Look at My Ankles!!

In the summer of 2001, David would come home from work, change his clothes and say, �look at my ankles.� There was an indention line around his ankles where the elastic in his socks had been. �Is the elastic too tight? Are those new socks? Have you been sitting all day at work?� were some of the puzzling questions I would ask. Each time the answer was �no.�

As fall wore on, the swelling rose up David�s legs. After visiting our family doctor, he took David off all medications, did an EKG (which noted changes since the baseline EKG) and was perplexed!! The doctor noted � it�s either heart or kidneys!! Next, the doctor sent him to a cardiologist due to the change in his EKG.

David did a stress test and sonogram. The cardiologist performed a heart catheterization and came into the waiting room to say to me, �I�m surprised to say that I didn�t find anything unusual!�

Next, the family doctor sent David to a nephrologist in mid-January 2002. Nephrotic syndrome was diagnosed. Dr. Kuo, the nephrologist, tried different medications to no avail. The symptoms continued to worsen. In early April 2002, she said that the only way to find definite answers was to do a kidney biopsy. The middle of April, a kidney biopsy was performed and to the nephrologist�s surprise amyloid deposits were found.

At that time, I spent hours on the internet researching and reading. We made an appointment to go to Boston University School of Medicine for an evaluation.

Fervent praying became my favorite pastime. I began to contact all of my prayer warrior friends and family to ask for prayers.

Dr. Kuo sent David to the hematologists, Dr. Stone and Dr. Cooper, at Baylor University Medical Center. They are very respected hematologists in the Dallas area. I asked Dr. Cooper if he had ever treated amyloid patients and he said, �a few.� To myself, I thought, �a few won�t do!� By this time, David could gain up to 8 pounds of fluid a day (protein count was at 9000) as the amyloid deposits were creating leaks in his kidneys and blood vessels.

Dr. Cooper then referred us to Dr. Brian Berryman of the Blood and Bone Marrow Transplant Unit (214-370-1500) at the Baylor University Medical Center in Dallas. Dr. Berryman is a young, knowledgeable, personable, caring doctor who had treated amyloid patients. We had found the answer to our prayers!!

We cancelled our trip to Boston and knew that we had made the right decision to stay in Dallas.

By now, it was the first of July, and after more tests, meeting with all the required personnel, and more consultations with Dr. Berryman and his staff, we were ready to go!! A high dose of chemotherapy � Melphalan and autologous stem cell transplant!!

But, NNOOOOO!!! Our insurance company, Unicare, denied coverage for the procedure. We resubmitted the claim and they said we had failed to try other treatments and if we did that first, then they would cover the procedure. (They obviously were treating this as a cancer.) We did not want to go through other treatments and have David weakened by those procedures. David is a very healthy and in shape person other than his amyloid buggers!!

We resubmitted the claim and sent reams of research to the required list of people, the VP of Medical Procedures of the insurance company and any other name connected with Unicare, we could get our hands on. FINALLY, the last of July, the procedure was Okayed.

The stem cells were collected in two days. David was admitted to the Blood and Bone Marrow In Patient Unit on August 2, 2002. A central line was placed in his chest that day. Two doses of Melphalan were given � one on August 3rd and one on August 4th. We sat anxiously waiting for mayhem to begin. It took five days for us to see anything happen!!
We sat bored with nothing to report to the long list of e-mail friends.

David did feel ill for the next five days - getting out of bed was a struggle most of those days. He was moving at turtle speed!! Monday, August 12th, he slept all day. I called that a great healing day!! A combination of 2 nausea medications helped control the nausea. The best thing he had to eat was Ensure with ice cream in it.

David experienced very few side effects. He did have a rash on his back and losing his taste buds was not fun. The taste buds have grown back but not everything tastes as it did before.

On Sunday, August 18th, he was released from the hospital, the central line was removed and he began to lose his hair that day. He kept the central line as a souvenir!!

During this time, I sent periodic updates on David�s condition to friends, family and co-workers who were praying for us and thinking about us. I must say that was the BEST thing during this experience was the unending support we received. We have experienced the power of prayer!

David rested and recovered at home to regain his strength and to heal. He was at home for 3 weeks before returning to work. The doctor planned a maintenance program of Thalidomide, pneumonia medicine and vortex.

Dr. Berryman is quickly becoming the area amyloidosis expert. Four to six amyloid patients have made appointments with him since David first began seeing Dr. Berryman. He contacts Boston and a blood and bone marrow transplant group in Seattle as needed.

I must say the WORST part and most stressful time of the entire ordeal was the trauma of being denied coverage from the insurance company!! The endless waiting, worrying and concern for David�s life was horrible!!

Excellent doctors, the power of prayer, a positive attitude and an early diagnosis were the keys to David�s rapid progress and healing.

Gayle Lever
October 2002


Update: December 2003

It has been 16 months since the SCT. David continues to improve. His medical maintenance program consists of:
Thalidomide - every other night, Diovan 80 mg and Bumex 2 mg every night.

Update: August, 2005

David is doing great. We just celebrated 3 years since the transplant. Medication is the same.

Please Note: We are getting MANY, MANY spams a day. I feel it is due to our e-mail address on this site. I am happy to share our story but not happy to share my e-mail with spammers!!

In order to reach the Levers, REMOVE the "NO.SPAM." from the e-mail address.

update - February 2008

The summer of 2007, David's amyloidosis returned. After a treatment of Velcade, he is now in remission. He has just completed a "mini" SCT with his brother as the donor. Over the years, his kidneys have been damaged.
He will soon have a kidney transplant with the same brother as the donor.

In order to reach the Levers, REMOVE the "NO.SPAM." from the e-mail address.

Email: [email protected]