I'm in approximately my last week of a long hospital stay. Six and a half weeks ago, I had a flap surgery to repair my pressure sore that I've had for over a year. It's been a tough six weeks... once I had the surgery, I've remained in the hospital to receive specialized care needed to full recover. Until last week I laid in a special air and sand bed 24 hours a day for 6 weeks and a day. I was allowed to lay on my right side and on my stomach only during that time, without being allowed out of bed at all. It's been a pretty difficult recovery. I've also had diathermy therapy, which involves using thermal energy to accelerate the healing process of the wound/incision, extra supplements which have been shown to help heal wounds, a high protein/high calorie diet (to help my body heal), as well as physical therapy. Now that I'm at the end of my stay, we've ramped up the physical and occupational therapy so I can regain my strength in order to go home.
Speaking of regaining my strength... Do you want to know what happens when you lay flat for 42 days, even if you have therapy to move your arms and legs while laying flat??? Turns out your ab muscles and back muscles take a vacation and go to Cabo without you. :) The first few days I've been out of bed have been...difficult...to say the least. I don't think my muscles have come back from their vacation yet, because I'm still looking for them! Each day is better than the day before, and I'm making pretty good progress (according to my therapists and the nurses) in recovering. I didn't expect this part of it to be so difficult...it's been not only hard physically, but hard psychologically as well.
I met with representatives of a medical company today who have experience getting standing wheelchairs covered. I currently have different health insurance than I had last year (for the next few months), so we're going to try our best to get them to cover a standing wheelchair. I'm prepared for the answer to be no, as the odds of course are not in my favor, but I'm hoping nonetheless. The paperwork should be done in about a week, and then it's just a waiting game.
Please continue to spread the word about my story... If this reaches 1,000 people, and if those 1,000 are able to donate $10, I'll have enough to cover most of the costs of the wheelchair if insurance denies the standing chair. Just think $10 can make a HUGE difference. Enough $10 donations can make the difference in my returning back to work long term, supporting my family, and continuing my life work of making the difference in the lives of children and their families. I've come too far to give up my life and my dreams.
Just a quick update for everyone... First, thank you so much for all your kind words, thoughts and prayers. I've been grateful for them, especially over this past week.
I had my flap surgery on Friday. I was worried, as surgery tends to never go well for me, as I have difficulty with anesthesia. I have to say, this was the best surgical experience I've ever had (this was surgery #19 for me). I was able to be put under general anesthesia with no difficulty and even better, had no difficulty once I woke up from surgery. I normally am very ill afterwards for at least 12 hours. This anethesiologist was hands down, the best one I've ever had.
The surgery went "textbook perfect". Muscle and skin from my left hip/buttock was used to cover the area once all the tissue affected by the pressure sore was removed. I have a 31 cm line of sutures on my left 'cheek', and I'm quite sore, but doing well. I was transferred quickly (within 24 hours) to the rehab floor, and have begun my recovery! I have this neat bed I lay in that is a special circulating air bed...sounds like there is a vacuum on in my room all the time. :) It helps keep pressure off sensitive area of my body while I heal...and it's quite comfortable!
My next goal is to get through my rehab stay...which is not exactly set in stone time-wise. I'm prepared to stay here until sometime in June. Once I get home I will be able to devote more time and energy to getting the standing wheelchair.
Again, please keep spreading the word for me! Anything anyone can do to help is wonderful. I'm blessed to have such supportive friends and family who are always willing to help. Thanks so much for your time and efforts to keeping my project alive and going! I'm looking forward to taking my life back and getting back to 'normal'!
Hi everyone! Just a little update. Sorry I've been MIA the past couple months. Things have gotten a bit difficult, but we're getting through it.
In January I had to take an official leave of absence from work because of the pressure sore I'm still dealing with. That means not only no paycheck but no benefits as well, and we had to get health insurance through my husband. Let's just say I miss my old health insurance...it was stellar! This insurance is costing us an enormous amount of money, and they are covering about half of what the old insurance covered, so our out of pocket has gone up tremendously. We are currently spending about $1100/month between premiums and out of pocket expenses for medical right now, and that doesn't include what we will need to pay for my surgery, and we're doing this without my income. Things are so tight they are squeaking. Actually, it quit squeaking because it got too tight to squeak!
Speaking of surgery... tomorrow I will have what is known as a "flap" surgery for the pressure sore. Hopefully this will take care of the problem for good, but it's not going to be an easy or simple procedure or recovery. The hard part is beginning...
For the surgery to happen, the wound must initially be made larger (go figure...sounds counter intuitive, right?). Muscle will be taken from another part of my body and be 'flapped' over the wound, and the wound closed. I will be in a rehab hospital for 6 to 8 weeks post surgery in order to heal. Why rehab??? Because I need to be able to stay OFF the wound site completely and totally for the first 6 to 8 weeks. I will be in bed, on my stomach or side, the entire hospital stay. I will not be allowed to sit in bed or get out of bed for any reason at all for the entire stay (not for bathing or personal needs either). It's a pretty brutal recovery, but being forced to stay down increases the success rate of the surgery. If pressure is applied to the wound while it is healing, the new skin and muscle will die and slough off, and I'll be left with a bigger wound than I had to begin with, in addition to the 2nd wound from the donor site. It's critical that I remain flat so my body can heal.
I am still planning on getting the standing wheelchair...life has just gotten in the way the past couple months. I need help more than ever now. The original plan was to take out a loan for the remaining cost of the chair (about $14,000), but we can't do that right now, since I'm not working and we don't have the money at this point to make a loan payment. I plan on going to Voc Rehab after I get out of rehab to see if there is anything they can do. I was supposed to meet with them in December, but I was too sick to go, and since January I've been on even more restrictive bed rest (23 hours a day in bed), and haven't wanted to jeopardize healing by being up to go to any appointments that weren't strictly essential. Please share this with people and continue to spread the word. Anything anyone can give is truly appreciated. It's hard feeling trapped between a rock and a hard place... I can't go back to work unless I can get the standing wheelchair, but I have to go back to work to afford the standing wheelchair. It's an impossible situation. Anything helps. :)
I'm long overdue for an update! Sorry to disappear for so long...things got...interesting for awhile.
The week of Thanksgiving, I had a wound vac put on my pressure sore. It's pretty much the only treatment we hadn't tried yet. Given the location of the pressure sore (the seat bones on the left side), it's tricky to get put on and keep it on, and while it's helping, it's been its own source of frustration.
The first week of December did not begin well...I was feeling pretty awful and I developed a fever. The first day, I and my home health nurse thought maybe I was coming down with something. The 2nd day, the nurse said we needed to keep a close eye on it. The 3rd day the nurse and my doctor encouraged me to go to the emergency room because having a fever greater than 101 when you have a pressure sore is not a good combination.
I went to the emergency room (grumbling...I didn't want to go!), and I was actually presenting signs of sepsis. Apparently showing signs of sepsis will bump you to the front of the line and they see you pretty much immediately. One of my worries is that they wouldn't think it was a big deal (because I didn't think it was), and I would sit and wait hours for a bed and to be seen. Nope. I waited about 20 minutes at the most. They drew blood, started IVs and took samples to send to the lab, and then told me that since I was showing signs of sepsis, I was being admitted. Talk about frustrated...I wanted a dose of IV antibiotics, then a prescription for oral antibiotics so I could go home! Until they knew what kinds of bacteria I was growing, they wouldn't let me go home. I was inpatient for 4 (long) days.
On the 4th day we finally got some results...I was culturing at least 3 different bacteria, both gram positive rods and gram negative chains. My bone scan was negative for infection in the bone, but one of the doctors wanted to play it conservatively and treat me for it anyway. I got to go home with a PICC line in my arm and IV antibiotics for 6 weeks. I got SO VERY SICK from the antibiotics. I was on them for 3.5 weeks and then my wound care doctor had them discontinued because there was no evidence there was infection in the bone (remember...negative bone test), and he felt the risks outweighed the benefits at that point. It took almost 2 weeks for my system to return to normal from the side effects of the antibiotics (the infectious disease doctor likened the antibiotics I was on to a nuclear bomb for the body...really, really strong stuff).
Now...as for the wound itself. Bad news. It's gotten worse during the time I went back to work between October and January. What we thought was the bottom of the wound was actually NOT the bottom of the wound. It was more like a membrane...and when it got thin enough, it broke through and we discovered an area about the size of a ping pong ball that was an empty cavernous space (there should be muscle in that spot). Hence why we started with the wound vac. Apparently working has me up too much to be able to heal, and things were getting much worse, even though we didn't know it until November.
I've had to make the difficult decision to take a leave of absence from my job. This is different from FML...I've already used all my FML. I'm actually no longer considered an active employee and I will not be getting paid or have benefits during this time. We've had to take out health insurance through my husband, which is proving to be very expensive, and have half the income to pay for it. Things are going to be squeaky tight until I'm healed and can return back to work. No one knows how long that will be... it could be 2 or 3 months, or it could be 6 to 8 more months. We just don't know. I'm planning on meeting with a few agencies soon to explore some options. Unfortunately, it's hard to do that though, because I'm supposed to be on super strict bed rest (and meeting with people would require me to be up). I'm supposed to lay on my right side or my stomach all the time, only getting out of bed for necessities (restroom and getting something to eat). I even eat in bed.
Please try to spread the word...this page is still active, and help is still needed now more than ever, since we've lost my income. At this point, we realistically can't apply the fundraised money to a standing wheelchair and then just take out a loan to finance the rest...so I need to figure out how to raise even more money. I appreciate everyone's efforts, thoughts, prayers, and other assistance we've been given over the past several months. It's helped more than you can even know.
I know it's been a little while since I updated, but there wasn't much news to tell...until today! Last week I got some grim news. My pressure sore went from a depth of 1 cm to a depth of 4 cm, seemingly within a week. That was scary, and I was told to come in today for a consult with a surgeon, since it was getting bad so quickly. I pretty much figured I'd have to be pulled out of work and have surgery in the very near future. Well, today I got some good news and bad news at consultation with the surgeon, but mostly good news!
It turns out pressure sores are really tricky things...The sore happens from the inside out, as the bone rubs against an area receiving pressure. The first thing to break down is the muscle near the bone. The 2nd thing to break down is the fatty tissue which is between the muscle and the skin. The final thing to break down is the skin... often the skin breakdown is smaller than the internal sore, since it's the last area to break down. In my case, we thought my sore was a stage 3 sore, meaning it did not go to the bone, since it's only been about a cm deep, and there was a wound bed at the bottom of the sore. Turns out that was kind of a "false bottom" to my sore, and it really is a stage 4 sore (going all the way to the bone). The fatty tissue became thin enough where the bottom of the wound bed finally began to disintegrate. Today they discovered that there is a large empty chamber near the bone where muscle should be...it's about the size of a ping pong ball. This is why my wound hasn't healed superficially despite 6 months of treatment (well, 7 months as of Monday).
Now that we know this, the doctor wants to try ONE last treatment option (there's actually one left that we haven't tried...and we've tried 8 treatment protocols). Next week I'll be getting a wound vac put on my sore, and we'll trial it for 30 days. The dr said we should know for sure within the first 30 days whether or not the wound vac is going to work. If it shows good signs of healing, we'll keep doing it and it will take 3 or 4 months to fully heal. If there's not good healing within the first 30 days, he'll go ahead and take me out of work and do the surgery, which will have an 8 week recovery time. The best part? I can still work (and earn income!) while having the wound vac!!! The doctor knows I have a family, I have a job, and I'm pretty much out of Family Medical Leave (I only have a few days left...single digits), and he knows how much income I've lost. So, knowing that, the surgeon feels it would be a disservice to go straight to surgery before attempting to treat the wound with a wound vac. :) I've managed to buy myself 30 more days to make the decision as to whether or not surgery is needed.
Now...on to some bad news. About two weeks ago I received a phone call from the mobility specialist letting me know my insurance company has denied my standing wheelchair. We plan on appealing the decision and I have two more doctors willing to write letters of medical necessity for the standing wheelchair, to add to the first two letters that were written. Also, I have been in contact with Vocational Rehabilitation and plan on meeting with them soon to see if there is anything they can do to assist in this process.
Please, if you don't mind, keep me and my family in your thoughts and prayers... they have been felt, and they are moving mountains. I've seen many small miracles happen over the past 7 months, and know God is in control and watching over my little family. Please continue to share my story with others...because if funding is denied again by the insurance company, I'll be back up the proverbial creek without a paddle.
Have a happy and safe Thanksgiving and a great kick-off to the Holiday Season!
OK friends, I have GREAT THINGS to tell you! First, here is a picture of my van!!! Yes, it's mine! I have the title...just need to get it registered now.
A few things to share with you. So far, I have NOT used any of your donations. I was able to pay cash for the van ($4,500). However, I WILL need to start pulling money from donations, as there are several changes I need to make to the van so it meets my needs.
1. The van needs automatic doors on the side. I cannot reach to close the doors of the van once I'm inside the van. This makes it impossible for me to travel alone. Since I'm the only one in the car sometimes, I need to be able to function independently, as I always have. This will probably run about $2,000.
2. The van needs a different restraint system. Right now it has a 4-point restraint system for the wheelchair. This type of restraint is NOT something I can operate myself, and would be dependent on someone to strap and unstrap my wheelchair into the restraints every time. This is just not feasible. I need a 1-point drive over restraint. One that I just drive the chair over and it automatically locks the chair in place to the floor of the van. The chair MUST be restrained during transport... otherwise I'm looking at a 400 lb missile if something happens and the van is in an accident. Just the momentum of an unrestrained wheelchair is sure to cause injury or death in an accident. I do not yet know the cost of this modification. I will be researching it this week.
3. I need a special seat put in the van on the driver's side, called a "transfer chair". It allows me to transfer from the wheelchair to the driver's seat...it swivels around so it can face the rear of the van for me to get into the chair, then swivels back to the front position so I can drive the van. I do not yet know the cost of this modification. I will be researching it this week.
4. Depending on the height of the new standing wheelchair (in the seated position, of course), I may need to put an after-market roof extender on the van to raise the height of the ceiling of the van so I can actually fit inside the van. I have searched, but need to make phone calls to price this modification. Everything online shows places that can make the modification, but prices are not posted.
In short: This fundraiser may not be over! I now know I do not need all $75,000, but getting to an even $10,000 will make a huge difference in my ability to get these modifications done in a timely manner, as well as having enough to make a down payment on the standing wheelchair (we spent that purchasing the van). SO... Keep spreading the word, keep telling everyone you know about my situation! We're close... another $2,300 will get me where I think I need to be. I will know more after I price the modifications needed. With everyone helping, we were able to reach $7,700 in THREE WEEKS. Surely with everyone's help we can add a third of that to the total amount raised!!!
Are you ready for a miracle? Because I had a miracle happen the past 48 hours...and the reality is still setting in. Pinch me, I'm not sure it's real!!!
I called my brother on Wednesday morning... for kicks and giggles while we talked, he got on a local (to him) website and checked availability of wheelchair accessible vehicles. I was skeptical...very skeptical. I eliminated most available vehicles right away, given that I need a full-size van (once the first row seats are removed there still needs to be enough room for my family, which means no minivans).
There was an ad that had been posted Tuesday night... a 1995 GMC van with lift, asking $4,500. My first question was "What's wrong with it?" lol I have been leery of a van that old because I don't want to inherit someone else's problems. My brother asked if he could call about the van, and I figured, "Why not?"
My brother called, expecting to reach a cell phone or a home phone. The number was to an auto shop. Turns out the owner of the van is a mechanic. He purchased the van from a senior couple about 4 years ago (who maintained the van well and only put about 98K miles on it in 14 years). He purchased the van because he has a son with Muscular Dystrophy and they needed a way to transport their son. Currently, their son is a growing, young teen, and the van no longer meets their needs and they need a different van. In order to put a down payment on the new van, he must sell the current van, and he felt $4500 was a fair price for an older van. He has put about $10,000 into the van, fixing it and keeping it maintained. New alternator, new muffler, new belts... much of the inner workings of the van are new. What is not new is still in good condition.
My brother took it for a test drive and it drives perfectly. Straight as an arrow. Sounds like it should. Behaves as it should. Not a thing wrong.
So... I wired the money from savings (we were planning on getting an inexpensive vehicle for my husband for commuting THIS WEEK) to my brother yesterday morning. The purchase happened last night, and I added the van to my insurance this morning. My brother will personally deliver it to me as soon as possible!
The van needs a few modifications for me... I cannot operate the doors myself to close them once I'm in the van. Fixing the doors to replace them with automatic doors with cost about $2,000, which I will withdraw from the generous donations that have been sent. Additionally, I need to purchase hand controls for the van, which will run about $500. For the original out of pocket cost of a commuter car for my husband ($5000) we have a van!!! My husband will drive my current car, and we don't have to buy another vehicle.
After fixing the doors on the van I'll have approximately $5700 remaining. Even if nothing else comes in, and if insurance denies the standing wheelchair, I can put the remaining balance down on the wheelchair and finance the rest, since I don't have to finance anything for the van! And, if by chance, insurance DOES approve the wheelchair, I will responsible for paying for 20% of the purchase price of the van, which I expect to be about $5,000 to $5,500 (which is what I will have left of the donations). Either way, I have a workable solution.
I'm still in shock of how quickly things have happened. I've been feeling very down about everything...very anxious about how I will be able to pull everything off, and every other avenue I've tried has been closed to me. Even with Voc Rehab, since the government shutdown. This has truly been an answer to prayers, and a miracle.
It's time for an update! I have good news and bad news. First, let's tackle the bad news: I'm not healing. We don't know exactly why, but my body has stopped healing, and the pressure sore is still very much there. I've had all kinds of lab work done, and no reasonable answer can be found. So... it's looking like I will have to have the sore surgically closed. I have some phone calls to make and paperwork to fill out, but hopefully I won't have to wait until June to have surgery. We're aiming for December. I'm almost out of FML time, but with a small miracle, I may be able to get the time covered. In the meantime, I have to return to work. I have returned part-time already, and return to full-time employment next week. At this point the goal is not to get me healed, but to prevent the pressure sore from getting worse until I can get into surgery. I need everyone's positive thoughts and prayers that this will happen.
Now there is some good news! In a way, my not healing is GOOD news (so counter intuitive, isn't it???). It builds a solid case of the medical necessity of the standing wheelchair. I may get my miracle after all of having the insurance company cover most of the cost of the standing wheelchair. I'm currently waiting on someone to come "evaluate" me and the "medical necessity" I have for the new standing wheelchair.
The other good news is everyone has opened their hearts, and in 2 1/2 weeks, I have raised $7,400. It's $7,400 more than I had 2 1/2 weeks ago!!! It's only about 10% of the total target, but it's 25% of my first goal of $25,000. If the insurance company pulls through, then I can put all $25,000 towards a used van, and finance the difference. If the insurance company denies covering the standing wheelchair, then the $25,000 will go directly to the standing wheelchair, and hopefully I can find a van for under $30,000 that we can finance.
In short, we need to get up to $25,000!!! In two weeks, I'm almost 25% there... if everyone pulls together, we can do this!!! Tell your friends, tell your neighbors, tell your co-workers, tell people on the street. Hand out flyers that you can print from this website. Get the word out in your communities, at your place of business, at your gym, at your grocery store, wherever you have contacts. Together we can do this!!! This website has reached over 1,000 people... if every one of those 1,000 people share this story with ONE person, and if those people are able to donate $20, then I'll have my first goal of $25,000. Make it a goal to talk to ONE person about my story. I need to stay employed. I need to keep my health insurance. I need to keep putting food on the table. I need to keep working with these precious children and their families, doing the work I feel I have been given to do in this life. Please help me reach my goal....I need your help to get there.
If you want to print up some flyers about my fundraising campaign for a standing wheelchair and wheelchair van, just scroll down to my ORIGINAL POST from Sept 22nd. At the very bottom of that post, there will be a small button that says "NEW! Print a Sign". Click on that and it will print the sign to whatever printed is connected to your device. :) Hang on bulletin boards in public places (libraries, grocery stores, universities, etc.) OR print and put in the windows of businesses (please be courteous and ask if it is OK first), OR print them and hand them out to random people OR place them on doors or on windshields. It's easy to get involved and SHARE this off-line and in your community!
Thanks for stopping by my page! My name is Elizabeth Allen, and I have Spina Bifida (a spinal cord defect), and use a wheelchair for mobility.Throughout my life, I've always been a hard worker, whether it was going to college, raising a family, or striving to remain active and independent. However, being a successful, disabled adult means there are few options available to me when medical issues arise.
Like many people who use wheelchairs full-time, I am prone to pressure sores. Unfortunately, recurrent sores have put me on bed rest while I heal. In order to stay pressure sore free, I need something called a standing wheelchair. This will allow me to frequently be upright during the day, alleviating the pressure on sensitive areas prone to skin breakdown. Since a standing wheelchair does not fold, I will no longer be able to drive my car, necessitating the purchase of a wheelchair accessible van. A wheelchair is often not covered by private insurance, and costs approximately $25,000, and a van can cost upwards of $50,000. For a lot of people, the cost involved makes the dream of owning a wheelchair van unattainable.
I am a public school teacher, and I work with very young children with special needs. My husband also works for the same public school district. While we love our jobs, we would not be considered "well-off". Being out of work, because of pressure sores caused by my current wheelchair, means my family won't be able to make ends meet. A standing wheelchair, and an accessible van, are things I need to remain independent, and successful.
Your donation will go directly to purchasing the standing wheelchair, and wheelchair accessible van. If by chance, other funding comes through for the wheelchair, the funds raised will go directly to a wheelchair accessible van.
I was searching the web to find help for my sister and found the newspaper article about you. Hopefully, I'll be able to donate more in the future for your very worthy cause.
Now, may I please ask you a question regarding my sister who has Spina Bifida? Do you know any doctors, GP, but especially a urologist who are familiar with SB and has experience doing so? We are in LV, same as you. Sincerely, Linda