Brooke's Medical Treatment
If someone, back in June 2015, had told me that all in one day my life would come to a halt. I never would have believed them. . Prior to that date, I was working two jobs and working on a 3rd college degree. I had an active social life, was able to participate in multiple church activities during the week, and was looking forward to helping with children's church. I was happy and mostly healthy other than having Type 1 Diabetes, Hashimoto's,Rheumatoid Arthritis, and occasional flare ups of Asthma.
However, on June 26, 2015, I woke up so completely drained and fatigued that I could barely get out of bed. My legs felt like dead weight and I found it nearly impossible to put my hands above my head to even shower. Just walking across the room, left me completely out of breath and with crushing chest pain. It felt like someone had drained the life out of me and I had no idea why! I thought, that perhaps, I just had the flu. But my symptoms did not go away and I honestly felt like I was dying. All I could manage to do was lie on the couch most days. Just simple things like washing the dishes, doing the laundry, and caring for my home became nearly impossible tasks. I would literally have to wash the dishes and then lie down. There were many days where ALL I could manage to do was take a shower.
Anyway, I was very confused as to how I could be so healthy and well one day, and then the next day be so incapacitated. I decided to go to the emergency room because I was having some flank pain which I thought might be a kidney infection. While I was there, a CT scan revealed a 2.1 cm tumor on my left adrenal gland. The emergency room FAILED to tell me about the tumor. I would only learn of its existence, later, after requesting my medical records and reading them. However, while I was in the ER, what they DID notice was that my heart-rate while I was sitting was beating at a pace of 160 to 180 beats per minute. Everytime I would cough, move my arms, or even take a deep breath my heart rate would sky rocket to over 200. They did an EKG at the time and I had some minor abnormalities. They said I was severely dehydrated and they pumped me full of 3 liters of fluids. Interestingly, after the 3 liters of fluids, my heart rate and blood pressure returned to normal. They were very perplexed because normally IV fluids increase blood pressure, not decrease it. After some observation, they diagnosed me with sinus tachycardia (high heart rate of unknown origin) and sent me home to follow up with a Cardiologist.
The cardiology department, to whom I was referred, was not all that concerned about my case. After all, I was a 30 something female who was pretty healthy. The soonest that they could get me in to see an Electrophysicist of the Heart was the middle of September 2015. After that ER visit, and having several liters of IV fluids dumped in my body, I was feeling pretty good. I was able to work from home a little bit and do some of the normal things I could do before. However, over the course of two weeks, I began to feel worse and worse. So, I returned to the ER because I had crushing chest pain. During triage at the ER, they took my standing heart rate and it was 260!!!!!! They totally flipped out and had me a gurney so fast that I didn't know what hit me! I thought I was having a heart attack. They checked my potassium and it was dangerously low. I mentioned that I was peeing like crazy, guzzling anything and every that I could possibly drink, and even wetting the bed. They blamed those symptoms on Type 1 Autoimmune Diabetes, even though my diabetes was extremely well managed. It just didn't "fit". Something was really, really wrong but I just didn't know what. Again, I was severely dehydrated and they pumped me up with 4 liters of IV fluids again. During the shift change, my new attending doctor came in to see me. She said, "Brooke, I've been monitoring your heart rate from the nurses station, and noticed that as we have filled you will IV fluids, you heart rate and blood pressure have returned to close to normal. Have you ever heard of Autonomic Failure, also called POTS. Postural Orthostatic Tachycardia Syndrome?" She said, " I think you have it". I had never heard of Autonomic Failure (also called Dysautonomia) but I kept that in the back of my mind. Yet again, after that bolus of IV fluids, I did fairly well for a week or two. Then, slowly the severe fatigue, sleeping all the time, and extremely high heart rates returned. I read a little bit about Autonomic Failure during that time and the symptoms seemed to fit but when I talked to my regular doctor she had never heard of it so I just dismissed what I had been told. My GP (regular doctor) was concerned by the fact that I was drinking so much and peeing at least 4 times an hour. So she sent me a referral to an Endocrinologist.
Prior to seeing the Endocrinologist, I had happened to have gathered and read my medical records from the ER visit back in June 2015. The CT scan mentioned a 2.1 cm tumor on the left adrenal gland that's nature was "uncertain". The radiologist had mentioned that the tumor be "worked up". I had NO idea what that would mean. I finally go to see the Endocrinologist during the middle of August 2015. He was a very nice man but was googling, right in front of me, about how to "work up" an adrenal tumor. I wasn't at all convinced he knew what he was doing. He ordered another CT scan of my adrenal glands. The CT scan report said that the tumor was "benign". The Endocrinologist ran a few obligatory tests and said I was fine. The tumor was NOT cancer and to just not worry about it because Adrenal Cortical Carcinoma is extremely rare, after all only 1 in a million cases of, Adrenal Cortical Carcinoma, are diagnosed annually. However, he was concerned by how much I was drinking and peeing all the time. So, he ordered something called a Water Deprivation Test to be done on September 5, 2015.
Over the course of 90 days, I had too many IV's and blood draws to count and it was looking like my health was not going to be improving anytime soon. For every single IV or blood draw they were poking me between 8 and 12 times, using an ultrasound machine, and STILL not getting what they needed from my veins. Unbeknownst to me, at the time, this is a common occurrence in people with Dysautonomia, due to low blood volume. Anyway, it was decided that I needed to have some type of permanent IV access point inserted into my body. I choose to have a Bard PowerPort Vue implanted and had that surgery on September 3, 2015.
On September 5, 2015, I went into the hospital to have my 16 hour water deprivation test done. I was not allowed to drink ANY water at all during this time. They collected my urine, exactly, every 60 minutes, as well as my blood every 60 minutes. It was during this testing process that I had my first ever port access. Thankfully, God does NOT allow us to see the future, because IF I had known what I was going to endure that day or in the months ahead, I would not have been able to handle it. Anyway, my very first port access was something I will never forget. They had to stick a 1 inch needle into my port 8 times before getting it in the right place. One of the nurses completely missed and inserted the needle straight into my incision. Anyway, that day was brutal and one I wish I could forget. The results of the test revealed that I had a very rare condition of the Pituitary gland (an endocrine gland) located in the brain. The pituitary (in the brain), produces a hormone called Vasopressin. And Vasopressin tells the kidneys how much fluid to hold in the body and how much the kidneys should urinate out. So basically, without Vasopressin, my kidneys cannot concentrate my urine. This results in a rare condition called Central Diabetes Insipidus. Most people lose about 1 liter or less of water per day in the form of urine. I lose between 9 and 12 liters, even with medication!!! Imagine SIX two liters of, say, Mountain Dew! That is what I lose nearly everyday. Needless to say, this is an extremely dangerous condition, because I can become severely dehydrated very, very quickly.
Around the middle of September 2015, I was FINALLY able to see a cardiologist! The cardiologist did an EKG as well as took my heart rate and blood pressure while lying down, sitting up, and standing. She noted that my heart rate was extremely fast. A normal heart rate is somewhere between, 60 to 80 beats per minute, however my standing heart rate was in the 150's. Most long distance marathon runners never even reach a heart rate that high while running. So, basically, when I sit up or stand up my heart rate rises higher than that of a marathon runner. When this happens, I am prone to passing out. Also when my heart rate gets that high, I can develop abnormal arrhythmias. My cardiologist didn't think I had anything to worry about after all I was young and up until that recent point had been relatively healthy. However, she did want to get just one more test from me just to be safe. So, she ordered an ECHO (or ultrasound) of my heart to make sure I didn't have any blockages or heart failure. Before I left, she was she was 100% sure that nothing else was going on with my heart other than having sinus tachycardia. Oh how WRONG she was. I had that test done at 2:00 p.m. on a Friday night and at 6:03 p.m. that same night I got a phone call that I will NEVER forget. When a doctor calls you, at home, on a Friday evening, your stomach just sinks. She was calling to tell me that I was in heart failure. That it was too soon to know if it was acute or chronic in nature. And that she had made me an appointment, for FIRST thing Monday morning, with the leading heart failure expert, at that particular center. I don't remember much else of what she said, other than it was very, very serious. I could not believe my ears. I went first thing, Monday morning, to meet with Dr. M. At that point ,I didn't know much about cardiomyopathy (also called heart failure). However, the soberness of her face was as clear as glass. During that appointment, I happened to remember what one of my ER doctor's said back in that it was very serious. It was during that visit, that I happened to recall, what an ER doctor had mentioned to me about a month prior. I asked her if she thought I had Autonomic Failure. And her response was, "We don't believe that's is a THING". At that point, I was extremely confused because I had looked into Autonomic Failure when it was first mentioned to me in the ER. And all the major resources about it were from places like John Hopkins , Vanderbilt University, and Mayo Clinic. But who was I to question her? After all she was the director of a local heart failure center. She put me on some medications, and over the course of the next year, my heart function continued to decline.
In November 2015, my Endocrinologist recommended that I get an MRI of my brain with attention to the pituitary gland to TRY to determine the cause of my Diabetes Insipidus. The pituitary gland is only about the size of a peanut and it is located near the base of the brain. Normal brain imaging will not show the pituitary gland. And because the pituitary is so small, it takes a really trained radiologist to be able to evaluate it. I have had several MRI's of this region of my brain. Anything related to the anatomy of the brain is quite complicated, however, the radiology report revealed that I have carotid arteries (I know....confusing....I thought they were only in your neck!) that are compressing (squishing) my pituitary gland. We don't have anything definitive but assume this is causing my Central Diabetes Insipidus. During that scan of my brain, they also noticed another problem. I had swollen lymph nodes and 3 or 4 "lesions" within my parotid glands.
From December 2015 to Feburary 2016, I had multiple biopsies and images done on my parotid glands. (These are the salivary glands located just in front of the ear. To this day, I still do not have a conclusive answers as to what they are. Although they do show up as "borderline" or possibly pre-cancerous on PET/CT scan. We continue to monitor these regularly.
And then from, February 2016 until June 2016, I researched all I could about all of the conditions I had been diagnosed with including and especially the adrenal gland tumor. My general doctor was adamant that we continue to monitor the tumor, which we did. In June 2016, all my nutritional levels took a profound hit, my overall health continued to decline, and I was having frequent episodes of passing out. At that point, I was put on daily IV fluids and multiple IV medications. This protocol required weekly visits from a registered homecare nurse. The same nurse has been coming to my home once or twice a week, every week since that time, and this continues today.
In July 2016, I decided that I had had enough of local Endocrinologists and radiologists. I had a gut feeling that my adrenal tumor was something more, even though it was just 2.1 cm and had not grown, according to imaging. Something just didn't "feel" right. Adrenal cancer is extremely rare and there are only a few medical centers in the entire U.S who are equipped with to diagnose and manage it. So, I made an effort to rally financial support so I could travel to the University of Michigan to see some of the best researchers and doctors in the nation. At that appointment, I was told by the best of the best that I should not worry. They said they were 99% sure that I did not have adrenal cancer and they shooed me out the door. Relieved, I returned home to work on my other medical problems.
In October 2016, I finally found a specialist who understood both the heart and Autonomic Failure. By the time I got to that doctor, my heart function had taken a serious hit. He had a theory that the fast heart rate caused by my Dysautonomia was causing me to have tachycardia induced heart failure. His diagnosis was ON POINT. When we started treating my Autonomic Failure, then my cardiomyopathy became more stable.
From October 2016 to October 2017 I continued to do all I could to manage all my complex medical conditions. I was diagnosed with Gastroparesis because of digestion issues related to Autonomic Failure and began using an NG tube to help improve my nutritional levels.
During the month of October 2017, I began to have a STRONG gut feeling that I really needed to have another scan done of my adrenal glands. My regular doctor ordered that test, in November 2017, and it showed that my adrenal tumor had grown from 2.1 cm to 2.7 cm. That wasn't a lot of growth, but enough to be concerned about. In addition, a new lesion in my kidney, also on the left side, had emerged. Kidney tumors and Adrenal tumors cannot and should not EVER be biopsied. With news that my adrenal tumor had grown my doctor fought tooth and nail with my insurance so I could have PET/CT scan.
In December 2017, I had a PET/CT scan of my adrenal glands and my 2.7 cm tumor lit up like a Christmas tree. I met with a local Endocrine surgeon in January 2018. She said she didn't think it was cancer and that there is no research out there to support that PET/CT scans can determine if adrenal tumors are cancerous or not. By this time, my regular doctor and I were adamant that this thing come out. I tried my best to get the surgeon to follow the University of Michigan protocol for adrenal tumors which means removing ALL tumors via open surgery and removing all surrounding lymph nodes as well. She would agree to the surgery but refused to do it open because the tumor was "too small". I agree with the University of Michigan protocol that ALL adrenal tumors regardless of size should be removed via OPEN surgery and NOT via laproscopy. But good luck finding a surgeon in Indiana who agrees. It is a hard place to be in. Remove the tumor via laproscopy....or wait and let it spread and grow as you TRY to find a surgeon who will take it out open. I don't wish that decision on anyone.
On February 6, 2018, I underwent surgery to remove the adrenal tumor. My tumor was bounced around to 3 or 4 place in Indiana before finally being sent where I had originally requested, the University of Michigan. The pathology report came back on February 27, 2018. A full THREE WEEKS later. The clock was ticking. Unfortunately, my GUT was spot on, and I was diagnosed with a rare form of cancer called Adrenal Cortical Carcinoma. (Also called ACC). Adrenal cancers have 4 stages. The best is Stage 1 and the worst is Stage 4. I am stage 3. These cancers are also further labeled as low grade (less aggressive) and high grade (aggressive). My tumor is high grade (aggressive). So I have Stage 3, High Grade Adrenal Cortical Carcinoma.
As I mentioned previously, because this cancer is so rare, there are only a couple major institutions available in the US who know how to adequately deal with it. And sadly, because my insurance will not pay for anything out of state, I again had to rally enough monetary donations to travel to the University of Michigan, so I could get a treatment planned lined out. Then that same treatment plan could be implemented in Indiana. Somehow, by God's grace, I was able to get enough financial donations so I could travel to the University of Michigan. While there I met with Dr. H and he discussed my case with the tumor board up there. They all agreed that because my surgery was handled so poorly, because my cancer escaped from the adrenal gland in multiple places, and because I was Stage 3, High grade that I needed aggressive treatment. So, I returned back to Indiana to get that treatment plan rolling here.
At the end of April 2018 , I met with a local radiation oncologist who determined I would need about 30 cycles of radiation. I also started the only FDA approved drug for Adrenal Cancer, called Mitotane. Mitotane, is an illegal pesticide, made from DDT, that helps DELAY recurrence in about 30% of people with this type of cancer. Not good statistics in my opinion. It is drug that few people can tolerate well and has devastating side effects. Most people have to be on it, everyday, from 3 years up to an entire lifetime. I took the drug for 2 weeks and began daily treatments of radiation as well. Sadly, I was not able to continue either treatment. 
Unfortunately, during May 2018, likely due to Adrenal Insufficiency (which went UNDIAGNOSED from March 2018-August 2018), I developed a Urinary tract infection which spread to my blood. I had SEPSIS. A blood infection. Only about 50% of people who develop Sepsis live. I spent 2 nights in ICU, developed Diabetic Ketoacidosis from high doses of steroids, had surgery to remove my old port, surgery to implant a new port, a midline put in, and more antibiotics than I can count. Because I was so ill from sepsis, and my multiple other medical conditions, I had to discontinue my radiation treatments. It was a horrible experience and one that, even today has left me with a lot of anxiety, but somehow, I managed to beat the odds. 
. . Sepsis Survivor
Since May of 2018, I have tried my hardest to return to my old baseline of health. It has not happened.
It is now September, and I was just recently diagnosed with Adrenal Insufficiency. I should have been tested for this back in February when they removed my adrenal gland.
For quite a while, I have been unable to do any type of work. My full time job is taking care of my health, getting to doctor's visits, ordering medical supplies, and fighting with insurance. I spend 1 month out of the year in Michigan for related adrenal cancer appts and remain on scans every 3 months.
July 2019 - admitted to the hospital after losing 60 lbs in 6 weeks. I would later find out inOctober 2019 that multiple medical doctors missed that I have Grave's disease. The disease is not controlled and I am looking at either surgery or radiation to kill my thyroid.
Oct 2019 - Had surgery to remove my Powerport and implant a more permanent line with two lumens called a Hickman.
December 2019 - Return Visits to U of M for SCANS and adrenal cancer follow up. I also was thrown on to Medicare and because of slow paperwork I have been without any drug coverage since November. Thankfully I had some extra medications and supplies but I have had to stop many medications in order to be able to get my most critical medications. My self pay for all medications per month are over $25,000 and no one can do that. I hope to have drug coverage on Feb 1, 2020 but it will take months to get new prior authorizations for all I require to live.
April 2020- Bard Powerline Replacement
August 2020- Localized Infection to my Central Line and Central Line Replacement
September 2020 - return visits to University of Michigan for Adrenal Cancer Scans and Appts.
I don't know what my future holds but I do know that I have several monetary needs. Please, if you can help in anyway, will you consider giving? I have daily financial needs to just live, as well as upcoming financial needs for my trip to the University of Michigan for Adrenal Cancer every 3 months.
My expenses include:
Medications
Medical supplies
Travel Expenses to Michigan
Day to day living expenses
Monthly Rent
Medication and Supply Co-Pays
Please, please, please....will you consider giving! Anything helps! Thank you!!!
Thank you so much!!!
My Story Video
Love,
Brooke