Health – Page 3 – The Lowedown

August 18, 2014

Nazi’s, Codes and our Ongoing Medical Journey

What does a Nazi and a code have to do with Jen’s medical condition? Read on to find out.

Frederich Wegener was a German pathologist who in 1936 and 1939 was the first person to give a full description of the disease that is now afflicting Jen. It came to be known as Wegener’s disease or Wegener’s granulomatosis. However, in 2006, two doctors investigating Wegener’s past, determined that at some point he was involved in the Nazi regime and was even wanted by Polish authorities for possible war crimes. Given his professional past, there has been a desire by the medical community to refer to this disease as P-Anca Vasculitis rather than attaching it to Wegener’s name. (Read more about Wegener in this 2008 New York Times article)

Jen and I take a day to celebrate her birthday by visiting the J. Paul Getty museum.

By faith, we have scheduled an infusion of Rituxan for Jennifer for this Thursday. I say “by faith” because we still have not been approved by our insurance to cover this treatment. This despite the fact that we have been waiting for 3 weeks for an approval that should probably take 3 days or even less.

So what is the holdup? A code. That’s right, a code. Not a Nazi code but a medical code. Somehow, the insurance company was given a code that represents Jen’s condition that is not accurate. The code is not correct for the diagnosis she has. So we’re scrambling this week to get the code corrected so that Jen can begin the infusions to treat her disease.

While it all seems like a simple thing to correct, somehow when dealing with insurance companies and approvals such as these, nothing is quite as simple as it would seem it should be.

So we ask for your prayers this week. Pray that we would get the approval for the infusion BEFORE Jen gets the infusion. Pray that we would be able to get our doctor and the insurance company to communicate the right information with one another in an expeditious fashion. And lastly, pray that these infusions (she’ll need one per week for four weeks) will put the vasculitis into remission and that Jen will be on the road to managing this disease.

Thanks so much for your continued prayers. We are grateful for your love and support.

Please let us know how you are doing and if there is any way we can pray for you as well.

God Bless!

Dave & Jen

July 29, 2014

The Ups and Downs of Dealing with Medical Issues

Dear friends,

HumeLake1 — Jacob and Joshua prepare to head up to Hume Lake with their youth group!

Jacob and Joshua are at Hume Lake this week with their church youth group so Jen and I are spending the week alone! We are praying that they would have a great time in a great environment and that this week will be pivotal for them in their own spiritual growth and development!

It’s been two weeks since I sent out any significant update on Jen’s health status. We want you to know how grateful we are for you during this time in our family and we wanted to give you an update so you can continue praying for us.

The last two weeks have been filled with more doctors visits, more lab work and even a trek to UC San Diego for consultation with another rheumatologist.

What we know for sure is that Jen has a lung disease known as Non Specific Interstitial Pneumonia (NSIP). In layman’s terms, it means that her lungs are really inflamed. The doctors have been working for months to isolate the source of the inflammation. We know for certain that it’s not viral or bacterial. She doesn’t have an infection that can be treated with antibiotics.

ScrippsSign — The “new” Rheumatology offices at Scripps are located in the basement. Ugghhh!

Instead, it’s been determined that Jen has a vascular disease known as Vasculitis. This is a rheumatological condition, meaning that it is being caused by her own immune system, which is not functioning properly.

A few weeks ago, Jen’s rheumatologist prescribed a steroid for Jen to begin taking in order to deal with the inflammation in her lungs. Though it has really helped Jen to feel a bit more back to normal, there are side effects. For one, the steroid makes it more difficult to maintain your blood sugar level, which is very critical for a diabetic. Jen is working very hard to manage her diabetes. We are really thankful that she has an insulin pump, which has helped tremendously.

The other noticeable side effect is that the steroid has made it more difficult to go to sleep and to get good rest.

So one prayer request is that Jen would continue to maintain her blood sugars while on the Prednisone and also that her sleep would be minimally affected.

The goal is to treat the vasculitis and to get it into remission. To do that, Jen’s doctor wants to prescribe a chemo-therapy grade drug (Rituxan) that has proven to be very effective. We don’t know when Jen will begin treatment because the doctor needs to get approval from our insurance company before administering the drug since it’s quite expensive.

Scripps1 — Jen checks in for her appointment with the Rheumatologist at Scripps. Her diagnosis and proposed treatment plan were confirmed.

The good news is that this drug has shown to have minimal side effects compared to other chemo-therapy drugs. We’re told that most people adjust rather well to the drug, allowing for a more normal lifestyle during treatments.

Please pray that we would get approval from our insurance to cover the drug and that by taking this drug, the vasculitis would be put into remission.

The drug is given intravenously at an infusion center, so no hospitalization will be required. That’s good news for us as we’ve encountered a number of problems with our insurance covering the two different hospital visits that Jen has had over the past few months.

Honestly, one of the biggest prayer requests right now for us is that we would be able to get some of the insurance stuff straightened out. I can honestly say that dealing with insurance and some of the medical bills that they don’t seem to want to cover has been far more stressful than the medical issues themselves.

Pray for us to continue to trust the Lord during this time. Pray for healing and please pray that our insurance would cover the hospital visits for which they are currently denying coverage. I probably don’t have to tell you that the amount for those two hospital bills is quite obscene.

We are so grateful for your prayers, cards and notes of encouragement. It has been so comforting to know that we are not walking through this alone.

God Bless!

Dave & Jen

For the PDF version of the newsletter, click here.

July 14, 2014

The Results are in … Sort of

Hello friends,

Thanks so much for your continued prayers for Jen and our family as we’ve been on this medical journey for the past few months.

Jen is mostly recovered from the lung biopsy that she had on July 3rd. The soreness has mostly subsided, making it easier to sleep at night and providing a lot less discomfort through the day. We are thankful for that.

Last week, we met with a bunch of different specialists who are involved in Jen’s health treatment. We found out from Jen’s rheumatologist that she had received results from Jen’s biopsy. These results were from a sample that was analyzed by the local hospital. There is another sample that was sent out by the surgeon to either the Mayo Clinic or Stanford. We have not heard back about those results.

Jen’s rheumatologist felt she had enough information from the local biopsy results to move forward with an initial diagnosis and treatment. We expect the other biopsy to only confirm what we already know but if something changes, we’ll be sure to update you.

The biopsy results were not a surprise, as they indicated extreme inflammation in the lungs. The doctor has diagnosed Jen with something called P-Anca Vasculitis which is not too common but can be treated. Basically, it’s an inflammation of the blood vessels that can attack and present itself in different organs or systems. In Jen’s case, it presented itself in the lungs. Essentially, it’s an auto-immune issue where the immune system doesn’t shut off properly.

Jen is now on a steroid medicine that is designed to reduce the inflammation. She already is starting to feel better. The down-side to steroids is that it raises your blood sugars, and that is not good for someone like Jen who is diabetic. So please pray that Jen will be able to manage her blood sugars while she is on this medication and that she will not have to be on this steroid medication for too long.

My understanding is that the steroid is really only to help with the symptoms Jen has been experiencing since April. To treat the vasculitis, Jen will more than likely have to go on some kind of chemo-therapy medication to turn off the immune system and reset it.

Please continue to pray with us and for us as Jen has many doctor’s appointments this week. We are hoping that she is finally at the beginning stages of a road to recovery. We are grateful that Jen doesn’t have cancer or any of a number of other very serious diseases, but we also know that what she has is not a simple bacterial infection that can be treated with a few days of anti-biotics.

We are very grateful for your continued prayers and your notes of encouragement. We will continue to keep you updated as we learn more!

God Bless!

Dave & Jen

July 8, 2014

An Update on Jen’s Health

Thanks to all of our friends who have been praying for Jen and her health. If you are unfamiliar with what’s been happening with Jen, please check out our latest newsletter, which explains more of the history of her condition.

Last Thursday, Jen was admitted into the hospital for a lung biopsy. The doctors felt this was necessary to try to diagnose what is really happening with her lungs. The procedure was not long or incredibly complicated, but it did require a short stay in the hospital for recovery.

Jen spent two nights in the hospital and came home Saturday afternoon. She is home recovering and though she is very sore from the incision, she is showing improvement every day.

She has several follow-up doctor visits this week but we don’t expect results from the pathology report really until early next week.

hospital2 — Saddleback Hospital has become very familiar to us in the last 2 months.

Please pray specifically for two things – first, that Jen would recover quickly from the procedure she had. The incision was near the rib cage and I guess there are a lot of nerve endings in that area so it can be quite sensitive to pain.

Secondly, pray that the biopsy would enable the doctors to make an accurate diagnosis and corresponding treatment. Up until now, the doctors have been eliminating things that they know are not part of the problem. Our hope is that the biopsy would show clearly what the issue is and that it can be treated simply and quickly. We hope that Jen’s body will return to normal as soon as possible.

Thanks again for your love and support during this time of uncertainty. Your notes of encouragement, your prayers and concern have meant a lot.

July 1, 2014

Walking Through the Fog of Uncertainty

We sat in the doctor’s office as Jen yet again explained her medical history and recent symptoms to another specialist.

Jen waits patiently in the hospital as she undergoes numerous tests to determine the source of her lung issues.

After 9 weeks of being sick, two trips to the hospital, numerous doctor visits, blood tests, chest x-rays, two chest cat scans and even a bronchoscopy, we were in the office of a Rheumatologist who was recommended to us by Jen’s Pulmonologist. Before April, when Jen started experiencing chest pain and general lung issues, I’m not sure I had ever even heard of some of the doctors we have seen recently.

Jen explained to the doctor that she had cancer when she was very young – 3 or 4 years old. She had a Wilm’s tumor, which is a cancerous tumor on the kidney. By the time they realized something was wrong, the cancer had spread to other parts of the body, including the lungs. Jen explained that in addition to having her left kidney removed, she underwent aggressive radiation treatment and chemo-therapy but she could not say how long those treatments were. After all, it was 40 years ago.

“That could explain some of the abnormalities we’re seeing in your lungs on your chest scan”, the doctor said. “It could be scarring of your lungs.”

The doctor continued to analyze results of the extensive blood work that has been done over the past few weeks. Just about everything that could be tested for that would cause Jen’s symptoms have all come back negative, making a diagnosis and corresponding treatment somewhat difficult.

In fact, Jen’s pulmonologist now believes Jen’s symptoms (low grade fever, chest tightness, dull aches in her upper back, dry cough, lack of energy) are the result of some kind of auto-immune issue, which is why we now found ourselves in the office of this doctor of Rheumatology.

The doctor continued to analyze Jen’s chart and lab results. “I see you’re diabetic.”

Jen explained that she has been diabetic since she was about 9 years old. We believe that her pancreas may have been damaged by her radiation treatments a few years prior, causing her to become an insulin dependent diabetic.

After perusing the data that filled her screen and taking numerous notes, the doctor finally turned to address us with her assessment.

“Your medical history is quite tricky. We know that there’s something going on because some of your numbers are quite high. They tell us something is happening with your lungs but they are not specific regarding the problem.”

The doctor then shared that she suspects Jen’s issue is most likely rheumatological.

“Before I determine a specific treatment, I recommend that you get a lung biopsy so we can further pinpoint what exactly we’re dealing with.”

And with that, we were referred to yet another specialist, a Thoracic surgeon. After several more doctors visits, more lab work and a meeting with a pre-op nurse, Jen has a lung biopsy scheduled for this Thursday at 10:30 a.m. PST. The procedure is not complicated but will require her to be in the hospital for several days of recovery. Our hope is that this will lead to a diagnosis and a corresponding treatment plan.

Jen poses with one of our former UC Davis students at a recent good-bye party for another one of our former students who is following God’s call overseas.

We’ve found ourselves traveling a road that is a bit murky and unknown. Our plans are loose, yet we’re trying to maintain as much normalcy to our lives as possible.

We honestly don’t know what’s next or what these tests might reveal but our hope and trust is in the Lord, who is able to do immeasurably more than we can ask or imagine. He is good. He is powerful. He is able to do the miraculous.

Would you please pray with us and for us? Please pray for the Lord to work mightily in Jen’s body to bring about healing, whether that is through conventional medical treatment or through God’s miraculous intervention.

We are incredibly grateful for you and your prayers for us at this time. Your prayers and notes of encouragement mean more to us than you can imagine.

Click here to download the pdf version of The Lowedown.

April 28, 2014

The Best Laid Plans…

Click here to view the pdf version of The Lowedown.

“The best laid plans of mice and men often go awry.”

This oft-quoted line comes from a poem written by Robert Burns in 1785 after he inadvertently plowed through a field mouse nest. The words, penned with sadness, communicate the universal truth that one cannot plan for the unexpected. This line aptly describes our week in Nashville.

For months, Jen and I had been preparing for a week in Nashville, where we would have the opportunity to meet up with fellow Cru City Millennial workers for the first time. In addition, we were looking forward to challenging our thinking on Christianity and Culture by attending the Q Conference later in the week.

We thought we had worked out all the details. We were blessed by Jen’s parents, who visited for Easter and stayed through the week to watch our boys.

I even worked feverishly through Spring Break to renovate our guest bathroom in preparation for my in-laws’ arrival. That whole process in itself is probably illustrated by the above quote given the number of unexpected situations encountered that threatened to keep me from completing the project on time. I’m happy to report though that the renovation was officially completed in the afternoon on Easter Sunday mere hours before our departure.

We arrived in Nashville as scheduled on Monday where we had the opportunity to meet our new colleagues for dinner for the first time.

We were treated to some great live music from a few Nashville Millennials

The next day was a full day of meetings and connecting. For me, it was invigorating to increase my vision for what we will be doing here in Orange County to reach Millennials. That night, we were treated to some live music at the home of one of our Cru colleagues who lives in Nashville.

The next day was the start of the Q conference. The Q conference was started 8 years ago by Gabe Lyons as an opportunity for Christians to hear from numerous leaders and experts who share thoughts and insights on 7 major segments of culture: Media, Business, Government, Social Sector, Education, Arts & Entertainment, and Church.

The first day was packed with speakers who talked on a wide range of topics. We were even treated by a surprise appearance from Carrie Underwood and her husband Mike Fisher who shared about the challenges and their commitment to marriage. Though a little like drinking from a firehose, we were eating up all of the great content.

CarrieQ — Q Founder Gabe Lyons interviews country star Carrie Underwood and her NHL Hockey player husband Mike Fisher.

That’s when our plans got derailed. Jen shared that she was experiencing some chest pain and wanted to go back to the hotel and rest. We were supposed to meet up for dinner with some friends from our University of Arizona days who were now living in Nashville. But Jen’s chest pain got worse, making it harder to breathe. We decided to go to the ER.

As many of you know from experience, the ER is rarely a brief experience. For Jen, she was subjected to just about every test imaginable to determine if there was something wrong with her heart. Thankfully, every test came back clear. It was determined that the source of the chest pain was likely caused from having a case of walking pneumonia.

Jen was eventually released with antibiotics and she’s doing much better. We weren’t able to make our dinner appointment, and we missed the rest of the Q conference. But we made our flight home, thankful that it wasn’t something more serious and also grateful for the time we were able to spend with our new co-workers.

Though the week didn’t go exactly according to plan, we still left Nashville with an increased vision and excitement to reach Millennials. It was great being with others like us who are venturing into this new arena.

We are grateful too for your partnership. Please pray for us as we continue to prepare for this new ministry to which the Lord has called us. Pray for our plans to be the Lord’s plans and that we would be able to trust Him when things don’t go “according to plan!”