Starstruck

Waiting at UCLA to meet with the Rheumatologist
Waiting at UCLA to meet with the Rheumatologist

This last week marked the one year anniversary of the current health journey that we have been on. I remember vividly being in Nashville when Jen began experiencing sharp pains in her chest that landed her in the ER. I remember my friend Mark Short, who was a student years ago during our University of Arizona days and who also happens to now live near Nashville, adjusting his schedule on a moment’s notice to come and visit us in the hospital. I also remember my fears and anxieties being relieved when the doctor told us that he believed that Jen was suffering from walking pneumonia.

Of course that was just the beginning of the journey. There have been 5 hospital stays, countless doctor visits, chemo-therapy infusions, biopsies, endless tests and procedures and enough blood drawn it seems to fill an empty blood bank.

After Jen’s last flare in January landed her back in the hospital for a week, we were advised by our Pulmonologist to seek more advanced medical care and treatment from experts at a teaching hospital. We ended up setting up some appointments at UCLA and that has been very helpful for Jen in the course of her treatment.

Last month, we had two appointments at UCLA that were helpful and encouraging. The first appointment was scheduled during the first day of spring break so it became an all day family event. We made the best of our time in L.A. by spending a day at Universal Studios, which the boys were pretty excited about.

Joshua (left) and Jacob in front of the Scooby Doo Mystery Machine at Universal Studios.
Joshua (left) and Jacob in front of the Scooby Doo Mystery Machine at Universal Studios.

The next week we were back at UCLA for a full day of tests followed by a consultation with the Pulmonologist. Jen got a CAT Scan of her lungs and also had a Pulmonary Function Test.

When we met with the doctor, he showed us the image of the CAT Scan and compared it side by side with the image of her lungs when she was in the hospital in January. The difference was noticeable. Her lungs now look more clear.

However, Jen’s Pulmonary Function Test results showed that there is still some kind of restriction. The doctor said that could be the result of some lingering inflammation or it could be the result of nearly a year of being pretty inactive and sedentary. We remain hopeful that Jen’s lung capacity will increase over time.

Near the end of our appointment, we met with the head of the Pulmonary group, a doctor named John Lynch. Apparently, Dr. Lynch is one of the leading experts on Vasculitis in the United States. He told us that Vasculitis is pretty rare, with only 3 to 7 cases per million each year. That means there are probably only about 1000-2000 cases of it each year in the U.S. Because of that, he said it’s good to get treatment from doctors who are very familiar with the disorder.

He also told us that based on his observations and Jen’s test results, he thought she might be in remission. That was certainly good news – probably the most positive news we’ve heard in the last year!

Later in the week, when Jen met with her local Pulmonologist, he seemed star struck when Jen told him that we had met with Dr. Lynch. His comment, in an excited tone was, “You met with John Lynch! Wow! I spoke with him at a conference once!”

After our appointment, Jen and I went to dinner at a local mall in hopes of avoiding the rush hour traffic on our way home.

Dave & Jen pause to take a picture with Millhouse from the Simpsons at Universal Studios.
Dave & Jen pause to take a picture with Millhouse from the Simpsons at Universal Studios.

As we were exiting the restaurant, I walked right by Bob Newhart, who was walking with his wife into a different restaurant. Jen had already walked past him without noticing. Starstruck, I caught up to her and in an excited voice exclaimed, “Jen, we just walked right past Bob Newhart!” I guess it’s just a fun footnote of our trips to L.A.

Jen is continuing with her current treatment and continues to lower her dosage of Prednisone, which is now being reduced at a slower rate. She is now taking 9 mg per day.

The main issues now are continuing to build lung capacity, while hoping and praying that the many side effects of Prednisone will begin to subside. Among the side effects we are hoping will dissipate are blurred vision, bursitis in the knees, water retention and weight gain, and loss of hair.

Please pray with us for Jen’s continued recovery. Pray both for increased lung capacity and also that her body will be healed of the many negative side effects of Prednisone. Pray especially for perseverance as the recovery process often feels like 2 steps forward and 1 step backward.

Please pray for healing from a minor surgery Jen had to remove a skin cancerous mole as well as a tooth extraction and permanent implant that will be coming up in the near future.

As always, we are grateful for your continued prayers, support and many notes of love and encouragement!

Click here to read the pdf version of The Lowedown.

A Temporary Setback

(NOTE: this is a follow up to my earlier posts on 10/13 and 10/22)…

Click here to read the pdf version of the Lowedown

Recently, I was watching an episode of Dancing with the Stars. Jen and I enjoy watching the transformation that takes place in the lives of people who have no dancing experience and yet are able to learn to perform sophisticated dance routines at a high level.

The theme of this particular week was “your most challenging year”. One contestant mentioned the year that he went to jail. Another contestant mentioned the year that her dad passed away. Still another contestant mentioned being bullied as a teenager.

I think I can confidently say that if I were on that show and had to respond to the theme of that week, that this year would definitely be listed as our most challenging year.

It’s been a six month journey in getting sick, trying to diagnose the problem, getting a diagnosis and then beginning treatment. Last month, Jen had just finished 4 weeks of chemo-therapy infusions that were designed to suppress her immune system and put her vasculitis into remission.

Everything seemed to be going well. Jen was responding well to the treatment and the blood work indicated that her kidney functioning, which had been declining over the summer, was beginning to stabilize.

But about 2 weeks after her last infusion, Jen started to experience some symptoms of shortness of breath, accompanied by some low grade fevers. When we met with her rheumatologist, her initial words were, “this is not good.” She was concerned that Jen might have an infection and with a compromised immune system, that could be extremely dangerous.

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Jen spent 10 days in the hospital getting tests and being treated for a vasculitis recurrence.

Jen was admitted to the hospital and remained there for 10 days. Tests indicated that there was no infection, which means that what Jen was experiencing was a recurrence of her vasculitis. After all the treatments that she had received, this was a bit of a bummer.

To combat this vasculitis flare, Jen had to be given very high doses of Prednisone intravenously for several days. Once the doctors were confident that the vasculitis flare was under control, it took them several days to taper Jen down to a Prednisone dosage that was low enough to take at home.

Jen has now been home for a week. The good news is that her kidney function, blood work and chest x-ray all look good and for now the vasculitis symptoms seem to be under control. The hard part is that Jen is on a higher dose of Prednisone than when she first started treatment in July, so in some ways, it feels a bit like treatment is starting completely over at the beginning.

Jen’s rheumatologist tells us that the treatment phase for this disease will likely last a year. After that, if there are no other setbacks, we can move into a maintenance phase. Maintenance would require Jen to take low doses of an immunosuppressant drug in order to keep the vasculitis from recurring.

During this challenging time, we’ve been overwhelmed by the love and support from family, friends and co-workers. Thank you for praying for us and for serving us in so many ways, whether through cards, notes of encouragement, timely meals for our family or an additional financial gift. We are so grateful for you.

We would greatly covet your continued prayers for us as we continue to navigate this journey the Lord has us on.

Specifically, pray for Jen to remain healthy as her immune system will be compromised until well after the first of the year. Pray also that there would be no recurrence of the vasculitis as Jen continues to be tapered off of Prednisone, which has many undesirable side effects.

Pray too for us as we try to balance our desire to build on our new ministry while continuing to deal with Jen’s ongoing disease and recovery.

Thank you so much for standing with us. We are eternally grateful!

Dave&Jen2

Home Sweet Home!

After 10 days in the hospital, Jen finally was released today and able to come home. We are very excited and happy to have her home with us.

We would still very much appreciate your prayers for Jen. Vasculitis is a tricky disease to get a handle on. It’s an auto-immune disorder so there really is no cure but can often be managed with a combination of medications. Finding that combination is the tricky part and our rheumatologist tells us that this phase, which she’s calling the treatment phase, can last about a year. 

If there are no setbacks, the hope is to move into a maintenance phase where the vasculitis can be kept in check with a minimal immuno-suppressant. Getting to that maintenance phase can often have setbacks like the one Jen just had. The hope is that once we get to a maintenance phase, Jen’s lifestyle will begin to resemble more of the activities and commitments to which she’s been accustomed. 

So please continue to pray for the following:

  • Pray that Jen would remain healthy for the next 5 months while her immune system will be compromised because of the infusions she recently received.
  • Pray that Jen would begin to feel more normal now that she is out of the hospital. She’s pretty tired. We think that’s a combination of not getting the best rest, being confined to a bed for 10 days, and being restricted in her diet because she’s diabetic. Jen told me that she was constantly feeling hungry.
  • Pray that she would not have a recurrence of the vasculitis as they continue to taper her steroid dosage down over the next several weeks.
  • Pray that we would continue to put our hope and trust in the Lord. The last 10 days have been a roller coaster of emotions. Pray that we would be able to experience some spiritual and emotional rest.
We are so grateful for you. Your prayers and notes have sustained us during this difficult time.

If you haven’t checked out Jen’s CaringBridge site, you can do so by going to: http://www.caringbridge.org/visit/jenlowe

Thanks again for your prayers and support!

A Setback for Jen’s Recovery

Jen-ReaganLibraryFriends,
Thank you so much for your continued prayers for Jen. Please, please, please continue to pray for healing.Today, Jen was readmitted to the hospital for more tests. Let me explain why.

After Jen’s last infusion 4 weeks ago, she had some blood work done that seemed to indicate that things were going well with her lungs and her kidney. We were encouraged.

However, 2 weeks ago, Jen unexpectedly started experiencing some low grade fevers off and on and also was dealing with some shortness of breath.

Last week we visited Jen’s rheumatologist who was concerned when Jen shared about the symptoms she was experiencing. The possible causes of her symptoms could be a return of the vasculitis or maybe an infection that she has developed in her lungs.

Today, Jen saw her pulmonologist who determined that her lung functioning is only at about 50%. Because of that, Jen has been readmitted to the hospital for further testing to try to determine the cause of her lung issues.

Would you take a moment and pray for Jen right now? Pray that the doctors would have wisdom to correctly diagnose what is happening. And pray that she would be able to get treatment to correct her condition. Please pray that the Lord would heal her and restore her health.

We serve a mighty God who is able to do exceedingly more than we ask or imagine. Pray that God would be glorified through Jen and that He would choose to bring healing to her body.

Because Jen’s health issues have been ongoing, we’ve decided to set up a Caring Bridge site where we can post regular updates about Jen and her health. Please check out her site and register to receive updates whenever a new journal entry is posted.

The site is: http://www.caringbridge.org/visit/jenlowe

Thank you so much and God Bless!
Dave & Jen

The Waiting Game

Dear Friends,
Jennifer and I are so encouraged and overwhelmed by the love and support that we have received during these last few months as Jen has been undergoing tests and treatment for her Vasculitis condition.

Many have asked how Jen is doing now and what lies ahead.

Jen-ReaganLibrary
After four infusions, we’re waiting to see if the medication has taken effect.

The short answers are that Jen is doing well and we’re not quite sure what is next. Please read on for the more full explanation of what is happening.

Jen continues to do well and feel well as a result of the Prednizone (steroid) that she has been taking for the last 9 weeks. The steroid has reduced the inflammation that was causing a lot of pneumonia-like symptoms. As a result, she has felt a lot more like herself.

But the goal now is to get off the steroid (because of some of its negative side effects) without seeing the symptoms return. To do that, she’s received 4 weekly infusions of Rituxan, which is designed to put the vasculitis into remission so that when she is tapered off the steroid, the symptoms do not return.

Last Wednesday Jen received her fourth and final infusion. Her doctor also has begun tapering her off the Prednizone.

Where are we now in the recovery process? We don’t really know. We really have to take a wait and see approach.

Jen had some blood work done this week which we hope will show positive signs with many of the markers that the doctors look for when analyzing her condition. Specifically, they’ll be looking at inflammation rate, kidney functioning and the presence of certain anti-bodies.

Over the next 6 months, Jen’s immune system will begin to break down as a result of her infusions. In about 3 months, she should reach the low point of her immune system being compromised and as it builds itself back up, the hope is that the vasculitis will not return.

Please continue to pray with us. Specifically, pray that the Rituxan medication would be effective and that her symptoms would not return as she is slowly tapered off of steroids.

Pray too that Jen would not get sick during the time that her immune system is compromised.

Lastly, please continue to pray that we would trust the Lord as we navigate the various issues associated with this disease.

Thanks again for your continued prayers and your notes of encouragement. We feel loved!

God Bless!
Dave & Jen

The Fall Forecast

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Dave, with Joshua and Jacob on the USC campus early in August on Dave’s birthday!

Each day, sometime after I (Dave) wake up, I grab my phone and the first thing I do is __________ ? Many of you probably would think that I check my e-mail but that is not correct. One of the first things I do when I grab my smartphone is check my weather app. I want to see what the forecast is for the day. How hot is it going to be? Will I need to run the air conditioner? And will it be so hot that I need to think about extra water for the grass and plants? And most importantly, is there any chance of rain in the forecast?

For much of California, we have been in extreme drought conditions for the past 2 years. Our snowfall in the Sierras in 2013 was about 25% less than average and 2014 was much worse at only about 30% of our average snowfall. (see this link for satellite images on the California drought: http://goo.gl/U56uFH)

Earlier in the year, forecasters had been predicting El Nino conditions for this winter which would bring the promise of above average rain and snow in the west. However, those forecasts may have been premature and the possibility of another dry winter still looms. (This article from the IndyStar explains: http://goo.gl/HNSyf6)

Water is essential for life and the lack of water can complicate normal daily activities and routines. The forecast for this fall calls for more dry weather but we’re praying for rain and snow to help bring relief and normalcy back to this region.

In our personal lives and ministry, we’re also forecasting what life and ministry will look like for the fall.

Typically, the fall is a busy season. The kids head back to school and with it comes lots of homework and other activities.

Jen is usually busy with travel for her Leadership development role and of course, we have our local ministry with Millennials that we are developing.

However, the forecast for our fall looks different than normal. Recently, Jen has been getting infusions of a chemotherapy grade drug that is designed to put her vasculitis disease into remission. As I write this, she has received 3 of the 4 infusions, with her last infusion next week. Over the next couple of months, her immune system will be broken down and rebuilt. This is normal and expected but the result will be a compromised immune system for several months.

Jen’s third Rituxan infusion bag. Though it looks like simple water, we’re trusting that the Lord will use this to reset Jen’s immune system and restore her health.
Jen’s third Rituxan infusion bag. Though it looks like simple water, we’re trusting that the Lord will use this to reset Jen’s immune system and restore her health.

After consulting Jen’s rheumatologist and learning how the process works, we realized that traveling this fall would not be wise with a compromised immune system.

As a drought impairs normal activity for those who are affected, our lives and ministry have been affected by Jen’s condition. Ironically, the drug that Jen is taking looks as clear as water and we’re praying that the infusions have the desired effect on Jen’s immune system.

So while the short term forecast means we’ll be grounded and working more locally and virtually, we’re hoping and trusting the Lord to bring some healing and restoration to Jen so that the long term forecast might bring a return of normal activity to our lives.

Whatever the circumstances we’re in, our prayer is that we would glorify Him with our lives and that He would bear fruit through us as we serve Him in whatever capacity we’re able to serve.

Thank you for your continued prayers and encouragement. Please pray with us, that the Lord would “bring the rain” in our personal lives as well as this region in which we live.

We are so grateful for you and we thank the Lord for you and we pray for the Lord’s blessings in your life as well. And we invite you to share your needs and requests with us so that we can pray for you as well!

Click here to read the pdf version of “The Lowedown”

One Down, Three to Go

Dear Friends,

2014-Aug-BarnardsLast Thursday (Aug 21), Jen had her first infusion of Rituxan. Thank you for praying. The infusion went well in that there was no adverse reaction and no noticeable side effects. Though this is a chemo-therapy grade drug, the good thing about Rituxan is that most people adjust well to the treatment and don’t experience any adverse sickness or reaction.

Jen was able to come home and pretty much resume normal activities.

Today (Wednesday, August 27th), as I write this, Jen is receiving her second infusion. After today, she’ll have two more infusions and then we will be able to see if the medicine is working.

Please continue to pray with us that the Rituxan would put this disease in remission and that her vital organs, lungs and kidney, would not be adversely affected.

Thanks for your continued prayers and concern.

God Bless!

Dave & Jen

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.
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

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.

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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.

 

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