It felt like an elephant was sitting on my chest. I was taking shallow breaths as the pain in my upper stomach was unbearable. A light touch of my arm rubbing across my stomach made me want to jump through the ceiling from excruciating pain. I was lying on a hospital gurney in the emergency room of Sutter Auburn Faith Hospital staring straight ahead waiting for the ER doctor to return with my blood work results. It was one week ago today when the ER doctor stood before me and confidently said, “You have pancreatitis.” My jaw dropped and I said, “No, no!” The doctor said, “The admitting doctor will visit you shortly and you will be transferred to a room upstairs.” I lay there in shock. Sheer disbelief. I began to softly sob as tears streamed down my cheeks and memories from the past consumed my every thought.
My mind drifted back to 12th Grade when I spent several months at Hershey Medical Center for pancreatitis. Then, when I was 19 at Johns Hopkins Hospital, where I was fed through a picc line and unable to eat or drink anything for six months due to pancreatitis. I instantly thought I can’t have this again. What about my transplanted kidney?
That first day at Sutter was very challenging. After I was transferred to my room, it took six hours until they could get an IV in me. Four people attempted and two of them were ICU nurses. The ICU nurse said if the third try did not work, they would have to put a port in. By now I was dehydrated and mentally and physically drained. I could not bear the thought of a port for fear of infection and the risks to my kidney. After at least 11 tries, they were able to get a pediatric size IV in a vein in my right hand.
It has been a challenging week. They are still doing tests and trying to figure out the answer to the complicated question of, ‘Why?’ The only way to help pancreatitis is to let it be. Meaning no food or liquids by mouth so that it can rest. It has been a week since I have eaten anything. I have lived on sugar water delivered through my IV, with sips of water for my transplant meds. After day-five of no food, they talked about putting a feeding tube in to provide me with some nutrition. This thought concerned me greatly. Once you introduce something new like this, there are always risks of infections and fungal issues. I kept worrying about my transplant.
Lipase is a number to help determine the health of the pancreas. With each passing day, my lipase numbers kept increasing, however my pain was slowly subsiding. When a gastrointestinal doctor was introduced to my team of doctors, he said he was more concerned with how I was doing clinically than my lipase numbers. Since my pain was lessening, he said he wanted to have me try clear fluids to see if my pancreas would act up. So far I have been doing well with clear fluids and am over-the-top happy that I have been able to avoid a feeding tube so far.
I have been practicing what I preach by remaining a very conscientious and proactive advocate for myself. I stay on top of everything that the doctors and nurses are doing. I am asking tons of questions and extremely active in my care. When a nurse comes in and gives me a new IV or pill medication, I make sure I know what it is and why they are giving it to me. If I am not comfortable with something, I am very vocal in my thoughts, as I know my body and medical history better than anyone.
The challenge I have found this go-around is that some of the doctors have conflicting opinions on my care and plan of action. This has put me in a very awkward position, as I am not sure who to listen to and what course of action is the best for my overall health. Since most of these doctors are new faces, I decided to reach out to my Johns Hopkins team. I contacted the doctors that used to take care of me and know my history best. I reviewed everything with them to obtain their advice and confirm they were ok with the doctors’ game plan. Once I received their advice and blessing, it lifted a huge weight off my shoulders. It is amazing how attached we get to our doctors and the trust we build with them. It is quite remarkable. I am so thankful that my team at Johns Hopkins in Baltimore continues to remain active in my care and are always there for me even though I live in California. That is priceless!
I am thrilled to report that my kidney has remained well during all of this. The course of action is to continue to try and test my pancreas with fluids and nutritional shakes. They are reviewing my records from Johns Hopkins to gather any history on my previous pancreatitis episodes. They think it could be sphincter of oddi dysfunction. If this is the case, the gastrointestinal doctor may perform a procedure on me. Time will tell. We always seem to want answers in life as to ‘why.’ However, in life and with medical issues, we can’t always connect the dots.
“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun”
With all of the health issues I have endured, I would think I have a full appreciation of the simple things and how much life means, but I have learned this is not true. With each new challenge that presents itself, I gain a greater appreciation of life. When I go through times of uncertainty with my health, the world becomes crystal clear. I obtain a laser focus of what really matters. I hug Noah a little tighter. I tell him how I appreciate his love immensely and how he gives me strength and something to look forward to. All of a sudden those pending emails can wait to be answered the next day. All I want is a simple life. I aspire to work full-time and contribute to society. I strive to be an avid volunteer and help as many people as I can. Most importantly, I want to have fun with my precious husband and live every day to the fullest with him. That’s it. It’s not complex. I don’t ask for much. A day not in the hospital is a good day for me.
On our wedding day I vowed to Noah on a granite foundation at Glacier Point in Yosemite National Park that…“I also commit that I will take the best care of myself, never give up and fight to the end to spend as many wonderful healthy days as I can with you on this beautiful journey.”
Chapel at Sutter Auburn Faith Hospital
I continue to remain positive, hopeful and confident we will get answers to all of this and that this too shall pass. I will forge ahead living up to my vows to Noah, with a bright smile and will never lose hope nor my zest for life.
I have been overwhelmed by the outpouring of love, support, positive thoughts and prayers that I have received from so many via Facebook, Twitter, emails, phone messages, text messages, visits, etc. Since my main focus is on recovering and I am unable to respond to all of you, please know that your words of encouragement have touched my heart greatly. I believe in the power of positive thinking and prayers and I thank you for playing a big part in helping to restore my health.