I want to recognize Ann Arnold, UW Endocrine Surgery Registered Nurse, as being a light of hope during a dark period in my life.
"Start from the beginning?" Four simple words that may not mean much to you, but they meant the world to a patient that had been struggling for months with little hope left of finding a cure for their medical condition. These were some of the first words Ann said to me when I first talked to her over the phone and did not know where to start.
I had a thyroidectomy and partial parathyroidectomy in 2014. The thyroidectomy surgery I feel saved my life as well improved my quality of life since I was unaware that I had a condition known as hyperparathyroidism. Post-surgery pathology would reveal areas of cancer in my removed thyroid and I would join the ranks as a cancer survivor. All was great after surgery, treatment, remission, and subsequent years with a new lease on life given to me by God and the blessed hands of the surgeon.
Years one and two quickly ticked by and I found myself trying to do more with this gift. However, I found myself experiencing symptoms that I tried to dismiss including unexplained fatigue, declining memory, inability to concentrate, personality changes, and many more unexplained symptoms (reflux, urinary frequency, etc.). I had my suspicions as a patient, but blood tests showed no obvious explanations; all metabolic panels were within normal ranges and repeat visits with my internist and endocrinologist revealed I was in perfect health.
It was not until 2016 that a physical with my internist revealed everything was normal except having blood in my urine. After prompting from my internist, an x-ray, and visiting the local urology group in February, it was determined I had three kidney stones. As the alarms and sirens went off in my head of a possible reoccurrence of hyperparathyroidism, I brought this to the attention of my internist, urologist, and endocrinologist.
Over the next several months, I bounced back and forth between the care of these specialists. I grew even more frustrated with additional tests being run and not getting answers. Several tests were in high normal ranges, but due to not having high PTH and high calcium levels, the possibility of a re-occurrence of hyperparathyroidism was dismissed. As my physical health declined, my emotional state also deteriorated while searching for a cause of symptoms that no medical professional or test could provide. I was at a loss on what to do and the only remaining option I could come up with was to call back to my endocrine surgeon and to see if she could assist.
It had been several years since my interaction with the doctor and her office. I called her clinic and asked to please talk to her nurse. Her nurse was unavailable at that time, but I explained the urgency of my call and that I felt they were my last option. It was later that afternoon I received my first call from Ann Arnold, RN.
With months of inaction welled up in me and retreading the same story again and again with so many other medical providers, I emotionally said to her that I did not know where to start. She simply said, "Start from the beginning?" After 45 minutes of listening to my story and telling her my thoughts, Ann said, "I believe you and it sounds like you are experiencing another case of hyperparathyroidism."
This was the first glimmer of hope someone had shown me in months and Ann said, "We need to schedule you for an appointment to see the doctor as soon as possible." Ann scheduled me to see the doctor for my first return visit at the beginning of May. This would not be the last time that Ann would listen to me and be an advocate for my care.
When my wife and I arrived for my first appointment Ann entered the room and said she was the nurse that I had talked to on the phone. I gave her a hug and thanked her for believing me and scheduling the appointment. She reassured us that they were going to do everything they could to try to find the answer and get me better. As Ann asked me and my wife more about my story, I could see that she truly understood our frustrations, the lack of not knowing what was happening to me, and the lack of anyone willing to listen. We had spent months trying to get someone to listen. When I looked at Ann and said, "I am not the same man I used to be, and I am not the same husband or father. I am missing this time with my family." Ann's eyes teared up and she said they were there to help me get better. Ann would keep this promise over the next months by providing emotional support during phone calls, responding to emotional babbling on my chart messaging, battling insurance companies, and proactively scheduling me for appointments to give me future goals to work towards.
We met with the doctor and just like Ann, she felt there was the high likelihood of reoccurrence of hyperparathyroidism. Two imaging studies were ordered, a sestamibi and 64 slice CT scan, to try to localize the abnormal parathyroid. We felt great as everything was now moving. The studies would be done, surgery would be completed, and I would be cured! Unfortunately, this was not the case.
The sestamibi was approved by my health insurance, but it revealed no abnormal findings when completed. Ordered at the same time as the sestamibi, the multi-slice 64 CT scan was a priority scan but had been denied by my insurance company. It was a crucial scan that was needed to find the diseased parathyroid and without it, surgery was not a high possibility. As my wife and I attempted unsuccessfully to deal with the insurance company, Ann intervened and said she would work with my insurance company to appeal the denial. This was the start of countless calls to my insurance plan by Ann, re-faxing of clinical documents by her, trying to schedule peer-to-peer reviews with my insurance company and my doctor, and addressing calls from me and my wife to keep us informed. It was an arduous month and a half, but my insurance company finally approved!
Ann was crucial in getting this scan approved. My wife would later say, "It was Ann that got this approved. I couldn't get anything done calling our health plan. Without Ann, I don't know what we would have done!"
During this time frame, my symptoms and emotional state continued to worsen. I would send my chart messages to Ann letting her know of my condition. She could sense distress in my messages and was always reassuring, telling me to hang in there. Ann seemed to know that I needed a goal to shoot for with my condition and pre-set a parathyroidectomy surgery date for a couple weeks after my 64 slice CT scan. The scan was done in July and with it, also some dismaying results. Results indicated two possible enlarged parathyroids, but the scan could not determine which gland was overactive. The pre-set surgery date was canceled due to the doctor wanting to be sure of a clear target and ordered a unique cath lab procedure called venous sampling.
The unique procedure, performed by an interventional radiologist, would measure hormone levels of the remaining parathyroids in my neck as they released hormones into adjacent blood vessels. The procedure was scheduled for August and as before, I needed some light/hope at the end of the tunnel. I contacted the clinic and Ann was happy to schedule surgery for a tentative date of September.
In August the venous sampling procedure was performed, and it revealed something astonishing. My neck's vascular structure had been altered during the first thyroidectomy and parathyroidectomy surgery. An upper left parathyroid gland could no longer secrete hormone normally via thyroid veins but had instead revascularized and was secreting PTH hormone leading to my chest and heart. This made it virtually impossible to detect elevated parathyroid hormone levels via an arm blood draw due to PTH having a relatively short half-life. When measured during the procedure next to the diseased parathyroid, PTH levels came back greater than 2475 with the normal range being between 30 &110.
Elated after learning the information, I finally felt my suspicions were vindicated. With a diseased parathyroid now identified, I was ready to get my life back in September with a surgical parathyroidectomy.
September came and went. Surgery was quick and successful, removing a diseased parathyroid the size of a jelly belly. I was released the same day. On the morning after surgery, I can only describe a feeling of being reborn and it was as if a light bulb had been turned on. I looked up at the morning sky and cried. I immediately sent my chart message to Ann letting her know my symptoms were almost melting away and to thank her and my doctor for helping me and my family get to a successful end of the journey.
After getting my message, Ann called me that morning and as soon as I heard her voice, I started to cry. She started to cry too, and I told her what a blessing she and the doctor were. She humbly said that is what they do and was so happy to hear how well I was feeling. It was five days later that I followed up for a post-surgery visit. As we waited, my wife and I asked if Ann was available. When she came into the room, all three of us cried and hugged each other. As I hugged Ann, I said thank you for believing in me and helping my family. I could not help telling her that we felt God put her and the doctor in our paths to help us and that they were both such blessings. As we knew we were now at a conclusion to my care, Ann said she still remembered the first time she talked to me on the phone back in April. It was a happy ending to a long journey and we are forever grateful for Ann Arnold, RN. While it is now over a month post-surgery, I will never forget Ann and hope the retelling of my story in some small way honors her and her efforts in helping me and my family. Thank you, Ann!