My Life with Lymphedema and Lymphoma - January 2007
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It has been a very long time since I posted on how my life is with lymphedema and lymphoma, so I thought I would put in a brief update.
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Something started going terribly wrong with my body in early 2006 and I began to experience total body lymphedema. My abdomen and chest filled up with fluids and I was not able to stop or prevent it from becoming worse.
It was truely one of the most horrible experiences of my life as I became more and more incapacitated and the pain associated with it was overwhelming, both physically and psychologically.
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I became unable to do even the most simple of tasks like tie my shoe and even eventually could no longer take care of my legs by putting lotion on them and bandage wrapping them.
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By the time of the National Lymphedema Network's conference in very early November, I was barely able to get around with a cane. At the conference, I was confined to a wheelchair for a large portion of the conference. I honestly could not have made it through the conference without the help of Joan White and Cheri Hoskins who were always there to help and to push me from event to event. A therapist name Carmelita Rifkin also came each dayto my room to wrap and care for my legs. All three were truely angels of kindness and I will always have a deep deep appreciation for all they did.
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The conference ended and I returned to work, for only a week. By November 12th, I was so full of fluids that I could breathe only while standing up. My son, Patrick, took me to the emergency room at Gwinnett Medical Center and I was subsequently admitted as an inpatient.
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I was in that hospital from November 12, 2006 to December 8, 2006 when I was transferred by ambulance to the Lakeshore Rehabilitation Hospital in Birmingham, Alabama to be under he care of Dr. Paula Stewart.
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All in all, the doctors were able to remove around sixty pounds of fluids of my chest and abdomen. During the first week at Gwinnett, they also drained two and a half quarts of fluid from the right lung. Interestingly, the fluid has always previously been a golden amber color, this time it was pure chylous...milky white in color. On December 22, 2006 I was finally released from Lakeshore and came home.
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Then, in the afternoon of December 27th, I began to experience horrendous pain in my back between the left shoulder blade and spine. Again, i was taken to Gwinnett and admitted with a pnuemothorax. They again drained my right lung. In only five weeks, two quarts of fluid had returned to the lung.
I was released on December 31st and finally returned to work on January 4, 2007.
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But, something had to be done about the lung fluid as you can not safely keep going back time after time to drain the lung, so a pulmonary doctor and a thoracic surgeon was called in.
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This coming Monday, Januar 15th, I will be admitted yet again to Gwinnett and undergo a surgical procedure. Several small incisions will be made and the area between the lung lining and the rib lining will be filled with talcum powder in hopes that it will effectively block off the cavity from further fluid accumulation.
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While the doctor has said there may be only a 50-50 chance of success due to the lymphedema, I feel it is a chance I must take. Each month now, it seems that right lung fills up with a couple liters of fluid. There are only so many times that you can drain a lung before complications set in.
While the doctor has said there may be only a 50-50 chance of success due to the lymphedema, I feel it is a chance I must take. Each month now, it seems that right lung fills up with a couple liters of fluid. There are only so many times that you can drain a lung before complications set in.
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.The worse part and perhaps the most painful is this tube that will be sticking out of my side for a few days. While he is in there, a small camera will be inserted and some biopsies of the pleura will be taken. If all goes well, he will drain the left lung too, as it shows about 1 1/2 liters of fluid.
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The bad thing is, is that no one really has any clear explanation of what triggered all these events. It was also discovered that my blood protein level had dropped to a dismal 1.5, which is far far short of the ideal 4.5-5.5 level.
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Dr. Stewart has one theory that ties in the drop in the proein level, tied in with the lymphedema to cause all the swelling and fluid collection.
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The other theory involves the lymphoma. My incredible oncologist, Dr. Stephen Szabo would describe the lymphoma as "not in remission but contained." So somehow perhaps everything just went together to cause this disaster.
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I'm just so relieved though that thus far, the massive swelling has not returned and that I am once again able to do so many things...especially play with my new grandson Connor, who was born on October 15, 2006.
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While in the hospital, I keep a fair update on events in my blog:
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For earlier articles on my life with lymphedema and lymphoma see:
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*Clinical Considerations for the Diagnosis and Management of Lymphoma with Primary Lymphedema
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Pat O'Connor
