Throughout your lifetime you are prescribed various medications, some of which work perfectly for you, while others you have had various side effects or allergic reactions to. Along with this, you have had various medical procedures, such as a surgery or your most recent colonoscopy, in which they have prescribed or used specific medications. The average person does not remember all the names of the medications they have taken, but they trust that somewhere in a computer database this information is provided, especially for the next clinician who needs to know their reaction to medication. There is an innate trust that this type of information is there. What I recently found out is this is NOT the case, and this lack of information almost cost me my life.

Protect Yourself

Over the years, I have had many bad side effects and allergic reactions. This is why I came up with two valuable methods to provide information on these side effects and allergic reactions. My first method is keeping a computer list of all my medical procedures, injuries, medications I have taken that have been helpful and any medications I have had an adverse reaction and/or an allergic reaction to. Each year I update this list in case anything has changed in the past year, and I always keep it with me in a reduced format. This way, whenever any doctor or hospital asks about my medical history and allergic reactions, I am able to provide this list to them, and they can quickly copy it and put in my file. Due to my medical history and long list of adverse and/or allergic reactions, I also wear a medical alert bracelet and carry a medical alert card. This company also has a list of all my injuries, medications, and reactions to medication. Along with this it has the phone number of my primary care physician and my health care proxy person. I cannot stress enough the importance of having this information, especially if you have had any adverse or allergic reactions to medicine or a medical procedure.

Is Tracking Your Own Medications Enough?

Having this as a backdrop, I felt very comfortable that this information was provided when I went for my first biopsy at a major medical hospital in Boston. They asked me if I had any adverse reaction when I went for my colonoscopy; I said no. The nurse said I would be administered the same medication, and I never thought anything about it. In fact, I never even asked the doctor what medication was given to me when I had this procedure done years prior to the biopsy. I made a major assumption that they had contacted the doctor who had done the procedure or it was in my medical record when they asked me the question.

I soon discovered that the medicine they gave me for the biopsy was NOT the same medication. I had complete trust that the doctors and staff knew my history of severe reaction to medication, and I have a long list, but they never checked to see if what they were going to give me was the same medication. I figured if they were asking if I had a reaction to the sedative medication for my colonoscopy, then they would be giving me the same medication. The staff at the hospital did mention that they were going to give me Fentanyl. Again, I thought that was what had been previously given to me without any adverse reaction. I found out weeks later that I had not been given Fentanyl by my doctor for my colonoscopy, but I had instead been given Demerol, and the hospital staff had never checked this information out.

My reaction to Fentanyl was a sheer nightmare! First of all, I have virtually no history of headaches except for when I have a high fever. I do have a benign brain tumor in the left prefrontal lobe, which is called a Meningioma. Due to this brain tumor, my neurosurgeon explicitly said to me that if I get an awful headache or seizure, I have to have immediate brain surgery.

On the day of my biopsy, I felt fine when I walked out of the hospital after the procedure. However, on the way home, I started to have a headache so severe that it is impossible for me to even describe the pain I was in. I left the hospital in fear, wondering if I had liver cancer and realizing that because of this headache I might now have emergency brain surgery.

Upon arriving home, I called the hospital and requested to speak with the attending physician. Meanwhile, as most of us do now, I Googled all my symptoms, including symptoms that come with the medication Fentanyl. Waiting for the doctor to return my call seemed endless. When she did, she assured me that I was having a reaction to the Fentanyl and it would go away, and it eventually did, but only after one week of hell and back.

During that one week I had all of the following symptoms of various degrees:

• Abdominal or stomach pain
• Black, tarry stools
• Blurred vision
• Change in walking and balance
• Chest pain
• Clumsiness or unsteadiness
• Confusion
• Cough
• Decreased awareness or responsiveness
• Decreased urine
• Difficult or labored breathing
• Dizziness
• Fever or chills
• Feeling sad or empty
• Headache
• Increased thirst
• Irritability
• Irregular heartbeat
• Lack or loss of strength
• Lightheadedness
• Loss of appetite
• Loss of interest or pleasure
• Lower back or side pain
• Mood Changes
• Muscle pain or cramps
• Muscle stiffness
• Muscle twitching or jerking
• Nausea
• Nervousness
• Numbness or tingling in the hands, feet, or lips
• Pain in the joints
• Rhythmic movement of the muscles
• Seeing, hearing, or feeling things that are not there
• Severe constipation
• Severe sleepiness
• Shakiness in the legs, arms, hands, or feet
• Sleepiness or unusual drowsiness
• Slow or fast heartbeat
• Thinking abnormalities
• Tightness in the chest
• Tiredness
• Trouble concentrating
• Trouble sleeping
• Unusual tiredness or weakness
• Weight loss

Less common:

• Changes in vision
• Excessive muscle tone
• Feeling of constant movement of self or surrounding
• Feeling of warmth or heat
• Flushing or redness of the skin, especially on the face and neck
• Irritation, pain, or sores at the site of application
• Itching skin
• Muscle tension or tightness
• Rash
• Sensation of spinning
• Sweating
• Trembling or shaking of the hands or feet

On one website there was the following message: “If any of the following symptoms occur while taking Fentanyl, get emergency help immediately”. I was not taking Fentanyl, but I had it administered to me as part of my biopsy, which was to see if the tumor I had on my liver was liver cancer or not.

I cannot explain to you how scary it was waiting for the report from my biopsy, while also experiencing all of the symptoms listed above. I had no idea if some of my symptoms were from cancer, such as the extreme fatigue, or if they were a side effect of the medication that was given to me in the hospital. All I knew was that the doctors said the symptoms would subside, and if they did not then to give them a call. After a week there two pieces of good news. The first was I did not have liver cancer, but instead I have an extremely rare type of lymphoma. The tumor on my liver has four different types of lymphoma. The most prominent is aggressive cancer, but the things I have been doing in my lifestyle and brain health program has kept it from going to other parts of my body. The second piece of goods news was the fact after a week, the Fentanyl was completely out of my body and all of the symptoms I was experiencing were no longer present.

I did a follow-up call to the doctor who did the colonoscopy, and he said that during the procedure I been given Demerol, not Fentanyl. After hearing this, I immediately called all of my doctors and various hospitals and told them to make sure I was never given Fentanyl again. This was respected and I was not given Fentanyl when another biopsy was done two weeks later at Dana Faber to concur the original diagnosis.

I am writing this blog to make sure no one ever goes through what I did. I never thought a major Boston hospital would administer a medication without warning me of its possible side effects, and leave me under the impression that I would not experience any side effects. I trusted that they would check to make sure the medication they were giving me was the same one I was already given and did not have any reactions to. We all trust in our doctors and/or hospital, and expect them to make sure of things like this when administering us medication. It never occurred to me that there could be similar medications, and one could have such awful side-effects and the other would have none, because no one provided me with this information.

It is my hope that this blog and what happened to me helps others to prevent what occurred to me from happening to themselves, as it was one of the most awful weeks in my life. I look forward to hearing from you and I hope you will share with me if you have had a similar experience.

Conclusion:

I cannot express how important it is to keep records of what medications have helped and not helped, as well as the medications you have had any side-effects from or reactions to. It is important for you to keep this list with you at all times, because you never know if and when you might need this information. If you have a chronic illness, it is also helpful to wear a Medical Alert bracelet, which has some information and a phone number to Medical Alert that keeps all of your information on file. Lastly, whenever you see your primary doctor or specialist, you should make sure they have a copy of this information as well.

Dr. Diane