Let all Who Take Refuge in You Sing for Joy...

Last night, I spent some time going through the Psalms, noting passages that refer to God as a high tower, shelter or refuge... hiding us under the shadow of his wings until the storm passes.

Knowing that I was struggling with fear, I wanted to fill my heart and mind with reassurances from scripture that God is a "very present help in times of trouble" and that when I'm weak - his grace strengthens me and is sufficient for my specific needs.  I wanted to have God's word in my heart as I slept and to have it in my mind to draw from the next day when I knew that I would need it to battle the fear and anxiety I was experiencing.

We woke up early this morning and left the house while it was still dark and drove to Los Angeles for our 7am check in.  We got to the hospital, was admitted and got settled into the prep room where I was able to speak with the interventional radiologist who was going to do the procedure.  He went over how he was going to do the biopsy and covered all the risks and possible negative outcomes.

He said that he would need to take some initial CT scans to get a read on where the nodules were and then decide which lung to biopsy and which angle to use.

The nurse wheeled me into the CT room, transferred me to the CT table and hooked me up to an IV, oxygen, several electrodes, a blood pressure cuff, and a pulse oximeter - so many wires and tubes!

The doctor took a few scans and then, after consulting with my pulmonologist, came back to me to tell me that he wasn't going to do the biopsy!

He told me that both the mass in one lung and the nodule in the other were not only smaller, but "significantly smaller" than they were earlier this month on my first CT scans.  He said that he didn't think the risk and trauma of going through the biopsy was worth it - and "didn't want to put me through that."

He assured me that the nodule/mass were not cancer but due to inflammation and consistent with Wegener's.  When I asked him if the rheumatologist needed the biopsy information to make an accurate diagnosis, he said that she had enough lab results to confirm it.

Then, the nurse came back and we did everything in reverse: she unhooked me from all the tubes and wires and wheeled me back to the prep room - I got dressed and was free to go!

Just a quick example of how God met me this morning:  when I woke up, I took my pulse / blood pressure and my resting pulse was 127 - very high!  And for a couple hours before getting admitted, I could feel a panic attack lurking under the surface. During our hour in the waiting room, I rehearsed the scriptures I had been meditating on last night and prayed.  When I got to the prep room, my heart rate was 111 - still high, but much better.  As I was on the CT table hooked up to all the tubes and wires - my heart rate went down to 79.  Proof that God gives us what we need when we need it. He was so gracious and merciful to give me peace at the most fearful and critical time!

I am so thankful for all my family and friends who have cared for me and prayed with me!  I really have felt carried and strengthened by your prayers and feel God's grace covering me.  And I am grateful to God who intervened on my behalf and gave me more than I could even think or ask!

Please Pray.

I have a lung biopsy scheduled for this Monday, Oct. 22nd.  The pulmonologist did agree that the CT guided needle biopsy was the best choice as fas as it being a less invasive / high yield procedure.  If for some reason the tests come back inconclusive, they will do the surgery type biopsy.

So... Please Pray!

1. the biopsy goes smoothly

2. they get enough tissue to make a conclusive determination / confirmation of Wegener's (so that we   don't have to do another, more invasive procedure).

3. there won't be any complications (like a collapsed lung)

4. I would recover quickly

I check into the hospital at 7am. The procedure is from 9-10 and then after recovery, I can go home in a couple of hours.

I should get the results in about a week.

Thanks for praying!

Good News.

Had my follow up with the ENT this afternoon. He said the CT scans look fine; there is no cartilage damage from the four months of inflammation and bacterial infection or evidence of Wegener's nodules/damage in my sinuses.  One of the consequences of Wegners on the sinuses is a perforated septum and a deformity called "saddle nose" where the bridge of the nose collapses and you need reconstructive surgery.  He said that he doesnt see any evidence of my needing to worry about this.

This is great news!  He said that he would stay on my case and monitor things while I'm in treatment but at this point, I am done seeing him.

Thank you all for praying. It was such a relief to finally get a piece of good news!

Therefore we do not lose heart...

Two books that have been so helpful to me during this time:

This is a compilation of writings from classic and contemporary authors regarding God's purposes and provision in suffering as well as what it means to trust God in times of trials and pain.

This book is a one year devotional filled with daily readings from scriptures that touch on themes of God's sovereignty, suffering, looking to God -etc.



2nd Corinthians 4:16.

Quick Update

The big appointment / consultation that I was supposed to have with my rheumatologist today has been postponed.

Last Thursday, I met with a pulmonologist to go over the CT scans of my lungs. He was recommending a lung biopsy to rule out cancer and to get a confirmation of Wegeners.  He also wanted to share my "very interesting case" with doctors at a lung conference this Wednesday and consult with a roomful of pulmonologists who could give input.

I am waiting to hear back from him with a recommendation of which type of biopsy will be most effective.  I'm hoping for a CT guided needle biopsy because that's less invasive than surgery and involves only a one day stay in hospital.  If the nodule is too difficult to get to with that method, then they do a  VATS - video assisted surgery - and I will need to be in the hospital a few days.

After we receive the biopsy results, the rheumatologist will be able to see the severity and extent of the disease and come up with a treatment plan.

I still have an appt. tomorrow with an ENT - to track the sinusitis and to determine any cartilage damage to my nose from the months long inflammation.

One of the challenges is going to be that I have to watch every little symptom - because it can be a symptom of the progression of the disease - and they appoint a specialist for different parts of the body to oversee and monitor it.  I'm at three different doctors right now... would be nice to keep it there!

Please pray for peace, patience, strength and endurance as we go through all the necessary steps to get a firm diagnosis.

Diagnosis.

After four long months of battling a severe sinus infection that just would not go away, and having an array of puzzling symptoms show up in August that was very much like Lupus or Rheumatoid arthritis, (debilitating joint pain and muscle weakness) we finally have an initial diagnosis from the Rheumatologist:  Wegener's Granulomatosis.  (it's a form of vasculitis).

It's a rare auto-immune disease in which the body mistakenly attacks the blood vessels, causing them to become inflamed - and the inflammation can cause damage to various organs: but mostly the upper respiratory system, lungs, and kidneys in my case.  I am also experiencing joint pain - but it will not have the damaging effects that RA has.

I have a CT scan scheduled this Thursday for my sinuses and lungs - there seems to be a small nodule detected on my chest x-ray - so they want to investigate that further to determine if there has been any lung damage.  I'm really hoping to avoid a lung biopsy...  And the sinus CT is also to determine damage from the summer long illness.  Initial tests suggest that I do not have any kidney damage at this time, which is great news!

Doctor said that I have a mild case and that treatment will take 2-3 years to try to achieve a remission.

There are three basic drugs used to treat Wegener's: Prednisone, Cyclophosphamide and Methotrexate and we're hoping that my illness isn't severe enough to use the Cyclophosphamide - as it is a chemotherapy drug with serious side effects.

We are so grateful that it seems to have been caught early - this is a serious disease that results in fatality if left untreated.

I was able to get away for almost two weeks - Ron's parents graciously offered to fly me out to Michigan so I could rest and gain some strength for the upcoming season of lots of doctors, tests and treatments.  I had a wonderful time soaking up the beautiful scenery, enjoying the lake and the fall colors, taking long walks and watching beautiful sunsets.  I had long stretches of time to think, pray, study, journal and to just be alone and quiet before the Lord... getting strengthened by his grace.

I am back home now and ready to begin this journey - leaning heavy into the Lord and finding that his grace is sufficient in my weaknesses.

Photos from Holland Trip....

 Our first apartment was in this building - just to the right over a store.

 We lived in a little house on a street very much like this one - just two blocks from the lake.

 During my trip to Holland, I  spent many mornings here at a small park on Lake Macatawa, by the channel to Lake Michigan.

 This was my view to the right of the photo above.

 This is Kollen Park  - where I took Zach as a baby - we lived just two blocks away.

 Here's one of my favorite restaurants on the water.

 This was my view during dinner.

Beautiful bike paths everywhere in Holland! This is just out front of Ron's parents' home.

I took many quiet walks here while I was away.