Methadone & Morphine in SCD Pain Management

For nearly ten years now, the doctor's at my pain clinic have prescribed methadone and morphine to manage my pain. Both of these are controlled substances and are powerful pain killers. I know a lot of people are afraid of taking these medications. Drowsiness, nausea, constipation, and risk of addiction are some of their concerns.

For me, as long as I eat something when I take them, nausea isn't a problem. Because I've been on them so long, drowsiness also isn't an issue. Constipation, however, is an problem. If I don't take a laxative called senna every day, I will be constipated in no time. As for addiction, this is a risk with any prescription pain killer. To prevent addiction, one must be disciplined.

My prescriptions allow me to take 1-2 tablets of methadone every four hours, and 1-2 tablets of morphine every six hours. To prevent addiction and building up tolerance to these medications, I always ask myself the following questions BEFORE I take them:

1. Can I use meditation to reduce my pain? 
2. Do I really need to take these now, or can I wait another half your? or hour? or longer?
3. Do I need to take two tablets, or will one be enough? or maybe half?

By asking myself these questions, and through daily meditation, I have been able to avoid addiction and building up a tolerance to my pain killers. My doctors marvel that I've been so stable for so long with my medications. I know the reason is because I ask myself the above questions every single time I go to take my pain medication.

For me, these medications do what they are suppose to do, they manage my pain. 95% of the time, they do not cause nausea or drowsiness; I don't get any kind of buzz or high from them; and they don't cause me to zone out in any way. They simply reduce my pain. While on them I am able to drive, think, and behave normally. However, on occasion, because of increased pain and dosages, my pain killers do cause me to become drowsy and/or mentally cloudy. When this happens, I NEVER operate a vehicle.

Although my pain medications provide pain relief on a daily basis, there are negative side affects which I experience in varying degrees. For me, the biggest drawback is how it impacts me spiritually. Faith and spirituality are a huge part of my life. I often feel as though the combination of my pain and pain medication dull my spiritual sensitivity. It's hard to put into words exactly, but I constantly struggle to counter-balance my spirituality against the effects of my pain and medications.

I will also admit that the effects of my pain killers dulls my intellect in almost imperceptible ways. Sometimes I feel that my memory isn't where it should be; my thought processes aren't as quick as they could be; and my intellectual capacity isn't where I would like it to be. Whether this is a result of Sickle Cell Disease affecting my brain, a consequence of the medications, or a combination of both, I don't know. I personally feel it is a combination of both. Lets be honest, how can these drugs not have negative effects on the brain? And since sickle cells don't carry oxygen the way they should, how can that not affect brain function?

My purpose in writing this post to help inform anyone who is considering taking methadone and or morphine to manage their chronic pain. All I can do is share my experiences with these medications. The problem is, prescription pain killers and the pain from Sickle Cell Disease affects everybody differently. What works for one person may not work for another. For me, these pain medications work and allow me to function "normally" 95% of the time.

Anybody taking prescription pain killers should know, if you take them daily, your body will develop a dependence on them. Dependence is very different than addiction. For example, I once ran out of my pain medication; and because it was a holiday weekend, the pharmacy couldn't fill my prescription until Tuesday. After about twenty-four hours without my medication, my body began going through withdrawals. It wasn't a pleasant experience and I wound up having to go to the hospital. So, with regular use, physical dependence is unavoidable; addiction, however, IS avoidable with careful and responsible use.

"Vein Finder," a Blessing for Sickle Cell

There is a wonderful piece of technology out there called a Vein Finder (though there are other like products with different names that do the same thing). It’s a device phlebotomists use to help them...wait for it...FIND OUR VEINS!

Like most Sickle Cell patients, nearly all my veins are used up. I have only a few areas in my hands where an IV can be put in; and when I’m receiving blood, it’s even more difficult to find a large enough vein for the blood.

During my 2015 hospitalization, the first vein used to receive two units of blood, worked just fine. But when it was time to give me a third unit, my vein went bad five minutes into the transfusion. So the third bag of blood was hanging there with an invisible ticking clock next to it. As I’m sure you know, the blood has to be used within a certain period of time before it goes bad.

So, frantic to get this last unit of blood in me before it’s too late, one nurse tried unsuccessfully to put a new IV in me. Looking all over for another spot, she called for another nurse, and another. Thankfully they hadn’t yet stuck me a second time, but were frustrated in their failed efforts to find a proper sized vein. Finally, one of them asked, “Where’s the Vein Finder?”

“What’s a Vein Finder,” I asked.

“I know where it is,” another nurse replied. “I’ll run and get it.”

Having no idea what they were talking about, I watched and listened with confusioned intrigue. A little bit latter the nurse hastily returned with this wheeled pole that had an articulating arm on it with a square device on the end of the arm.

“So what is this thing?” I asked.

“It’s awesome,” my nurse replied enthusiastically. “Just watch.”

So they plugged in the “Vein Finder”, wheeled it beside my bed, adjusted the arm, and angled the device over my hand—where the last of my good veins are located. They then flipped on the device, which projected a rectangular green—laser-like—light onto my hand. Then, like some kind of futuristic holographic map, every twist and turn of every vein, artery and capillary in my hand was instantly revealed. 

Within seconds, all the nurses simultaneously exclaimed, “There it is!” and pointed to the perfect vein. There mine as well have been a green neon arrow pointing to my vein with a sign, “Stick Needle Here!”

Without any effort, delay or mishap, the nurse was able to put the right sized IV in my vein. Within minutes, my third unit of blood was flowing smoothly into my hand. It was like magic. I’ve never been so happy to receive an IV. It was/is an amazing piece of technology that kept me from being needlessly stuck over and over and over again in search of the ever elusive “perfect vein.”

I don’t know how widely available these devices are. During my most recent hospitalization—when the nurse was having problems finding a vein on me—I asked if a Vein Finder was available; much to my sorrow, there wasn’t. Hopefully the day will come when every phlebotomist, ER, and hospital nurses’ station will have these wonderfully magical devices at the ready.

I feel bad it’s taken me so long to write about this experience. Every person who is frequently hospitalized needs to be informed about this device. If I could afford to buy a portable Vein Finder, I would take it with me to every doctor’s appointment and ER visit. Since that option is available to very few people, at least we can be armed with the knowledge of its existence. I hope this helps. 

The image below was taken off the internet. What is shown is very similar to what my hand looked like when the Vein Finder was used on me. Except, my veins aren't even close to being as straight as this person's.

Sickle Cell: Bone Marrow Biopsy

About a month ago I was hospitalized with a hemoglobin level of 4.2. I was admitted for four days and given two units of blood. They were watching to see what my hemoglobin was going to do; they were concerned about my bone marrow not producing enough red blood cells to keep up.

My hematologist ordered a bone marrow biopsy, which I had done yesterday. I was pretty anxious about the procedure. I had mine done as out patient. I went in for a blood test at 9:00am then checked in for the procedure that was scheduled for 11:00am. 

Normally they have you lay on your stomach, but with both my hips in the state they are in from severe avascular necrosis (AVN), I can’t lay flat like that; so they had me lay on the side that was most comfortable for me; which is my left side. They then began the procedure on my right hip, just above my buttocks. They administered a sedative and pain medicine through my IV before they began. Honestly, I wish they had given me the sedative an hour before, but oh well.

They then numbed the area with lidocaine, and also numbed the bone. That part wasn’t too bad. I felt the pressure of them working. They then told me they were going to extract the bone marrow and not to move. When the extracted the marrow, that HURT, a lot. And they had to do it twice. They gave me more pain medication and also took a sample of the bone, which I felt, but not as badly as the extraction; it was just uncomfortable. Not long after, they were all done. I think from the time they actually began the biopsy to the time they finished, it probably only took ten minutes or less. Preparing me for the procedure, the procedure, and then dressing the wound, in all it may have taken a half hour.

The pain from the extraction began to subside pretty quickly. They had me lay on my back with a towel behind me on the dressing to add pressure on the wound. They kept me for observation for about another half hour. I had a family member with me who drove me home. The drive home was painful because the lidocaine was wearing off and I felt every bump in the road. I live almost an hour away from my doctors and hospital, so it was a long painful ride home.

By the time I arrived home I was very tired. Between the sedative and pain meds they gave me, accompanied with the pain, I was pretty exhausted. Today, I’m still a little tired and a bit sore, but not too bad. I was instructed to keep the wound dry and clean for 24 hours. After 24 hours I could shower, but no baths for a few days. There is danger of infection; after all, they did dig into and remove part of the bone in my hip.

It will take 2 days to get some results of the test and two weeks to get other results. So I will see my doctor again in a couple weeks. Thankfully, when my hemoglobin was tested yesterday it was 8.6. So I’m praying that’s a good sign that my bone marrow is working as it should.

So I’m sharing my experience so others can know what to expect. I think a lot of my anxiety came because I didn’t know what to expect. I was told by the doctors performing the biopsy that most people don’t feel the pain I did from the extraction. The severe AVN of my hips probably contributed to the pain. I don’t know if I believe them. A few days before I had the biopsy, I watched one performed by a doctor on YouTube; which probably wasn’t the best idea. But the doctor in the video said the extraction is the part that “HURTS.” The doctor in the video was correct.

Though I don’t want to have to repeat the procedure anytime soon, I know what to expect next time; which hopefully will reduce my anxiety. If you, or someone you love, has to have a bone marrow biopsy, know the extraction of the marrow is the worst part. The upside is, the pain from the extraction begins to subside pretty quickly and the whole process doesn’t take that long. 

I am going to do my best to take up writing regular posts again. Until next time....