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
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.
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.
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!
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.
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”
Last 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.
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)
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.
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.
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.
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.
Dave & Jen
For the PDF version of the newsletter, click here.
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!
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.
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.
We sat in the doctor’s office as Jen yet again explained her medical history and recent symptoms to another specialist.
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.
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.