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.

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