A holistic approach to a rare blood disease (LCDD)

Hi, my name is Crystal and I wanted to see if I could recruit some of you in helping a person that is very close to me.

I met Kayla at our first fitness competition back in 2019 and we just latched onto each other! You never know you need someone in your life till they all of a sudden show up and BAM, you can't imagine your life without them! Well, my closest friend has had a rough year, from divorce to family deaths and now this!

I got the call that Kayla was admitted into the hospital with stage 5 kidney failure and with the help of my families support to take care of MY son I drove down to be there for her and her son. Finding out Kayla had a rare blood disease after much testing was a blow to her mentality and since then has been on treatment and Chemo with attempts to bring her blood work numbers back in order.

After a year of pumping this poison, we call chemo into her body Kayla is ready to try holistic and naturopathic medicines, not just for herself but for her to learn to be able to help others heal naturally!

This blood disease is so rare no one really knows how to treat it 100% and right now there is no cure. Holistic medicine is very costly, and insurance does not cover anything. So, I am starting this go fund me in hopes that we can collectively help Kayla on her healing journey.

Here is Kayla's story:

2022 started off for me as the most successful and positive year I have had in a long time. I was working on the Army officer candidate school while working full time in the Rhode Island Army National Guard. I was married to the love of my life and my son was 15 and becoming a great young man. I was also prepping for my fifth fitness competition. My life was so busy, but I was so happy busy I strive when I am slammed with work. In April, I competed and not only won first place but because a Pro Athlete for the federation. I was on cloud 9 I never thought that I would ever place top three never mind actually winning first place and become a Pro Athlete. Unfortunately, only a few weeks later my husband left for a 10- 12-month deployment to Kuwait but I wasn’t nervous about us I knew we would be just fine. So, he left, and I worked and held down the house. I had to go away in July for 2 weeks for the final 2 weeks of the OCS (officer candidate school) training in hot Alabama I even had to shave my head to meet requirements for graduation. At the end of completion, I was ecstatic for it to be done since it was an 18-month program and the most stressful 18 months of my life. On September 11 was my graduation, I have never been so proud of myself in my life. Everything was looking up for myself and my family’s future. During my military training I had notice a small hernia above my belly button and had pushed the surgery off until after the OCS process was done. I had scheduled the surgery for September 27, 2022. I had the normal pre-surgery labs that had to get done. Which I did and the results back came back a little funky. My doctor did not like the results and had me go to the emergency room to have them checked there. It was a Friday afternoon, actually the Friday before the surgery, I was not happy about this. I figured I would go and they would do the labs give me some fluids and send me home. Nope not what happened. I went and they admitted be. They had no idea what was wrong with me. I was in the hospital for a week they did a kidney biopsy and everything. While I was there, I called the Red Cross and had my husband flown home from deployment because I had no idea what was going on. I was in stage 5 kidney failure and had no idea how tis even happened. I felt completely find but in the blood labs my kidneys were failing. After a week I was sent home, and my doctor referred me to go to Dana Farber to get a better look at my kidney biopsy and they decided I needed a bone biopsy to really see what was going on. At this time, it is now December and still no answers. During all this of uncertainty with my health, out of nowhere my son’s father my first husband was found dead at the age of 37 two days before my son's 16th birthday. Since he never remarried or had any kids my son was the next of kin and had to make all the funeral decisions. (With the help of his family, I was so thankful for everything they did.) Since my son was under 18, I had to make the decisions for him, mentally I was losing it. At the same time my current husband had to go to Texas to do some stuff for the Army because they decided he could stay home with me instead of going back to deployment because my health was so uncertain. Life was spiraling downwards in so many aspects I mentally was becoming so exhausted. Finally in December the doctors figured out what was wrong with me. They discovered that I have a very rare blood disease called Monoclonal Immunoglobulin deposition disease also known as (LCDD) Light Chain Deposition Disease. Which also runs hand and hand with Multiple Myeloma. There is no cure for the disease and the only way they know how to treat is to treat it the same way as a Multiple Myeloma patient. You see, the disease causes my body to produce a protein that then has been depositing into my kidneys and deteriorating my kidneys. They don’t know the caused this disease, where it came from, how long I have had it or anything. And at any point it could turn into full blown Multiple Myeloma. I started 9 months of chemotherapy and a couple other treatments once a week. During that time frame my husband and I split up. Disease can put a lot of strain on a marriage. All I could think about was how I literally was losing everything that made me and my life. But I knew that I had to keep going if not for me but for my son. I am literally all he has left. I finish the full chemotherapy treatment in August and then I was put on maintenance treatment starting August. Which is a very very small dose of chemo and some other medicines, and I would be on this for about a year and a half. My disease numbers have gone down so much. However, my kidney function has not changed at all. That the doctors and I thought maybe they would come to better functioning but unfortunately the damage is irreversible. I meet with my kidney doctor in October 2023 and decided that in January, he would revisit me and check my numbers talk to my oncologist and see if I could be put on the kidney transplant list. When I found out about the transplant, I had to tell the military because I am still active duty. And they told me since I am getting the transplant, I will have to be medically separated so I will have to find another career since this was my plan to retire at 20 years and I am currently only at 13. Continuously I felt like my life was never going to get better. EVERYTHING WAS GETTING TAKEN FROM ME. My hobby, fitness, health, marriage, job … everything. I did find a home for my son and I to move to and I am now divorce, sad and still heartbroken but healing and staying as strong as possible. When I think back to the summer of 2022… I could have never in a million years believe my life would be here. I thought I would finish OCS, my husband would get back safely from deployment, my surgery would be done and I would be finally happy and whole after a couple of really tough and exhausting years. Instead complete opposite happened and it got incredibly worse, by far more then I could have imagined.

Recently I saw my kidney doctor again and he wants to wait a little longer to put me on the kidney transplant list and my oncologist is really happy with the way my disease numbers have gone down. The only thing they are afraid of is putting a new kidney in me and the disease coming back and killing the new one to. I still have a long road ahead of me, but I am hopefully, and I am thankful for all those that have stepped up and helped me in the hardest year and a half of my life. I am also currently working with more of a holistic approach and change my diet to more of a raw and organic diet with more exercise and clean alkaline water. Trying to heal myself as much as I can natural and learn ways to then help others the same way. I am hoping to find ways to live with this disease so I can help others if they ever find themselves in my shoes. I am a fighter and I will never give up. It could always be worse even when I have been living in a terrible storm. However, there is always a rainbow after the storm.