I read what I could over the weekend, but I still had a life to live, and I didn’t want to drown in an information overload. I made a list of places to contact and took it with me to work on Monday.
The article I downloaded had four coauthors, and one was listed as the contact person, along with his email. Between patients on Monday, I sent him an email, stating that I had been diagnosed with this, that my doctor didn’t have the expertise to treat me, and did the author know of any place in the southwest where they had some experience?
Five whole minutes went by, and I didn’t get a response. So… I googled the next author listed in the article, Dr. C. I found out where she worked (Pittsburgh, PA), called the hospital there, explained as best I could the reason for my call, and I was transferred to Dr. C’s nurse. I left a voice mail essentially stating what I had said in the email. I doubted I would hear back.
That evening and the next morning we had a really wicked snowstorm. Most of my patients cancelled in the morning since the roads were so bad. I had some time to make some calls. First up: Mayo Clinic in Scottsdale, AZ. The first few times I called, I just got a recording: “We are experiencing a high call volume. Please try again later.” Click. Not even an option to hold. Then I got a human. I got transferred to nephrology, where I was put on hold for forever. Then I was transferred back to whomever it is who deals with new patients. I was on hold there for nearly 20 minutes. Then I got disconnected.
Are you freakin’ kidding me here? Incredibly frustrated, I called back, and said I was a new patient. I got transferred again. Was on hold again for over 15 minutes when … I accidentally pulled the phone off the desk and disconnected myself. I couldn’t make myself call back. I knew it was a waste of time.
I called two other nephrology centers, in Dallas and in Denver. All I could do was leave a message with a receptionist. It’s been about six weeks. Gee, think they’re going to call?
Then the most miraculous thing happened. I had a missed call on my cell phone (I was with a patient). I can’t even express the overwhelming joy I felt when I listened to the message. It was Dr. C, the coauthor of the article, calling me from Pennsylvania! Even as I’m typing this now I’m shaking my head in disbelief. Not only did she call me, she left me her phone number. I called her back as soon as I could, assuming I would get her voicemail at work. NO. SHE HAD GIVEN ME HER CELL PHONE NUMBER.
We talked for about 10 minutes, and she said she’d be happy to work with my doctors here. She gave me her email address and asked that I send her the biopsy results, which I did as soon as I got home, along with my lab work spreadsheet.
She emailed me back the next day (THE NEXT DAY!) and stated that she was copying her colleague, who was another of the coauthors of the article, on her reply.
This was her explanation of this disease: “This disorder is related to a “rogue” plasma cell line. Plasma cells are our cells that produce our immune protective proteins. Once in a while one specific type over produces without specific purpose and because the kidney filters all of the blood, some of this excess protein can be deposited in the glomeruli (tiny tangle of capillaries that filter the blood and allow waste products to pass into the urine but typically the filter is not so porous as to allow the blood proteins to pass thru). When extra proteins are “stuck” or deposited, this creates a discontinuity in the filter and proteins begin to spill into the urine. Over time the discontinuity leads to scarring (also called sclerosis).
The treatment is aimed at ways to non-specifically help close the “ leaks,” use of medications such as ACEI or ARBs in particular- are you on these? And control swelling or edema with diuretics as needed. Keep BP less than 130/80.
But these will not “cure” this. But there are treatment options that can help. First would be to make sure your hematologist does not think you have a condition like multiple myeloma. This often involves a bone marrow biopsy to assess the number of plasma cells. SO VERY IMPORTANT TO MAKE SURE THIS IS NOT THE ISSUE FIRST.”
Holy crap. This actually made sense. I could understand this. She asked me for some information regarding other test results. I got the information from my local nephrologist and sent that off to her. Dr. C stated that the regimen that they had been using with success was a chemo drug called Rituxan and prednisone. She said that hematologists/oncologists were very familiar with giving Rituxan. I reached out to my hematologist.
And that was when I became the hot potato.