Recent diaries published by jtg, have inspired me to share my dealings with venous stasis skin ulcers caused by Lymphedema, on my lower legs. In the interest of full disclosure, I have included a GoFundMe link at the end, for help in getting my vehicle back on the road, but that is not my primary reason for posting. I just want people to know they aren’t alone if they are suffering from the same type of thing, and to please not be like me, and seek help as soon after an injury as possible. This is also my first attempt at publishing anything, so please, be gentle with the criticisms.
My story begins on a Friday back in May of 2000, when Sherman, my best buddy in the world, a black kitty cat, decided that morning to bite me right by the ankle. Lots of blood, but once I washed that off, it seemed to be done,and I chose not to dress it with any type of bandage or antibiotic stuff. Rest of the day, it did seep clear fluid out of the area, but that still didn't cause me to dress it or see a Dr. Went to the races (at a local dirt track) that night, while it still seeped, and then when I got home and went to bed, laid the still undressed spot on the same corner of the bed where my little buddy always slept.
Next morning, there was no more seeping, but I had a little ache on the top of my foot, I just chalked it up to loss if liquids and went about my day. Sunday came and the leg was hot, and more painful to walk. Monday still hot and I knew something needed to be done, so I got some Neosporin type stuff and did finally bandage it. Of course it was infected, but the Neosporin stuff seemed to heal it,so I didn't go to a Dr.
Couple of years later, the leg is obviously growing, but it wasn't bothering me. Did make trips to 4 different Dr's over the next 4-5 years, all of whom blamed the leg swelling on my weight and nothing else. All they managed to do was tick me off, especially since I had no health insurance at the time (weight was a fairly disqualifying factor).
Around 2007, the leg started seeping a little fluid, but away from the original injury, I believe it was from the swelling, it finally broke down the skin. About this time, Dad developed some kind of wound on his leg, and went to a Dr (he also didn't have insurance, but his girlfriend made him). I didn't actually have a wound yet, but our other symptoms were similar, so he paid attention to what they gave him, and we got the same dressing type things (thank you internet shopping) for me. I did develop another infection around this time, and found a Dr who was willing to give me antibiotics, and was not so fast to blame solely my weight for the issues. By now I was learning that the fluid (lymph fluid) that seeped out, was very corrosive, and slowly broke down the skin on my leg, which is what caused the wound that is there now.
Well, Dad passed away in March of 2009, from an issue unrelated to the leg wound, and I was in a decline for much longer than I thought I had been, just didn't realize it. Started taking the antibiotic that Dad had been on(different from mine, in addition to the one I was already taking), and started feeling better again, so just kept up that regimen. Beginning of June2009, the pharmacy realized Dad was no longer living and wouldn't fill the script for that med, so I had to discontinue. Last week of June 2009, I was in such bad shape that I could no longer get to our store to run it, and called the Dr that Dad and I had shared, to ask if he could prescribe for me,the same med Dad had been taking. Believe I got them on the last Monday of June and started taking them.
By that Friday, July 2, I was well enough to go run some errands. On my second stop, which was to get gas, I looked down and I was standing in a puddle of blood. Bear in mind, at this point I still had no insurance. I had ordered a pizza before stepping out of my vehicle at the gas pump, so I called the pizza place to see if they could bring it out to me when I got there, and I took that to the park to eat and assess the situation. Fortunately I had stopped bleeding. Called a couple of relatives and ignored their advice (GO TO THE HOSPITAL), and went back home. Curiosity got the better of me, so I took the dressings off my leg and it started bleeding again. This time I did what I really did not want to do, and called an ambulance. They took me to a small local hospital,and then transferred me to a larger one in a nearby city.
The next 2 hours after I got there were pure hell, even with at least 2doses of morphine. The initial cleaning of the wounds, I have no words that can describe how bad it was. Spent a week there, before being released, and starting some dressing change regimen at my now local hospital. December 2009, I again found myself not responding to antibiotics, and got tossed into that city hospital again. This time for2 weeks. When I got back out, since I couldn't pay on the first round of PT at this local hospital, they dropped me, so I went to the hospital the same distance the opposite direction from where I lived, for treatment. Fared a teensy bit better there, with daily dressing changes and a weekly trip to the Wound Clinic, but they also dropped me around Labor Day 2010.
Finally in May of 2011, I got onto Medicaid, thanks in part to the Expansion that occurred under the ACA. I was a bit miffed about 2 hospitals dumping me, so I got dressing supplies through a prescription from my new Dr (actually an NP), and did the dressing changes myself. This continued until around October of 2012, when while doing my dressing change one evening, I was once again bleeding. I bit the bullet and went to ER. A day or two later, went to my NP, as requested by the ER people. And now that I had insurance,we were able to do a little more stuff. But, somewhere along the way(either right before or right after Dad passed), I had developed another wound on the other leg.
We had done quite well with getting the wounds smaller. With actual trained staff doing the wound cleaning and dressing changes (the cleaning was nowhere near as bad as that first time), and a dedicated NP staying on top of cultures and then prescribing meds. We actually got the one leg healed,and the other was looking good, also making big gains. But, around March or April of 2014, my NP decided to move back to MN to be closer to her family,so I got a new NP.
The new NP wasn't too crazy about the antibiotic use. She would prescribe when I obviously had an issue, but there were times I had to beg fora culture before it would happen. Thus, I regressed a little. May of 2015, I found myself going to the Wound Clinic again.
Fast forward to the end of 2021. The wounds aren’t necessarily getting smaller, but the Wound Dr and most of the nurses I encounter, keep saying there is new skin growth and good “granulation”in the wound bed, and that’s what keeps me going.
A new challenge arose near the end of September. My vehicle broke down while en route to the Wound Clinic. While Medicaid will pay for transportation to and from any and all appointments, the ride companies aren’t as reliable as I had been on my own prior to my vehicle breaking down. I’ve missed 4 appointments due to a ride company being a no-show for one reason or another. Sure, I’ve voluntarily skipped a couple, due to either a shortage of dressing supplies (whole other issue, not getting into that here) or holidays that even if I was driving myself, I wouldn’t have gotten paid for the mileage, so I decided not to chance hoping for a ride only to be disappointed. For now, I also have to ask for a favor from the drivers, in order to get some groceries, since I don’t have a waiver for non-medical trips, and there happens to be a 2 year waiting list for that waiver.
Which brings me to why I decided to include the previous paragraph. I have a GoFundMe set up to raise money to fix my vehicle, and would really appreciate it if you would take a look at it, and if you feel compelled, contribute. Sharing on any social media platform that you participate on would help too. Link is: https://gofund.me/5fb6af05
Thank you for reading.