Nicki's recovery &hope for a future

Before having the disease.

During Cushing's disease...I won the Daisy award at work. :)
During the disease.

Another picture as above during the disease.
Beginning to lose weight after brain surgery.
After all surgeries...back working as nurse...light duty. 

I should first state that I am a nurse. I have been a nurse for eight years, but prior to that I was a certified nursing assistant and a licensed practical nurse before registered nurse. Pictures shown are from what I looked liked before the disease with my uncle, then when I had the disease, and what I look like now still recovering from the weight gain.

So to begin in May 2015 I got diagnosed with Cushing’s disease I was 28 years old. Cushing disease is a very rare disease affecting only 1 in a million people. This rareness makes it is a very hard disease to diagnose.  A lot of the symptoms in the beginning mimic many other diseases and doctors often misdiagnose it for other things. Cushing disease is caused by a benign pituitary tumor. It occurs when a benign (non cancerous) tumor on the pituitary gland, just below the brain produces excessive amounts of a hormone called adrenocorticotropic hormone (ACTH). ACTH travels through your blood to your adrenal glands and signals them to produce an excessive amount of an important steroid hormone called cortisol. When a person’s level of cortisol is too high for too long it can lead to many different symptoms. At a normal level cortisol supports many bodily processes, such as metabolism and your ability to fight infection. A person can get Cushing's disease in different forms which include exogerous or endogenous. Taking medications containing glucocorticoids causes exogenous Cushing’s. Cushing endogenous is overproduction of cortisol (a glucocorticoid) caused by either a pituitary tumor in 70% of cases, or an adrenal tumor 15% of cases, or ectopic tumors 15% as well. Cushing’s disease affects the whole body, all systems, but mainly endocrine. Symptoms of this disease are vision changes, sleep disturbances, psychological issues, easy bruising, thin skin, 1-2 inch purple stretch marks, red face, moon face, acne, immune system is compromised so it’s easy to get infections, obesity, buffalo hump (hump on back of neck), severe weight gain, fatigue, hair loss, osteoporosis, irregular periods.

When I was diagnosed with this disease my first endocrinologist believed I had the tumor 2-3 years prior to being diagnosed. A dermatologist was the doctor to diagnose my disease. Since being diagnosed and waiting for brain surgery I had broken 23 bones, 13 ribs, my right foot has been broken 3 times, left foot 2 times, and I now have a left metal femur, left metal hip and two metal shoulders. I simply broke all my bones by just living, breathing, walking etc. that's how brittle they had become. I spent my birthday in the hospital when I broke my left hip and femur. I also put on 110 pounds just from the disease itself. I also acquired ligament tears in the back of both knees, and in my ankles but surgeons felt surgery would just make me more of a complicated mess. I was out of work for a year and a half. During this time I also had to undergo neck surgeries for pleomorphic adenomas that turn into malignant tumors if they are not removed; in which they have kept coming back since I was 5 years old, so that was more issues on top of everything else because that was my 5th neck surgery at that point.

Once I had brain surgery my body no longer makes cortisol yet. My doctors don't know if it will return or not, meaning I would have to be on lifelong steroid therapy.  Since I no longer make my own cortisol, I suffer with Addison’s disease, which is the complete opposite direction of Cushing's disease. Addison’s disease is a chronic adrenal insufficiency and hypocortisolism which the adrenal glands do not produce enough steroid hormones. Since my body does not make cortisol an adrenal crisis can be triggered by stress, such as from an injury or simple infection.

So ever since brain surgery in Jan 2016 I have been on nothing, but high doses of steroids, and IV steroids for each surgery I needed after brain surgery. Each time my endocrinologist has tried to wean me off of the oral steroids the outcomes have never been good. The first few times from trying to be weaned off completely to see if my body was producing cortisol naturally left me going into adrenal insufficiency syndrome, and ended up in the hospital for IV steroids and IV fluids to correct the five days I was off steroids. My endocrinologist even did certain tests to see what oral dose of steriods I would need to take at a certain times of day to be somewhat like a normal functioning person, but the outcome of that was not good either because I continued to have Addison's crisis.

In December of 2016 and a few months before I have been in and out of the ER for IV steroids and IV fluids because of the Addison's crisis and to have my oral medication not being satisfactory to correct it. I have found an endocrinologist who helps patients like me, and gives them cortisol pumps like and insulin pump, but it runs steroids through the pump to try and mimic the levels of a normal person’s body making cortisol, which there are very few doctors who do this type of procedure. They mostly just have the patient stay on oral steroids until their body begins to function again like a normal human being. He believes I can benefit, and be a great candidate for a pump. The problem is that I am getting sicker, and a pump cost $6000 since this doctor is out of my insurance network. I am trying to be seen at an HMO level but am having many problems with this with insurance. If I was seen at HMO level the pump would not be as expensive, but cortisol pumps technically do not exist.

As I have acquired severe osteoporosis my bones are still brittle and breaking, so therefore, I have quite a few orthopedic doctors for each new body part I break or gets affected from this disease. I technically have 14 doctors that over see my care right now. Through Cushing's disease I have managed to work through it since I was diagnosed…hell I even worked for a month and a half with a broken pelvis and three broken right ribs. It wasn’t until I broke my left femur and left hip just walking that put me out of work for a months before i could have brain surgery. Once my hip and femur were healed the neurosurgeon did brain surgery leaving me out for several months.

I came back after brain surgery then found out I needed two new shoulders from the osteonecrosis the disease had caused, so I had another surgery on my left shoulder which left me out for the rest to make a total of a year and a half out of work. I had to have my job make an ADA accommodation for me to work after I had my right shoulder operated on, and continued to work light duty until approved back full time as a nurse.

I had no other options or choices. This disease destroyed the active person I use to be before this and also caused me to move back home once I started breaking bones. If I was able to heal and recover the healthy way, and let my body rest I would have done that, but this wasn’t an option for me as my credit cards got charged back up to help support the financial burden this disease has put me through, yet I still am dealing with because it has not yet become over for me. I will later down the road need to have more surgeries to replace my both shoulders because soon the metal will wear and tear on my joint, and socket causing sever pain leaving me towards having to receive total shoulder replacements. I will be on lifelong medications to help my brittle bones, which I am limited with the physical activity I can endure to prevent further breaks, and the loss of the metal around my hip. Many other medications just to try and function like a normal human being again. I would not wish this disease on anyone else, yet I ask for any support in any way possible because I literally am working to survive this disease, and afford whatever extra medical attention or doctors are needed to help me fight my battle. I am out of work again due to my right foot being re-broken; which makes that 4 times in the same spot and other places too, so now it’s in a cast. It also makes it 3 for my left foot now since JAN 2017. They have been trying cam boots to heal all the foot fractures, simply because I did not have the appropriate amount of time to take off of work yet. One small thing I do wrong, and a bone breaks...particularly my feet have been the main problem now. The doctor feels surgery would just complicate my issues more.

However, I was casted on the right foot like I said above. They took it off it was still broken. Not only did my left foot keep hurting again it got a cast as well. So I'm doubled casted, let me tell you sucks the worst, but I go back in month. If they are not healed it's bilateral foot surgery. I'm also in seeing my brain surgeon to see what he can do for the damage the Cushing's disease did to my spine.

I appreciate any help I can get to get back on my feet once I do eventually start to hit the down side of all these issues, and see light at the end of this tunnel of hell I have endured thus far.

This money is to continue to see my 14 doctors, paying for continued surgeries I will need in the future to replace both my shoulders again. It will help with the neck surgeries I could possible need again for the tumors that keep coming back. The money will help with all of my medications I need to function every day as a somewhat "normal" person, and medication injections to make my bones strong again that cost $250 a month. It will help pay for the pump I mentioned before, since insurance will not cover it, along with the IV SOLU-CORTEF; which is $375 for the vials. It will also help pay for pump supplies which are $145 a month or $600 dollars for three months. It will help me to pay my medical debt that I've accumulated from being out of work for so long. It also will help me pay for transfusions or other injections I have to get for low blood and iron counts as well because my body doesn't absorb vitamins or oral medications well to be sufficient enough to keep my levels normal.

However, I want to thank those who've supported me from the beginning, especially my mother...from all the surgeries, doctor appointments, perscription drop-offs, helping take care of me with everyday task like dressing, showering etc. when I broke 23 bones along with hip, and bilateral shoulder surgeries. She also helped take care of my dogs through all this as well. A special thanks to my family for being by my side, and supporting me the best way they knew how, and my little brother for being a sole part in my care in the aftermath. I also want to thank my aunt Kathy for her help when I needed a rides to appointments or helping me clean, and organize my things when I wasn't able too! I want to thank Lori most of all, a nurse on my floor who was like a second mother when my mother couldn't be there for me she for continued to support, take care of, and take me to appointments as well. I want to also thank my co-workers who've supported me wanting me to return to work and always checking in too. 



Nicki