A Report on Kathi’s Health and Her Visit to the NIH

At the beginning of May, the National Institute of Health (NIH), a government medical research facility, finally brought Kathi to Bethesda, Maryland to participate in an ongoing study of Common Variable Immune Deficiency (CVID). We have been waiting for this for over a year, and it was good to finally have it take place.

What is CVID?

CVID means that her body does not produce the immunoglobulins that coordinate her body's ability to fight off infection. COMMON means that this condition is the most common of the immunodeficiency disorders (1 in 25,000-50,000). VARIABLE means that it manifests itself in a wide variety of ways that can be different for each person. Pneumonia, sinus infections, ear infections, and gastrointestinal infections are some of the many manifestations. This variety of presentations often leads to delayed diagnosis. IMMUNE DEFICIENCY means that the body cannot fight bacterial and viral infections like most people.

How does it affect Kathi?

Kathi’s manifestations are mainly twofold—repeated sinus infections, and gastrointestinal enteropathy. The sinus infections are inconvenient, uncomfortable, and fatiguing, and one may have led to an ear infection that made her deaf in her right ear a couple of years ago. However, her intestinal problems are the most acutely dangerous. They cause her either to not be able to eat or to not be able to absorb nutrition when she does eat. When her intestinal issues are acting up, she tends to lose weight quickly and dangerously and lose nutrients that are responsible for the proper functioning of her body—potassium, iron, vitamin B, etc. This condition has led to several scary emergency room visits.

At the NIH, Kathi was poked and prodded for two days by a wide variety of specialists who deal day in-and-out with CVID patients. The NIH is one of the few places in the nation where experts on her condition are gathered together in one place. At several points we sat in rooms with up to five doctors and several nurses for hours on end while they devoted every ounce of their attention and expertise to Kathi. She has needed that sort of attention for a long time now.

We learned several different things, and hope to learn much more in the months ahead. Here were some specific questions that we asked.

Q: Does Kathi have Celiac Disease and/or gluten intolerance or sensitivity?

A: For those who have CVID, Celiac Disease is a common misdiagnosis on the way toward getting a correct diagnosis. This is because Villous Atrophy is common in both conditions. The villae of the intestinal lining are like microscopic fingers which provide surface area that pulls nutrients from food as it passes through the intestines. In both Celiac and CVID, the villae can become blunted and the intestinal lining can become inflamed, preventing proper nutritional absorption and harsh intestinal discomfort. When a gluten free diet fails to reverse the villous blunting and provide relief, doctors often search for other conditions. CVID was confirmed in Kathi many months ago by measuring her immunoglobulin (Ig) levels. All of her Ig’s were very low, consistent with CVID.

Unfortunately, the most common tests available to doctors for confirming or ruling out Celiac as the cause of villous blunting require the presence of IgA, an immunoglobulin that Kathi lacks due to her CVID. Since CVID patients are approximately 10 times more likely to have Celiac Disease than the average person, no doctor to date has been able to confirm or deny that Kathi has Celiac disease. Likewise, no doctor has been willing to instruct Kathi to go off her gluten free diet, in spite of the fact that it does not appear to be improving her condition. Our (mine and Kathi’s) working theory is that she does not have Celiac, and the diet is unnecessary.

But at the NIH, they have tests available to them that are not commonly used by the average doctor, such as genetic testing. The NIH has taken blood to perform genetic tests that will place her into one category or another—1) genetically incapable of having Celiac or 2) genetically capable of having Celiac. To be in the latter category does not mean that she has it, just that she is capable of having it. The tests have not come back yet, but we have high hopes that she will be in the former category and I can finally buy her a Krispy Kreme donut.

Q: What is the mechanism that connects CVID and her intestines?

A: The doctors provided two answers, both of which can be and are probably true at the same time.

1) Her compromised immune system makes her susceptible to intestinal viruses, bacterial overgrowth and even microscopic parasites such as giardia. Like anyone with an intestinal infection, this can cause diarrhea, vomiting, dehydration, malabsorption, and the inability to eat properly. Unlike others, Kathi’s body cannot help fight off the infection, so the condition continues until it is fought off by extended antibiotic regimens that last longer than what is required by those with uncompromised immune systems.

2) The second answer is more complicated and is probably the more serious underlying problem that Kathi faces (this implies that the #1 above is simply a condition that complicates this more significant underlying problem). The body’s immune system requires properly functioning B cells and T cells, which are types of white blood cells which work together to protect the body from infection. The theory is that Kathi’s B cells do not work right, which is why her body does not produce immunoglobulins (IgA, IgM, IgG). This causes her T cells to overcompensate by working overtime to produce cytokines. Cytokines in turn overproduce interferons. These interferons are by nature inflammatory and somehow or another end up focusing their attention on the small intestine—producing gastrointestinal enteropathy. This inflammation of the small intestine is manifested as villous blunting, which presents identically to Celiac disease, although it has a different pathogenesis.

The doctors told her that this inflammation of her small intestines does not tend to resolve on its own in patients with CVID. In fact, without treatment it continues to get worse and can eventually be fatal. However with proper anti-inflammatory treatment, this inflammation can be reduced and even reversed, allowing for a relatively normal life inconvenienced by episodes or cycles of intestinal issues. It appears though that the underlying condition that causes the inflammation is not curable at this point. She will need to remain on some sort of anti-inflammatory treatment indefinitely.

Q: What is Kathi’s current and future course of treatment?

Every three weeks, Kathi has an immunoglobulin infusion (IVIG). You can think of this as a transplant of immunoglobulins extracted from several thousand different blood donors in each infusion. This builds up her infection fighting abilities for up to three weeks at a time, reducing the number of sinus and intestinal infections that she is susceptible to. This course of treatment will be maintained for the foreseeable future. IVIG is very expensive, costing several thousand dollars for each infusion. Thankfully insurance pays for a lot of this, but the remainder mounts up quickly.

That takes care of the infections. What about the more urgent intestinal inflammation? After trying a very expensive steroid (entocort) for several months that did nothing for her, her doctor put her on prednisone (thankfully a very inexpensive drug). Prednisone is a miracle drug for her condition. It has reduced most of the inflammation, so that Kathi has been feeling better for several months now. She can eat, has gained back important weight, has much more energy than before, and is generally much happier (and her happiness is so beautiful to me!). She has stepped down to a minimal level of prednisone daily. When she feels inflammation coming on, she steps up the dosage for a few days until it subsides, and then steps back down to her usual low dose.

Her NIH doctors have instructed her to remain on the prednisone for the time being because it appears to be working very well. But they would like to eventually get her on something else for two reasons: 1) Prednisone has other cumulative effects on the body that are not healthy, and 2) Prednisone is an immunosuppressant that can reduce the strength of her already compromised immune system. For the time being however, she has been instructed to stay on Prednisone because it appears to be working so well for her. They will explore other treatment options in the future.

What is ahead for Kathi?

Within the next few months, the NIH doctors will have her back for an extended hospital stay at the NIH during which time they will perform more tests. The tests that they perform will contribute to research that will expand medical science’s understanding of CVID. The results will also be used to formulate a particular path of long-term treatment for Kathi.

Before that though, we are going to the beach. Our first vacation in a long time in which Kathi has felt good.

Disclaimer:  I am not a doctor or a scientist so I cannot vouch for the complete accuracy of my word usage or explanations.  I am merely trying to summarize my layman's understanding of things.  No doubt, professionals could provide corrections.  While this might be useful information for others with similar conditions, please always consult your physicians before treating my explanation as anything more than a layman's imprecise summary.

Another Important bit of information:  CVID is not a communicable disease, so she did not contract it from anyone, and there is no danger of her passing it on to anyone else.

A New Life in New Martinsville West Virginia

This month has been a very busy month for the Bills family. I have started two jobs, one as the coordinator for the tutoring center at West Virginia Northern Community College, and the other as the pastor of Trinity Presbyterian Church. So I am now officially a bi-vocational pastor. I will have to write more about that later.

We closed on our new house this past Friday, meaning that we are committed to our life in New Martinsville for the foreseeable future.  I have disliked being a part of that generation that changes jobs frequently.  Perhaps now I can settle down and act like my parents and their parents and work the same job(s) for a couple of decades.

Our new home is on the north end of town.  We have a magnificent view from our back porch of a quaint, seldom used, grass airfield, the river beyond that, and the Appalachian hills of Ohio beyond that.  The house has been an incredible gift from God.  We marvel constantly at how beautiful and simple it is.  To date, we have only moved about 20% of our stuff from the other house.  It is a shame to have to clutter this house up with the other 80%.

New Martinsville is a wonderful, small town.  It has all the essentials very conveniently located within a couple of miles of our new home.  What we cannot find here, we can find by taking monthly trips to either Wheeling or Parkersburg.  Those towns are only about an hour away either direction.  And what we cannot find there, we can find in Pittsburgh, which is only two hours away.

We have been incredibly busy.  Kathi with setting up the house, Spencer with his new school, and me with my two jobs.  The big boys are getting a bit of a break from school, but will have to pick it up after we get everything moved.  They will likely be working well into the summer.  But the consensus of us all is that we are loving being here.

Kathi has been feeling much better recently. This is definitely related to getting a good grasp of how to best treat her immune deficiency with medications and diet.  She is stronger now than she has been in a couple of years.  Some of this may also be due to the fact that we have moved out of an unbearably stressful situation. Regardless, we now live with the expectation that at some point she may begin to spiral down, beginning another cycle of ups and downs that will last several weeks.   Our hope is that if she does begin to spiral down, her up and down cycles will be less extreme, less frequent, and more manageable.

We are praising the Lord for our new church home, for the opportunity to freely minister in accord with my conscience and vows, for our new house, for our health, and for God's provision for our needs.  All green grass has brown patches, and there is no telling how large our brown patches will be.  But for the moment, we are enjoying the foliage, sweet aromas, and beautiful sounds of a fresh springtime in our lives.

Biblicism One and Biblicism Two by Carson and Keller

The following snippet is from a post by DA Carson and Tim Keller found here: http://bit.ly/Ajl3bq

"There is a kind of appeal to Scripture, a kind of biblicism---let's call it Biblicism One---that seems to bow to what Scripture says but does not listen to the text very closely and is almost entirely uninformed by how thoughtful Christians have wrestled with these same texts for centuries. There is another kind of biblicism---let's call it Biblicism Two---that understands the final authority in divine revelation to lie in Scripture traceable to the God who has given it, but understands also that accurate understanding of that Scripture is never supported by bad exegesis and always enriched by the work of Christian thinkers who have gone before."

A Brief Explanation of my Resignation from Winifrede Presbyterian Church

This morning I told my congregation in Winifrede that I have accepted a call to pastor another church.  That church is a small PCA church in New Martinsville WV--Trinity Presbyterian Church.

As I explained from the pulpit, my reasons for leaving are very complex.  The simplest way to explain it, and hopefully the most gracious, is to say that insurmountable differences make it necessary.  Early in my ministry here, the Lord impressed upon me that my call would serve a much more narrow purpose than I had anticipated when I first came.  That was to bring this church to a certain crossroads, at which it could make a choice of direction.  I did not at the time know when that crossroads would come or exactly what it would look like, but my sense of calling was clear.

Earlier in 2011, that crossroads became obvious, and the choice of which direction to take was made.  That made clear to me that my calling here was complete.  When that choice was made, I began asking the Lord for another call.  He answered that request, reassuring me once again that that my calling here was complete.

Whether or not one direction is better than another for this particular congregation is no longer for me to say.  I only know that my denominational vows and the conviction of conscience that led me to take those vows prevent me from traveling the chosen path with them.  I pray that the Lord blesses this congregation on its path.   That it continues to enjoy and grow in the grace of the Gospel, that it grows in its desire to have the Word of God clearly preached from its pulpit.  It has been a light in this community, preaching the Gospel clearly, for over 100 years, and I hope that it remains so for the next century.

I have no regrets about coming to Winifrede. My greatest joy has been to preach the Word to them every week.  The congregation is filled with wonderful people who have poured out their love for us in ways that we could never repay.  So many have been patient with me as their pastor, and they have really stepped in to show love, care and concern for my wife and family as she struggles with her illness.   I have learned so much that hopefully will make me a better pastor to the next congregation.  I only regret that I do not have the personal gifts that would best fit this congregation.  I pray the Lord will bring them a pastor that is better fitted to meet their needs.   I fully trust that my time here has served the purposes, both for me and for the church, that he desired it to serve.  This is his church, and he loves it dearly, and he will continue to work in its midst to accomplish his will.

The Presbytery will take up the matter of my relationships to this church and the next church at the Presbytery meeting this Saturday.  Since we will not be able to move until we have a home in New Martinsville, I have asked the Winifrede Church to continue to allow me to preach until we close on new home in New Martinsville.  That will take between 45-60 days from the time that we have a contract on a home.  We are very close to making an offer on a house.  Until the day comes for us to move, if the church is willing, I will continue to faithfully preach the Word and minister to the needs of this congregation.

May God bless the leaders and members of Winifrede Presbyterian Church.

Jesus Invites us to Pray

The following sermon was preached on Sunday, January 15, 2012 at Winifrede Presbyterian Church.  The Title is "Jesus Invites Us to Pray."

http://www.box.com/s/lk3gbo65s4px5di2sthy

Inscrutable Beauty--A Slightly Different Take on Ecclesiastes

Some believe that the book of Ecclesiastes is only an inspired record of human wisdom, and, as such, it is a record of human error and should be preached from very selectively. I have never accepted that interpretation.  For the longest time, I believed that the book presents human hopelessness apart from God, but that it it also presents the antidote to human hopelessness—God can give life meaning and remove the sense of hopelessness. I believed that the opening mantra of the book—Vanity of vanities, all is vanity—was  an expression that described the unfortunate conclusion of those who have failed to find the meaning and value of life in God alone.

After preaching through the book in recent years, I have begun to think of the book in a slightly different way. While I do believe that the book presents an antidote of sorts to human hopelessness, I have come back to that initial mantra to reinterpret it, not just for the hopeless, but for all—for those who have hope and for those who do not. I believe it should be understood in this way:  Inscrutable, incomprehensible--the  rhyme and reason of life on this earth is beyond our ability to figure out.

According to this interpretation, God intends for life to be inscrutable for all. Even for those who have the advantage of a relationship with God, the ability to figure out life is beyond them. The author demonstrates again and again that life is full of injustice (3:16; 8:14), futility (1:1-11), and death (3:19; 9:3), and it all just comes back around again for everyone (1:4-10; 3:15). The book is very bleak in its frankness. “Face the facts, folks. Life is unfair, as most people understand fairness. Everywhere you look—in your own life and in the lives of others, in the past and in the present—you will find evidence of the inevitable inequities and futilities of our existence on this earth.” Where this interpretation differs from my prior understanding is that this apparent inequity is not remedied, or re-framed in a more palatable way, simply by having a right relationship with God. In other words, it is proper for all people, Christians and non-Christians alike, to face the reality of life’s inscrutability.

The author of Ecclesiastes proposes to lessen this inscrutability by searching for rhyme and reason in different activities and pursuits—in pleasure (2:1-11), in wisdom (2:12-16), and work ( 2:17-22). All three are common retreats even today for those who want to overcome the incomprehensibility and mundaneness of existence. But the author concludes that these things are unable to lift the fog and provide the rhyme and reason that most people search for.

But Solomon does not leave us with mere nihilism. In the centerpiece of the book, the author tells us that “There is a time for everything under heaven (3:1ff).” He says that God has made everything beautiful in its time (3:11). The arranging of all things, even the apparent inequities of our existence, serve the hidden purposes of the Almighty God. Unfortunately for us mere creatures, we are never guaranteed to be privy to those secret purposes. There is in fact a reason that these purposes are hidden from our intelligence—God built the constant need to find meaning and purpose in life right into the fabric of our being, and he has removed those meanings and purposes far beyond our ability to grasp (3:14; 7:13-14; 8:16-17; 11:15). Our lack of ability to locate that meaning and purpose—that rhyme and reason—in our activities on this earth points to one solution and one alone—Simply trust God. Solomon calls this “fearing God.” The book never implies that trusting him will provide the rhyme and reason that we are looking for. The answers and solutions do not come simply because we trust God. The book simply asks us to trust him in the bad times and in the good regardless of the outcome in our earthly existence. We are to trust that everything that happens, everything that we are going through, is beautiful in the timing of God. The only way that we can see beauty in the futilities of life is through trust. This removes from our handbook of solutions the notion that to have a right relationship will make everything turn out all right in the end. Sometimes—in fact quite often, according to the book—God intends for life to be incomprehensibly difficult. And yet, we are expected to trust him regardless. We are never promised that God will make everything turn out all right in the end of our earthly existence. We are to trust him even if life ends in death, injustice, and futile repetition. We are to trust that in the hidden purposes of God, everything is beautiful. Everything is planned perfectly. Everything is moving toward goals that serve the greatest ends. These purposes do not always require a happy existence for his creatures, but they are beautiful purposes nonetheless.

With this in mind, the author encourages his readers to enjoy life as much as possible. Do not be afraid to take advantage of every opportunity to milk this life for all the joy and happiness that you can get out of it. As long as we are trusting God—and keeping his commandments, as he concludes the book (11:9; 12:1, 13-14)——there are no limits to the joy that we should try to find in our earthly existence. This joy may be beyond some people most of the time and most people some of the time. But when opportunity presents itself, enjoy life as much as possible. There is absolutely nothing wrong with that. Solomon asserts that life is God’s gift, so enjoy what you can while you can—work, food and drink, possessions, relationships, etc. (2:24-25; 3:13; 5:18-19; 8:15; 9:7-10). Rhyme and reason are not necessary for us to enjoy life as long as we are obeying God’s commands and trusting him.

[First and second paragraphs have been reworked to reflect some input in the comments below.]

[My interpretation is not as different as I thought it was.  It is likely that much of my thinking was informed by what I learned from Dr. Michael Barrett in seminary.  However, there may be some slight differences in emphasis regarding the word translated variously as vanity, breath, wind, meaninglessness, or (my choice) inscrutableness. Here is his excellent series of lectures on Ecclesiastes:   http://bit.ly/sMZjQ7.]

Today's Sermon: The Elders' Right and Responsibility to Exercise their God-given Authority

Today's sermon was the next in line in our study of Hebrews.  It is providentially timely because it naturally  addresses some controversial issues that are facing our congregation right now.  Several people have expressed concern that I have over the last three years only invited those who are members of Gospel-preaching churches to participate in communion. They feel that this leaves out those Christians who are not members of churches.  In this sermon, Hebrews 13:17 addresses the elders' right and responsibility to exercise their God-given authority, and I make application to the communion controversy that we are now experiencing. I upload it here to give those who missed the sermon the opportunity to hear how I understand the Bible on the matter. Click the link to listen or download.

http://cl.ly/9h37