Friday, August 6, 2010

My Story

I still have more to add and edit of this but here it is:


At the start of 2009, I was working retail full time to support myself through graduate school. It was at the end of January and the start of February that the swelling in my leg began. I don’t remember where it started swelling in my leg first. I had a required outfit I wore at the one retail job which consisted of high heels. This is probably what aggravated my condition, being on my feet for long periods of time in high heels.

I called the school clinic as the pain and swelling worsened at the beginning of March 2009. The nurse asked me to go straight to the ER in fear that I had a blood clot. I listened to her and after work, I went to the hospital. I sat at the hospital for hours as they did ultra sounds, blood tests, and I think an MRI. The ER doctor came to me when he had the results and said my leg was fine, there was nothing wrong with it. I looked down at my swollen leg and looked back up at him and told him my leg was obviously not normal and something was wrong with it. The ER doctor was rude and dismissive. I left the ER hopeless and angry. Something was wrong with me and I knew it even if this doctor didn’t.

I sought out a doctor at Weiss Hospital at the end of March in 2009. His specialty was vascular surgery. After many tests, he diagnosed me with May-Thurner Syndrome, a condition of the veins. I was scheduled for surgery in May and was going to have a stint put in my iliac vein. The day of the surgery, the doctor changed his mind and instead did an angioplasty. After the surgery and several days of rest and off my feet, my leg had gone down to near normal size. I remember it was the weekend of the fourth when I was so excited to wear a dress out. I thought I was fixed. Not long after I returned to work, the swelling returned as well. Luckily, in June, I landed an office job and was able to get off my feet. The swelling, however, continued to worsen.

The medical bills went through insurance and now I was receiving the bills. I had accumulated thousands in medical expenses. The out of pocket expenses escalated. My anesthesia alone for the surgery was $740 out of pocket. The surgery ended up being $860 out of pocket which I have just now paid down to $340 as of July 2010. The ER visit was about $200. The tests at Weiss prior to the surgery came to around $400. I had made not even $15,000 in 2009 working for near minimum wage in retail. Even when I landed the office jobs, they were not quite full time. I was drowning in debt by this point. The stress was overwhelming me. My leg only grew and grew. Due to the medical expenses, I did not seek more medical treatment until November 2009.

In the five months that I did not seek any medical help, my leg worsened further. Walking was painful. Sitting was painful. My clothes no longer fit. Shoes barely fit on my left foot. I walked with a limp and felt extremely self conscious about my leg. I viewed myself so critically. I was tired all of the time. My leg drained me. The medical expenses were draining me.

In November, I could not take it anymore and sought a second opinion from another vascular surgeon at Northwestern. I brought all of my medical records for the doctor to review. After looking at my medical records and talking with me for 5 minutes, he diagnosed me with Lymphedema. He told me this was a lifelong, chronic medical condition. I was in shock. I asked him if there was a cure and he said there was not. He then told me to go see a physical therapist that specializes in Lymphedema. He was cold and short and left the room within ten minutes. He was not at all fazed by the fact that he had just told me my life will forever be different. He didn’t explain to me what Lymphedema is. He did not explain what to expect in physical therapy. I left the office in tears.

The doctor was the first blow. The second blow was when my insurance informed me they would not cover the cost of the doctor visit because it was a second opinion. The ten minutes in the awful doctor’s office cost me $591.00. Things were not looking up and would get worse before they improved.

I looked through my health insurance for in network physical therapists. Ahtletico was in network and therefore I called and to see if they had a Lymphedema trained physical therapist. They said they did so I made an appointment. This was December 2009.

I did not know what to expect with the physical therapy and when I met my physical therapist, Beth, I thought things would get better. She was incredibly sweet and I thought this would be the help that I needed. My sessions consisted of exercises to build muscle in my leg and a brief manual lymph drainage massage. In the second or third session, Beth hooked me up to a machine that caused muscle spasms. She said this would help the lymph flow. For 20-30 minutes, I sat hooked up to this machine that made my leg spasm uncontrollably. It was incredibly uncomfortable. Beth gave me one short stretch bandage and said this bandage would help also. She had me put it directly on my skin and secure it with the metal clasps. Beth had given me no time frame for treatment. I wore my compression stockings every day but was not yet seeing a difference in my leg.

I went to visit my family in Florida at the end of December and part of January. I was wearing my compression stockings every day. When I returned from Florida, I had two more appointments which put me at 12 sessions with Beth. I started noticing a difference with my leg, but not the kind of difference I was hoping for.

Mid January, my leg and foot had become more swollen than ever before. My foot was so swollen, my shoes barely fit on it and I was forced to wear my sneakers. I had to stay home from work for several days because I could not walk on my foot due to the pain.

I knew something was wrong and that I needed help because whatever Beth was doing was not right. I bought a book written by specialists in Lymphedema, Living Well with Lymphedema. I learned from that book what therapy should have consisted of. I was supposed to learn how to give myself manual lymph drainage, how to bandage my legs, etc.

I researched and researched and found a doctor listed on a Lymphedema website, Dr. Joseph Feldman with North Shore University Health System. I called my school clinic and explained to them my situation. They had me come in to for an appointment. This incredibly kind nurse helped me get a referral to see the new doctor. I then made an appointment with Dr. Feldman and he was wonderful. He was incredibly knowledgeable about Lymphedema and referred me to have occupational therapy at the rehabilitation center. He explained what Beth had done wrong. She had obviously not been trained in Lymphedema despite stating that she was. The machine may have worsened my condition.

I then started occupational therapy with two women in February. The first session they told me exactly what to expect; I was given an exact time frame 2 visits per week for 2-3 weeks. They taught me how to give myself a lymph drainage massage, to bandage my legs, how to care for my leg, what to avoid, etc. On the first visit, I was shown what bandaging was. This was a bit traumatic. I was told that during this intensive treatment, I was to wear my bandages every day. My bandaging consisted of 3 layers. The first layer was a stockinette which went on the bottom so that the short stretch bandages did not touch my skin. The second layer was a foam padding layer and the third layer was the short stretch bandages. I had five short stretch bandages to cover my entire left leg.

I had to learn how to do this on my own because I was to wear it every day for the next three weeks. After the three weeks, I was to wrap my leg every night. Now that I am so accustomed to wrapping, it isn’t a big deal. I have gotten used to it as part of my schedule. At the time though, I had to wear baggy pants to fit the bandaging and sneakers also. I felt ugly. I was relieved to find treatment but the treatment was overwhelming. Looking back, I was very depressed at the time. I was extremely self conscious and I remember crying often. My life was going to be different; there was no doubt about that.

The therapy included all of the bandages and supplies. When the three weeks were over, I had all of the resources I needed to manage this condition on my own. I was very grateful and still am for those two women who were my occupational therapists. They gave me strength to deal with this. They would listen to my worries about clothes and even shaving. Everything becomes an issue when you have Lymphedema, even shaving…

So here I am, now six months later. The pain in my leg has decreased considerably, I wrap my leg every night which keeps swelling down and I give myself the lymph drainage massage. My leg will probably never look like my right leg. I haven’t seen my inner ankle bone in my left foot in over a year! My leg does seem to get better with exercise and healthy eating. Although, I was told to never go back to running because it will worsen swelling and my condition. I wear my compression stocking every day and wrap my leg each night. It takes about 30 minutes to wrap my leg each night. There have been nights that I stay out until 2 or 3 in the morning but I always wrap my leg when I get home. I actually feel better once my leg is wrapped because I do not feel the tightness and swelling when it is wrapped.

4 comments:

af123 said...

Hi Lindsay, great blog! Re. wrapping and compressing and MLD and the rest, I think the quote that sums it up is: "it's like the iron lung for polio — it works, but it's certainly no way to live". Thankfully, this came from the brilliant Stanley Rockson MD at Stanford, who is actively researching a way to actually TREAT the condition. In fact, if you have an hour free ever and feel like being cheered up, have a look at this from last year:

http://www.researchchannel.org/prog/displayevent.aspx?rID=29618&fID=813

Take care and hope you keep the blog going!

Anonymous said...

Hi Lindsay,
I cannot thank you enough for your blog and reading your experiences. I couldn't believe what I was reading because our experiences are so similar. Only difference is that you are taking care of lymph edema much earlier in your life. I really wish I would have done the same. But I was referred to a wonderful therapist and the bandaging is working for me. I have been going through bandaging and lymph drainage massage for past two and half weeks and I see a wonderful difference. I have a long way to go though and I do have in both legs but the left has always been the worse. Anyway thank you for this wonderful blog. I refer to often just for me to see that I am not alone in this struggle to deal with this problem.

me and my leg xo said...

Hi Lindsay this is great and im sure a lot of people can relate.
ive just started a blog www.kegofaleg.blogspot.com
if you're interested at all as well.
thanks :O)

Michelle S. said...

Hi Lindsay,
I just found your blog and wanted to thank you for sharing. I notice that you haven't updated in a few months and hope that all is going well with your lymphedema.
I could completely relate to your experience right down to the ER doc's reaction and the health insurance nightmare, not to mention how fun it is to be a 20 something and have to wear the bandages 24/7 during therapy. I too had a long road to diagnosis (about a year), and after 4 years, I'm finally down to the size my foot/leg was before it started to puff. Don't despair- it can be done with a lot of work. Bandaging is a huge pain, and kudos for you doing it every night- it was something that I struggled with, particularly when I had overnight guests.
I'm not sure about your situation and where you are at with therapy, but have you ever tried a Circaid or another similar bandaging alternative? I recently got some for night time wear, and they have been a godsend. Instead of wrapping, and wrapping, and wrapping some more, I just have to put on two different velcro parts and I'm all set for sleep. These can get a bit pricey, but it is a huge relief not to have to worry about the wrapping and bandage care. Plus they last about a year or so verses the 3-6 months of wear the bandages got.
Good luck on your journey, and again thank you for your posts- it's good to know that there are other people out there who can relate.