We moved to Indianapolis, Indiana on June 18th of this year. My Warrior and I were excited; we had researched, asked for referrals and met with Sickle Cell Society in the city. We heard of the wonderful care Sickle Cell patients received in Indianapolis. I was elated to have an opportunity to experience better care for my warrior. I was optimistic!
However, moving to a new city had proven to be very challenging for me and my Warrior. After two weeks of minor pain crisis, on June 28th my Warrior went into the hospital. He has been dealing with two very painful Leg Ulcers for two years and they had become infected. When we arrived at the ER, I was on top of it, asking questions, taking names and times. I was surprised to find that they had a protocol for Sickle Cell Patients. He was admitted immediately and they began care. We were moved into a room and I let my guard down for a moment to rest because we had been awake all night working on pain control!
When I awoke the next day, the team of doctors were standing around me and my warrior. So many Doctors had come and gone while I was sleeping. With sleepy eyes, I started my usual questioning, they were happy to answer. I thought this is great! Finally, we have arrived to a place where the doctors where well versed in the care of Sickle Cell Patients! I let my guard down a little further. After all, I needed to find a job and I was really tired. I thought I could rest. Then, it happened! What I feared happened; he was not receiving enough pain medication to handle the pain crisis he was experiencing. At first, I was relieved with the quick attention to his care, then, I was alarmed. They were not moving fast enough, his pain was climbing out of control and the amount of medication was not enough. I had to put my guard up again! Questions needed to be answered and action needed to be taken. After some conversation, his pain management schedule and amount was changed. We were relieved and we rested.
On July 10th my warrior and I went home. Follow up appointments had been made with the Doctors from his hospital stay. Everything was looking great again. My warrior went from having 1 doctor to care for him to having 3 doctors, 1 Primary Care Doctor, 1 Hematologist and 1 Wound Care doctor. This was promising. In addition, I started a new job as an 8th grade Social Studies teacher in an Alternative School.
At the first appointment, I came prepared with questions. Making the team is difficult. You must make it through the tryouts. So far, the tryouts were during his hospital stay. So, all I needed to do was ask the final questions. So, I asked, “How long have you been working with Sickle Cell Patients?” I had asked this question in the hospital but did not receive a definitive answer. The answer I received was “For a little while.” Hmmm, I was not sure with this answer but I moved forward. “My husband is on a lot of medication, how comfortable are you with this?” I read the list of medications my warrior is on. He said, “I am ok.” I was moderately comfortable; I decided to put him on probation.
Two months passed and the looming problem was posed like an elephant in the room. At first, we were not real alarmed, it was not obvious. We felt like we could work with the Doctor until my husband and I had a conversation. I realized while I was busy with starting the school year in August, he was having a difficult time getting his prescriptions from his Doctor. I encouraged my Warrior to ask questions and be honest. At a meeting with his Doctor, my Warrior expressed, “I feel like you think I am a drug seeker.” There it was, the looming problem for most Adult Sickle Cell Warriors, “Are you really in pain or are you a drug seeker?” The Doctor said he was not trying to make him feel that way and he suggested he talk to a pain management Doctor. Awesome, another doctor who specialized in Sickle Cell! My warrior went to the appointment and he was told “We are going to put you on new medication, but in order for us to do this we need to remove all the other medicine out of your system before starting this new medication.” So, we discussed and researched this new method of pain management. We spoke with Doctors, Nurses and Warriors. NOONE had heard of this type of pain management. Finally, it hit us! This was not pain management— this was detox and we were not properly informed.
Nevertheless, fall break for my students began on Oct 5th. I had been talking about a much needed break for my husband and I since I discovered we would have a two week break at the beginning of Oct. However, this break was interrupted by a battle with the Doctor. My Warrior went into another pain crisis, the Doctor refused to provide pain prescriptions for my husband until he went to the “pain management appointment.” When I called to discuss this, I was met with resistance. Eventually, I asked to speak to the Doctor. The Doctor called shortly after, we discussed my concerns with my husband’s care. The Doctor decided that my husband would need to see another Doctor because he was not comfortable with the level of medication my husband was on. Finally, the truth!
Warriors and Caregivers, please do not allow anyone to tell you what is right for you! Take time to research. This new pain management solution was not the best solution for my husband; we would have not known this if we did not research. We trusted our “gut” feeling and decided not to go along with the treatment even though the Doctor and his Nurse were adamant about the treatment. Again, we researched before we made that decision. If you cannot research, ask questions. This is your body, this is your life, treat it wisely.
Needless to say, this Doctor did not make the team! We are ok with that. We had attempted to work with him. In the end his lack of knowledge with Adult Sickle Cell Warriors was shown by his ignorance in care. We were referred to another Doctor. Monday October 29th we arrived at the appointment, I took out my pen and paper. He spoke as if he was well versed but I was not taking in chances. I did not ask my first question, “how long have you been working with Sickle Cell Patients?” He answered that question in his assessment of my husband’s case, he actually read his medical records. My next question, “My husband is on a lot of medication, how comfortable are you with maintaining his care?” I am comfortable was his reply. Then, he agreed that complete detox was a very bad Idea and he began to outline a pain management treatment that would help my husband. In addition, he began discussing pain prevention treatment. This is what was needed for my Warrior, not detox. So, now we have a new doctor to send to tryouts and finals before he MAKES THE TEAM!
My people are destroyed for lack of knowledge.
Mrs. Tamara Adams
A Warrior’s Caregiver!