Focus On Prevention and Not The Pain. The Do's and Don’ts Sickle-cell Disease - Prevention And Management.
INTRODUCTION
Hi, my name is Monte A. Pratt, I am 68 years and now living with Sickle-cell Anemia. Some, 60 years ago I was diagnosed with Sickle-Cell Anemia (HbSS). During the last six
decades, I was only hospitalized 4 times as a result of a major SC crisis. Normally, persons with SCD, on average are hospitalized 4 times per year. I was also hospitalized to have my gallbladder removed, I was transfused at the time. I was never transfused since.
At the age of 8 years, I was given a list of Do's and Don’ts.... they included not playing aggressive contact sports and ironically not playing 'wind' instruments in a marching band, and even flying on aero planes. I pretty much followed the Do's and Don’ts that I believe it can be the reason for my longevity beyond the average SC survival rate.
OVERVIEW
Based on my experiences over the last six decades, anytime I see a person - especially children and adolescents - doing excessive ‘physicalactivity’ that I was advised against. So then, excessive physical activity becomes a great concern to me. As it is a fact that physical activity demands lots of oxygen. Oxygen deprivation is the primary reason for a
person having a major SC crisis, therefore I placed a lot of focus in this area of prevention.
Most recently a female college basketball player, who died alone in her dorm room after playing a game. Then there was a very young college football player who collapsed and he died on the field in front of teammates. A combination of heat, dehydration and oxygen deprivation was the primary cause of his death. There have been occasions where high school, college football and professional players having SCD collapsed and died in the same way too.
In a case seeing a young lady named Shaniya; playing 'wind' instruments in a marching band. Such activity has resulted in the sudden death, as she is using up her oxygen and also by marching, she is physically exerting herself. I am not suggesting here that Shaniya, stop playing her 'wind' instruments... BUT I do suggest that she is ALWAYS monitored by the persons around her, watching for signs of a sudden SC crisis. Adults, limit your nightlife activities... dancing, alcohol and air condition is a bad combination... not good you.
PREVENTION PLANNING
In cases where persons having SCD, insist on playing competitive sports, like basketball, football, swimming and/or playing an instrument in marching bands, as a PREVENTION PLAN, it may even make sense for these persons with SCD to have plenty to drinking water and an even portable oxygen bottle nearby, should its use is need. One day, it just may be a lifesaver. Parents, guardians, school principals, teachers, athletic directors and coaches should ALL be made aware of these FACTS as they relate to students with SCD.
I offer this input, as I am almost certain my focus being on SC 'crisis prevention' is the primary reason for my only being in the hospital only 4 times and my longevity beyond the average SC survival rate. Maybe this suggestion can be applied in similar SC cases, where students are actively involved in such physical activities. However, each SC patient case is different: For example, in my case, I have a high-level of fetal hemoglobin in by blood. Persons with fetal hemoglobin tends to do better than other persons with Sickle-cell.
PREVENTION RECOMMENDATION
Okay guys, so I decided to re-post of my 'answer' (below) to a 'warrior', who asked me how I manage to stay well? I see too many of you posting over the number - 4 in the hospital and above, so I want to share what I do to stay well. Maybe it will help you to stay well too.
Yes, most of the time, I am Sickle-cell pain-free, as I offer that I focus on PREVENTION and not the PAIN. At my age, I do have some arthritis in my knees, but its pain is not as intense as an SC crisis. However, about once a month I only feel minor SCD discomfort pains, but nothing to complain about. I believe that this happens because blood cells in
persons with SCD only live on average for 30 days, while in a normal person, blood cells, normally live for 120 days. BUT, I have not had a major SC crisis in over 25 years.
So then, please let me share here my daily routine and regimen with you. Now, if you are not already doing it, try the following regimen. First, in addition to drinking a lot of 'room temperature' water and eating lots 'greens' / veggies, I have heavy daily vitamin regimen applied and other things that I do to avoid getting an SC crisis. My routines are as follows:
1. Vitamins and Supplements - Mornings - After having breakfast every morning, I
take Folic Acid (essential every day), Vitamins: C, B-Complex, B1, C, D3 and E. At Nights - After eating something light, as cereal, just before bedtime I take Folic Acid (essential every night) Vitamins: B1, B6, and B12 (under the tongue at bedtime).
Also during the day, I make a green smoothie drink, mixed with fresh fruits (you may use the fruits that you like) and I take natural supplements as Lysine, Proline, Pumpkin seed oil and Saw Palmetto, all in a tablet or pill form with my smoothie. For persons having
‘ankle ulcer’ challenges, in addition to the above, you need to take daily Daflon and antibiotics.
2. - Rest and Exercise - In addition to your regular nightly sleep, try to get an hour or 2 rest sometime during the day. Do not over exert yourself working too hard or playing any sports. Do some LIGHT exercises in moderation. If possible, try to get up to 12 hours sleep on Saturdays and Sundays, (if you can) it will help you to have a better week ahead.
Deep breathing exercises are very helpful, especially if you feel like a crisis is coming on. Where possible go outdoors or to a window to get fresh air. Breath in as deep as you can filling your lungs - like a balloon - hold in for 7 to 10 seconds then let all out. Repeat this breathing exercise 7 t0 10 times, you will feel the difference. Try to do it nightly or daily.
3. - Nutrition - Eat lots of green (foliage) veggies. Remember, the food on your plate should look like a rainbow. Eat some ‘red meats’ for protein to increase your blood count. They may taste good, but too many brown (fried) foods are not all that healthy diet. Stay Of The White Stuff... Limit your intake on ‘white’ foods: sugar, flour, milk, bread, potatoes, etc. Use honey instead of sugar. At least once per day, you can supplement your food nutrition diet by using a ‘Bullet’ blender to juice fruits and green veggies into a smoothie drink by adding ice.
You can also buy from GNC or any nutrition store, 'Kyo-green', ‘barley green’, ‘wheatgrass’ with protein powder mix in your ‘drinks’ to help boost your immune system. You can also take your supplements with your mixed drinks. Definitely, no drinking alcohol and no smoking... alcohol dehydrates your body and smoking impedes oxygen intake.
4. - Hydration - Drink lots of 'room temperature' water. Also, you can go to Youtube.com to learn how to make your own alkaline water, this is better than plain water. Always keep a water bottle with you. Icy cold drinks, milkshak and ice cream is a No, No during winter. Use NO sugar in your drinks, it will increase the chance of ‘sickling’ - use honey instead to sweeten drinks or cereals. I use natural coconut water to sweeten my drinks. No sugary drinks (as in juices and sodas). Some juices have a lot of sugar, just like sodas, read the labels.
5. - Dress Attire - Always dress warm, especially if you work in an air-conditioned place, waiting for a doctor or at the ER. While attending long church meeting or attending indoor sports events, even during summer dress warm due to the air condition. During the winter season, DO NOT attend any 'long' outdoor events, as a game, or parades as cold
weather is a primary reason for bringing on an SC crisis. If you go to the beach or to a swimming pool, take an additional set of (dry) clothing to change when you are finished being in the water.
6 - Travelling - Travelling generally can be very stressful for persons with SCD disease. But more so, there are things you should be aware of. Firstly, when it comes to travel by a jet -planes, as their flying high depletes your oxygen supply. On a long flight, tell the stewardess of you health condition. You may want to travel with a portable oxygen bottle.
Secondly, waiting a long time inair-conditioned airports is not good for persons with SCD, and special efforts must be made to be well hydrated and to keep warm. Use a blanket. if you must, most airlines have blankets. If your legs become numb (sleepy) and stiff on a very long flight, get up and walk up and down the aisle to help your blood circulation.
Thirdly, after taking a flight, first get somewell-deserved rest before you do anything. This combination - while travellingby air - of ‘waiting long in airports and flying too long’ is not
conducive to persons with SCD. Finally, it is important, if you can at all cost, high altitude flights longer than 2 hours should be avoided... travel by bus, trains or ships should be an option if possible.These ‘activities’ outlined above, combined will bring on an SC crisis.
7 - Relax and Meditate - Stress is a major contributor to bringing on an SCcrisis. Try to relax more often, and meditate before bedtime. Learn to listen to nice soothing and relaxing music. For example Christian contemporary, classical music or the ‘slow dance’ stuff, music to make you relax. I listen to Christian contemporary for an hour before bedtime. As noted above, rest on weekends. Practice the psychological factor, the mentalability that puts one in the 'frame of mind to psychologically’imagine removing a painful limb from my body.
8. - Pain Management - As soon as you feel PAIN symptoms, IMMEDIATELY take
you pain medication with a hot drink... hot green-tea or a hot chocolate drink. If pain[s] is VERY bad, fill the tub with HOT water and submerge yourentire body below the hot water. (But do not burn yourself) Keeping a ‘bath salts’ handy is also good, I use Epsom Salts. Stay submerged in the hot water bath until it becomes lukewarm. Use the shower in
place of a tub.
Secondly, after your hot bath, use a pain ointment rub (not Heat it burns) and rub all the 'hurting body parts' - I use Tiger Balm ointment - wrap in a warm blanket and get in bed and sweat it out. As SC in a limb (arm or leg) feels much like a ‘bad sprain’, I
recommend that you can bandage the ‘hurting limb’ in the same way, as it too helps. You must take your supplement and vitamins are keys factor in pain prevention management. Seek medical attention as soon as you can, especially if yourpains continue to bother you.
CONCLUSION
Parents th small children MUST constantly monitor your SC child activities, they cannot be active in the same way as a ‘normal child’ and make sure they learn the follow the above routines dail Also, babies and very small children cannot talk or explain their case, so it is important to monitor the ‘yellowing’ ofeyes, hand palm, bottom of feet and in their urine. Form a good relationshiwith your child’s ‘pediatrician doctor’ and keep them informed.
For adults, adolescent older children, I offer that you try out the above regimen for 3 months. Follow it closely, I am almost certain, it will improve your health. Remember, I have done for over 6 decades, the focus should always be on PREVENTION and not the PAIN. Now I live in The Bahamas, where it is always warm, and as I get older, I am less 'physically' active.
DISCLAIMER
Finally, as I said in my introduction, each SCD patient is different. So, persons with SCD living in cold climates and you 'younger persons’ may or may not get the same results I do. This offering is NOT based on any medical data, but an expression of my personal experience in my managingmyself, as a person living with Sickle-cell disease for over 6 decades. This is NOT substituted for proper medical care by your
professional healthcare professional.
Written and Publish by Monte A. Pratt
Copyright2017
