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,
Mawunu
Patient-Achievers helping other patients with Advice
Dear Ms. Hamilton,
My apologies for not writing sooner. I have not checked my e-mails in several days. Below are a few points which come to mind immediately. I shall be 60 in June.
As long as you feel unwell and have pain in your spleen or any other part of your body, I would avoid flying until your health problems are dealt with. There is nothing like preventing a sickle cell crisis as a crisis is a miserable and unbelievably painful experience.
Drink two to three liters of water each day, avoid alcohol, do not eat heavy meals (prefeably four or five lighter meals a day), and do not have your last meal too late at night, keep your body weight down, stay well rested, never exhaust yourself, do gentle exercise, walk. Always dress warmly; even in hot weather, carry a light shawl around with you to protect you from sudden exposrue to cool draughts and air conditioning.
Your eyes need to be checked regualrly (i.e. approximately every six months) to make sure that you do not have any bleeding into the retina. Unfortunately, this is a problem we 'SC' patients suffer from. If blood vessels in your eyes rupture during a trip, you will most porbably not be able to fly home for medical care so it is extremely important that you should be in good health before flying.
I have found it extremely helpful to own a copy of “The Sickle Cell Disease Patient” by Dr Konotey-Ahulu, and I encourage doctors to have a copy on their bookshelves. I also refer them to his website www.konotey-ahulu.com We need to know our bodies and about our ailment so we can educate doctors as only too few know about it.
I have learned from Dr. Konotey-Ahulu that there is a big difference between managing a patient and treating a disease.
You can help any open-minded, receptive general practitioner who does not know much about sickele cell disease to manage you correctly.
Please ask Dr. Konotey-Ahulu what blood tests you should have. My spleen has disappeared – if I remmeber rightly, it was overworked fighting infections. Every three years or so I have a “pneumovax” shot and, at the beginning of winter, take a course of medication to make my immune system react quickly whenever I have an upper respiratory tract infection.
A few drops of Aerobic Oxygen (stabilised oxygen) in a glass of water about three times a day is very helpful. It is not sold in the US but can be ordred from Canada. As I do not have the address within reach at the moment, I shall send it to you tomorrow.
All that I have learned about managing my problems with sickle cell disease has been thanks to Dr. Konotey-Ahulu. My using Aerobic Oxygen is also thanks to him.
China and Australia will be well within your reach if you are in good health.
Please spend a couple of years looking after your health then plan your trips with the necessary days of rest well below an altitude of 2000m. The correct and constant air pressure on board an aircraft is also important, particularly on long-haul flights.
I live in Geneva, Switzerland. A small group of us is reaching out to other sicke cell patients in Geneva and forming a suport group as there are misconceptions and errors in treatment that are repeated. We patinets need to know our bodies and be firm with doctors. In the long run, they respect us for our knowledge and many of them are grateful to us for helping them improve our health.
If you know of any other sicke cell patints in Fort Lauderdale, you may wish to form a support group.
With best wishes,
Mawunu
felix Konotey-Ahulu <admin@sicklecell.md> wrote:
Dear JudithThanks for writing. I'm off somewhere at the moment so I cannot respond in detail to your letter.Where are you? What do you do?I'm copying your letter to a super lady who can help you. Her name is Mawunu Chapman Nyaho.Meanwhile, go to my website www.konotey-ahulu.comOn the Home Page you will find on the right hand side 'PUBLICATIONS'. Click on it. That brings you to a page with dates from 1965. Scroll down the years to the Year 2001. Read all 4 articles listed in that year before getting back to me.Felix Konotey-Ahulu
