I’m Finally Home After an Extended Hospitalization

Mary Shaniqua avatar

by Mary Shaniqua |

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In my last column, I shared that I was in the hospital due to a sickle cell crisis. I have finally been discharged, thank God.

I contracted an infection at the beginning of February that resulted in a crisis. I was hospitalized for five weeks and in extreme pain for much of my stay. Needless to say, I am thrilled to be home!

I deal with poor health and hospitalizations more frequently than the average person. As such, I have become somewhat desensitized to the seriousness of a hospital stay. It usually takes quite a lot to shake me up. But I was scared this time, especially during my admission, due the nature of the symptoms I was experiencing.

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This hospital stay was difficult for me. Due to COVID-19 restrictions, I was only allowed one visitor. I usually have many visitors when I am in the hospital, so this was a big change for me. However, one perk was that I was isolated in my room instead of being in a bay with other patients. I preferred this arrangement.

The precautions also eased my concerns about an extended hospitalization mid-pandemic. That worry was one of the main reasons why I delayed calling for an ambulance at my symptoms’ onset, which would have been the wise thing to do. Lesson learned.

It’s been said that every gray cloud has a silver lining!

One of my main crisis triggers is infection. Sickle cell disease affects each patient differently, so some of us may be more susceptible to certain factors than others. However, several “staple triggers” tend to affect all sickle cell patients, including dehydration. My infection caused me to become dehydrated, and that was too much for my red blood cells to handle.

Communicating my pain effectively to healthcare professionals remains a challenge for me. I have concerns about taking high dosages of pain relief medications, but I understand they are sometimes necessary for my comfort when I’m screaming in agony.

I’ve also found that some medical professionals can get hung up on the science of sickle cell and not listen to what the patient in front of them is reporting. I appreciate that this may be a difficult position for doctors and nurses who have been trained a certain way. But it’s vital that these professionals remember that each patient is an individual, and there is no arbitrary formula that can be applied to all sickle cell patients who are in crisis.

It’s frustrating when doctors propose reducing the dosages of my pain relief medication when I still need the higher dosages to keep my pain at bay. If I’ve verbally communicated my concerns about these medications, but request them anyway, isn’t it likely that I’m in severe pain?

I would continue to advise medical professionals to ensure they’re listening to the patient’s needs and concerns and factor these into the treatment plan. To those already doing this and encouraging their colleagues to do so as well, thank you! We as patients appreciate you more than you know.

Now that I’m home, I plan to rest until I’m fully recovered. Unfortunately, I’m still in pain, but nowhere near the levels of the past five weeks, so I’ll try not to complain. I look forward to seeing my family and friends and eventually returning to work.


Note: Sickle Cell Disease 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 Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

josephine giandalia avatar

josephine giandalia

I'm so sorry you went through a very painful crisis. My two sons always had to deal with meds that were not even touching the pain when they were hospitalized. So I know exactly what you mean. Also having to deal with questionable looks from doctors in the ER about
how bad the pain was, especially that my sons are white. My youngest son is on Hydroxyurea for many years and recently on Oxbryta. Thank you for allowing me to comment.
Wishing you peace,
Josesphine Giandalia

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K Patel avatar

K Patel

My daughter is on Hydroxyurea. She had a crisis recently. However, she is back to work now.
That you have switched over to Oxbryta, can you let me know how long has it been since you have changed the medication? Is it more beneficial than Hydroxyurea? If yes, in what way?

Reply
K Patel avatar

K Patel

I am glad to learn that you are back home. I pray for your complete recovery! I shall be happy to learn when you resume your work. As I had posted in your previous post, my daughter had a crisis and was hospitalised. Now, she is back to work.
I wish to see you soon resuming your normal life.

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