My husband is now 64. His medical history up until 2000 (when he was 53) was almost non-existent. Right before Christmas, he was diagnosed with congestive heart failure and coronary artery disease – and was rushed into surgery for a quadruple bypass. Next came diabetes – and that progressed to insulin 4xday. Then about 2 years ago his cardiologist matter of factly said ‘your legs – they look swollen and reddish – you have lymphedema, go to a podiatrist and get fitted with stockings’. Its called bilateral lymphedema – unknown cause.
Thus began the journey that won’t end. Stockings would be impossible for him – no way was he going to be able to wear those. The swelling and redness continued to progress, to the point where he developed scaley, bumpy hard red nodules on his lower legs and blackening feet. He gradually progressed to having legs that made him joke about being in a monster movie. His once muscular legs were turning into a pocked mass -something that made people stare. Shoes were nearly impossible. Finding treatment was a nightmare. But just finding a therapist doesnt mean it works out. Bandages werent covered they told us at the clinic – so we had to order and pay for them ourselves. Cost – around $200.00. The first therapist wasnt very professional and found a joke in everything – and finally after 6 weeks and no progress, dismissed him as a patient and said look elsewhere. For the next several months I spent hour after hour online and on the phone trying to find somebody who had proven success with treatment. It was like being in a leper colony. Doctors knew thats what he had, but finding treatment that was available in our area and hearing success stories – that wasnt happening.
Finally I came upon a Physical therapy group affiliated with Inova Hospital in Fairfax VA. Located next door to Potomac (Sentara) Hospital – it was certainly close enough to home (3 miles). The staff there is wonderful. The therapist (Megan) – is an angel!! She is so patient with this old codger, laughs at his stale jokes, makes him understand the importance of following the rules of the therapy. She is a master of bandaging – His progress has been amazing. His podiatrist said the other day – look–he has ankles again! There have been so many complications during this past 12 months – hospitalization 3 times for cellulitis, heart failure, infections in the skin – weight gains that stretched the skin to its limits; only to be brought down by Megan’s massage and bandaging techniques. He is nearing the end now – going from therapy 5 days a week down to 2, losing about 25 pounds in his legs and soon to be fitted for ‘garments’. Whatever that may be, whatever he can manage to get on, whatever insurance/Medicare decides is necessary…we shall soon find out whether this will be a journey with a happy ending or one that suddenly we find we cant afford. It has been a life changing event – and the medical profession along with the government guidelines that Medicare follows, have to be allowed to treat this as it should be.
This is one of the most crippling diseases there is – the secret disease – Lymphedema.
