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Courageous young woman with a cardiac pacemaker and a rare bone condition continues to fight her medical battles

Hi My name is Sarah. I am 24 years old. I have a cardiac pacemaker, osteogenesis imperfecta, GI slow/fast motility, endometriosis and I have had to undergo over 20 joint surgeries. The story of my medical journeys is quite lengthy, and I truly hope that you read all of this in order to understand everything that I have been going through. I have had to travel all over the country for these medical problems, I have been told multiple times, by other patients who I tell my story to and my doctors that I am so brave and tough to travel by myself for medical appointments and procedures. Each time I tell them that we can't even afford for me to go and it is bad enough when I have to undergo the joint surgeries which requires a family member to be with me, so we have to save it for that. I am always told I have a good outlook on things as I'm telling my medical story, I don't even realize it. I tell people well if I don't laugh, I will cry. I am hoping by telling my story, I can receive donations towards my medical expenses. I have a massive amount of medical expenses, but every little bit helps.
I have been battling a massive amount of medical problems for almost 13 years now.
I got severely sick from a routine immunization when I was 12 and it all went downhill from there.
This shot compromised my immune system, draining all the antibodies in my blood, so I had no antibodies in my blood to fight off infections. I received booster shots for this, but the treatment failed. I then developed chronic sinusitis and fungal sinusitis. I then started getting severe nosebleeds every day, that required cauterization with silver nitrate. Silver Nitrate is not good, as I was getting my nose cauterized every day and it can cause the septum to collapse. But the doctors had no choice. I then underwent a few electrocauteries but those soon failed. I then underwent a very risky procedure called an embolization. It is considered very risky as the doctor inserts a catheter through the groin and it can rupture things in the way of its path. I came out of the procedure okay and was told I had an abnormal amount of blood vessels but that hopefully the nosebleeds would stop. It only worked for so long, before I was sent all over the country in hopes that an ENT could figure out my every day nosebleeds, all the obvious stuff had been ruled out. Eventually the nosebleeds faded out with a few more treatments of nasal nebulizers etc.
When I was 14 I started with orthopaedic problems. I did not know that this was only the beginning of a never ending nightmare. I soon began with a fracture in my foot which I was treated with a cast for, no injury. I then fractured the other foot while I was in the cast and I was told I would either have to go in a wheelchair or wait for the cast to come off so I could get the new fracture casted. So I waited. At this point, I had not been diagnosed with the osteogenesis imperfecta as I didn't start fracturing at birth. Everything unraveled from there. I then had to undergo a knee surgery, I was having terrible pain with every step I took.
I shortly after that had to undergo 4 more knee surgeries.
I then was in for another medical battle in my life. I started with stomach pains which led to not being able to keep anything down whatsoever. It was 7 weeks of pain, multiple ER visits, multiple admissions and still noone could figure out why I was in terrible pain and couldn't keep anything down. I was given a medication that helped but noone knew why. For a while this helped until my pain returned 7 months later. This time I had ovarian cysts that had to be removed, when I had the surgery for this, they diagnosed me with endometriosis. I also had to have my appendix removed in the same day. I developed more ovarian cysts and those were removed and I was put on a treatment plan.
I also in between all of this underwent surgery on my feet for tarsal tunnel syndrome.
I then developed shoulder problems and had to undergo surgeries for this. I was told by the surgeon that he had never seen a shoulder in this bad of condition, considering he operates on athletes with injuries, and mine was not an injury.
As if this all wasn't enough already, a couple years later my stomach problems returned. Pain, and not being able to keep anything down again. I was finally sent to a surgeon who did a scan and realized I needed my gallbladder out.
I then shortly after that underwent 2 elbow surgeries. I was having pain and popping along with locking of the elbow, leading to multiple ER visits where I would actually have to be sedated in order for my elbow to straighten.
I through all of this was fracturing in my wrists, ankles and feet. I was sent to a major medical center out of state, where I was diagnosed with osteogenesis imperfecta. But my particular case was so rare that noone could help with a treatment plan. I had to travel to 6 other major medical centers throughout the U.S. to specialists who specialized in this. They did not know what to do either as they tried the typical treatment, but it did not help. I was only getting worse with casts on 2 body parts at the same time. This led to frustration as I was not getting better, and we incurred multiple flight expenses and hotel expenses as well as multiple medical copays.
Through most of these admissions to the hospital, I was having syncope episodes. I would actually pass out. The very first time was on a family vacation when I was 12, but we did not think anything of it, just thought I needed food which we gave me and I was fine after that. Later on, when I was admitted for my appendectomy etc I would pass out but the doctors thought it was just because my body was weak from being in the hospital.
These doctors were incorrect. On one of my medical trips out of state, I had flown by myself and passed out on an airplane. I did not know if I could get to the medical center for my consult as I was just so out of it, not feeling well and not understanding what just happened to me on the plane. The flight attendent had attended to me and I told her I was fine as far as leaving the airplane. I still did not know at this point why I was passing out.
I was sent to another major medical center for these syncope(passing out) episodes. This doctor decided to do a tilt table test. This test helps the doctor to determine if it is a blood pressure problem or a heart problem. In my age, I was 19 at the time, the most common cause is a blood pressure drop which is easily fixed with blood pressure medication. This was not the case. I was fine for the first 20 minutes of the test, and then in the standing up position, all of a sudden I did not feel well, and as it was a test, I had to tell the doctor in the room my exact symptoms as they were happening. I was scared and I told him exactly what was happening. Next thing you know, the table is in the laying down position and I have a doctor standing next to me as I'm "coming to" He told me to tell him exactly what happened so he could document it for the test so I told him, and I said and then you weren't there. He reassured me that he was there the whole time, I just was not. I actually had flatlined(no heart rate) They handed me the phone and told me my doctor that I had seen in the clinic wanted to speak to me. So he told me the plan was he did not feel it was safe for me to fly, I was supposed to fly home the next day not realizing what the results of this test would be. He said I needed to be admitted and the pacemaker team would come see me. I was very out of it and I agreed. I then was added on that evening to the OR schedule. The doctor thought maybe he should wait until Monday, as this was a Friday and I had traveled by myself not realizing this would be the end result. I had a family member on the way at this point but that family member would not be there until late friday night with the connections etc.
I told him I would undergo the surgery without anyone, as I did not feel well and I did not want to risk flatlining again over the weekend just laying in a hospital bed. I was nervous as I was the only patient in the holding area before surgery as it was nighttime, but I just remained strong and went in for the surgery. The pacemaker has helped and I have not had any syncope episodes. However, I now have more heart problems that I will talk about later on in this.
I started with hip pain and could barely walk. Every step I took, I could feel my leg not wanting to walk. I was told I could benefit from a hip arthroscopy but at this time there were very few of those surgeons in this field. I was sent to another major medical center out of state. I had a labral tear and he repaired it. I then got pain in my other hip, similar symptoms and was sent to another major medical center in yet another state and he operated. This surgery only lasted for so long before the pain and symptoms returned along with abnormal xrays. I was then sent to another major medical center where I was diagnosed with hip impingement, he fixed this but very carefully as I am at a very high fracture risk due to the osteogenesis imperfecta and this procedure involves shaving my bone. This surgery only lasted for so long as well. I was then sent all over the country to different hip surgeons each time, being told this is the one over and over again. This was not the case, I had such a rare hip disorder that even the experts in this field could not figure it out. After many flights and hotel stays, I was then told yet again that there was another one. At this point, we were really struggling financially and at first decided we can't. This surgeon probably can't help me either. But something told us to not give up, so I went. This surgeon could not help me, however he knew of one guy in the country who could and he was the only one. This actually was true and I ended up traveling to him where I underwent a hip reconstruction on my right hip. This was a year recovery but as my other hip was struggling, 6 months later he operated on my other hip. This was a year recovery as well. I then developed more knee problems and underwent three knee surgeries with his colleauge. We incurred many flight expenses and many hotel stays. I could not fly by myself for these surgeries. We also had to rent a car each time.
Today it has gotten to the point where I need to go back to this medical center for more surgeries, for my foot and arm. But we cannot afford it. I just underwent another hip surgery in december for a rare disorder, the previous hip surgery he did helped, this was for a different problem. The medical bills keep piling up. Thousands and thousands of copayments, deductibles, coinsurance etc. The last time we were fortunate enough to stay in a townhouse through a local church. We can't afford hotel stays, we never were able to but we had no choice. At this point we have to give in and say we can't do it anymore. This means I won't be able to get my foot or arm fixed and these are the only doctors that can help me.
After these hip and knee surgeries, I would get these episodes similar to my syncope episodes in the past. They were very scary episodes, as I did not know what was happening to me when I got an episode, I just would not feel well and then all of a sudden the room would feel like it was caving in and I would have to try to prevent myself from passing out as I was not only terrified as to what was happening to me but I was on crutches after these surgeries. These episodes were horrible, I couldn't even hop on the crutches from the hotel bed to the bathroom without feeling like I was going to pass out. I went to my cardiologist who is out of state and he did another tilt table test. I was terrified to undergo this tilt table test as I knew what had happened during the first tilt table test which led to me getting my pacemaker. This time they reassured me that if I had an episode involving my heart rate, my pacemaker should kick in. I was connected to machines to monitor me. I was fine for the first part of it and then all of a sudden I started panicking and said I don't feel good, I don't feel good, and they had to lay me down right away and then look at the monitors to see what happened. This time it was my blood pressure that dropped. It dropped drastically within a minute. My cardiologist then put me on a medication to help with that.
I haven't had any further syncope or blood pressure episodes, but this is something I get with no warning. I never know when or where it is going to happen.
I also was finally sent to a major medical center for my GI problems. I was diagnosed with GI slow/fast motility in 2008. He did multiple tests and was able to put me on medications to try to control this condition. I saw a bone doctor as well there and he was able to help me with my OI and I now have to inject a medication every day. I am happy to report that I haven't had as many fractures. I also am seeing a doctor for my joint problems. They are trying to figure out my overall medical condition causing all of this besides the OI. I had to undergo a diagnostic knee surgery just to try to pinpoint why my joints are full of fluid and an abnormal amount of tissue. As it was not planned until I saw doctor after doctor, I underwent this knee surgery by myself as we did not have the financial means to fly a family member in and I was already there. It was a challenge for me as I was on crutches afterwards and in excruciating pain after the surgery and I could not take pain meds as I had to be responsible for myself. I was in pain while flying home etc but I managed to just deal with the pain until my family picked me up at the airport where they had ice in the car for me and I took my meds. This was another long journey.
I also have problems where I keep developing severe infections. One in my colon and one in my esophagus. I have been treated for this over and over again and I am aleady on the second line of treatment as the first line stopped working. If this second line fails, I will have to under go IV infusions.
I have to undergo frequent endoscopies and most recently I underwent an endoscopy at one of the major medical centers that is finally able to help me and when I woke up, I felt like my heart was beating fast but thought it was just the meds but the nurse said I had become bradycardic during the procedure and my pacemaker luckily had kicked in so I could most likely feel the pacemaker kicking in. My cardiologist is in another state as well, a different major medical center. At that point I was fine, just could feel my pacemaker pacing. The next day I developed terrible chest pains and spoke with my cardiologist over the phone and he said I needed to get to a physician immediately, as I was at a major medical center, I was able to. I was given another medication for my heart, and I stayed out of the ER, as ER's can't help me since my case is so rare. I was supposed to fly home the next day but my doctors did not know if it was safe or not. They had no idea what would happen at 36,000 feet. I had a family member packing at home that night in case they needed to make a drive to come get me which takes 2 days. I packed too, not feeling well, but in case I kept with the plan and would fly home. This was not the case, the next morning, I tried to pretend I was okay but I was not. I could barely walk without being short of breath with the chest pain. I had to cancel my flight and my family member had to drive 2 days to come get me and then turn around and drive 2 days back home.
My medical battles continue. I also need to have another shoulder surgery, and possibly another knee surgery. I am currently undergoing treatment for my knee that normally someone in their 60's or older would receive.
I also get severe hemiplegic migraines. I was supposed to go for testing for this but my insurance doesn't cover this so I can't go for the testing. Even with migraine medication, the migraines get so bad, I am sometimes in bed for a couple days.
Currently, there are 3 major medical centers that I have to travel to. One is for my GI, bones, infections, and chronic inflammtion problem. The other one is for my joint surgeries inluding my foot and arm. The other medical center is my cardiologist for my heart. I was finally given hope, after these 3 medical centers were able to help me. I am now faced with not being able to continue to travel to these medical centers. Each time it is a hotel stay, a flight for me and for my joint surgery trips it is a flight for me and a family member and a rental car each time. After each surgery I have to face many physical therapy copays and I can only go for a few sessions before each time having to stop as we can't afford it.
I am constanly fighting my medical bills. I was recovering from one of my joint surgeries and I was not even 12 hours postop and I was getting a call about one of my previous joint surgeries asking for the balance to be paid. Another time I was only 4 hours postop and had someone walking in my hospital room asking for the full payment of the deductible and coinsurance. After explaining my financial hardship, she said well how much can you give me today? I told her, as I said I owe things all across the country for my medical problems, so honestly nothing. I also receive calls right before the surgery to ask which credit card I would like to use for whatever I will owe for the surgery, deductibles and coinsurance etc. I have to turn them down and fight with them, saying I already am on a payment plan for all my other surgical costs at this medical center and it's not just this medical center that I am on a payment plan for. It doesn't stop there, the bills come and when they don't hear they call.
I try to remain strong through all of this. I never know what is going to happen when I wake up. I'm at the orthopaedic mostly every day, as I keep getting pain in certain joints.
I am terrified since we can no longer afford these trips and my health will deteriorate. I have come so far and the medical problems keep unraveling. The bills keep piling up and soon things will go to collection, and there is nothing we can do, but I'm hoping after telling my story that there is some hope left for me.




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