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