My Story of Hope

John Fuller Beckwith1/18/2024

The following story was shared by one of our patients:

I have been overweight the majority of my life. Always the big, funny girl. But through it all I stayed pretty active and got around okay.

In 2014 I had a total hysterectomy at the age of 50 due to some physical problems I was having.

In 2015 I had my first case of lower leg, bilateral cellulitis, so severe that I was hospitalized, the infection so bad I became septic. In the years that followed my legs became bigger, heavier and all around bothersome. I had several bouts of cellulitis in one leg or the other. Seeing my doctor several times through the years, being hospitalized a few times with cellulitis, always going for that follow up visit and being dismissed and told my legs are big because I am overweight. My legs grew bigger and started to get this hard feeling to them when you pressed into certain areas. During visits to my doctor he would look at my legs, press into them with his finger and say to me that I had severe lymphedema with pitting. He then put me on diuretics and sent me on my way, even increasing them because nothing ever happened with my legs. It became harder for me to walk as my legs increased in size. I did less and less. I began missing out on things with my family because it was easier to just stay in the car or not go. I simply gave up. I truly lost hope. Then in June of 2019 I had another bout of cellulitis so bad I went to the hospital via ambulance. I was very ill, septic once again. I was in and out of consciousness, even telling my wife at one point I saw my dad, who had passed away 2 years prior. During my recovery, a wound care nurse said I needed to have Lymphedema Therapy. When I followed up with my doctor and he saw the recommendation from wound care and asked if I had been called yet, I told him no and he said he would send one over. A week later (the therapist) called me and we set up my first appointment. After meeting with him and discussing a treatment plan, we began.

Skeptical doesn’t even begin to describe how I felt. All I thought was, what a waste of time this would be. But with my wife’s urging I went. My therapist gave me a folder full of reading material, I went home and when I starting reading, for the first time I had an understanding of what I had. Never had it been explained to me. Now I knew why diuretics didn’t work. When treatment started my legs reacted immediately. When I say my legs were big, I mean they were big, I had rolls at my ankles and creases in the middle of my calves. After a few weeks of treatment, the change in my legs were dramatic. The rolls are gone and the creases have almost disappeared. I can look down my legs and see my entire ankle and foot as they are meant to be. My lower legs are lighter and not filled with the fluid they once were. For the first time in forever I have this desire to improve my quality of life. I have hope! Hope for my future well-being. I now understand this will be a lifetime commitment. I will always have lymphedema but it can be managed. With the proper care I can gain back my life. Believe me, I have a long way to go but I finally have a beginning, a place to start. A lot will be left up to me to do but with that chance, that possibility, I see hope.

In the world of lymphedema treatment, one of the discussions we have is about when and if to provide intensive treatment to persons with apparent barriers to treatment, which may include obesity, but also self-care issues. One approach to this scenario is to hold off on providing the treatment until the individual shows a commitment to managing the issues that, reasonably, are entirely up to them. A different view is that in providing the treatment, the change that is generated by successful treatment will then provide evidence that change is possible and open the possibility that further effort by the patient will yield more success.

The reality for many of our patients is that they have lost hope. They don’t get good answers from the medical providers. There are so few good lymphedema therapists that PCPs don’t even have the option to refer to a Certified Lymphedema Therapist. The patient is often brushed off with an admonition to just lose weight when in fact a fair portion of their overweight is due to advancing lymphedema. The lymphedema keeps getting worse and it appears even the person the patient should count on most, their doctor, does not have the answers. After years of this, it is not a surprise a person could lose hope.

Recognizing this, why should we take away this chance to provide positive change; for a patient to, “finally have a beginning?” And with change, then hope? In my many years of providing lymphedema treatment, I think many patients have felt just the same as this patient, but did not know how to express it. As a therapist I would prefer to err on the side of providing hope, rather than withhold it.