All hope hangs on an email

It has seemed like a Herculean task trying to get a port. There have been numerous roadblocks and speed bumps which have arisen for over a year. Finally, I was able to get my port. But, perhaps the obstacles were not meant to be overcome.

Tears stream down my face. The pain, oh, the pain, it wants to consume me. My chest were the port was placed is exploding in pain. The pain radiates to my shoulder and shoots down my arm to my elbow and wrist. The feeling of pins and needles plagues my fingers. In my neck and head, a tremendous pressure makes it feel as though my head is going to burst. Immense pain shoots through my head and neck. Dizziness spells pounce upon me, making it feel as though I am on a ship far out at sea. My vision fades. Sometimes I just black out. Other times I pass out. Nausea and vomiting are close at hand.

I am frightened and scared. This cannot be right. There must be something wrong. I call interventional radiology several times. I am assured pain is normal. I am to take Tylenol for my symptoms. I try to explain this is more than just some nagging pain. The pain is horrific! On a good day, it is a seven on the pain scale. On a bad day, it is about a 9.5 on the pain scale.

I try to go about my day, but the constant symptoms make it nearly impossible to leave my bed. I feel so sick. I pray each day for symptom relieve.

In desperation, I ask an online community of folks with cystic fibrosis (almost all of whom have ports) if my myriad of medical maladies is normal. I receive few responses. I am told my symptoms are not the normal response to getting a port, but that it takes time for the port site to heal. I am told to give myself time to recover from the procedure.

I continue to wait and wait for a follow-up appointment with interventional radiology. Something needs to be done. This port cannot be causing this much pain. I wait and wait. Finally, the day of the appointment comes.

"Oh please, help me! I am so sick. The pain at my port site is raging out of control!" The nurse practitioner presses lightly on my port. I yelp in pain. My body shakes. My hands clench tightly together. I fight with all my effort to not break out in violent sobs. The nurse practitioner summons the doctor who placed my port. The doctor looks at the port from a distance. She tells me I am sensitive to pain. I need to see a pain management doctor to get pain medicine to manage my symptoms. "But," I protest, "This cannot be normal. There must be something wrong with the port." The doctor tells me I just need to take strong pain narcotics, something she cannot prescribe. I am given a referral to a pain management doctor. The wait time to see the pain management doctor is three weeks. I leave the appointment, disappointed and shaking uncontrollably in pain. How can I continue for another three weeks in this much pain with no pain medication? This thought threatens to send me into a crying fit.

More days pass. My symptoms intensify. Now, I begin experiencing palpitations and can feel my heart race. I develop an odd pain and swelling in my foot. When I place weight on my foot, I develop an awful, excruciating deep pain. As soon as I stop bearing weight on the foot, the pain disappears. During this time, I also notice I have a large bruise on my knee. I do not remember do anything to my knee. It too only hurts when I place weight on it. I immediately think back to the times I have had blood clots. Yes, these symptoms are highly reminiscent of the times I have had blood clots in my legs. I try to bury these thoughts, but my heart nearly wants to break from this overload of information.

Searching for more information about ports, I reach out to a Mitochondrial Disease group on Facebook. I briefly explain the symptoms I have been having. I ask how long it takes to recover from the procedure. Like a firestorm, my post receives numerous responses telling me this is not normal. I need to get to the emergency department. I need the port to be checked out. Several people who comment work in the medical field. One nurse gives me a very detailed outline of everything which needs to be done regarding my port. She says at the end of it all, "When nothing can be figured out, but the port is causing a lot of pain, we will pull the port." I appreciate her words, but I absolutely deny this port is going to be pulled. I have been through so much. Something will be done to save it. 

I decide I desperately need to contact my infectious disease (ID) doctor who ordered my port. But how can I contact him? I have a phone number to his office, but to leave a message and try to explain all these recent events seems like a monumental task. Due to the severe pain, I am short of breath. Talking is difficult and thinking quickly to articulate words seems nearly impossible. I decide to make a bold move. I have my pulmonologist's email address. My pulmonologist knows my ID doctor. Perhaps she has his email or has a way to get my email into his possession. I am reluctant to send the email. I know she is extremely busy. I do not want to bother her with my kindergarten concerns. But after much deliberation, I decide this is my only option. I type up an email and at 10:30 p.m., I hit "send". I drift off to sleep and hope the email gets to my ID doctor in the next few days.


Link to Part Two click here