Countdown to Transplant!

Sorry to leave you all hanging!! We arrived home from San Antonio on Tuesday night and it has been a whirlwind ever since. I am feeling like a cross between a travel agent and an event planner. There have been so many details to arrange since we got home.

Everything went well in Texas. The team there seems great. They are excited to be able to include Samuel in the chain and are happy with Hannah as a donor. Plans are moving forward. We are scheduled to fly back to Texas on Friday afternoon, November 5th. That is less than 5 days from now!! We'll have the weekend to do some sightseeing and then we'll be busy with dialysis and appointments until the big surgery day on Friday, November 12th.

The chain is still a work in progress and is likely to consist of 12 to 17 pairs. This particular chain is being started by an altruistic donor (can't wait to meet that person!!) and therefore can be linear rather than a closed circuit. The team is still working on the tail end of the chain, hoping to include as many people as possible. It will be the largest paired exchange ever to take place at a single institution. As of last week, Samuel will be the youngest "link" in the chain. We are so grateful that this appears to be the Lord's provision for Samuel to get a kidney. It is an honor to have been invited to participate in this historic event.

And if that weren't exciting enough and if I didn't already have enough to keep me busy......I flew to North Carolina today to attend an intensive training seminar entitled "Hospitals and Communities Moving Forward with Patient- and Family-Centered Care." I am here as part of my work with the newly-formed Patient and Family Advocacy Council for Baird 5 (the pediatric unit of Fletcher Allen). The seminar program is incredible - it reminds me of the analogy of trying to drink water from a fire hose. It is a privilege to be here!

I will return home late on Thursday night, Samuel has dialysis from 7:00 a.m. - 1:00 p.m. on Friday, and our flight to Texas leaves at 4:10 p.m.! I volunteered to attend the conference back in September, long before any hint of a transplant in Texas. Tom summed it up well when he said, "At the time, it seemed like a good idea." We're just taking it all as it comes!

Well, I need to get to bed so I can be well-rested for 4 full days of workshops. Please continue to pray for the details of the paired exchange. It is still very fragile. Everyone involved needs to stay healthy enough to safely undergo an operation. The surgeries are scheduled to take place over 3 days - November 11th through the 13th.

On this date exactly 3 years ago, Samuel had his tragic first transplant. That's behind us now and we're looking forward to a successful second attempt!

Let the countdown begin!

We're off to Texas!

This I recall to my mind,
therefore I have hope.
The Lord's lovingkindnesses never cease,
For His compassions never fail.
They are new every morning;
Great is Your faithfulness.

Lamentations 3:21-23

Both Tom and my dear friend, Anje, recently reminded me of this scripture. The Lord indeed continues to show His faithfulness to our family!

We have been unable to find a compatible living donor for Samuel despite the many wonderful, generous people who have stepped forward to offer over the last 3 years. (May God bless each and every one of you!) Additionally, Samuel’s name has never even once come up on the deceased donor list. He just has too many antibodies against very common antigens. That has made him incompatible with 99% of the population.

Back in March of this year, in hopes of finding a compatible donor, Samuel was listed with the National Kidney Registry. This fairly new organization connects pairs of donors and recipients in a type of chain called a paired exchange. The wonderful woman who was willing to donate on Samuel’s behalf was Linda Paroline. Samuel and Linda were the first donor/recipient pair from Fletcher Allen to be registered with the NKR.

The transplant team continued to encourage us to find additional donors to list with Samuel as each donor, with their unique genetic profile, could lead to a different possible chain.

In June, Samuel’s 21-year old sister, Hannah, passed all her screening and was listed as a second possible donor for Samuel with the NKR. I also want to make special mention of Grace, Samuel’s 19-year old sister, who was one of the first to offer to donate a kidney on Samuel’s behalf. Unfortunately, Grace was disqualified as a donor. Thank you, Grace! We love you!

On Friday last week, after 3 long years of waiting, we got a phone call from our transplant coordinator saying there might be a paired exchange that could include Samuel and Hannah as his designated donor. We were told that the target date for the transplant was around the second week of November and that this chain could include as many as 16 pairs of donors and recipients. That would be 32 surgeries to orchestrate! It was still very early in the planning and there were many details to work out.

On Monday, Samuel and Hannah both had blood drawn and sent away for cross matching with their respective donor and recipient. We were told that Hannah was being asked to travel to Texas to donate to her recipient in San Antonio. Hannah was willing, and we made the difficult decision that I would travel with Hannah and Tom would stay here with Samuel for his transplant. We were asked not to share any details as plans were still too tentative.

On Wednesday, we got word that the cross-matches for both Samuel and Hannah were negative. In this case, negative is a very good thing! We were also told that the timing and logistics of the surgeries would make it impossible for a kidney to be shipped to Samuel in Vermont. If we wanted to participate in the paired exchange, both Hannah and Samuel would have to travel to Texas. This was a bit of a shock! But we are always up for a new challenge, especially if it means that Samuel can get a transplant, so we began to wrap our heads around the idea.

Today we were told that the transplant team in Texas needs to see Samuel and Hannah on Monday (or Tuesday at the latest) for further screening and evaluation. That is 3 days from now! Okay, deep breath, we can do this! Lots of scrambling, lots of phone calls, and we are scheduled to fly out tomorrow at 5:30 p.m. We’ll have Sunday to relax and then we’ll report bright and early at 7:00 a.m. to the clinic at the Texas Transplant Institute in San Antonio. They claim to be “the nation’s largest and most experienced living donor kidney transplant program.” Sounds like a good place to be! They will arrange for Samuel to dialyze on Monday after a series of appointments for him and Hannah. We will fly back home on Tuesday afternoon.

If everything goes well for Samuel and Hannah (and all the other pairs), we'll be flying back down to San Antonio sometime before the transplants which are scheduled to take place over a 3-day period starting on November 11th.

So yeehaw, we’re off to Texas!! Just another example of the Lord's lovingkindnesses! Just another episode of the Smith Family Kidney Adventure!

Struggles and Surrender

Samuel and I spent another night in the emergency room, so if I sound a bit more discouraged than usual it is likely due to missing two nights of sleep this week. Another contributing factor would be my concern for Samuel. He is really in a hole. I am struggling not to be controlled by my emotions and lack of sleep.

The purpose of last night's visit to the ER was to get control of Samuel's migraine (which had escalated to a whopping "10" on the pain scale) and to lower his blood pressure. Pain is a horrible thing. While he has had some degree or another of a migraine for almost 3 weeks, yesterday's escalation was likely triggered by having had an extra amount of fluid removed during dialysis.

Samuel has been arriving in dialysis at about the same weight each time. Because he has been eating so poorly for some weeks now, we started to suspect that less of his weight was flesh and more of it was fluid. So while the number on the scale was relatively consistent, we suspected that his dry weight was actually much less than it had been. That could be contributing to his blood pressure being high.

They are always hesitant to challenge him with too much fluid removal because of his body's sensitivity to fluid shifts, but since he was already in a bad way during dialysis yesterday, we decided to see if there was extra fluid that could be removed. It is only a matter of adjusting the fluid removal goal on the dialysis machine. They could have pulled off more, but they stopped at 2.3 liters, which would seem to confirm that he has been carrying extra fluid and that his dry weight has dropped significantly.

It is likely that this fluid challenge is what landed him in the ER. If we end up with a more accurate idea of his actual dry weight and if it ultimately means his blood pressure will be better managed, then it will have been worth it. I can say that objectively, but I am not the one who was in physical agony for hours last night. Mine was the silent pain of a mother's heart breaking as she helplessly watches her child suffer.

Today is a repeat of Tuesday's day-after-a-night-in-the-ER. His headache is "only" a 7.5 and the emesis basin is his constant companion. He has been unable to eat and looks like a walking skeleton. Mostly he is trying to sleep.

Plans for the paired exchange continue to move forward. Things are getting complicated. We don't know much and what little we do know, we have been asked not to share. Everything is still too tentative to announce. It would appear that we will be asked to step way outside our comfort zone. We are grateful for this time to process and prepare.

All of this will be for naught if Samuel is not well enough to undergo and recover from a big surgery. Everyone recognizes that a new kidney is what he really needs to be well, but of course, they won't allow him to go through with the transplant if he isn't well enough to handle it.

Lord, I place Samuel, his health, his life in your hands. I trust you to provide what he needs in your perfect timing. Give me your grace and peace that passes understanding to accept whatever is ahead - both the good and the bad. Thank you, Jesus.

Struggles and Hope

Well, yesterday's long day turned into a long night. Samuel went from dialysis to the emergency room after multiple unsuccessful attempts to lower his blood pressure. Eventually, his pressures were low enough that we could stop worrying that he would blow a gasket. It was 2:30 a.m. before he could safely leave the ER.

Samuel slept most of today and tried to recover from feeling like a Mack truck had run over him. It was my job to monitor his blood pressure to be sure he was safe.

Late this evening we got the very welcome news that Hannah had a negative cross-match with her potential recipient and Samuel had a negative cross-match with his potential donor. Hallelujah!

Now we must sit tight and wait for further instructions. All other pairs (and there may be quite a few!) must also have negative cross-matches. There are still a myriad of details to be worked out and many critical components to be completed. One of the very necessary pieces yet to happen is that our surgeon here must receive an official offer of a kidney for Samuel from the NKR. This is the first time that the folks at Fletcher Allen have worked with the National Kidney Registry, so we are all learning as we go.

We are holding it all with an open hand and praying, may your will be done, Lord Jesus.

Happy 500th!

Today was Samuel's 500th dialysis treatment! Can you believe it?? We had a little party in dialysis to commemorate the occasion. Thanks to Lydia for baking a boatload of cookies last night! Samuel's friend and co-dialysisee, Josh, was in the next station right alongside Samuel as usual. Josh makes any occasion more fun! Kevin, who was at Samuel's very first dialysis session, came with another old dialysis friend, Ryan. It was great to see the boys together! Did I take any pictures?? Of course not!! I'm rather annoyed with myself!

Samuel got clobbered with yet another migraine. Recently he has been getting a migraine during almost every dialysis treatment. It has been a difficult couple weeks for him. He was able to enjoy some of the festivities today with a little help from dilaudid.

It is now the end of the day and most everyone has gone home. We have been here since 11:30 this morning. We are still here in dialysis because Samuel is having a hypertensive crisis and they are trying to get his blood pressure under control with some IV meds.

It has been a long day of mixed emotions...sadness that Samuel has been doing this so long, thankfulness that he is doing this with such a great team of caregivers, and excitement that he might not be doing this for much longer.

Blood samples from Samuel and Hannah were shipped out today for cross matching. We are hoping to have some more information by Wednesday.

Cross-Match Delayed

They ended up not drawing blood from either Samuel or Hannah this afternoon. There were concerns about the samples being safely delivered on a weekend and, having been on dialysis, Samuel's blood was heparinized, which is not what the lab wanted. So...everything has been put off until Monday morning. That means we probably won't know anything more until the middle of next week. Rats!

Well, I guess we've waited this long and can wait a little while longer. I'll have to keep myself busy this weekend (that shouldn't be too hard!) so I don't think about it too much. It is still a huge uncertainty, but it is hard not to get excited.

Possible Kidney for Samuel...Please pray!

Dear friends,

I just got a phone call from our transplant team. It seems there may be a paired exchange chain through the National Kidney Registry that could include Samuel and Hannah. This is exciting, awesome, incredible news! It is the very first and only time that Samuel's name has come up with a possible match. Due to having a very high number of antibodies, Samuel has been incompatible with 95% of the population for a long time. Last week we learned that since September, he has been incompatible with 99% of the population. So the fact that there might be a donor for him is something close to a miracle!

Nothing is for sure at this point. Hannah is on her way up to the hospital right now to have labs drawn for a cross-match with her potential recipient. Samuel is in dialysis at the moment and will have labs drawn to be sent off for cross matching with his potential donor. A chain is a fragile thing. If one link (donor or recipient) fails, the whole chain may fall apart. At this point we can only pray, ship blood samples, and wait to hear the news.

Please do join us in praying that both Samuel and Hannah would have negative cross-matches with their respective donor and recipient. We should hear about the results of the cross-match some time this weekend. I'll let you know. Pray that we would praise God, no matter the outcome.