I am happy to have found this location online where people with this condition are coming together to share info. I have been dealing with this for over a year but just recently got a firm diagnosis. It will help for me to summarize the last year's events and what has led up to this point.
In April of 2012 I had been working a lot, as I had started a small business in January and was looking to succeed. All winter (Jan,Feb,March) I had been coughing a nagging "winter cough" and when it did not go away by April, I decided to go to a primary care doctor recently assigned to me. Overall, I did not feel good in general, but blamed it on overwork, cold weather, drafty apartment. etc. So the PCP refers me to a Pulmonologist and Cardiologist for tests. I am concerned slightly since I had once been told (early 30's) that I had a weakened heart muscle which would likely turn to CHF (Congestive Heart Failure) later in life, and I just turned 40. The Pulmonologist was fairly certain it was CHF and sent me on to have an Echo with Cardiology. The Cardio doc told me absolutely not - heart is fine and no problems there. I was experiencing "edema" along with my other symptoms and he stated this must be caused by something else. I have Hypothyroidism as well so I wondered if it could be that.
In the midst of this, in late April, I got what I thought was a flu. My temp was up around 104 for several days, and toward the end of the week I had it, my leg (left) felt odd...heavy and sore. Overnight, on Friday, I began to feel swelling in my thigh and by Saturday it was enormous swelling, in the groin area. When it began to weep, and my fever spiked again over 104, I went to the ER. I was quickly brought into surgery where a huge portion of soft tissue on my left thigh was removed. I had Necrotizing Fasciitis. I spent one week in ICU and then spent two months in a Rehab facility for wound care (that is one huge wound). While in rehab, two things started happening. Swelling in my abdomen started, and also in my left leg, especially when I had PT or walked about. No one seemed overly concerned about it since my wound was still healing and I did have a wound vac, which could account for the swelling.
Once home, I had home nursing for another two months - swelling continued to get worse. I was so puzzled because I was unsure whether to make my leg work with exercises and walking, or rest and elevate while the wound healed. I was advised to rest and elevate. I got help doing chores and such, as I live alone. I elevated a lot and walked very little. My leg got worse as my wound got better, and more disturbing to me, the abdominal swelling got more and more intense. I was overweight before the NF struck, and now I was gaining weight from inactivity but also experiencing this swelling (which was starting to feel quite hard on my abdomen). I went to the PCP and they were clueless for lack of a better word. This was frustrating, and I went on to see the surgeon again, for some insight. They ordered an ultrasound of the abdomen, but it came back normal (?) This is the first time lymphedema was *suggested* but I was told a PCP would have to diagnose it!! Ok. Time to switch PCPs (which I did, twice).
BOTH TIMES...each PCP had no clue. By now, we're in January of 2013 and I've just been told that I need to exercise and lose weight, and in response to my huge foot and leg, and hardened mass across my abdomen, that this is common when obese. Really? I was so upset I cried in the car the whole way home. Something was wrong and these ppl could care less, and were clueless. I filed a complaint on this PCP as she had barely examined my abdomen, and I was given such a flim-flam answer. She is an internal medicine doctor, and that was the best she could do?
I got very depressed (more than I was) and started to just accept that I was stuck with this horrible swelling. I started coughing again, and was feeling completely crappy. The Cardiologist had given me Lasix for when I was really edemic so from time to time I would pop one and have slight relief, but the swelling never went away, and my foot on the left leg was really starting to look disfigured.
April came around again...one year since the nightmare of NF surgery and that whole fiasco. My leg started to hurt and I got a little nervous...for good reason, as it quickly got fiery red and sore. I was at wits end and also just completely out of gas with all that has happened. I called the nurse hotline the hospital has, to see if these symptoms warranted an ER visit, and the nurse said yes, ASAP. 911...Ambulance to the ER...I was tested all day long for things, then admitted. I wasn't told I had Cellulitis till the evening, but I was pretty sure that is what it was. I had it once before since my surgery. This time, they admitted me for a week of IV antibiotics. I also had a lot of tests during the week and was officially told I had lymphedema. I was very sad it took till my leg was double the size of the other leg and my foot not even looking like a foot before I was DX'ed. From all I have read so far, this isn't so uncommon, sadly.
I was discharged with an order to see one of the hospital's therapists for Lymphedema treatment and also to get connected with a new PCP. This is the hardest thing of all...I don't trust doctors a whole lot after being misdiagnosed by SEVERAL PCPs! However, the therapist can't write a treatment plan without a PCP to follow it with me. I do believe this treatment may help so I need to play the game.
I am walking so poorly now and I have NO endurance. I get out of breath with a short walk from the car to the doctor's building. I also have a lot of pain and issues with my leg. I find it near impossible to lose weight without exercise, even eating in a very disciplined way with low to no salt and watching sugar intake, etc. I am barely maintaining my weight by doing this. I also have no idea how much I weight as I am dealing with swelling, fluid retention etc. My abdomen is actually the worst. The Lymphedema Therapist (I've had one visit) was not sure she could do compression on my leg(s)? since she did not want to exacerbate the abdomen. Now what? She also told me the abdomen is very difficult to compress. In her voice, she sounded defeated before she has even written that needed treatment plan.
I think I have missed a lot of spots in this story, but this is it for the most part. I am disabled from this entire experience. I can't believe that my life will "end" this way so I have to have some hope things will improve, and the solutions will reveal themselves. In the meantime, I keep reading and hoping for insight from anyone willing to give it. I have pleural effusion and now am on Oxygen 24/7. Breathing is sometimes hard. I sleep hardly at all. Psychologically, I am a mess and struggle to not be in deep depression. I am only 41 and I just can't accept this is all I have to look forward to. This last year of my life has left me in shock, almost. It is hard to explain, but writing it out like this helps.