Brad’s Story

When Brad was five years old he had a surgery to have a lymph node removed from his pelvic area.He had the surgery to remove a lymph node which the Doctor said was active around it.He had the surgery and things went well. Being young parents we had never heard of lymphedema.No Doctor told us that a possible side effect of lymph node removal could be exactly what happened to my son Brad about six months after the surgery.

One evening before putting Brad to bed I realized that his right leg was quite a lot larger than his left leg.His right side was the side that the node was removed from. I can’t explain the feeling that I felt at that moment! We live in Gainesville,Fl. and we are renowned for our teaching hospitals.We immediately took Brad to his pediatrician. He then, never having encountered anything like this before, sent us to our local medical center.He saw physician after physician.They poked, prodded, did rectal exams, IV dye test and in the end after months of trips to the pediatric unit we were told by a vascualar surgeon that we could only hope that it would correct itself.

Brad is now thirty-three and has been in and out of hospitals with raging infections.He was never able to live a normal life because of the gravity of this misunderstood condition and frankly one that most people know nothing about. No physician at any time while he was in hospital or not has ever tried to send him to any kind of specialist or reccomend any alternative treatments.For twenty-seven years we have lived in a bubble and thought Brad’s condition to be very rare, when in fact it is not.

Earlier this year Brad had yet another infection and instead of the primary care physician having him admitted to the hospital for treatment, he took it upon himself to give Brad an injection, then oral antibiotics. Brad then shortly after formed a huge pocket on top of his foot and one on the inside of his lower leg. Through family we were able to get him in with a new physician. She may not have been extremely familiar with this condition but she helped us. She contacted a physical therapist named Sunshine and that was the best thing that ever happened to him.

Sunshine is very knowledgable in lymphedema and its treatment; she is also out of network.Brad has been seeing her for two months. We have no one in our area who is in network for this type of treatment. My son has had to go on FMLA from the job he has been at for fifteen years.He has been a real trooper for sure. Brad stands all day on hard floors for hours on end and the last six months before beginning PT, he had developed prostitis severely and was in agony and had began involuntarily wetting himself. He never missed a day of work, though .I would know how bad it was because he lived at home with me .I would at times find him crying.

It doesn’t matter how old your child is.When they are in pain we feel so helpless and only want to stop the pain. He was given meds. for prostitis and nothing was helping. His blood pressure had been high for years. I told him that I felt the prostitis was caused from the fluid that was built up in his leg and pelvic region.The pain was so excruciating at times that he was barely able to function.The good news now is that about three days after his first physical therapy treatment with Sunshine he had no pain from prostitis and has had perfectly normal blood pressure readings every time and the swelling in his leg was going steadily down.For the first time ever we saw a bright light at the end of a long dark tunnel.

The bad news is now that I am unemployed, Brad gets no money while out on FMLA. We don’t know when he will be able to return to work. Sunshine has had to stop seeing him every day and sees him every other day. I am paying Brad’s medical expenses at this point! And today Sunshine called to tell him that she had heard from his insurance company that they were not going to pay her anything for his treatment. For twenty seven years he missed some of the best things in life. He had to live with great caution and drag a huge leg about. He never once complained but kept working and just tried to accept that his life was what it was.

This treatment was making all the diffirence in the world to him and I saw my child begin to have hope for a future he never thought he would have. He wants to return to college to become an occupational therapist with his main emphasis on lymphedema treatment. We are not sure what the future holds for him just now, but we are trying to do what the people who were proactive in NC did and have some sort of law passed helping my son and all of the people in our state of Florida to receive the help that they need.

Never give up.

I don’t know how this will end but insurance companies have got to take responsibility for the people that they insure. Brad finally has hope and his leg looks just awesome! I want him to continue to receive the care he needs. The fact is that his insurance company may end this and the thought of what will happen once the treatment stops is nothing short of terrifying to us.