Listening to Sickle Cell Patients Is Crucial During a Crisis
I recently was admitted to the hospital during a sickle cell crisis and because of suspected COVID-19. My experience was harrowing.
I have experienced many things as a sickle cell disease patient. I have had pneumonia more frequently than I can remember, suffered collapsed lungs, had deep vein thrombosis and pulmonary embolisms, spent weeks on end in intensive care, and been intubated a number of times. But this latest admission was the most traumatic of my life.
After being in the hospital for two weeks, I decided to discharge myself. It was a difficult decision, because as a sickle cell patient, statistically I have a higher risk of developing life-threatening complications from COVID-19.
Based on this experience, I’ve come up with some advice for healthcare providers about ways to better care for and support sickle cell patients when we are ill. I hope you find my suggestions helpful.
Open and honest communication between healthcare providers and patients is vital. This includes during diagnoses, while issuing referrals to other teams, when prescribing and withdrawing medications, when delivering test results, and everything in between.
Care providers should keep patients updated and accurately informed, and involve them in care planning and decision-making. They should avoid making key decisions without involving the patient. Doing so can be disheartening to a patient and can weaken their trust.
Communication includes listening to the patient. For example, although I was given an exchange transfusion recently, a few hours later, I was still in pain. Doctors removed the pain relief I was prescribed, despite my objections that I was still in pain. My pain team also thought I should remain on pain relief medication.
But a doctor didn’t think it was possible for me to still be in pain because I had just received an exchange blood transfusion. Yet I still was in excruciating pain and couldn’t even move.
Doctors should remember that patients are unique and might not always follow textbook examples. In my experience, it’s possible to have a blood transfusion and still experience sickle cell crises. This is not the first time it’s happened to me, and I am sure it won’t be the last.
Care providers should think holistically when dealing with sickle cell patients. Treatment goes beyond administering pain relief and antibiotics. High-level body pain makes simple daily tasks a struggle for patients. This means we may require assistance with things that others might be able to do independently. Please ask us if we need help.
One example I often struggle with is lifting my body while in bed, because I often slide down. When I’m in a crisis, I can’t move my body up or roll from side to side, so I need assistance. The same is true for personal care tasks.
It is important for care providers to be patient (no pun intended). When dealing with high levels of pain, most people are not themselves. I am certain this is true not only for sickle cell patients, but others as well. The effects of a chronic condition can be physically, emotionally, and psychologically overwhelming.
Being in an excessive amount of pain, taking some of the strongest opioid medications available, and still having pain fail to dissipate can leave patients feeling frustrated, upset, and angry. This certainly is the case for me. Be patient with your time and kind with your words to sickle cell patients while we battle through this difficult time in our lives.
Based on conversations I’ve had, some doctors might seem cold and disconnected because it could be a coping mechanism for them. I am not a healthcare professional, so I can’t speak to effective or ineffective coping mechanisms for doctors. But I can say that patients are people, too, and we’re often in our most vulnerable state when you see us. The best advice is to treat us with dignity and respect, and offer and deliver the type of care you would hope to receive yourself if ever seriously ill.
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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sickle cell anemia.
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Comments
Cynthia-Mae Askie
I suffer from chronic pain due to sickle cell anemia. I live in Utah where there aren’t that many sickle cell patients. I am originally from west Africa and moved here due to a devastating civil war in my country that left me severely traumatized. I wasn’t diagnosed with sickle cell until I was 17 years old due to inadequate medical facilities in my home country, eventhough I was born with the disease. Pain medicine worked for awhile for me. I would get transfusions also but was still in and out of the hospital frequently. It was frustrating. I basically lived in the hospital during my junior year of high school. My trauma was never treated and at the time I didn’t even know what to call it. I ended up abusing street drugs to cope and I struggled 5 years with no help whatsoever. I was kicked out of clinics and no one wanted to help me. I struggled in my darkness on my own and was in and out of jail. I was finally able to get my life back and was able to find stibility in treatment with a doctor. However, the stigma was already there. My pain was so difficult to control and every time I was admitted to the hospital I was refer to as the addict. My doctors would never listen when I tell them how bad my pain was. They always thought I was drug seeking. Sickle cell anemia is a terrible disease and a lot of people don’t understand the severity of it. I also got exchanged transfusions but the pain was still there. Doctors expected some miracle that the transfusion would magically take the pain away. How I which it was that simple. Now I am being treated by a new team of doctors who involves in my treatment plan. Even though I still struggle with pain control, I finally feel like I have found my voice again. My doctors at Intermountain medical center respect me, and involves me in my care. As I write this, I am experiencing crisis with pain in both my arms bones. For the first time however when I went to the ER two days ago my doctor treated me with High dose ketamine. Although the pain did not dissipate, I experienced immediate pain relief for one hour. I have never experienced that in my life. I pray that one day we will be able to use this drug to manage our pain at home. I have build a tolerance to other pain medicine and nothing else works for me anymore. It’s very hard living with this illness. I just thank God that non of my siblings suffer this terrible disease. I am currently taking Endari and I really hope it helps me. I hate getting admitted to the hospital. Sickle cell anemia has stolen so much from me.
Mary Shaniqua
Hi Cynthia-Mae,
I hope you are well. I am very sorry to hear of your negative experiences in managing your sickle cell disease. I am glad to hear that your new care team involve you in your treatment plan - this is fantastic news. I hope your health improves over time and you can begin to live the life that you want. I understand the frustration with having lost so much to sickle cell. I, like you, am the only person in my family with the disease. We must persevere and continue to fight so that we can live our lives as freely as possible. Also, we must continue to use our vices to help not only ourselves but other sickle cell patients within our community. I am hopeful that your new team are able to work with you to increase your quality of life. Your experience puts you in good stead to advocate for yourself and others - be strong, be courageous and use your voice when you can.
Wishing you all the best
Darren
Aye bro listening to your story king HY HEART GOES OUT TO YOU BRO. Sickle Cell is definitely one of the most worse condition to have. An this is how I came across your story looking online for another doctor for care cause my current received a note from my previous Dr. He mad and did it out of spite cause i didnt agree with his plan of care. So now my current literally today called me a addict or Im delusional and lying and making stories say Im in pain. I pray God will look out for all my fellow warriors out there. I wanted to let you know your not the person going through it. An I really hope GOD steps in your favor moving the day forward and sending you a doctor that will be perfect for you and not judge you because we were born with a condition we never asked for, GOD GOT US!
Viviane Salzman
Dear Miss Mary Shaniqua,
I am terribly sorry about the negative experience you were subjected to during your past hospitalization. As a sickle cell patient and a health care professional, I completely understand and can relate. It is unfortunate that you had to leave the hospital against medical advice. I have been there myself and it pains me that we have to go through experiences like that. It can be very frustrating. Worst of all, situations like this can send us to deep depression and bring feelings of hopelessness. I hope you are feeling better and continue to recover steadily.
No one can imagine how excruciating sickle cell pain can be. Hence, doctors and nurses most commonly are reluctant administering large dose of opioids, for a variety of reasons. However, I believe the most common causes are lack of knowledge about the disease process, and fear of causing harm and being retaliated against. This can cause unnecessary patients' suffering. Had I not been working in the field I would not be able to understand. There should be more resources for health care professionals about sickle cell disease so we can be properly cared for.
Often when I am in crisis, I feel reluctant requesting pain medication when needed, fearful of being judged. I have witnessed on many occasions how nurses refer to their patients when they ask for pain medication as "drug seeker, addict, junky" to name a few. The best thing is to advocate for ourselves, pray and hope for the best.
I think it is a good thing that you gave your advice. Hopefully your suggestions will be followed.
Hang in there Miss Mary Shaniqua. This too shall pass.
Viviane
Mary Shaniqua
Hi Viviane, Thank you so much for your kind words. I believe you are right that the negative experiences are fueled by a lack of understanding around the disease. We must all work together to overcome this. Please do keep well.
Dr fecky
Care givers or Doctors should be listen and give reasons for wanting to carry out a decision. It makes the patient feel involved and ready psychologically which can help a long way.
Dave Muhovich
RBCs that have deformed (sickled) don’t carry oxygen well and they clog the micro-vasculature. This causes ischemia which causes pain. If the ischemia lasts too long there is tissue death (infarction). An exchange transfusion prevents new sickling but doesn’t immediately heal areas of infarction. If the ischemia was severe enough to cause infarction - there will still be pain after the exchange transfusion! Duh!
Mary Shaniqua
Thank you for explaining the medical reason behind my pain. I will be sure to memorise this in case I am faced by a similar situation in the future!
BadgRN
Thanks for writing this, Mary. I'm a nursing student writing a report on Sickle Cell patients and have worked with them as an NA. This is very helpful and some useful tips I will take with me into practice!
Nichole C
My niece has sickle cell and is needing a joint replacement sooner rather than later. I am a nurse but not near her to go to appointments. She does not think that the doctor is listening to her and it's frustrating her to the point of not going to the clinic. I am glad that she chose to try a pain clinic instead but basically she needs to go back to the sickle cell doctor. How can i help and empower her to be heard. I know all the things that are supposed to happen, but she clearly is not happy...There is a Nurse Practitioner on staff but the doctor makes the plan of care. I am not a sickle cell expert by any stretch of the word.