Update 13

Greetings everyone,

Our last update reported on Nate’s PD and getting home dialysis going. That was long awaited for and now we are adjusting to Nate’s new “life”. Every night Nate “hooks up” to a machine that pumps a special fluid into his peritoneum (basically his abdomen) and pumps it back out after it has absorbed all the impurities in his blood. This cycles through several times (lasting approx 9 hours) in a night and the plan is he awakes full of vigor but no vim J. Well, this has been an adjustment, as stated, and we are hoping he gets used to the process so that he can experience a full night’s sleep… this has yet to happen on a regular basis…. And by the grace of God, life goes on!

This last week, Nate passed another milestone in his life with renal failure and that was getting his hemodyalisis tube (in his chest-a catheter going under his skin and into a vein near his heart) removed. This was quite a process as it had been in since the initial emergency room visit in January. You will have to have Katy or Nate tell you the whole story, thankfully I was not there. It involved quite a “yank” from the doctor and a bit of spattering that I will not go into any further. If you have a stomach for it, Nate fished around the trash when the doctor left and took a picture of the tube as the only souvenir he was allowed (the picture is at the end of this email-warning, not for the faint hearted)… he could not bring it home… he asked and they said no… (he has to live with the disappointment of not having this tube hanging from his trophy shelf in his bedroom)! Now you should feel free to give Nate a hearty hug and you will not have this plastic knob-like thing pressing into your chest. It has allowed him to shower once again with ease. The doctor was surprised to hear that Nate was told not to shower with it and said that he could have done it, to which Nate replied, “Now you tell me, after I have lost my girlfriend”… (that’s a ha, ha… Nate still has a significant other, Kari, who has hung in there with him through this all).

The latest, and most exciting news is that Nate had his transplant interview at Johns Hopkins on Tuesday. We now have a better idea of what all is involved with that process. It was about a 4-hour meeting with about 6 different people – a social worker, a surgeon’s assistant, a nurse, a research assistant, a kidney specialist, and the surgeon who will perform the operation. They all agree that Nate is an excellent candidate for a transplant (as long as he doesn’t start smoking or drinking, or stops wearing his seatbelt or starts texting while drivingJ). They gave us several booklets explaining various aspects of the procedure like acquiring a donor (no coercion allowed, black market organs definitely not cool), and additional considerations of things not covered by insurance (numerous visits to JHMC and possible overnight stays, non-covered insurance items and medication costs) and how to pay for additional things (like organizations created to assist in “fund raising”). Insurance does pay for the expenses involved in finding, testing, surgery and recovery for a live donor and we were encouraged to start that process as soon as possible. The more potential candidates the better, and there is a web site to refer people to who are interested in that possibility. Furthermore, that person has full control over how involved in the volunteer process he or she wants to be… from just donating to Nathaniel, to offering to donate to someone else who might have a friend/donor that is a match for Nate and essentially “swapping” donors. Hence, even being an “ideal” match for Nate is not an issue if one is just willing to donate. Anyway, the web site deals with all of that and is the place for people to begin (https://johnshopkins.trcareportal.com/ if you register, all you do is provide your email address and create a password… you are then sent a confirmation which allows you to fill out an extensive questionnaire… “ you are not officially registered until you fill out that questionnaire). Furthermore, as extra expenses accumulate for such a procedure, we are considering  setting up a “charity” to help with expenses. As we find out more about that, we will pass that on as well.

For such an ordeal, it is amazing how upbeat and positive everyone was at Johns Hopkins. We were told that although a major operation, the success rate is high and the recovery period is fairly brief (4-8 weeks – a little shorter for the donor) relative to other major surgeries. Also, that it could occur as early as this summer which is obviously what Nate would prefer, and we likewise agree.

Thanks again for all your prayers and concerns. God is good, all the time, and we are counting our blessings all along the way! We appreciate so many of you who have shared your own experiences with kidney issues or chronic health issues as you seek to comfort and encourage us. You have shown us that this is not necessarily a comfortable journey, but it is agood journey as we are drawn closer to our God and each other. Keep up the faith!

Shalom,

John

Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com and if you ever care to become more involved you can check out her web address for donations by going to  www.WorldOutreach.org/donatations  and select Hannah Bechtold #273

Update 12

Greetings Friends and Family,

Well, this was a big week for us. Nate began the training for home dialysis (Peritoneal Dialysis-PD), and made it through his third round of chemo, and has begun to taper off of his steroids. Talking to his doctor on Tuesday has lead us to believe that his kidneys have not really responded to any of the therapies attempted and there really are no further medical options in terms of helping to restore any level of kidney functioning.  But it has not ever actually been about the kidneys per se, but about God’s glory manifest through this situation, so we continue to hold on to the knowledge that God has this all under control in ways deeper than we can understand right now.

Nathaniel began this week learning about what procedures are necessary for his in-home dialysis by first learning what to do if he ever needed to do the PD without a machine. It can be done through a “low tech” gravity method which will always be a “back-up” procedure in the event the machine stops working. After learning about that, he spent time learning about the machine assisted PD. You can actually see it in the picture at the bottom of the page, taken after his first night of PD at home. The machine is no bigger than a small suitcase, and although not intended to be “portable”, it can be taken on trips and journeys away from home. Given that dialysis is done all over the nation, there are centers all over as well that can assist him should he ever travel and need it apart from central PA. That’s one advantage to having such a popular disorder! The biggest threat now is the potential for infection if he does not follow carefully and precisely the hygienic procedures for administering the dialysis. He discards all his tubing every day after use, and must abide by some very specific and intentional procedures to start the process every night. He must plan to be on the machine initially for around 9 hours a night which will mean an adjustment to his “student lifestyle”. Furthermore, after two nights, he is realizing the sleep process will take some adjustments and getting used to. His first couple of nights have not been great, dealing with fluid being pumped into him (about 2 liters-worth) and then being pumped out. The weight of the fluid and the space it takes up in his abdomen is not too comfortable as he attempts a full night’s sleep. The positive is, though, he should be able to have more “normal” days and a more flexible diet.

As for our spirits, the nurses and all that have attended to Nate marvel at his attitude and his cheerful spirit and for that we thank God and many of you who have helped to establish a strong foundation of faith and trust in God through your own “pouring concrete” into his life. Nate’s life has been built on a firm foundation through the many contributions of his friends and family and youth leaders over the years and we are humbled at such a “work crew”. We are inspired to do what we can to “pour it forward” as God gives us the strength and ability to speak of God’s faithfulness and grace and mercy to others who may be going through similar situations. God has not abandoned us in all of this, but to the contrary, has shown us the result of the years of living as part of a faithful community of believers that compels us to say along with Mordicai, that maybe we were have been placed where we are “for such a time as this” to bear witness to God’s power and faithfulness. Already, we marvel at the numerous medical procedures that have helped to maintain Nate’s life and we marvel at the incredible physiological workings too wonderful to comprehend. Doctors and others think they know something, but it merely scratches the surface and yet it is far beyond what most of us understand about the human body. We are encouraged by their experience and knowledge, yet we trust in the name of the Lord our God to see us through! Nevertheless, we have all had our “moments” of  anxiety, distress and frustration, but given the circumstances, we all are holding up fairly well. This is as much a testimony to your prayers and encouragement and sharing of concern for our lives as we go through this that we are so grateful to know we are not going through this alone. Again, the community/family of faith is a powerful presence in our lives. Thanks for being there.

Well, this is it for now. We continue to make adjustments and find God faithful in sustaining us. We trust likewise, that you are finding Him equally faithful to whatever place you are at with God as well. Keep up the faith and fight the good fight. Keep in touch as you are able, we appreciate the notes.

Shalom,

John

Btw, many of you know our daughter Hannah is now serving in Chaing Mai, Thailand for two years. You can follow her adventure on her blog : www.PurposefulDiscomfort.blogspot.com and if you ever care to become more involved you can check out her web address for donations by going to  www.WorldOutreach.org/donatations  and select Hannah Bechtold #273

Update 11

Well, it has been a while (2.5 weeks) since an update and I thought I would take this opportunity on a Friday afternoon to share a bit about what has been going on. Nate has been consistent in going to dialysis MWF and that has its ups and downs. For example, on the 17^th Nate had retained so much fluid over the weekend that he could hardly get out of bed or breath easily. So, being concerned, he called his doctor and they got him right in to dialysis that morning instead of the afternoon. That day, they took off 12 pounds of fluid in the matter of a few hours. That’s about a gallon and a half of milk weight-wise (gal Milk/8.5 lbs.).  This dialysis is most dramatic on Mondays when he has gone an “extra” day without dialysis and so retains a bit more fluid-which means over a week-end, we must be especially careful to manage his fluid intake. Then, last week he also had another round of chemotherapy to help kill off the white blood cells that seem to be attacking his kidneys. Seven to ten days after the chemo is when he is most vulnerable, having his immune system so suppressed due to the chemo. Unfortunately there are other side effects and other procedures related to the administering of the chemo that make me question whether the “cure” is worse than the illness. Thankfully, Nate seems to have weathered the chemo so far, although there have been a couple of days of discomfort and struggle to go to class. In about another week, we think he will go through this again for the third and possibly final time.

Some good news along the journey is that Nate is uriNATE-ing much greater than he ever did in the hospital during that first stressful week of this ordeal, and doing so on a regular basis… we thank God for this bit of normalcy in all of this, even though it is not clearly certain if his kidneys are doing much to influence this amount. Thanks to tons of you who have asked and are continuing to urinate with Nate in mindJ! Furthermore, the doctor has cut back on his steroid treatment and that has helped to reduce the amount of fluid he is retaining and he has found the right kind and dosage of medicine to keep his blood pressure down. All of this is to say that through this all, God has been faithful and sustaining.

Although we try to focus on the good and are bolstered by your encouragement and thoughts and prayers, I am beginning to realize that over the long haul (and it really hasn’t been that long… just a little over a month and a half) these sorts of situations do begin to take its toll. I can much more fully appreciate the patience and longsuffering that many individuals and families go through with chronic conditions and I marvel at God’s sustaining power… will it be enough to get US through? I believe, yes, but it is not without its share of doubt (many of you know that when it comes to medical stuff, I am a major wimp). Nonetheless, it is good to know of such a cloud of witnesses surrounding us and daily finding God faithful with the strength to make it through all the events of a day, and still find laughter and joy when we are together as a family and also when we are around many of you. Laughter truly is medicinal and I can’t imagine where our family would be without it. It is hard not to smile when I share with delight the “pee report” as if daily urination is equivalent to the Olympic medal count. Little victories DO add up to big victories of God’s care for us!

Upcoming events for Nate… he will have another round of chemo this Thursday and we now have an appointment with the Kidney Transplant team at Johns Hopkins set for the first of April. In another two weeks, we hope that we will be transitioning Nate off of three-day-a-week dialysis and to nightly dialysis in the home. As I said, this journey has its ups and downs… Nate is attending school, but he is not quite “normal Nate” in class, but he is hanging in there. Thanks again for connecting with God on our behalf. We wait expectantly for glimpses of his Glory through all of this.

Shalom,

John

Btw: We celebrated Nate’s 21^st birthday Feb. 28!

Update 10

Greetings Friends and Family,

In the name of full disclosure, I am sending you this update declaring that Nate had an improved urination this last weekend! Whereas Nate had not completely stopped this process, it was nothing to speak of until this weekend when Nate told me that not only was he feeling better and that some significant swelling had gone down, but also that he had a real good urination! We, of course, are cautiously optimistic, but nonetheless want to give glory to God for this indication that his kidneys might still have some life in them. As our doctor in New York suggested, some functioning is better than no functioning, but we will just have to wait and see if this continues. We anticipate another round of chemotherapy sometime this week which will mean Nate has to be especially careful not to be around any contagious illnesses, but he is hopeful another round will help improve functioning. During dialysis yesterday, Nate was officially entered on the transplant list, one of the first steps in quite a process for a successful transplantation. The more we learn about this, the more we will pass on. I still feel we are in quite a learning curve with this illness and still are waiting for a routine. His PD (peritoneal dialysis) doctor says that we won’t begin that process until the first of March. I was hoping for sooner, but we will be happy whenever that stage begins. PD will give Nathaniel much better and more frequent filtering which will help to maintain lower fluid retention and better all-around mobility and energy. Classes began for Nate last week and he thinks he will be ok with them. He has two in the morning and two in the late afternoon TTh, and only one around noon MWF. This has made it fairly convenient for break times and flexibility with getting dialysis. Given his condition, this likely could not have been any better class schedule for him… little did we know that when he enrolled last semester! Again, I want to thank you all for words of encouragement and your interest in our journey. Your interest toward us, far from being a distraction, is a beautiful reminder that we do not go through this alone by any stretch of the imagination. Presence is precious!

Reflection:

As I have stated before, this journey has availed itself of giving me time to ponder and consider prayer and its dynamic relationship to God and His presence. I have spoken to many of you about this journey and have gained much encouragement and insight. I am often uneasy about talking about “prayer” because it can mean so many different things to so many different people. We all have our unique experience with God and the word “prayer” just doesn’t seem to capture all the nuances to this relationship. We only use the term in the context of communication with God, we don’t pray to other people, yet we share with, talk to , relate to, reach out to, touch, speak with, persuade, negotiate with, plead, argue with, challenge, yell at, and preach to others. Sometimes, when I say I prayed to God, I actually mean I yelled at Him, and other times I have tried to persuade or plead with Him. Nonetheless, it still just comes out, “I prayed”. The word prayer, although useful in some contexts, is too generic in other contexts. What are we really saying when we say we are “praying” for someone? What do I mean when I thank someone for their prayers? The one commonality that resonates with me these days at least, is that when I hear the word prayer, I hear the word “connection”. I imagine people connecting with God on our behalf, not as someone shaking fearfully before the Wizard of the Emerald City, but someone who receives this direct link between himself or herself and the creator God. As I just finished sharing in our Authentic Living class this past Sunday, in John 16 toward the end of the chapter, Jesus says that his disciples will no longer ask anything of Him, but will go directly to the Father… “in that day you will ask in my name; and I do not say to you that I shall pray the Father for you; for the Father Himself loves you, because you have loved me and have believed that I came from the Father (v.26, 27).” God calls each one of us to Himself… He initiates, we respond. I imagine that as you join us in this journey with Nate, each one of you are connecting with the Creator God (I try to be careful with my updates to tell you what is going on, but not tell you what to “pray” – I leave that to you and your conversation with Him), what goes on between you two I believe can only be beneficial not only in bringing glory to God, but also in spilling over into blessing far beyond just Nate and our family. With this I am encouraged and we gratefully and humbly receive such blessings, knowing they don’t stop with us, but pass on to encourage believers everywhere the word gets out that you are “connecting” with God. Will we ever get to the point where in our conversations with each other we talk as if talking to ambassadors of the King, where our simple utterances to each other are completely within the context of prayer in God’s presence? Then, it will no longer be “I prayed for you” but “hey, stop… God is here, let’s talk with Him together, right now! Not head bowed and eyes closed, but face to face!” Until that day comes, thanks for your prayers!

Shalom,

John

Update 9

Greetings everyone,

It has been a few day since our last update… no news is good news… for the most part we are getting into a routine, except the weather is more of a game changer at the moment. After Nate came home last Wednesday we hoped to see the  specialist in NYC last Thursday, but that was rescheduled for yesterday. Other than that, there was anticipation of MWF dialysis and the beginning of school. Thanks to the weather, Nate’s only class on MWF has been cancelled and his dialysis was rescheduled from Wednesday to the previous day, Tuesday, the morning of our long trip to NYC.

Nate continues to be weighed down with water retention and is puffy in his face and ankles, and essentially all over. With the last two dialyses they removed a total of about 17 pounds of fluid which is great and we hope that continues.  He seems to be having more energy to move that weight around, which is good and we are all maintaining good spirits by God’s grace and mercy. The steroids make Nathaniel constantly hungry and he is on a somewhat restricted diet along with having to monitor his fluid intake, so that is the most inconvenient aspect of his life right now, but that is manageable.

Now for our meeting yesterday (you can skip all these details if you want and just get down to the bottom line):

We had a beautiful drive up to NYC on Tuesday, low traffic and clear skies with glistening snow-covered trees all the way. We found the hospital right off of the George Washington Bridge (a truly amazing, beautiful suspension bridge) and parked in the hospital parking lot ($15 for the first half hour, we paid $31 for our time there). You can feel the energy and research activity just by walking in to the place. Quite an exciting place! After filling out lots of details on an intake form, we had quite a bit of time to wait for the doctor given we were quite early and he was 50 minutes late from our appointed time, and even then, we spent about 45 min giving info to his assistant. After looking over all of his files, Dr. Appel came in and spoke with all of us. Nate has Crescentic IgA Nephropathy (CIgAN) meaning he has a very aggressive form of kidney disease. The normal form of kidney disease seems to have a genetic component of which this rare disorder does not seem to have. They are just now learning more about the nature of this rare disorder-Nate feels really special J! This disease is diffuse and global, affecting all of the kidney filters blocking them from filtering, which is different than the “normal” IgAN which typically manifests itself locally and affects only segments of the kidneys. This is partly why it hit so fast and hard. The doctor shared a most recent article he wrote with us stating some of the most current research on the disorder and also told us of other research being done that he is a part of. The article looked at those who have gotten transplants after having CIgAN, hoping to discover if the disease continues to affect a transplanted kidney. Of the 153 patients, only 15 had verified CIgAN (9%). Of these 15, only one was discovered with a reoccurrence of CIgAN. To the doctor, this was a good indication that in terms of transplants, this rare disorder is not likely to reoccur. Of course, the most important part, Nathaniel liked the sound of his voice and the way he talked. Furthermore, the doctor stated that the biopsy got a good area of tissue and he is fairly confident that most of the kidneys will not return to full functioning, but he wants to do all he can to preserve anything that may be left, so he wants to continue the chemotherapy for another month. Side effects are unlikely, but can be serious, so we do not want to continue with it beyond much more than a month without positive results. Those positive results would be a greater output in urine which right now is not that great (“Urinate for Nate”). The doctor was very straightforward and good at communicating with us and answering questions, putting us all at ease. I asked about the potential for a transplant, and he said that typically transplants occur when he believes the kidneys are completely “necretized” (all the kidney tissue is dead) and that might be up to 6 months, depending on the person and the kidneys. He was very positive, however about the transplant process and told us of several of his patients that have great experiences with their transplanted kidneys (all of his examples were of professional athletes-NBA and MLB stars) of which he has pictures with, inferring that they were his patients. Also, he wants to keep involved with Nathaniel for at least a month and see what happens, stating that Nate will continue to be a bit bloated, but that it should diminish a bit more than he is right now given dialysis continues to take off some of the fluid. He was very interested in seeing that Nate gets the best care and he assured us that he will be in touch with the doctors in Harrisburg concerning his treatment. He gave us copies of everything he went over with us for his doctors here, as well as copies of the abstract of the most recent article on Nate’s condition. He said that we would not have to come back to NYC but that he would definitely be involved in his case. We left with a great deal of confidence in this doctor and know that with God as the great Physician, He seems to have a fairly good assistant working on His behalf here on earth (even though he may not know it). As we seek His glory, and not just a healing, I am excited at the lives that may be touched as a result of this journey.  So…

The bottom line:

Nate will continue dialysis, transferring over to Peritoneal Dialysis in about another two weeks (allowing him more normalcy in his life).

He will continue his regimen of chemotherapy for another month or so (two-week intervals) and revisit his progress with the specialist in NYC (via the internet/phone) regularly.

      This will involve some degree of quarantine hopefully over weekends when his immune system will be compromised.

The likelihood of total kidney failure is high and a transplant would not be called for at least about 6 months.

His fluid will diminish some with continued dialysis, yet he will still be a bit bloated as long as he is on steroids which will also continue for another month.

God is faithful and good and this whole thing could be so much more worse were it not for His faithfulness and your prayers and continued connecting with us. We are really blessed in so many ways. There are moments of feeling overwhelmed and uncertain, but we do not fear, nor do we feel abandoned. Remember Nate as he starts school tomorrow and into the coming weeks, that he will know God’s sustaining power.

Shalom,

John

Update 8

Update on Nate.8

Hello everyone,

We are not going to NYC today but will go up there on Tuesday. Nate made it through his surgery on Tuesday and was in a bit of pain as expected but slept fairly well last night. Today he had his dialysis, and then was released. He was able to get rid of another 6 pounds of fluid and looks a little thinner, but not by much. Now we begin his out-patient dialysis on MWF. He is now taking a lot of medicines, some to counter the effects of others… maybe many of you who have been through similar treatments know the medicine game… it would be so nice not to have to be on so many medicines but that is what is going on now. He still has quite a bit of extra weight and it would be great to see that be reduced as well. It is so good to have him home and we are so thankful not to be driving back and forth to the hospital and dealing with various hospital dramas. Many of you have offered to help out if we have any needs… as we get into a routine for dialysis, we may be calling upon some of you for transportation one way or the other.

As for how Nate is feeling these days. He has shared that he is thinking about how his days at school will go… getting around to classes, carrying all his pills with him and taking them at the right times, packing his lunch and being mindful of what he can eat and when,  how his energy level will be, and just his overall cognitive performance before and after dialysis. We will all have to adjust to a “new normal”, it is just that the majority of the adjustments will be on Nate.

Well, that’s about it for now… the link at the bottom of this page contains all of the updates prior to this one. Thanks for your prayers as we enter this new phase of Nate’s treatments. We cherish you emails and texts to us letting us know of your thoughts and prayers. God is good and has provided for us in many ways this past week. Hope you have likewise experienced God’s presence in new ways as you have spoken to God on our behalf. Thanks again, and keep up the faith.

Shalom,

John

Update 7

Update on Nate.7

Greetings all,

Yesterday (Monday) was a day full of information and clarification of things. I hope I can remember them all to convey to you. Where to begin?

First

It looks like we will be going to New York City, Presbyterian Hospital, and talk to the #1 specialist in the nation who is familiar with conditions like Nathaniel’s (based upon our nephrologists suggestion). His name is Gerald Appel if you want to look him up. We are not sure of the time, but we think it will be some time this Thursday.

Second

This afternoon, Nathaniel will go into surgery for a peritoneal dialysis catheter to be attached to his abdomen so that he can more easily do dialysis nightly at home rather than for 3.5 hours three times a week at a dialysis center. The procedure will take about an hour. The catheter is about a 6-inch tube sticking out Nate’s abdomen that will eventually be attached to a machine each night.  This catheter allows for a phenomenal process that I don’t fully understand that involves pumping a fluid in and out of his abdominal cavity that interacts with capillaries to draw out impurities in his blood… who thinks up these things?! The procedure today takes a couple of weeks to heal and to make sure infection does not occur. Possible infection is the biggest concern so pray that things heal well.

Third

Nate is done with his plasma treatments, one of two types of treatments recommended for his rare disorder. This was more of an inconvenience than a pain. It involved a process like dialysis and made for a long day yesterday for him. The other treatment, the low dose of chemo will continue at about 2-week intervals.

Fourth

Our nephrologist, Dr. Julie Rothman, is a fairly direct, straight-shooting physician (which both I and Nathaniel like) who says that the treatment Nate is enduring is to create the best possible outcome, although it is a longshot that the kidneys will return to fully functioning. Nonetheless, she wants to do all in her power to give Nate the chance. If all goes well, I think she anticipates releasing Nate from the hospital sometime tomorrow after his dialysis. He will then continue dialysis three times a week, MWF, until his catheter heals. Once that heals, he will do dialysis at home at night while he sleeps. Nate will live with this procedure until the doctor deems it right for a transplant. The target date for that, and the placement on a list, has not been discussed at this time. Nate should be able to experience a fairly normal life within limits, although the full implications of this will work itself out in the days and weeks ahead.

Fifth

Many of you have relayed to me your prayer experiences during our “Urinate for Nate” campaign! I must say it provides for some interesting and dare I say rather intimate stories. Nonetheless, I want you to know it has been a testimony to nurses and doctors at the hospital to know of the novel way to remind people to pray for Nate and to thank God for his goodness. It has inspired other such prayer ideas such as “Pee and pray” and “Lord, make a polder of this kidney kid” (For you non-Netherlanders, a polder is a piece of land that remains when all the water has been drained off of it). I wish I could say its effect opened floodgates, but it has not happened yet. So don’t stop… either… (praying or urinating) J…

Sixth

I want to continue to thank you all for your support in prayer and other ways. I can’t explain the strength and endurance we have experienced any other way than by God’s presence and grace afforded through your prayers. I am truly awed and humbled. This update list has swelled from my initial list of about 48 to well over 100 now, and to that I just repeat, to God be the glory. Feel free to continue to pass this on or request that I add people to my direct list. Thanks again.

Shalom,

John