My lymphedema was diagnosed about 10 years ago. Shortly after my first rounds with a severe case of cellulitis, I became seriously ill. All I knew in the befinning was that I had this infection that seemed to quickly spread, and landed me in the hospital. I had just found a temp job but lost that job because I was in the hospital over Christmas. Once that was done and over with, I thought all was ok. There appeared to be nothing else wrong with either of my legs.
Until several months later when cellulitis appeared in the same leg. At first, doctors didn’t take me seriously. But I kept getting sicker until it landed me in the hospital the next time with 106 fever, aware but unable to speak for myself. I was in the hospital for an month. All they did for me was to give me IV Lasix to make me lose weight, give me lots of water and tried to make me eat, even though eating made me sick. After nearly a month of wrapping my legs for reasons they would not tell me and ignoring my infection, I finally cornered my doctor and asked what they were going to do about that, and asking what the lasix had to do with the infection. He gave me a name I never heard of before. When I asked him what the difference between that and the infection was, he got real silent. Yes, I lost nearly 100 lbs of water weight, which is what I thought he was trying to do. But this infection which started at my ankle had moved its way 2/3 the way up my calf and caused large blisters. I was immediatly put on IV antibiotics and assigned another doctor for the next week of my stay.
Once home, I was referred to a wound care physician who took care of the painful dibreding of the blisters. It was during an emergency trip to this clinic that I received the lymphedema diagnosis. I was quickly referred to a local lymphedema clinic for care. After a few weeks of the compression wraps and a little bit of the Manual Lymph Drainage, I was discharged. I had some success in the interim but the last since the last few sessions were no better than the first, they could not extend the sessions. They also would give no referrals as to where to go or what to do with my lymphedema.
I wrapped myself at home but with little success as I became unsure as to what to do. I scoured the medical community to try and find and find another local lymphedema specialist. I only found one-in the outpatient adult rehabilitation in the other hospital. But to try and find a doctor referral was near impossible. I was either told there was nothing wrong with me, or that I am just very fat, and need to lose weight. Only thing I was offered were some nutrition classes for diabetics. Thank God I do not have diabetes. Lymphedema is enough
! But I did try it for a very short time.
Then came another of many episodes of cellulitis. I went to the emergency room of the other hospital and got a referral from one of their physicians. I also had my initial contact with the lady who started the lymphedema program at that hospital-what a wonderful woman! She took the time to explain my condition to me and moved the necessary referral on the the appropriate specialist.
I started there, and my legs immediatly responded to compression.
My specialist started slowly with my feet and was ready to go above the knees. At one point the OT asked why I did not receive help with my legs before. I was a textbook case. A textbook case. All this time I was told I am fat, and here I am in her office with a textbook case of lymphedema. Things in her office started going well.
One problem. I had difficulty finding someone to help wrap and with other necessary things. I lived in a church and it seemed everyone was too busy to come to my appointments with me. I did, however, find a couple of ladies willing to help, upon the assignment of the pastor. One of the ladies helped run and manage the church.
The other managed the food pantry. Each had their opinions of how I should be wrapped, and they eventually became non-compliant with what needed to be done. Their major issues seemed to be that they did not like the wraps, or anything to do with them, even though they could see a visible progress at their hands. The cheif complaint was that it was too tight. They could not possibly expect me to go around in wraps all the time anyway. By the same token, when I brought something else home to try, they did not like that either. Eventually, they refused to help me unless I went to Denver for help.
So, go to Denver I did. I found a hospital that would take my insurance and an intern/pt that would help me. I had several appointments set up, come to find out, my helpers did not like that either. I played the rounds with leadership, come to find they wanted me to get a referral back to Colorado Springs for a doctor who specializes in lymphedema who would refer me to another OT who would help me.
Two problems. There seems to be no such a thing as a doctor who specializes in lymphedema. The best I can do is get a doctor referral to outpatient lymphedema. I had that referral and they clearly did not like this.
By this time, the time I had at the outpatient rehab at the hospital I was doing well at would no longer accept me. Needless to say, insurance does not pay for 2 specialists at a time. My rides ran out to
Denver and I could no longer see the one here in town.
Since then I wrap myself, what I can. That is only up to my knees. My calves keep getting larger and larger and larger….
I have spent upwards of $500 on supplies so that I would have plenty.
I sleep in a lymphedema pump that was paid for by insurance. It works so well, I need a fitting for other sleeves. But my prior pcp kept after me for the barriactric suugery and would not make the proper referral.
I have had numerous recurring cellulitis infections since then.
At this point in time, I have lost count of how many times I have had this. My most recent episode started about 3 months ago. I went to my pcp because my right leg was weeping. He did not even look at it. Instead he tried to force feed the gastric bypass operation, when the surgeon he already sent me to had refused to do this because of my multiple things going on. He took a look at my large legs and confirmed the lymphedema diagnosis, saying that there is no barriatric surgery that will fix the size of my legs.
Four days later, I found myself in a local hospital with the largest case of cellulitis I have ever had. It measured (no exaggeration) 16 inches x 8 inches and was weeping horribly by then. An infectious disease doctor pretty much chewed on my pcp for a misdiagnosis.
After a week in a local hospital, I was referred to a nursing home where I was told I would receive occupational therapy, physical therapy and the doctor wanted me there until the cellulitis was gone. I was told by the hospital social worked the place they were sending me to did indeed have a lymphedema specialist on board. I was doubting that I was being heard and almost had someone sign something stating that my lymphedema would be taken care of.
Suprise! They had no specialist on board, nor were they willing to send someone in for me. I was there for 3 weeks with very little physical or occupational therapy. The pain I was in was barely addressed. At the end of the 3 weeks, I was informed that my insurance would pay for no more care there, based on ‘how well’ I was doing in physical therapy and how well I had managed the stairs and the sidewalk outdoors. At this point, I had only been outside with a pt once and had not been on the stairs.
I was very quickly shuffled off home. At the time, my cellulitis was still there. I was sent home with antibiotics and told just how much it had improved. Improvement? The area still covered 10″x 8″ and it was that wound that caused the doctor to put me in a nursing facility in the first place. I was sent home with orders for brief home health care and was told that I’d be ok and that insurance would no longer pay for my stay, let alone inpatient lymphedema.
Home to me, at the time was in my church. One problem. Because I am constantly getting bigger with the under-care I receive, I was sent to live with my 70 year old mom. Reason? They told me they could no longer take care of my increasing needs, the main problem is that I am too fat.
So I am currently in my mom’s home where she has made it as comfortable as humanly possible. Since then I still have that infection I went to the hospital with. I have found a new doctor, and I have leaned on others in the community for support. The local Urgent care gave me some referrals to try and get some answers. I have one down-the wound care clinic said I only have a rash and there’s nothing they can do for me. I need to see the lymphedema clinic ASAP but did not provide a referral to get me there quicker than Urgent Care can. So I am on my own trying to get a referral with the person I have had the most success with.
