- Maxiel Maldonado
Maxiel's Lymphedema Story
In honor of Lymphedema Awareness in the month of March, I felt it was the perfect time to share my story. First off, for those of you that may not know me, I am Maxiel; most people call me Maxi. I am married to Donald Fisher and mother to Isaiah who is 5 years old. I am also a teacher who currently works from home, teaching English to students in China. We have been coming to Skyline Church since I was a few months pregnant with Isaiah in 2012 after Diane Ruiz had invited me to attend one day. We fell in love with Skyline Church, and now we consider Skyline our family too. So, I wanted to share with you a little about my journey with Lymphedema which is chronic swelling caused by a buildup of fluid that occurs when the lymphatic system doesn't work correctly or has been damaged or removed. These are known as Primary Lymphedema & Secondary Lymphedema.
I will begin by mentioning that not many people know that I am a Lymphedemasurvivor because I haven’t shared it with many people. It is something I have been embarrassed about for years, but after a lot of prayers, I decided to share my story. I want to be able to help others and bring awareness to this condition. Many people are living with Lymphedema. According to LE&RN (Lymphatic Education and Research Network), Lymphedema has been referred to as the silent epidemic which is affecting an upwards of 10 million Americans. This is more than muscular dystrophy, multiple sclerosis, ALS, Parkinson’s, and AIDS combined.
I developed secondary Lymphedema after a double hip replacement that I underwent back in June of 2011. My lymph nodes were damaged during the 11-hour surgery, and I now have Lymphedema in my left leg. I also have it in my right leg too, but very mildly. My left leg is more severe. I was born with congenital hip dysplasia (when the hip and ball socket do not align properly), but it went undiagnosed until I was an adult. By that time my legs were both in terrible condition and I was in a lot of pain because I had no cartilage left. Therefore, I had to undergo a bilateral hip replacement at the young age of 32. So that's how I got secondary Lymphedema, and it led to a blood clot in my left lung in 2015 that almost took my life. I have had many hospitalizations due to Cellulitis (infection in the skin) which are very common when you have Lymphedema. Cellulitus is incredibly severe and has landed me in the hospital for a week at a time. The first time I had Cellulitis was in 2012. I had a fever of 106 and my entire left leg was red and hot to the touch and the doctors, not knowing what to do, wanted to remove my hip prosthetic because they thought that my body was refusing it. Thankfully that did not happen.
There is currently no cure for Lymphedema only management, so I have had to see a Lymphedema therapist to do complete decongestive therapy, bandaging, wear compression garments and get a compression pump to assist with moving fluid out of
the limb and lowering my risk for infections and blood clots. Due to these risks of infections and blood clots, I decided to have a vascularized lymph node transfer surgery on January 23rd, 2019. Lymph nodes from my collar bone were harvested and placed in the groin area. This surgery is not conventional by far and only a handful of doctors are doing it throughout the country. My doctor is an hour away, but the travel time was well worth it to lessen my chances of getting another infection or blood clot. I am recovering well from the surgery. It took 8 hours to complete, which is much longer than the surgeon expected, but it was a very complicated surgery especially due to my medical history. It can take anywhere from a couple of months to a year after this surgery to see results, but I have noticed that my leg is softer which is a good sign when you have Lymphedema. I also must continue my Lymphedema management of physical therapy, compression garments, bandaging, and compression machine because as I mentioned before there is no cure and control is key to Lymphedema. I will follow up with my surgeon on March 22nd to measure my leg and take pictures to compare to before I had surgery, but at our last appointment in February he mentioned I was healing very well.
I have been through so much with my health, and I no longer want to hide my Lymphedema condition because although my journey has been hard, I have so much hope. God has gotten me through all of this. At Skyline, I accepted Christ into my heart and was baptized on February 3rd, 2013 just 2 months before giving birth to Isaiah. I know that if it weren't for me trusting in God and having the support from my loved ones and Skyline family that things would have been so different. I clearly remember the doctor and nurses who removed my blood clot telling me that I was lucky to be alive and I thought to myself, God saved me. Through all that has happened I have felt God has been close to me protecting me. Meditating on bible verses has truly helped me to get through the toughest times when I was laying in the hospital with my husband and 1-year-old baby boy at home to take care of. I remember repeating these verses over and over.
Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Psalm 23:4
Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Never will I leave you; never will I forsake you. Hebrews 13:5
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
I would play worship music at the hospital, and never stopped praising God even though I was dealing with so much with my health. I knew he would never abandon me and didn't bring me this far just to leave me. I prayed before my most recent surgery in January and felt calm the morning of and even minutes before going in the operating room. I felt God was with me and would cover me. Even when I woke up to all the nurses and family telling me the surgery took 8 hours versus 4 hours and not being able to feel my fingers for 2 days because I was super swollen, I felt God was with me and wouldn't abandon me. And here I am today being able to share my story. God's plan for my life is so much bigger than my own, but it has taken me trusting that he has me in his hands. I am not perfect, I have my moments of sadness and weakness because l am human, but I know that God has a plan for my life despite my circumstances and I am so glad I trusted in him.
I have been very blessed to have the amazing support of my family and Skyline family, and I want to share awareness and my story to encourage and help others who may be struggling with Lymphedema quietly, like I was or may know someone who has Lymphedema. The below links contain some useful resources about Lympedema, and I pray they will help others. Please share this information with those who may be struggling with this disease because our awareness is crucial. We are better together!