S's Story

John Fuller Beckwith4/23/2024

The following story was shared by one of our patients:

I have secondary lymphedema and I’d like to share my story. In the year 1996 I had a tubal ligation which included both cutting and burning of my fallopian tubes so that I couldn’t have any more children. For many years I did not know what had been done to me. I will tell you the story of my life after and before I knew I had a chronic illness.

The summer of 1996 I had just had my last daughter and had the tubal ligation. It wasn’t my choice. My dad forced it to be done. I had wanted my tubes tied so that if I changed my mind and wanted kids down the road I could still have children. But my dad told me he would come looking for the doctor if he did not do the full ligation. I didn’t know any of this until the last few years of my dad’s life. I think the doctor had something to do with my getting lymphedema, but I can’t prove it and I am not trying to since it is all said and done now. The following summer was 1997 and my ankles swelled up bigger than ever before. I went to the doctor and nobody knew what it was. They just told me to watch my salt intake. That summer my ankles stayed swollen for a couple of months and then would go away. It was like this every summer so I figured it was from the heat. But that didn’t make sense since I was born and raised in Yuma, Arizona where summer temperatures can reach 124 degrees, yet this had never happened until after the surgery.

In 2000 I moved to Oregon and, Wow, all of a sudden summer comes and my ankles are normal, no swelling. It stayed this way for a few years so I thought, okay I am free from this. Well, in 2008 one summer morning I woke up and my ankles were swollen. I called the doctor but need- less to say the doctor couldn’t tell me what was going on, that maybe I ate too much salt and to watch my salt intake. It hurt to walk this time. I noticed blisters forming but still couldn’t get an answer about what was causing this to happen.

A few months pass and the swelling went away and didn’t come back until 2014. This is where I totally freaked out. I woke up with one of my limbs like the Goodyear Blimp. I remember I screamed and started crying and yelling for my husband and roommates to come and look. I called the doctor. Guess what, the doctor still didn’t know what the hell I had. So I am walking around like a monster Goodyear Blimp. People are staring at me, pointing fingers, kids are laughing. I couldn’t take it. I cried. I stayed home. I didn’t go outside. I wouldn’t let my husband touch me and slept in the living room. I was totally in a shell, went into shut-down mode. Depression hit me so fast.

I ended up going to the hospital because my leg started burning like it was on fire. Not even sitting in my swimming pool helped it. This is what they said at the hospital: well, you are obese so you have a cellulitis infection, we will give you antibiotics but you need to lose weight. At the time I was like 220 pounds. Well, the meds didn’t help. I went back to the hospital because I started getting open wounds so they told me they scheduled me with wound care. That was two weeks out. By the time I got to wound care I was so bad I was running a fever and looked like I was dying. At wound care they called my doctor and the hospital and got me admitted to a hospital room immediately because if they waited any longer I might have died. Needless to say, nobody told me what I had besides an infection. So when I got out of the hospital I asked for all of my medical records from the hospital and the doctors.

It took a few days of going through my records, but I found out what I had and looked up information about it and how to treat it. The record said I had secondary lymphedema caused by a surgery or cancer. It could have also been hereditary but I knew that wasn’t it, so it was secondary lymphedema and the only treatment was to be managed by wraps and by a licensed lymphedema specialist in wrapping. So I called my doctor and told him. All he said is, when I find a specialist he will send a referral for treatment. I googled lymphedema physical therapy and found some places but they refused me. Lucky for me my best friend ‘K’ showed up one day and was showing me her legs and I said she had what I had. I told her to tell her doctor she had lymphedema and her doctor gave her a list of specialists. I called to ask if she had found anyone and she said she had. That is how I was connected to the first therapist that would wrap my legs. He seemed insensitive at first but was actually a good guy. Unfortunately he retired and I had to find someone else.

It took over five months but one day a woman suggested I try this other therapist. She had just opened and was taking new patients. Bless her heart, I had found someone. I went to her for four to five years but my legs never seemed to go down in all that time. During that time I was still in and out of hospitals with infections, still overeating and depressed, couldn’t be in public places by myself. The only thing I would get out of bed for was my grandkids and appointments. Other than that I didn’t want to move, but to just eat and cry more. I got so bad that I started missing wrap appointments and the therapist had to let me go.

So I had to find someone else to do my wraps. Through those years I was in the hospital four times, three times with infections and once for a hernia repair. But also during the stay for the hernia repair they found an abscess on the back of my leg which they had to cut open and drain. The abscess had probably been there for a very long time and had barely been brought to the surface. It hurt so bad and they cut my leg open the day after they cut my stomach for the hernia, so double ouch! I was 14 months in wound care. My poor daughter had to do the home dressing changes, packing the deep wound. I felt so bad for her every day. It was a disgusting job, but she did it. Even if I don’t say it out loud, I thank her all the time. If it wasn’t for her I think I wouldn’t be here today. There are lots of times I want to end my life but I think of my grandkids, my family and how much I have accomplished. And now I will tell you why I have accomplished what I have.

After the therapist let me go I had to find someone else so I called my friend ‘K’. She told me she was going to this one person who was really good. So I asked for the number, and let me say it, it took me two days to call because I was nervous for some reason. I still don’t know why. So I said to myself, now or never. I picked up the phone, dialed, it rang and then there was, ‘hello, this is the therapist, how can I help you?’ I started stuttering, I felt the words were not coming out right, but I got through it and set up an appointment to see him. He told me to bring all the supplies I had, it would be okay. I think we got it all into two or three bags. When my daughter and I first met the therapist it felt like a blessing from God. He was the first and only one that ever was so meaningful and explained everything from A to Z. He made sure you knew it wasn’t your fault and for me not to blame myself for it. He was the only one that was able to make my legs go down so that I would be able to wear garments. He did it in just 57 days. That was success I had not thought possible. I recommend him to everyone. He believes in you and himself. It is not like the others that just threw on your wraps and out the door. He works on drainage on the side he wraps, he washes the limb to be wrapped, then does lymph drainage massage. This helps to push the water up to different lymph drainage points. This is the best part of the whole process. I get so comfy I cat nap and snore away and loud. I tell you something, one time I woke up and caught him cat napping. I didn’t say anything and just let it go because I know how exhausted a person can get. I just smiled and acted like I was still sleeping, he will deny it but that’s okay.

Last but not least I would like share about how my family copes with all that has happened to me. It has been very hard on them since I have changed from a mom who was running and walking and running a yard care business to a mom confined in her own house with two lower limbs the size of Goodyear Blimps. My family was disappointed, they would cry and we would all cry. My son wound stay in his room. My daughter was my caregiver from the beginning until she just couldn’t do it anymore. She needed to move on so now my youngest is my caregiver. Recently I have lost 60 lbs. I am proud of myself now. I want to thank my grandkids for going swimming with me and my sister for walking with me and my daughter for fasting diets and talking me through it and my husband for being there for me now.

Thank you to everyone who has been a part of my recovery. Some of us were not fat when we got this lymphedema!!!!

There is a lot that happened to ’S’ but so much is relatable and she is not alone: initial swelling and no one knew what is was, went away for a few years so thought it was gone, then it came back and stayed but there was no help, lymphedema set in before the significant weight gain, depression set in, the focus on overweight by healthcare providers and not seeing the lymphedema, when finally getting care the level of care is variable. Yet as with all cases, when addressed comprehensively real improvement is possible.