I was diagnosed with Lymphedema in October 1998 – three weeks after a major surgery (radical vulvectomy with lympnodectomy in my left pelvic area.
I was in the hospital for six nights and seven days after surgical procedure- instructions from gynecologist oncologist surgeon were to call him immediately after going home if I developed a temperature or swelling in the pelvic node surgical area. Three days after going home I noticed a swelling in the lymphnode disection area – I called my oncology surgeon and was referred to the Fellowship Resident on call- was told to report to the emergency room immediately (October 16) for examination. I was seen by three Fellowship Residents that had accompanied my gynecological surgeon during my hospital stay- no ifection was indicated through blood work, not temperature- I was sent home with a prescription for Cipro (preventative treatment). I was told it was imperative to see my surgeon as soon as possible on the Monday after my emergency room visit on Saturday, October 16. When I called my surgeon on four occasions on that Monday october 18, I finally had a return call from the nurse saying I did not need to see the doctor because the resident on call had put me on an antibiotic. I told the nurse I did not have an infection and my records were on the surgeons desk- she told me to come in for my follow up in two weeks.
I saw my Hematologist on (follow up for a distant Hodgkins Lymphoma IIIB diagnosis in 1972) October 22, he noted my swelling in my left leg and I had a doppler and was diagnosed by my hematologist, with a superficial thrombosis and was put on a two injection daily of Warfarin for 14 days. Needless to say my surgeon upon receipt of this data was none to happy. I finally was sent to a lymphedema therapist and started the Lymphedema wrap protocol. I followed the protocol (not to happily) for 3 years and then just stopped. I had to stop running, riding horses- and not to mention the frustration of a new intrusion in my life. I am beginning to realize that lymphedema is for life and I have scheduled my first appointment since 2002 for my lymphedema therapy to begin again. Lymphedema is a quiet crippler in life- it sneaks in and takes so very much from the patient.
Lymphedema is for life!!!!! I am blessed to be a long term veteran, I should have always stayed in lymphedema therapy but it is quite costly and there needs to be an outcry to the government and to insurance companies to recognize this condition. I have worked for 42 years for the same corporation– I am 62 years old, I am blessed but cancer is the gift that keeps on giving and lymphedema is one of the gifts. I am learning to be patient, quiet and listen to my lymphedema- it has taken a long time but I am here to support any person needing support and it is okay to cry. The lymphedema therapist I am seeing took over my treatment in 2000 and I will see him again on September 12 of this year. I am so grateful these therapist have kept pushing for their patients and for the gift each lymphedema therpaist gives to each patient- hope, encouragement, empathy and a kick in the rump when the patient needs it.
