Hydration and Sickle Cell

Though I have spoken about this previously, I wanted to touch on it again. Drinking a gallon of water daily, or as close to it as you possibly can, plays a big role in preventing pain crises. Anyone who has ever tried to drink that much water every single day of their life knows it is not an easy challenge. From childrenhood, my parents (and doctor) instilled in me the importance of taking water with me everywhere I went. When a kid, this meant taking water to school. Sometimes that required special parent teacher conferences to get the necessary permission to take water to class.

As an adult, it has been a life long habit of always having water with me. Though I like to think I do a fairly good job of staying hydrated; I certainly have my spells when I know I am not drinking enough. For me, the winter is the hardest time of year. During the colder months--though I don't like ice in my water--I still find it hard to drink as much water as I should. If I allow a week to pass where my water intake is far below what it should be, I soon feel the affects. For me, cracked or dry lips and dark urine are tall tell signs that I'm not drinking enough water. If I continue to neglect my health in this way, I will often have headaches from dehydration. I would suggest not waiting until you manifest these symptoms; if you do, a pain crisis will be right around the corner. Just drink a little bit of water every hour.

If I find that I have gotten out of the habit of drinking the amount of water I know I need too, I may set a timer on my watch or phone. This helps me remember to drink half a glass of water every 30 minutes. Or I may set it to go off every hour, and drink a full 12 oz glass. 

I know some people have a hard time with the taste of water. Many people infuse their water with lemon juice, or other fruit to give it flavor. Water enhancers like Mio work for other people. I am a straight water with no ice person. Recently my family bought a water filtration system for our home, which has been wonderful. Before that, however, I used Zero Water filtration system. I previously used Britta water filters; but when I moved to a different area, I still found the water distasteful and discovered Zero Water worked better for my situation.

There are many ways to make water more desirable. Find something that works for your wants, needs and taste, and develop the self-discipline to keep yourself well hydrated on a daily basis. I promise, if you do, you will experience fewer pain crises and feel better.

Stay strong. Stay positive. Stay hydrated, and believe in the bright future that is yours.

Coconut Oil Helps Sickle Cell Avascular Necrosis

I have a brother who is big into natural remedies and herbal medicine. He's always trying to find things to help me. One of the many things I've tried that have actually helped is cocoonut oil.

Coconut oil can be:

• Used in cooking in place of vegtable oil;
• Used on the skin to help with dry skin;
• Used instead of butter on popcorn;
• and many other things I don't know about.

It can also be taken internally. One of the benefits is that it acts like a lubricant for the joints. So if you are having a great amount of joint pain (not Sicke Cell pain), it may help.

At the sugggestion of my brother, I began putting coconut oil in my morning oatmeal. My purpose in taking it was to help relieve some of the horrendous hip pain I'm always experiencing. Chuck, my brother, told me it would take about two weeks before I noticed a difference.

The avacular necrosis in my hips has put me in a wheelchair. Getting into and out of bed is very difficult. Two weeks after I began taking coconut oil, I noticed a HUGE difference. I was able to get in and out of bed more easily and the pain I daily felt from my hips was greatly reduced. Needless to say, I don't let a day go by without putting a tablespoon full of coconut oil in my oatmeal. My hips causes a lot of discomfort. Coconut oil certainly hasn't removed all of my hip pain, but it has significantly reduced it.

I know there are many Sickle Cell Warriors out there who suffer from avascular necrosis. Maybe coconut oil can help some of you as well.

Stay strong my fellow Warriors. Keep the faith. Stay close to God. Drink plenty of water. Eat well. Sleep well. Stay away from recreational drugs and alcohol. Avoid stress. Choose to be happy.

Until next time my friends.

Oxygen Use and Sickle Cell

Please forgive my failure to write a post in almost three weeks; I’ve been going through a lot emotionally. The post topic for today is the use of oxygen.

About thirteen years ago—I was twenty-seven at the time—I was awaking each morning having a pain crisis. They were mild crises and would dissipate after about thirty minutes to an hour. My doctor ordered a sleep study. It took a number of sleep studies to isolate the issue and find the right fix. I had sleep apnea.

Sleep apnea is a disorder that causes a person to stop breathing one or more times while sleeping. Pauses in breathing can last a few seconds or a few minutes and can happen dozens of times in an hour. The patient will sometimes start breathing again with a loud snort or choking sound. People who are overweight or have large tonsils are often more likely to suffer from this condition. Due to the constant interruption to their sleep patterns, sleep apnea sufferers will feel very tired during the day.

When I was diagnosed with sleep apnea, I was first given a CPAP (continuous positive airway pressure) device. A small mask covers the nose and mouth (affectionately called by my brother, “the Darth Vader mask”). A tube runs from the mask to a small machine. When worn properly, the CPAP machine uses mild pressure to keep the patient’s airway open; this prevents those pauses in breathing.

My brother uses a CPAP device and loves how it has improved his sleeping. For me, however, it did nothing to prevent the pain crises I was having each morning. After another sleep study, it was discovered that my oxygen level dropped to 70% while sleeping. Instead of a CPAP device, I began sleeping with oxygen at night. That corrected the problem.

For the past twelve or thirteen years, I have used an oxygen concentrator while I sleep. When you are in the hospital and wear an O2 mask or nasal cannula, you receive 100% pure oxygen. Using the air in the room, a concentrator removes the nitrogen and delivers 87%-95% oxygen to the user. When last tested, my machine was 98% comparable to 100% pure oxygen; so that’s really good.

Since I began sleeping with oxygen, I seldom wake up in crisis; though it does occasionally still happen. Thankfully, during waking hours, my O2 levels are normal and I don’t need to use oxygen. When I’m having a monsoon level pain crisis, I use oxygen during the day time. I have used it 24hrs a day for two or three days straight when I’m having a bad crisis. When having a severe crisis, I can instantly feel a difference when I put on the oxygen.

I personally feel every Sickle Cell patent needs to have oxygen available to them at home. Using oxygen when I sleep and having it available when in crisis has made a big difference in my life.

¶ Preparing to write this post, I typed “sleep apnea and sickle cell disease” into my search engine. I found numerous informative articles. Emerging data shows that Sickle Cell patients who suffer from sleep apnea are at higher risk for strokes and pain crises. Another article spoke of a 12-year-old patient who suffered from sleep apnea. However, when her tonsils were removed, she showed a dramatic decrease in the number of hospitalizations and pain crises. Having just learned this, I can’t help but wonder how I, as a child and teen, may have benefited from having my tonsils removed.

I think it worthwhile for parents and patients to research this subject and discuss it with their doctors.

Procrit and Sickle Cell

This week I wanted to talk about a medication that has REALLY made a difference in my life. Procrit (aka: Epoetin Alfa or Epogen) is a subcutaneous injection that I give myself three times a week.

I’ve been on Procrit for about five years now. For about a year or two prior to taking Procrit, my hemoglobin level hovered between 5.0 and 5.6. Needless to say, I was experiencing a high number of pain crises and a lot of fatigue. It really restricted my social activities.

Finally my hematologist suggested I try Procrit. Generally it’s given to patients who have cancer or issues with their kidneys Procrit stimulates your bone marrow to make more red blood cells. Obviously, more red blood cells means a higher hemoglobin level.

I don’t exactly recall how long it took, but it seems like within a few weeks my hemoglobin had gone from the five to eight. Obviously, I was physically feeling a whole lot better. I was having fewer crises and my stamina improved. Still today, thanks to Procrit, my hemoglobin ranges from 8.6 to 9.2.

Though Procrit has improved my health, there have been battles with the insurance companies. After a couple months, the insurance didn’t want to pay for it any more. Later I learned they had a good reason for that. A month supply cost around $1,000. Crazy, I know. My insurance said two things about Procrit: 1) That the medication had not raised my hemoglobin enough to keep paying for it; 2) Because no studies existed about how Procrit benefits Sickle Cell Disease, they would not pay for it.

I was beside myself with anger. On paper, the difference between 5.2 and 8.6 doesn’t seem like a lot, but it sure made a difference in how I felt.

To get around the insurance company’s red tape, my hematologist suggested that I go see my nephrologist (my kidney doctor). He hoped that since I do in fact have problems with my kidneys, that the insurance company might be more apt to pay for the prescription if it came from a kidney doctor.

So I played the “Out Whit the Insurance Company” game, and went and saw my kidney doctor. Sure enough, because of my kidney issues, and because my nephrologist wrote the prescription, I didn’t have any additional problems getting Procrit. In truth, my kidneys are doing pretty well—especially when I’m drinking the amount of water I should. The main reason I routinely see my nephrologist is so I can get Procrit paid for.

You might ask, “Since Procrit helps increase a patient’s red blood cell count, why aren’t there any studies done about how it helps Sickle Cell Anemia?” The answer is simple; “I don’t know.” That was five years ago. Hopefully there have been studies done since then.

As I’ve said many times before, “the only thing predictable about Sickle Cell is that it’s unpredictable.” Nearly three years ago, even though I was taking Procrit, my hemoglobin dropped to four. Eventually I had to be admitted and get a blood transfusion. Once I received a transfusion, my hemoglobin stabilized. So, even though Procrit has helped improve my red blood cell count, things are still going to happen.

Clearly, my purpose in writing about this is to help my readers. Ask your doctors about Procrit. Perhaps, in addition to doing all thing right things to take care of your self, Procrit can improve your health as it has mine.

Until next time...

Green Salads and Sickle Cell

In addition to having lost a lot of weight, I haven’t felt very well physically. I’ve felt exceptionally tired, had zero energy, I’ve been mentally cloudy, and have generally felt listless. To put it simply, I’ve felt like a zombie for many months.

Talking with my nutty nutritionally obsessed brother—I love you Chuck—he suggested a few things. Actually, he suggested about 10,000 things; but I was able to absorb only some of the tidal wave of information he gave me.

He told me to eat a salad every single day. In the salad he told me to put: kale, bok choy, spinach, and Romaine lettuce; basically any kind of green leafy lettuce. So for the past week, that’s what I’ve been doing. I mix all those together, add an entire avocado, crotons, bacon bits, tomatoes, cucumbers and some salad dressing. Sometimes I make a smoothie instead—I’ve found tons of recipes online.

Within three days I began noticing a difference in how I felt. A week of doing it, I felt AMAZINGLY better. I felt alert, energetic, and more mentally clear than I have in a long time. Sunday and Tuesday of this week I failed to eat my daily salad. With each day I began to feel more tired than I did the day before. When I began eating my salads again, surprise, I began to feel better again.

I’m trying to put forth the effort educate myself about nutrition. Doing just the little bit that I have has really had a positive difference in how I physically and mentally feel. I can’t help but wonder...if eating a salad and avocado a day can make the HUGE difference that I’ve experienced, what can more significant changes do for me?

I’ve always knows eating balanced meals has impacted my health. But beyond that, I never really thought much about nutrition. But I am now. And if you haven’t, perhaps you should.

Sicke Cell: Gaining Weight with Avocados

Over the past two years, I have gone from weighing 125lbs to 99lbs. In my post, Sold on Ensure, I spoke about how drinking this product twice a day had helped me put on three pounds. After about two weeks, I stopped drinking Ensure because I noticed my ankles were swelling. The product has moderate levels of potassium in it, and potassium is something I have to be very careful with. When I stopped drinking Ensure, the swelling went away. So until I talk with my doctor about how much Ensure is safe for me to drink, I’m holding off on adding it to my diet.

When I stopped drinking Ensure, I lost the weight I had gained and dropped down to 99lbs. Clearly this isn’t good. I’m very concerned about my weight loss. Talking with my brother, who is BIG into nutrition, he told me to eat 2-3 avocados every single day.

Avocados are a high calorie natural food. People trying to loose weight often eat nothing but avocados. So I gave it shot. For about three weeks now, in addition to my three meals a day and snacks in between, I’ve been eating one to two avocados each day. The other day I stepped on the scale and was amazed to see that I had put on eight pounds! Wahoo!

In the afternoon and/or evening, I will cut an avocado in half, sprinkle a little salt and pepper on each half, and scoop out a spoonful at a time and eat it. I use them as a snack, not a meal; or I will eat one with my meal; or I will make a salad and cut the avocado into chunks and put it on my salad (yes, the entire avocado; pit and peel excluded).

Hopefully I will keep gaining weight as I continue to do this. So if you or your child has a problem gaining weight, a problem not entirely unique to Sickle Cell patients, I would suggest try adding avocados to your diet.

Being Thin with Sickle Cell

All my life I have been very thin and small framed. When I was sixteen years old I was 5ft. 2in. tall and weighed all of 70lbs. I stopped growing around age twenty-one at 5ft 10in. and finally broke one hundred pounds in my mid-twenties. At the age of thirty-one, I weighed more than I ever had, 130lbs. I leveled out at 125lbs and stayed there until I was hospitalized in 2011.

During my 2011 hospitalization, I lost nearly fifteen pounds. Over the following two years, I lost another eleven pounds, putting my weight at 99lbs! That’s how much I weighed a month ago. Needless to say, I have been very concerned about my weight.

As a child, though my mom was/is a great cook, though I ate like a horse and ate healthy, nothing my mom tried would help me put on the pounds. I don’t know how many nutritionists lectured my mom during my plethora of hospital stays. They thought she wasn’t feeding me correctly. Though my mom did her best to inform them she knew all about nutrition and feed me well, she held her tongue and didn’t chew them out. In adulthood, I had the opportunity to vindicate my dear sweet mom.

I was about twenty-five years old. I was hospitalized for something or another. During my hospitalization, a nutritionist made an appearance in my room. Apparently I was in the wrong mood. She plopped herself down in the chair beside my bed and immediately began lecturing me about my weight.
“Let me stop you there,” I said. “My whole life my mom and I have had to endure you nutritionist coming in and lecturing me about nutrition. I know how to eat healthy and I eat very healthy meals. I am naturally thin. I don’t need you to come in here and lecture me when you don’t know anything about how I eat. So why don’t you leave and don’t ever come back.”

Needless to say, she left without a word. And though I’ve been hospitalized a few times since then, I’ve never had another nutritionist come into my room and bother me. There’s probably some red flag in my medical file that says, “Whatever you do, don’t send a nutritionist into this patient’s room!”

When I told my mom about the incident, she later told me, “I have to admit, I felt a little vindicated. I wanted to do that so many times when you were a kid.” Normally, I’m a very nice and polite patient. I’ve learned from too many hospitalizations...sometimes you just have to be not so polite.

For me, weight has always been a struggle. If/when I catch a flu or am hospitalized, the pounds have always flown off and been very slow coming back. It has never mattered what I ate or how much I ate, I couldn’t gain weight. Being lactose intolerant, missing a gallbladder (making it hard to eat fatty foods), and having to watch my intake of potassium and sodium, it’s hard to find foods I can eat.

Ensure and Sickle Cell

The past two years have been the hardest of my life, medically speaking. I’ve dealt with one issue after another. Over the past two years, I’ve dropped from 125lbs to 100lbs. Depression has certainly played a roll in my weight loss. Having a desire to eat, and craving any kind of food, has been a big challenge. The past year, I’ve been eating only because I knew I had to, not because I was hungry or wanted to eat.

Preparing to have two hip surgeries in the near future, weighing only a hundred pounds seriously concerns me. So I began looking online for something I could eat or drink to help put some weight on. One of the products I came upon and have been using is, “Ensure.”

Ensure is a nutritional drink. Hospitals often provide it to help supplement a nutritional diet; if you can call hospital food nutritional; or food for that matter. Ensure is often given to senior citizens; by that I mean, sick old people. That idea might discourage you from wanting to drink it; but it shouldn't, Ensure is a great product.

If you follow the Ensure link provided, you can see they offer six different drinks. Some focus on improving muscle health, nutrition, or weight gain. Wanting to get as many extra calories in me as possible, I began drinking Ensure Plus about seven days ago. Ensure Plus has 350 calories. I’ve been drinking it twice a day.

Two days after I began drinking it, I noticed a significant improvement in how I felt. I had more energy, I felt more alert, and most importantly, I started to have an actual appetite. In addition to the extra calories, Ensure provides twenty-four vitamins and minerals.

I think, because I hadn’t been eating as I should, that I may have been malnourished a bit. Since Ensure is helping me to get nutritionally balanced, and is providing extra calories, I’ve felt like eating and have been willing to do so rather than forcing myself to eat. Though it’s only been seven days since I began drinking Ensure, I have already put on two pounds. Not to mention the fact that I feel SO MUCH better.

Many people with Sickle Cell struggle with their weight. For anybody who has problems putting on the pounds—a problem most people would kill for—I highly recommend drinking Ensure. It comes in different flavors. I prefer chocolate; not that I’m prejudice against vanilla, I just prefer chocolate. I’m talking about food, of course.

Hopefully, by drinking it each day, I can continue putting some weight back on. I am totally, sold on Ensure.