FURTHER ADVICE FROM ONE PATIENT TO ANOTHER PATIENT
From Mawunu Chapman Nyaho (Europe) to Judi Hamilton (USA)
If I remmeber rightly, the little bottle of Aerobic Oxygen will last up to two months if you take about 20 drops three times daily.
I am grateful for your question because I forgot a very important point about pain killers.
My brother “ended up” having a sickle cell crisis in late spring last year (2007). Too much traveling by air, long working hours and enjoying wine or some other alcohol as an aperitif or with his evening meal were among things that led to the crisis.
He was given morphine to alleviate the excruciating pain. As Professor Konotey-Ahulu put it when they spoke over the phone while my brother was in a hospital in Maine, “morphine will keep you in hospital”. (The School of Medicine in Ghana teaches doctors that morphine should be used only when a terminally ill patient is in great pain.). Fortunately, the medical staff in Maine was willing to learn. As soon as they were told that morphine was supressing the oxygen supply to his body (the crisis meant he already was suffering from lack of oygen), on Prof's advice, he was given shots of “Ketorolac”. Within 48 hours my brother had been discharged from hospital.
Some doctors in hospitals in Europe are very stubborn and patietns and their families have to be very, very firm in refusing the use of morphine to alleviate pain. Last summer, a father flew in from Canada and shared his daugher's hospital room for a week, until she was discharged, so that treatment that was further aggravating her condition would be stopped. She had been given morphine and a full blood transfusion instead of a partial blood transfsion, so her blood became even thicker and normal oxygen supply to her body and brain was furher obstructed.
Please do read the Professor's blog and website regularly and, please do contact me, if necessary, for patient-to-patient exchanges.
There is nothing like walking into a doctor's office with tags on the essential pages of his book on The Sickle Cell Patient.
Rule 001 = live healthily, for living a healthy life is living without sickle cell crises. Dr. Konotey-Ahulu asked about your job – that also falls into the “living healthily” category because if it is tiring and stressful you will need to do something about that.
A few more rules:
1. Never allow morphine or any other opiate to be administered as a pain killer when in crisis.
2. Inform yourself about partial blood transfusion.
3. Know what your hemoglobin level is and never accept a blood transfusion that will raise it far above what your body is used to living relatively comfortably with.
4. Avoid alcohol – make water your favorite drink.
I hope you have had your spleen checked. Please do so as soon as possible.
With best wishes,
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