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
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