After at least 5 stays in the hospital with cellulitus over a period of 10 years, with all my savings spent on tests and supplements, I found lymphedema on the internet two years ago! The only other people that I knew had it were my mother and then she told me about her sister. Since then I have talked to my older cousin who is enduring the same expensive tests, but never found the cause. Why don’t more doctors know about the lymph system?
My first 6 day trip to the hospital caused my 8 yr old daughter enough trauma that she wouldn’t go to school & was diagnosed with abandonment syndrome. She is now 23 and lives at home so she can care for me when I am recovering. There is no consistent “cause” for cellulitus. Last fall I had some teeth worked on at the dentist and within a week I was in the hospital. For New Years, I was recovering from a flu right before Christmas and stayed in another 3 days. The antibiotics this time did not cause an allergic reaction, thank God. Previous attempts at multiple antibiotic treatment caused a total body rash. My skin is always problematic with blisters which are often caused by constricting garments (an elastic waistband or a bra) and rashes caused by hot or humid weather.
Travel and activities are extremely limited by the need to prop my feet up. Originally I worked an office job at the computer and just the ankles were swelling during the day, now my feet are constantly swollen where shoes cannot fit and if I sit for an hour with my feet on the floor, the entire leg suffers. Sometimes the knees are affected by swollen lymph nodes, but I force myself to walk and swim to keep a somewhat normal life. I cannot use stockings that constrict around the knees or bunch up at the ankles. Once I tried a short airline trip and within two days my toes were infected because the Juzo stocking constricts the leg but not the toes. While driving I must stop frequently or be a passenger and prop my feet up across the back seat or on the dash. My hands are swollen and when driving they get numb. Walking is limited to how much pain I want to endure and staying in the shade on a hot day. I do garden, but once I landed in the hospital because I was scratched by blackberries. Really, the only comfortable place for me is in the pool, as long as I guard against athletes’ foot.
Recently, the certified physical therapist I require after a hospital stay told me that Europeans enter the Vodder clinic in Austria for an intensive 3 week stay with massage & bandaging twice a day to get the lymph normal again. I have proof that the Vodder method works for me. However my insurance company gives me 6 visits and when I needed more, they denied the request. Because the co-payments for specialists are high, I must spread these visits out to twice per week so they are not as effective. I own a recommended machine with graduated air compression “legs” but it was not custom fit. The feet are too loose while the thigh is too tight forcing lymph to pool in the feet instead of moving it upward as intended. It was paid for by medicare but I cannot use it as advertised. Once again, technology cannot replace personal care on an individualized basis. We cannot be lumped into a code number with one size fits all.
I waited two years after the lymphedema diagnosis for medicare coverage and Soundpath Health assured me they would pay for my physical therapist. That’s why I chose them, but now I find they are limiting access to her. If compression garments do not fit right they do more harm than good— so my next step is a custom fit padded stocking with “toeless” compression. The only reason I have not gone ahead with this, is the cost. Since 1998, I have stayed in the hospital over 8 times with cellulitus at more than $10k per visit. Really, if prevention is key to cutting costs, why wouldn’t compression garments & physical therapy make sense?
