@prairiesmoke thank you for sharing that information. I've been in the exact situation you are in. Factor V Leiden completely battles against LV. I found out when I was around 20-21 after my 2nd clot. My regular GP (General Practitioner) and 5 different teams of specialists continue to hit a wall when it comes to healing my wounds because of both conditions.
I wonder if there's a direct relation between Factor V & Livedoid Vasculopathy? I've found others (rare) with the same conditions we have and they too have persistent unresolved wounds.
My 1st initial wound (left leg) opened up August of 2006 and hasn't closed since. In fact, this one persistent wound has grown at a stable rate and is now the size of a Canadian Football. I have another wound on the lower left leg were my ankle is, this one is about the size of a baseball. My 3rd open wound is on my right leg, which is about the size of a concert ticket. All 3 wounds change shape and size during the seasons, especially during winter.
Like you, I too have to use compression bandages (ie Coban 2 - 2 Layer Compression Bandages) which if I remove them and keep them off, my feet and ankles will blow up like a balloon and give me a great deal of pain. My legs have not been able to be wet (submerged in water) for over 9 years, which I'm sure you can understand is something hard to deal with. Water used to be my friend and is now my enemy due to bacteria in the water.
I've found the PERFECT shower companion, I use a plastic leg wrap system found at Walmart that is designed to keep leg casts dry while showering!!! Look for "ArmRX Leg Protectors". I usually find them in the isle with bandages, compressions, etc. They are packages in small white square plastic bags for about $10ea CND. The absolute best discovery in years. I used to have to sit on a specially designed chair with my legs hanging out of the shower and protected with a towel. Very uncomfortable and annoying. Not anymore, this one small discovery gave me a different type of hope, the hope to learn to live with these persistent daemons.
For a time in my early years, I would disregard what my doctors said and just washed accordingly without protection for my legs. This one act led to a 2-week stay at a local hospital in complete isolation. They feared I was contagious to those in ICU. I also had to have a small surgery to remove dead sluff* in order to prevent further infection, including amputation.
I think a big fear for LV suffers is what will happen later on? All of us grow old, bones aren't as strong as they used to be, immune systems don't react as well, etc. What will happen to us after 10-15-20 years suffering the same health conditions? I'm 37 now and my legs are no better than someone who is 65+ who has had a good productive life.
I apologize, I'm rambling on with no real point. Just nice to speak to you all who understand for once. No one in my life around me can fully understand the suffering that we all go through on a daily basis. Not just from one thing, but from many factors (pun intended) that seem to be coming to us at all angles.
Thanks for listening!
Martin 🙂
Hi Martin:
Thanks for more interesting stuff. I've been using the cast protectors to shower for about 3 years now and find they work well for a while but eventually leak. So I go through them at the rate of around 1 to 2 per month. Haven't always been able to tell what makes them fail, but they seem to get pinholes maybe from sharp edges on the drain cover and sometimes the top seal rolls over and lets water in. Still all in all a good solution. Much better than the alternative you describe.
Your open ulcers - wounds - are fairly large - much larger than mine, although mine have typically come and gone over an area about the same size as you describe. So I have large patches of scar tissue around both ankles. I do have one persistent ulcer that's been with me for about 2 years now - this is the one that's being treated with dehydrated amniotic-chorionic tissue.
Re age - I'm now 73. My first symptoms appeared when I was 58 - some mottled rust spots on one lower leg. No pain or ulceration for the first year or two. At that time the symptoms were seasonal - appear in spring and subside in winter. The first ulcerations were fairly mild and I simply covered them with Band-Aids. As time went on and they refused to heal I sought help from my family physician, who in retrospect, didn't really understand or recognize the condition. Still the lesions remained somewhat transient or seasonal. Three years ago, during a period when I was relatively asymptomatic, I had a total knee replacement which left me with a serious staph infection in the new prosthesis. Once that was finally diagnosed, they removed the new prosthetic knee and installed a temporary placeholder while I underwent 10 weeks of IV antibiotics (Vancomycin) to deal with the staph which had infiltrated the bones beyond the hardware implant. After being certified disease free, the temporary place holder was removed and a new prosthetic knee was installed.
That entire TKA process took most of 2013. A nerve block from the first TKA surgery went awry and left me with permanent nerve damage for extensive areas of the left leg. LV ulcers began to reappear after the first surgery and now in retrospect, the docs believe that the trauma of the nerve damage and of having 3 TKA surgeries on the same knee in the space of one year served to trigger the LV condition out of a period of relative dormancy. Interestingly, I've found a few studies that looked at the relation of LV-like conditions to trauma (accidents, surgeries, etc) and to high stress (i.e. on the job or a bad abusive relationship, etc). While not totally conclusive the studies I saw suggested that a causal relationship (high stress/trauma to LV-like symptoms) is likely.
Back to age - there is no doubt that I'm suffering more in general and taking longer to heal at age 73 than I was even 6 years ago, let alone15 years ago when the first symptoms appeared. The last 2 years have been particularly difficult because of the debilitating side effects of various Rx drugs. Long term Prednisone use has caused me to gain considerable weight and along with the nerve damage, caused me to tear the left Achilles tendon twice. The tendon could not be surgically repaired either time because of active LV ulceration near or over the Achilles area. As a consequence, I can no longer go on regular walks with my wife and our dog. Other exercising has likewise suffered. I now struggle to force myself to exercise where it used to be a pleasurable activity. I've had to give up most outdoor activities, including fly fishing as I can't do any water wading and no longer have the strength to wade in the currents. It's no secret that lack of exercise contributes to poorer general health which relates to the healing process. It's a vicious circle that only gets worse as a person ages.
Bottom line - it's vitally important as we age to keep up an exercise routine and, despite the difficulty, maintain a positive attitude to get the best healing results. This is true for everyone no matter what disease you may be blessed with.