Giving Tuesday: The Amyloidosis Foundation

The Tuesday after Black Friday and Cyber Monday has been designated as Giving Tuesday.  It seems fitting that after Thanksgiving and during the holiday season we should try to give back to others.  I had not really heard of Giving Tuesday until this year, but it seems like the perfect time to pay it forward.  I have so many things to be thankful for this year.  And I am especially grateful that my mom was able to enjoy Thanksgiving after her stem cell transplant.

You may have read my post about making southern dressing for Thanksgiving, and I talked a little about my mom and her diagnosis of Amyloidosis.  Today, I want to share a little more and explain why this Giving Tuesday I am supporting the Amyloidosis Foundation.

First of all, you may be wondering what Amyloidosis is anyway.  To try and simplify, it is a rare bone marrow disorder where a protein called amyloid is overproduced and then clumps together and deposits itself on organs, nerves and tissues in the body.  The more the production of amyloid increases the more health issues are cause by it.  My mom has the AL form of the disease.  In her type, it typically affects the kidneys, heart, digestive system or the nervous system.

The first symptom for my mom was when her lymphnode swelled under her arm in August 2017.  The believed that she had lymphoma; but after lots of tests, she was eventually diagnosed with amyloidosis instead.  At first, they did nothing to treat as they believed the amyloid was only affecting her lymphnodes.   But then she began to be unable to eat and lose weight.  She coughed all the time.  Her legs and feet hurt a lot and she had neuropathy as well.  My mom is a shopper like me and when she could not even shop because her legs hurt too much we knew something was not right!

Back in February, Mom had an endoscopy that confirmed the amyloid was present in her GI tract and that is definitely what was causing all of her digestive issues and her cough.  Even though the amyloid in the nerves in her legs was never officially diagnosed, they believe that is what was causing the pain there too.  After this was discovered, she started a treatment plan of a chemotherapy injection called Velcade, along with some oral chemo medications to try and combat the amyloid production.

To make a long story short, the Velcade was not working so the doctor changed the regimen to a new drug.  After a couple of months on it, it was determined that it was not working great either.  The only other treatment option was a stem cell transplant.  I say treatment, because Amyloidosis has no cure yet.  The goal of the transplant was to kill the plasma cells causing the  overproduction of amyloid.  And hope that they stay a way for a long time.

The week before her transplant, I went to Chapel Hill with her to many appointments.  She had to have her apherisis catheter implanted, meet with nutritionists to review what foods were off limits, meet with physicians and pharmacists.  It was completely overwhelming at times.  We also went to a wig shop in the hospital because her hair was going to fall out.  I have to say, it was something we were both dreading, but the ladies in UNC were amazing and made the experience fun.  One morning we got up super early because we could not sleep and went to Belk for the charity day sale.  I think it was a way to get out one more time and shop and enjoy ourselves before the hospital confinement started.

While we were in Chapel Hill, she had to begin injections in her stomach so her body would produce more stem cells for the collection that was set to take place the following week. Her stem cells were collected on one day the following week, and then the following day she had a massive dose of chemo called Melphalan.  The very next day, 8/31/18, the stem cell transplant took place.  During this time, my dad was there with her and I know I was driving them crazy calling all the time to check on her.  That weekend I drove down with one of my moms friends to visit over the Labor Day weekend.  Honestly, she was doing remarkably well.  I could not believe how great things were going, but I was super happy about it, especially since I was so worried.

The next Saturday, I drove down to stay for a week and give my dad a break.  I swear from the moment we switched places, it went downhill for her.  Her numbers began to drop, as was expected.  She was so sick that entire week.  She could not eat anything, it made her so sick.  Even walking was difficult.  She was exhausted and dehydrated most of the time.  She had to have IV fluids a lot and have a transfusion because her white blood cells went so low.

Also during this week, her hair began to fall out.  She made the decision to shave her head while I was there. The nurses could not find their clippers and they used her electric razor for her legs.  That was the worst day.  The electric razor did a terrible job of shaving her head and left it patchy and gapped looking.  I wanted to just cry for her.  I know hair is just hair and will grow back, but it was still not pleasant to watch it take place.  Also, I did go to Target and get some clippers to fix all the patchy areas and it is finally starting to grow back some!

On Saturday, I switched with my dad again, and while she was still some sick, it was much better.  She was released from the hospital later the next week and had to stay in Chapel Hill for  a few more days.  She has been home since late September and will be able to go out in public without a mask very soon.  The transplant has been very successful so far and at this point, no further treatment is required other than regular follow ups.  While I know the disease will return at some point, I am just extremely grateful that the stem cell transplant was an option.  Years ago, this would not have even been available.

More research is needed in this disease, but since it is rare disease (less than 4,500 people a year are diagnosed), it may not always get the most funding.  But this is a very near and dear to my heart cause, and if nothing else, I hope that this blog post will raise awareness.  If you would like to donate, please visit the Amyloidosis Foundation site.

Lastly, I would like to thank the staff at the UNC BMT. The nurses there were exceptional.  There is also a place that patients families are allowed to stay called the SECU Family House. The people and support you receive here is also amazing. And here in Hendersonville, I would like to thank Dr. Navin Anthony; he is so fantastic.  He is one of the kindest and most empathetic physicians and really cared about my mom and still continues to monitor her.