In March 2011, I discovered a small blister on the back of my right ankle. The blister was draining and I thought it was from my shoe rubbing my the back of my ankle. I cleaned the area and applied a bandage. Over a few days the drainage increased to the point that it was wetting my shoes and bandages did not stay adhered.
After a week or so I began to run a fever so I contacted my doctor. She didn’t think the blister which was now broken open and draining profusely was infected but she prescribed amoxicillin as a just in case.
Over the next few days my fever increased and a series of new blisters appeared on my ankle. Each day there were more by the fifth day the back of my leg was covered with large painful draining blisters. The pain was so intense I could barely move my leg. I called my doctor back and she referred me to a surgeon for possible debridement. She also changed my medication to Bactrim.
I made an appointment with the surgeon who told me I had cellulitis and the infection was an MRSA (antibiotic resistant variety) . He said that the infection was severe and that I could easily die in the next 48 hours but that they would amputate my leg if the infection spread any further. He drew a purple line around my leg just under the knee and told me that the swelling and infection could not go past this line. At this point my leg was incredibly swollen and now covered with draining blisters. Without heavy bandages the fluid would drain off and form a puddle on the floor.
He put me on Hydrocodone to help me manage the pain. I could barely walk due to the pain.
He also noted that my left leg was incredibly swollen even though there were no blisters there. He could not figure out why I was so swollen.
I took the course of Bactrim as directed the infection seemed to slow down but the blisters remained and the swelling. Since there were so many blisters continually draining my skin became severely irritated and red, it began to crack and bleed in addition to the blisters.
My doctor asked me to change my dressings as many times a day as I could. I needed to do this anyway because the drainage was so heavy that I would soak thick bandages in 2 or 3 hours so I had myself on a changing schedule of every 3 or 4 hours and began using heavy surgical bandages to help me manage the draining. My doctor seemed unconcerned about the draining or even the redness he said it was normal. How was this normal? I didn’t know or even begin to understand.
After 10 days on the Bactrim I was still not healing although all the blisters were broken they were still open wounds and drained heavily. Only now the drainage that was clear was amber colored and green in some areas. It was a green like lime koolaid, and very unsettling. Once again my doctor was not concerned, he seemed more concerned with the swelling and fluid concentration in my tissues.
He decided to send me for a CT scan. This was a contrast scan that was for me extremely painful. I waited more than 3 hours for the scan and my bandages leaked everywhere while I was waiting.
I was unable to walk and was sitting in a wheel chair with my leg elevated but even elevated my leg drained. I leaked all over the table during the CT scan and my leg was so tender that it could not be touched at all without causing so much pain I screamed each time anyone moved the leg.
The results of the CT scan did not reveal any muscle or bone involvement yet the pain was so intense that it was as if my bones were being crushed. My doctor could not figure this out. He decided to send me for an Ultrasound study to check both my legs for blood clots (venous stasis). Once again I had to endure extreme pain for this test. Ordinarily it would be painless but my leg was too tender to be touched at all.
The results of the test showed no blood clots. My doctor was again at a loss so he prescribed another antibiotic Doxycycline. For a time my leg responded part of my leg began to heal and the blisters now peeled off when I changed my bandages. But they did not go away nor did the draining end. The swelling continued but the pain was diminished. My doctor said I just needed to give this time and I was told to go home. Continue changing my bandages often and to not come back unless it did not improve after a month….but he was adamant about do not come back for a month.
I continued my routine care of cleansing and dressing the bandages at this stage the bandages were costing me about $150 per week. Nothing held the fluid for very long and the very large wound did not improve. After about 3 weeks I realized the wound was expanding and moving up my leg. It was now just past the back of my knee. I waited one more week and made an appointment to see my doctor again. He was surprised to see me and looked at the leg. The amount of damage to the skin was horrific. It was one large draining mess only now blisters were appearing on my left leg. My doctor was perplexed and finally openly admitted that he did not know what to do or even why there was so much swelling and drainage or why the wound would not heal.
He decided to refer me to a wound care/lymphedema clinic. I was so terrified I was glad to see someone else. I needed help and it seemed there was none in sight.
I made my appointment with the new clinic completing my insurance paperwork and was told by the hospital where the clinic was located that they accepted my insurance so it was not a problem.
My insurance is Cigna.
My first appointment I was anxious and fearful of what the doctor might say. I walked in and they put me in a large chair and elevated it so that the doctor could get a good look at my leg.
He examined the leg and told me that I have Lymphedema and that the cellulitis is a result of a break in the skin that became infected. He said that Lymphedema will cause blisters that open and drain and are difficult to heal without compression therapy. Suddenly I felt relieved, he seemed to have an answer.
My new doctor told me that I would need to be patient and follow instructions but that the wound would heal once the excess fluid was gone. He said the wound would heal quickly once that occurred. So began my journey into the world of compression therapy.
At first he didn’t realize that I was draining lime green fluid because my dressings were fresh. But he soon realized it and took immediate action to treat it. By this time the wounds had developed an unpleasant odor that permeated my bandages. My doctor had his nurses put bandages encrusted with silver nano crystals all over my leg in addition to the special bandages designed to collect heavy drainage. Even with these special bandages (Exudry) I still soaked through and found the need to have them changed every other day. So my appointments were three times a week and that was a stretch because I would still leak a little fluid out. Often times the fluid would drain out under my foot.
The nurses attended to my large wound and applied the compression bandages. The compression bandages consisted of a soft sleeve to protect the skin and long sheets of foam wrapped snuggly around my feet beginning just past my toes and up to my knees on both legs. The tight long cloth bandages are tightly wrapped on top. These bandages resemble Ace type wraps but they do not stretch very much so that the level of compression can be controlled. My legs were wrapped so tight that I could not move my feet so walking was a challenge. I had to wear post op boots because shoes do not fit over the bandages.
Each visit the nurses would remove the compression wraps and the bandages and then clean and treat and rebandage and apply the compression wraps. The process was the same each time, once a week my doctor would examine the legs and take photos to show any progress at first it seemed that nothing was happening. Then one day I looked down during a session and saw what looked like new skin. I felt my heart soar and I asked the doctor is that what I think it is………new skin? He smiled and replied yes. The goal here is to keep up the treatments and little by little this island of skin will begin bridging and growing and close the wound.
This process continued for 6 weeks with moderate improvement I felt restless and at times anxious because the silver nanocrystals burned and were coarse against my tender skin. There were times when I melted down under the pain and cried nonstop for hours. I was now at nearly 5 months with this condition and I felt it would never end.
One day went in for a session and the patient technician removed my wraps and bandages to find them mostly dry in several large areas. DRY!!! The compression was moving the fluid off my leg, not only was the leg dry but the skin was less irritated. There patches of new skin were now making progress closing the wound. I only had a 5 x 9 section that was still draining and bleeding and the area above my knee to deal with. They could not wrap the area above my knee because the bandages sagged too much and were pointless. The nurses began to brainstorm about how to bandage they tried all sorts of things and after some consultation with my doctor decided to use a barrier method instead. So they had me daily apply a thick coat of zinc oxide to my upper leg and apply a fungal power all over it. Oddly enough it worked, the barrier kept my upper leg dry most of the day and little by little my skin began to heal over this area too.
I continued the compression therapy happy and excited that one day soon I could shed the dressings and move to compression hose. During one of our appointments my doctor said that due to the amount of fluid in my tissues a lymphedema pump would be very beneficial to keeping the fluid out of my legs it would be used in conjunction with the compression hose. He asked a medical supplier to come in during one of my sessions and measure me for the pumps. She asked me a lot of questions about the length of time I had endured the wounds and any medical history that would help qualify me for the pumps.
Little did I know that this was going to be the beginning of a fight to get any medical coverage for my condition. The lymphedema pump supplier told me that 5 months was not enough time to qualify for the machine. The wounds would have to have existed for at least 6 months….imagine…6 months of pain before any insurance would cover them. But she felt confident after seeing the wound that I would not be healed completely in one month. I agreed so I asked her to keep my information and we could revisit it later.
Shortly after the lymph pump event I received a puzzling letter from my insurance. It was unclear but it looked as though they hadn’t paid my health care costs. Which for one month totaled over $11,000. They covered my doctors visits but not the actual treatment. When I called about it they told me it was because they didn’t have the clinic located at the correct address and that they would resubmit it. I continued with my treatments thinking all was well.
Then at the end of September I received another note from my insurance that was puzzling it looked like they hadn’t paid but I was not sure. So I called about it again, it was then that I was told that the contract with my insurance Cigna for this medical facility did not cover the services that I received. Further I was then told they had not paid my last bill for the treatment services. This mean that I could possibly now owe approximately $22,000 dollars and I was not well yet. Terror filled my heart as I knew without treatment I would not heal and my leg might even revert back to its former condition.
I found myself crying uncontrollably because I felt that my insurance was denying the claim because they didn’t want to pay out such a large amount. I could not imagine how they could refuse to pay for treatment that was making me better.
At this stage I was working, and walking fair distances and no longer needed to be in a wheel chair. The therapy was restoring my life to me and now it was going to be taken away because I could not afford to pay the treatment cost.
This was unbelievable…how could this happen? How can an insurance company be allowed to refuse payment that is potentially life saving.
Tell me, kind people…what is the prognosis in this situation? My doctor told me that if I had been treated earlier I would never have endured any of this.
Lymphedema is a treatable condition and without treatment can turn into a life threatening condition. All that is needed is doctor education to recognize the condition and patient education and early intervention and even with a severe condition such as mine it is treatable and then manageable.
My condition as best assessed by my doctor is primary lymphedema with a late onset. I am 54 years old but I have been wrestling for several years with swelling. Not one doctor realized or even considered that I might have lymphedema. All noted the swelling and one prescribed diuretics which are of no help with lymphedema. I have not had surgery and I am not the only member of my family to have lymphedema. My sister also has this condition although her situation is much better than mine. She has been in maintenance for some time but she struggles with the compression hose issues because insurance will not cover much of the costs and she cannot afford more than one pair. But her legs appear normal now and she lives a happy full life free of pain because of the success of her compression therapy. The ending to my story remains open.
Insurance companies are happy to take our money but when it comes time to pay out they make it extremely difficult to receive benefits. How can we allow such injustices? How can we continue to deny treatment or special equipment to patients who have a medical need?