Libby's family and friends are uniting to support her during this hard time. Please join in the support, as Libby fights to keep her leg.
This is the last thing anyone wants to do and I'm finding it very difficult, but I will go to the end of the universe to help the woman I love and gather support for her as she fights yet another battle. Here goes. Libby, how do I define her? She is brave, courageous, caring, selfless, loving, would give the shirt off of her own back for someone in need, feed and care for any creature that needed her, she is quite frankly, a rare find. Libby is 31 years old. She looks quite healthy from a distance and even up close most days. On an average day, not many would know by just looking at her that she fights a raging painful battle within her body everyday. I am somewhat new at this, so bare with me. At the age of 6 years old, Libby was pushed off of some bars by bullies at school during recess. This was before they had the cushion underneath play yard equipment instead she fell on asphalt. She sustained a badly broken heel to her left foot. During her healing time while wearing a cast, she complained often to her mom that the pain wasn't better. After it was removed, the doctor examined her leg noticing remarkable changes: purple/bluish tint, swelling, cold to the touch and when he doctor touched her, she would scream out in agony and she couldn't walk. Not something you see after a healed injury. After many tests, he couldn't find anything wrong and sent her home with physical therapy on board. As years went by, her leg never got better. Doctors would recast her for weeks on end, administer cortisone shots directly into her heel, and finally they would throw their hands up and send her to the next doctor. Finally in April of 1993, Libby was sent to a Physical Medicine and Rehabilitation doctor. This doctor, Ross Emery, ordered a few tests before Libby was seen. At her appointment, Dr. Ross came into the room, took one look at her foot, did a quick exam and then immediately asked Libby's mom, Rhonda, to speak with him in the other room. Once they were in the room, he started crying. He explained to Rhonda that after reading her chart he thought for sure Libby's symptoms were not accurate because at the time this disease was only seen in patients ages 45 and older, but after seeing her foot and the shocking visible symptoms, he knew exactly what she had and the most shocking part for him was Libby must've been the youngest in history to be diagnosed let alone to have all of this start when she was a mere 6 years old. Libby was diagnosed with CRPS or complex regional pain syndrome on that day. She has been fighting everyday since to maintain a somewhat "normal" life. Her body hasn't been the most cooperative. She has exhausted almost every treatment that is available including: nerve conduction studies, nerve blocks (over 50 of them administered), epidurals (over 20 of them), epidural with catheterization (15 or more), bier blocks, stellate ganglion blocks, lidocaine injections, steroid injections, over 145 hospital stays at Santa Barbara Rehab Institute, UCLA Children's, UCSF Children's, LSPCH at Stanford, Kaiser, Brigham and Women's and Mass. General in Boston, Stanford Medical and now OHSU in Portland Oregon,2-35 week stays spent each time inpatient doing intense PT, 6 SCS surgeries that have all failed, Ketamine infusion, mirror therapy,biofeedback, guided imagery, acupuncture, relaxation techniques,TENS/surface electrode stimulation therapy, hyperbaric O2 tank therapy, desensitization therapy, water therapy, etc. The list could go on for days. Her list of medications she has taken over the years is even more shocking. Many of them were used as more of an experiment than actually knowing for sure they would work. Everything from anti-seizure to anti-depressants to anti-spasms to hypnotics. To heavy pain killers ranging from tramadol to ms contin to dilaudid to fentanyl to lidocaine to every combo in between. She is currently having the worst battle of CRPS she has ever experienced. Already spending a week inpatient at OHSU because her pain was out of control and sending her body into shock. Her doctors at OHSU recently told us she has 3 treatments left to try. In her doctor's words, they are the "hail marys" of treatments. The first one is an anti-seizure drug that is very uncommon and very rarely used for her condition because of the risk it will have on her health. The second medication is bisphosphonate therapy which is used for bad cases of osteoporosis. It has been known to help reduce the damage to bones for CRPS patients. Although, it is again, not a commonly used treatment. The risk of femoral fractures are great because of already weakened leg bones. Now the big one. IVIg or intravenous immunoglobulin infusion therapy. IVIg is a plasma product formed by taking antibodies from donors and mixing them together. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. This treatment has been quite successful in treating many different illnesses. From immune deficiencies to autoimmune disorders to transplant patients to leukemia to MS to even treating asthma. It has been mildly studied for CRPS, but isn't a guarantee.Libby's CRPS is one of the most aggressive her doctors have ever seen. Making it extremely hard to treat. Her immune system has fought for so long to keep her body healthy, that it now needs a helping hand and a helping hand fast. IVIg is unbelievably expensive. We were just informed her health care coverage will not cover her treatment as this time, so things have been coming out of pocket. This may change in the future, but for now, we have to pay out of pocket.IVIg infusion is the best hope we have in order to save her leg. A single IVIg infusion costs about $3000 for a child and $10,000 for an adult. The breakdown is 2g of IVIg per kg of body weight. She weighs about 50kg and still it will be roughly$2000 per day of infusion. Treatment is 5 straight days of 5-6 hour infusions each day and repeated every 3-4 weeks for 3-6 months depending on her response. This is an unbelievable expense. Her doctors want to give her a 5 day infusion first to see how it affects her. If none of these final treatments work, she is faced with amputation. Something that is rarely preformed with CRPS, but few studies have shown a great outcome with almost full recovery and no trace of disease. Because she has fought for so long, Libby and her doctors have decided this will be the road taken if all else fails. I am on board to support her and be right by her side through any and everything she will face. She has fought tooth and nail to live a "normal" life and to be independent. Not many people could guess by looking at her that she is as sick as she is. She hides it well and honestly doesn't want people to pity her or know just how sick she is because she wants to be treated normal. She still gets up everyday, takes care of her pups, volunteers her time helping others, just graduated from school with honors, but unfortunately she is very limited in her mobility and this flare up is taking a huge toll on her. A couple of years ago, Libby's amazing friends came together and purchased her a new pair of crutches as a surprise. She has used them everyday since she received them. They are now falling apart. We repair them on a daily basis. She cherishes those crutches, always talking so highly of the friends that helped her and how one day she will repay them. Her insurance is also refusing her the equipment she needs to be independent like a decent wheelchair for long distance, crutches, home safety supplies like a shower chair, etc. I am reaching out for help, desperate to make her life easier and get her the help she needs for her treatments and equipment. Whether she will be able to keep her leg or not, she will require mobility assistance devices for the rest of her life, and prosthetics if she has to have her leg amputated. I am doing everything in my power as her partner to help her financially. Our financial goal is set very low in comparison to what her health bills are adding up to and how expensive they're about to become, but I am seeking some help, not a direct hand out. I would travel to the end of the universe for her if that is what it would take. I am asking for help out of desperation and because she cannot be left alone to do everything on her own, I have to take time off work causing even more financial burden. I love Libby and hate to see her go through this alone, and I cannot in my right mind leave her at home to struggle to do things on her own. Please join me in supporting her. Every smile brought to her face, every word of encouragement, every dollar that is raised, will go to a young woman who has fought really hard on her own for many years. Family and friends have put together fundraisers before and the love and support has been amazing. It's asking a lot, but will you please join the support again and please spread the word, repost, and share with everyone you know. Let's get Libby the treatment she needs.Just her story alone, needs to be shared and heard. The more people that know about CRPS, the more awareness there is about it and a better chance for people to fight for a cure. Please help me with this fight however you can. Thank you and god bless, Jim