I NEED HELP TO BREATHE! Needs portable O2

Hello, my name is Dorothy Matyas I'm disabled since the age of 5yrs old.  I'm 46 yrs old and I'm only 4'7" weighing only 55 lbs. I need your help to breathe.

UPDATE:  On January 6th I started to have pain in my left side thought I pulled a muscle or thought I had pleurisy. I went to the urgent care to get checked out they told me I needed to get to hospital ASAP.  The hospital did EKG, X-ray, chest CT found out that I had a pleural effusion and a cyst they took me to get a sonogram to see if they could drain some of the fluid out but it was too thick they said it was like jello I had to have surgery 2 days later to have a chest tube put in. I was in the hospital for over 2 weeks then about a week after that they put a different chest tube in so that I could get to come home to have nurses drain it.

I was born with Neurofibromatosis type 1 they didn't dignose me til the age of 4. Which caused Scoliosis I'll explain what the NF is at the end of my story and what it can cause.

When I was 5 years old I was outside playing and I got hurt and couldn't turn my neck so my mom took me to the hospital. They had done alot of tests like X-rays and such. This is where they found out that my spine was severely curved. I was sent to Pittsburghs Children's Hospital. They did their tests and told us that the best they could do is slap me in a Milwaukee brace and HOPE for the best. Well my mom wasn't having that she wanted the best of the best for me. So that's when I was taken to Cleveland Clinic and found the Dr. Gurd this man saved my life. My mom was scared about me having the surgery/surgeries, she told  Dr. Gurd she was leaving it up to me if I wanted the surgery. She thought no child is going to want to have surgery. This is when Dr. Gurd said to me Boo this is what he called me by my nick name. Boo I'm going to need to talk to you like an adult this is serious. He then sat me on his knee and explained to me if I didn't have this surgery and it will hurt but I will give you medicine to help with the pain. I asked but what if I get wet won't I squeek when I walk like the Tin Man? He chuckled and said he would put special oil in there so I could play in the snow and get wet and stuff. I said okay, I asked but what if I don't get the surgery what will happen?  He said, I would die and go live with God and the Angels. I asked him will I get to see my Mommy and Daddy still? He told me no not till they die and go live with God and the Angels. I looked at my mom and said, Mommy I want the surgery I'm not ready to die and live with God and the Angels yet. My mom looked at Dr.Gurd and said, you know you fight dirty. This was the beginning of all my surgeries. 

I have had alot of pain all my life. I also have fibromyalgia pain medication barely takes the edge off my pain. The pain was so unbearable at times. When I was a child and young adult the pain was so bad I had often thought I was being punished by God for something I had done. I was told God loved me and would never do something like that and wouldn't do anything to me that I couldn't handle.  

My health hasn't been that great its progressively gotten alot worse in the past few years. I started having the worse pain ever in my right side I was rushed up to the hospital they said oh its nothing its just a kidney infection and sent me home I was back in there a few hrs later the pain was more intense.  They did a MRI turned out I had a kidney infarction which is basically a blot clot in the kidney I was in the hospital for over a week for that on strong pain meds to manage the pain.

I had slipped and caught myself so I wouldn't hurt my back, I had thought I pulled a muscle in my neck. I had told my pain management Dr. I was sent to get a MRI & CT scan. Those turned out that I had an aneurysm on the leftside in the main artery in the back of my neck and I Also had a blockage on the right side of neck. It was so very painful all I did was cry out in pain. The Dr had me on lots of pain meds nothing helped, even going to the local hospital to get a shot of something for pain it work for 5 minutes and that was it. I was told by pain management I needed to get to Pittsburgh University Medical Center ASAP! Pittsburgh did an arteriogram which is an X-ray of the arteries and veins, used to detect blockage or narrowing of the vessels. This procedure involves inserting a thin, flexible tube into an artery in the leg and injecting a contrast dye. The doctors told my mom that I needed to be put on Coumadin because I was at a very high risk to have a stroke. My mom said you are NOT putting her on Coumadin that's hard enough to regulate in an average size person, their is no way to get a safe dosage for her being 55 lbs and being 4'7" tall. The doctor said, to her well then we can just put her on baby aspirin and hope for the best. I was so very scared to sneeze, blow my nose or anything because I was scared I was going to have a stoke and die.  My mom and I decided to call the BEST hospital that we knew of the Cleveland Clinic made an appointment and seen one of the doctors up there. He reassured me that I wasn't at a hight risk to have a stoke and come back in six months for another check up. My six months comes around and the aneurysm had healed it self made a new blood supply and the other blockage was gone. We were very happy and prasied the Lord the doctor said he had never seen anything like this before. I told him I had been praying alot and asked my grandparents and uncles and step-dad to watch over me.  The doctor said well it worked.  

Without me having reliable oxygen my oxygen levels drops and can cause me to pass out which has happened to me once at home. Thankfully my brother was here when it happened he had to call an ambulance I had fallen face first and hit my head and messed my my right hand. They checked me out sent me home but a few hrs later I ended back in the ER because I was throwing up and started to go into shock from the trauma from the fall. I was in the hospital for a few weeks.  This is why I need portable oxygen concentrator that runs off a battery and is rechargeable. 

I am asking for help acquiring enough money to purchase a portable oxygen tank called an EasyGo and a portable scooter to help me get around much easier when I'm out of the house. I had one thru medicare that weighed 18 pounds, which is too heavy for me to pick up to put in the car and pull. I would have to get help putting it in and out of the car. I’ve even had to have complete strangers help me with these. When there was something going on with the battery - it will not hold a charge - they would not replace it, and left me with a machine that only lasts ten minutes, if that. It was supposed to give me eight hours. Then they took that back and left me with these big metal tanks that lasts maybe 2 hrs if that depending on the liter it was set at. My lung doctor wants me to have a continuous flow of oxygen.  Those small little portable oxygen concentrator that weigh a few pounds just do puffs of air. That is a puff of air every time you take a breath I can't use that I still get short of breath using one like that I had tried it sadly it didn't work. 

My insurance will not cover anything but the large tanks. I cannot physically lift them into the car. I cannot lift anything over five pounds. The large tanks mean I have to find someone to help me lift them, and often leave me trapped in the house. I have severe scoliosis and was just diagnosed with Chronic Respiratory Failure. My lungs are no longer able to release all of the carbon dioxide in my body. It's harder for me to walk, and walking far distances now I can't do, unlike before. I'm also on a non-invasive ventilation (NIV) to remove the excess carbon dioxide. The doctor made it seem like my time has been severely shortened. My lung doctor said to me that when your body builds up excess carbon dioxide it's preparing itself to die. You will just build up too much carbon dioxide and slip into a coma and go to sleep and die. I'm so scared I am not ready to die. I have come this far and this isn't going to get me. I was diagnosed at age four and it caused a severe case of scoliosis. I have been permanently disabled since the age of five years old. I didn’t give up in what I wanted in life. I kept small jobs when I was younger and performed them to my best capability. I got my driver's license, too. I can no longer hold down a job due to the chronic pain, and respiratory problems and mobility  problems. I’ve had thirteen spinal surgeries, and three complete rod systems, which came directly after this diagnosis. My first surgery included these rod systems: the Moe Rod and Luque Rod system and the Harrington Rod. Most of these surgeries are not performed on children younger than the age of twelve or sixteen, but in my case, my scoliosis was so severe that I needed all three at the age of five or I would have died. My spine would have inevitably curved to the left in such a way that it would have eventually crushed my lungs and heart. Throughout childhood, I also had to have two spinal fusions and bone grafts and a complete rib resectioning. They broke all the ribs on the right side and put me in a body cast for some months, trying to remove the large hump on my back, and also to make it easier for me to breathe from my ribs sticking. But it came back because I was still growing. Still putting alot of pressure on my lungs and heart. This left me permanently disfigured. I am 4’7” tall and weigh 55 pounds. My doctor does not want me to be over seventy pounds because it will put too much pressure on my heart and lungs. I am on oxygen twenty-four hours a day. Every day I struggle to breathe. Just being diagnosed with Chronic Respiratory Failure, I pray that it hasn’t limited my time on earth and I want to be able to leave the house a few times before then. Even after those surgeries, my spine is still in the shape of an S. Despite all of this, I still think God made me “Special” for a reason. I want to thank everyone for taking the time for listening to my story. I am in desperate need of a portable oxygen tank and a scooter; my insurance will not help towards it and here I am making a GoFundMe. The price for one is out of my budget. I hate to ask for money, but this device would greatly improve the quality of my life. It would give me a little bit of freedom to go visit friends and get out and about more. I might even be able to play a couple of Rockband songs, on a good day. If you do donate, I want to personally thank you from the bottom of my heart because I do not want to be trapped in my house during the last years of my life. Thank you all again from the bottom of my heart ❤  God Bless

Neurofibromatosis type 1 (NF1) is a genetic condition that causes tumours to grow along your nerves. The tumours are usually non-cancerous (benign) but may cause a range of symptoms.  I have alot of these signs & symptoms. 

Signs and symptoms include:

Flat, light brown spots on the skin (cafe au lait spots). These harmless spots are common in many people. Having more than six cafe au lait spots suggests NF1. They are usually present at birth or appear during the first years of life. After childhood, new spots stop appearing.

Freckling in the armpits or groin area. Freckling usually appears by ages 3 to 5. Freckles are smaller than cafe au lait spots and tend to occur in clusters in skin folds.

Tiny bumps on the iris of the eye (Lisch nodules). These harmless nodules can't easily be seen and don't affect vision. ( I have some of these too)

Soft, pea-sized bumps on or under the skin (neurofibromas). These benign tumors usually develop in or under the skin, but can also grow inside the body. Sometimes, a growth will involve many nerves (plexiform neurofibroma). Plexiform neurofibromas, when located on the face, can cause disfigurement. Neurofibromas may increase in number with age.( I do have quite a few of these I have had some removed due to pain.) 

Bone deformities. Abnormal bone development and a deficiency in bone mineral density can cause bone deformities such as a curved spine (scoliosis) or a bowed lower leg. ( the NF is what caused my scoliosis and bowed legs)

Tumor on the optic nerve (optic glioma). These tumors usually appear by age 3, rarely in late childhood and adolescence, and almost never in adults. ( but I have a tumor on my optic nerve they have been watching).

Learning disabilities. Impaired thinking skills are common in children who have NF1 but are usually mild. Often there is a specific learning disability, such as a problem with reading or mathematics. Attention-deficit/hyperactivity disorder (ADHD) and speech delay also are common. ( I have this which it was very hard for me in school and when I tried to go to college it made me feel as if the teachers felt that I was just lazy and didn't want to try.)

Short stature. Children who have NF1 often are below average in height. ( I'm only 4'7")

Causes:

Neurofibromatosis is caused by genetic defects (mutations) that either are passed on by a parent or occur spontaneously at conception. The specific genes involved depend on the type of neurofibromatosis:

The NF1 gene is located on chromosome 17. This gene produces a protein called neurofibromin that helps regulate cell growth. The mutated gene causes a loss of neurofibromin, which allows cells to grow uncontrolled.