Sandra, H.’s Story

From Lipedema to a shark bite leg with Lymphedema:

After 15 years of living with the diagnosis lipedema I wanted to take the chance of reducing that uncontrollable growth of fat tissue and getting rid of wearing compression garment each day. The liposuction is a common practice and kind of a standard operation which can be done at the doctor's place. In April 2019 my thighs were operated and in September 2019 I had another operation at the lower legs. During the second operation I already noticed some pain in my right leg which was weird as I wasn’t supposed to feel anything due to the local anesthesia. Afterwards I was given some strong painkiller and my boyfriend drove me back home where I had some rest. In the evening the pain got worse. I could hardly sleep that night.

In the morning we contacted the doctor again who then told me to go to ER. Upon arrival they weren’t sure wether I could stay as they weren’t specialized in plastic surgery. As my pain was out of proportion I begged so hard to get some painkillers that they took me in. Putting down my compression garment we saw dark violet and black blisters on my lower leg. They were very small but numerous. I was given antibiotics and painkillers. They did some ultrasound and took some sampling of the liquid the blisters were filled with. I was also told that liposuction would not help at all against lipedema and got asked why I had done that operation which was frustrating after such a long struggle with lipedema. The next day almost nothing happened. My pain was much better as I was on some drugs now. But I felt ill and could hardly wash myself. That day they opened one of the blisters which had grown by then.

On Sunday I suddenly was in pure fear that I’d get worse without any help - the blisters were already very big and dark blue/violet. I contacted the operation doctor again. He asked for pictures and wanted to talk to the doctor at the hospital. The assistance doctor who agreed to phone him then told me that he was on his way to see me (from a town 70K away). In between the doctor at the hospital opened a subcutaneous blister and took some sampling. Again he did ultrasound showing me the fascia. Furthermore he took some blood sampling as the days before. When the operation doctor arrived he argued with the doctor at the hospital about the diagnosis. They agreed to send me to another hospital for further treatment. When the results of the blood sampling arrived my CRP level was over 40. They took another blood sampling. The operation doctor was sure that I had NF. By then I did not know what that meant.

I was rushed to the other hospital with the ambulance. They brought me directly to OR and told me the latest blood sampling showed a CRP of 348. The doctor at the new hospital asked if I knew what NF meant and then explained me what’d happen without treatment. I thought they’d amputate my leg but he reassured me that they could keep it and that I would be able to do sports again. Of course I agreed to immediate debridement. When waking up my boyfriend was able to visit me for a minute. Unfortunately I don’t remember that. I only remember the night at ICU. As I still had a huge open wound they had brought me to a special room within ICU. I was treated like a burn victim grade 3. The first night was hard as I could not move and there were many blinking and beeping apparatus. I remember the next morning when the nurse gave me a telephone to call my boyfriend. Man, he was lucky to hear me. It got even better when the nurse told me that I could choose the food, get washed, etc. I felt really well treated and I am still very grateful for that.

They explained me that they needed to open the wound each day to check if there were leftovers of the toxic tissue. That was the hardest part of the day as it was extremely painful plus I could not watch them as I was too scared to see my leg. After four days one of the nurses insisted on me being transferred to the normal unit for burn victims. They put on a wound vac. Thanks to the great help of the pastor and one of the nurses from ICU I then learned to look at my leg. Stil it was hard to realize that all the soft tissue underneath the wound vac was missing.

After two days in a room with an old lady I was brought to another one where I should stay another 6 weeks. I was more than lucky that I had a great view from bed. In the beginning I could not move. Seeing the sunrise almost any morning gave me lots of hope and positivity. The longer I was there the more energy I got. Not only the visits of my beloved ones helped a lot. I also learned much about NF duo to the helpful information of NecFasc (and directly ordered the book). What’s best for someone who loves being active in nature? Right, giving her back those abilities. The wonderful physiotherapists organized a wheelchair and later on crutches. They gave me a Theraband to train in bed and allowed me to „train“ in their rooms when I was strong enough for doing so. I don’t think they knew how much they helped my mental health.

Ten days after putting me on the wound vac they did the first skin graft taking skin from my left thigh. I was not allowed to move my right leg the next five days which was hard for me as it felt like a step backwards doing literally everything in the bed again. Unfortunately not all of the skin was accepted by my right leg. They had to go for another two operations cutting off a tendon and skin grafting again. Besides the painful donation site getting out hundreds of staples wasn’t easy. Imagine Frankensteins movies. I looked exactly like that.

After 7 weeks I finally was sent home and then went to a rehab center for another 4 weeks. My mum organized physiotherapy treatment while I was waiting for rehab. So there was no break in treatment - which was great. At the burn rehab center I got a wonderful treatment including a sports program. My rehab goal was to walk without crutches and to cycle again. The first goal was reached after a week! The second one three days before dismissal. They did a wonderful job loosening all the fascial tensions in my ankle and knee. The scar massage was super painful but very helpful. What I liked most was the daily bathing as I don’t have a bathing tub at home. That was my treat each day. As well as training at the gym. All machines were adjustable to the needs of the training person. In my case I was not able to bend my knee in the beginning. So I started on a very wide angle. Besides treatment being in a rehab center is okay if you get to know people to chat, play games, etc. Luckily there was a group of really nice fellow patients that sweetened up that stay.

The Saturday before Christmas I was sent home. My parents picked me up and brought me to my flat. Walking up the stairs without having to pause or to take every single step with both legs felt great. Being back at my place gave me an incredibly good feeling. After Christmas Eve I went to my boyfriend’s place and told him that I wanted to try running again as the physiotherapists at the rehab center allowed me to do so. On December 30 we did some slow and easy run-walk-run for about 30 minutes. I could not believe that was happening and I was overwhelmed by my feelings crying out loud because of pure joy.

Coming back to work everyone was really supportive and they helped me where they could. Unfortunately I still can’t concentrate for 8 hours a day. That’s why I’m on part time now. I still have to see the physiotherapists twice a week as I have lymphedema now in my lower leg. They had to take out too many lymph channels. So again I wear compression garment each day. At least this type is more comfortable than the one I was given for lipedema treatment. Whats most annoying is the missing cushioning of the shin. As I’m a trail runner and cross fitter I have to pay so much attention now that I can’t focus 100 % on the movement itself. I do hurt myself quite regularly cause I’m still not used to care so much not to fall or hit something.

Besides functional restrictions I still work on my self acceptance. I do agree that we are all unique and we all have something we like more and something we like less about ourselves. Yet I cannot look in the mirror and fully accept my now shark bite looking leg. I do get professionell help and my boyfriend supports me very well not caring too much of how my leg looks now. Therapy helps me to get a better understanding of how I see life and myself. From the outside many people see a strong personality who won the fight against NF and has come back stronger. Looking inside I know that there has been a huge change in how I handle life and I’m sure I’m more aware and caring now.

Things I learned:

- Being patient with myself and others

- Listening to other people

- Gratefulness for anything in life - don’t take it as granted

- If you can dream it you can do it - maybe in another manner than originally planned

- All NF survivors are one big family

- I can go into cold water more easily now

- I am not my leg, but my leg is part of me

Things that annoy me:

- Having to wash the compression garment each day

- Moisturizing the leg twice a day

- Acting careful not to hurt the leg

- Not being able to feel if anyone or anything touches my leg

- The awkward feeling when stretching the knee after having bent for a few minutes

- Lymphedema

So all in all you see that the things I learned overweigh the things I dislike. Don’t get me wrong. I’m not happy about what happened but life isn’t over. There is always a path to follow and you create that path. If you’re for example in a wheelchair, open up the path, make it smoother. Just adapt and change. Life is constant change.

If you want to follow me or get in touch with me check my instagram account: necrotizing.fasciitis.survivor
I have some photos, but warning: they can be hard to look at. https://we.tl/t-JN1PQjzCbe

Best,
Sandra