Why We Need Better Doctor-patient Communication
It has been a while since I last wrote. This is because unfortunately, I had another hospital admission. I was admitted in mid-April and discharged last week, so I was hospitalized for quite some time.
I had a sickle cell crisis, although I’m uncertain about what caused it. I have written previously about my main triggers for crises, but none of these were present this time around. I wasn’t stressed and I hadn’t contracted an infection. I felt exhausted, but I wasn’t due for a transfusion at the time I went into crisis.
We’ve had a decline in the weather here in the U.K., which has been wet and cold despite it being spring. However, I hadn’t been outdoors much around that time, so I doubt the crisis was triggered by the cold.
It is so important to me to know the cause of a sickle cell crisis. This is so I can be aware of any adjustments I may need to make to my life.
My latest crisis doesn’t seem to have been triggered by anything “serious,” which is why I am so angry that I ended up in the hospital for such a long time.
There is some background to this. I bought my home in 2018. When buying a home, no one advises you about the boundaries of ambulance service. My house is outside the zone for the hospital where I receive specialist treatment, so ambulances must take me to a different hospital that doesn’t have a hematology unit.
I had previously been admitted there, and unfortunately, my latest stay wasn’t any better than the previous one. Without going into too much detail, I will say that I believe my hospital stay was longer than necessary, likely because I wasn’t being listened to.
I was denied medication I usually take, but luckily, I encountered a doctor who had previously treated me at a different hospital. She changed my treatment to better align with my care plan. Eventually, I improved enough to go home, not long after this change was made. Thank God for helpful doctors.
I can’t stress enough how important it is for medical personnel to listen to sickle cell patients when we speak. I think this is especially true if they are not hematology specialists.
Recently in the U.K., a judicial inquiry has started into the unfortunate death of Evan Smith, a 21-year-old sickle cell patient who was denied the treatment he knew he needed. It cannot be stressed enough that patients need to be listened to, particularly when the patient has a condition that requires specialist treatment, such as sickle cell disease.
It appears I may have some permanent damage to my right hip, which I assume was caused by prolonged crisis. I have avascular necrosis, but I previously only had experienced issues in my left hip. Now, my right hip has been in agony.
I am hopeful the damage can be reversed, and I have arranged for intensive physiotherapy, starting next month. In the meantime, I rely on walking aids to get around.
Another thing that often is overlooked in sickle cell treatment is promoting good mental health. Usually, if someone experiences trauma, or perhaps a near-death experience, good mental well-being would be a priority. I’ve found that this seldom happens with sickle cell patients.
My mood has been low as a result of the recent hospitalization and the possibility of long-term damage to my body, which I believe could have been avoided. But what’s done is done, and I am trying to look ahead. I’m hopeful that my hip will improve, and I won’t suffer long-term mental consequences.
I’m taking it one day at a time and trying to learn my new reality so that I can function as close to my previous reality as possible. I look forward to being well enough to socialize with friends and return to work at some point. Moving forward, I also will factor in access to hematology centers when looking for somewhere to live.
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