

A couple months ago, Katie began transitioning from one immunosuppressant drug (Prograf) to another (Rapamune) because she was having some unbearable side effects from the Prograf. A couple weeks ago, the docs inadvertently overdosed her on the new medication and she has been a physical and emotional wreck ever since. Not fun!! If things don’t level out soon, we are thinking about sending Katie to live with Dr. D. That should motivate him to adjust her meds to a level that she (and those around her) can live with! (Smile!) Seriously, Katie is really struggling and would be grateful for your prayers. After a 4.0 GPA last semester, she is having a hard time keeping up with her studies.

Because each person metabolizes drugs differently, finding the perfect combination and dosage of drugs is an art, not a science. Katie clearly metabolizes things differently than the norm. Lab work shows that she is momentarily at the “right” drug level, yet her white blood count is too low and she is overwhelmed with emotional and physical side effects. The risk of backing off on meds enough that Katie is not experiencing side effects is that she may then be susceptible to rejection.

So while you are praying for Katie, please also pray for the docs that they might have wisdom to manage Katie’s meds in a way that keeps the whole person of Katie well, not just her kidney.

Surgery Went Well!

Today Samuel did a great job of NOT living up to his title of "prince of complications" (as he has been dubbed by a friend). Everything went well!

His fistula is on the inside of his right elbow (he is left-handed) instead of down on his wrist like Esther's. Instead of one incision (as Esther has), Samuel has two. The vein and artery are much farther apart higher up on the arm, so to make the connection requires two openings of the skin.

Samuel has had so many IV's in the past that he has sections of his veins that are damaged from scarring. They needed to place the fistula higher up his arm in order to find a good spot. The vascular surgeon still had to do some work to expand a scarred area in the vein. We'll just have to wait and see how the fistula develops. It is not uncommon that a fistula needs a second procedure at some point to make things work just the way they should.

My Mister-been-there-done-that was as calm as a cucumber (and full of it!) in pre-op. Here he is doing Algebra while waiting to go to the OR.


Samuel, are you actually smiling AND doing Algebra at the same time? How is that possible?? -VBG!-

Thanks to everyone who was praying for Samuel today!

Fistula Surgery for Samuel

Kindly keep Samuel in your prayers tomorrow as he has his fistula surgery. He is scheduled in the OR at 2:30. It is a relatively minor procedure, but Samuel has a history of making things more complicated!