I am back with a new life update on my experience living with Sickle Cell. It only took 5 months this time to experience a pain crisis worthy enough for an update, so here we go!

Unlike last year, this year I had a good start to the year, I was healthy! Work was good, my social life was good and my partner and I had recently decided to make a huge transition in our lives. We decided to move from Uganda to Kenya, Kampala to Nairobi. We were both suffering from creative burnout. In a city where it is hard to find consistent, diverse inspiration to replenish your creative well, people often turn to the most common outlet for stress which is alcohol. Unfortunately, I was over-indulging in that as a coping mechanism. I was trying to get treatment for this; I knew that I had all the genetic factors that play a role in a person’s susceptibility to developing alcohol use disorder (AUD), so I was trying to get on top of this. I had started therapy and was trying my best to be consistent with the sessions. But still, I would go a couple of weeks sober. Eventually I would relapse, and when I did relapse, it was like I was catching up for all the weeks I was sober. This was putting a huge amount of stress on me mentally and physically and in turn that was putting a huge deal of stress on my partner and our relationship.

During the last weekend in April my brother was expecting MY nephews, two little baby bundles of joy that will be a part of my life forever. So we got the news that the twins were born on the 30th of April. I had been on a bender the previous 3 nights, from Wednesday to Saturday and on Saturday was a cousins birthday where I was drinking like it was my birthday we were celebrating. The next day, the 30th, my Uncle and I fly to Nairobi and it’s celebration mode the whole day. The whole family was excited, happy, proud. Alcohol was flowing, it was a good day/night.

I wake up early Monday morning, my usual time, everything is okay. No hangover surprisingly. I open up my laptop and start watching Suits on Netflix, I’m just lazying about for about an hour. Then I start feeling a sharp pain.

Okay, this is where I give you a disclaimer, it’s about to get a little intimate and weird. This is the part where the first complication sends me to hospital for 33 days.

SO, I’m watching Suits when I start feeling this sharp pain, priapism. Which is not uncommon among male Sickle Cell Warriors. For those that don’t know what priapism is, let me enlighten you. Priapism is a condition characterized by a prolonged and often painful erection. It can occur in Warriors due to the effects of sickle-shaped red blood cells blocking the blood vessels in the penis. In SCD, the abnormal hemoglobin molecules can cause red blood cells to become rigid and form a sickle shape. These sickle cells can obstruct the blood flow within the penis, leading to a painful and prolonged erection. Priapism episodes in SCD can be triggered by various factors, such as dehydration, infections, certain medications, and of course alcohol or drug use.

I have had frequent episodes of ischemic priapism over the past 5 years so I thought it was no big deal, I’d be good in thirty mins to an hour like I usually am. I usually just take a hot shower, pop some pain meds and chill. But this wasn’t the case this time, one hour became 4 hours with the pain increasing exponentially. At about 4 hours ischemic priapism is considered a medical emergency and requires immediate attention. But my dumbass was in pain but still hopeful for another two hours till the pain became so unbearable I was literally throwing up. I awkwardly tell my dad that we need to get to a hospital ASAP. Any longer and you may never have any more grandkids, dad.

And here begins the 33 day medical mind fuck of an admission that left Doctors completely dumbfounded.

I’m rushed into the ER, this pain has me shaking and hyperventilating so they give me a shot of pethidine to calm me down and ease the pain. Unfortunately on this day of all fucking days is a public holiday and none of the urologists are on duty. They tell me there is one nearby. They managed to contact her and she will be in, within an hour. The Nurses and Dr on duty rush me to a private room, and start prepping me for the procedure they are about to do. This is now 7 hours into the priapism episode and as I listen to them I am just thinking “great, I’m not gonna have a … after all this. Why did I wait so long? Because I was embarrassed?” 45 mins later the Dr arrives, assesses the situation and tells me she is going to need to aspirate my penis.

Again please bear with me as I describe what the procedure entails. Aspiration involves using a needle and syringe to drain blood from the … They first numbed my … with local anesthesia and then began draining blood. I asked to be put to sleep but they didn’t think it was necessary so this whole time I am watching syringe after syringe being stuck into my … and blood being drained out. God I wish I was asleep because I watched them drain 450ml of blood from my … That is so much fucking blood, it’s almost a 500ml bottle of water, I literally couldn’t believe my eyes and the urologist couldn’t believe her eyes either because after draining all that it didn’t help. I still had a semi.

So she says we have to move onto the next method of treatment, she has to do a shunt procedure. This time I would be completely out and it would be done in theatre. ‘Fuck my life, I would not even know what’s happening, I will go to sleep and wake up what feels like minutes later and hope all is well.’ For those that don’t know, shunting involves creating a surgical connection (shunt) between the blood vessels in the penis to allow blood to bypass the blocked or congested area. This is now the 10th hour of this problem. The procedure is done, I wake up, everything is bandaged up and hurts like hell, I’m admitted into the hospital and I’m evaluated over the next 3 days by the urologist to see how the healing process is coming along. The surgery was done Monday night. On Thursday she comes back to evaluate the healing progress and she says, “Don I’m sorry to tell you but we have to do it again, somehow you still have blood in there and you’re not completely flaccid.” ‘Hooly shit’ is the first thought that goes through my mind, it’s over for my…’ So the surgery is done again, same outcome.

That night I wake up in pain and my whole bed is soaked in blood. I had an episode of priapism again at some point in the night and with the holes from the shunt procedure I had bled a loooot. So the nurses call my primary Dr who comes in immediately, this is like 2:30am and she says since I have lost a lot of blood from the two surgeries and this latest bloody priapism episode I need a blood transfusion. In the morning I get a blood transfusion and my body completely rejects the blood, I have an Acute Hemolytic Transfusion Reaction. This happens when incompatible blood is transfused, leading to the destruction of red blood cells by the recipient’s immune system. Now my pain goes from like a 5 to an 11 out of 10 on the pain scale. I’m in pain from the base of my head all the way down my spine and all my joints. I’m writhing in pain, the nurses don’t know what to do, they had given me so much morphine but it wasn’t working so my primary Dr comes in, reacts fast and tells the nurses to give me a large dose of pethidine and transfer me to the HDU ( high-dependency unit) immediately!

I am rushed to the HDU and hooked up onto a continuous morphine infusion that runs 24/7. Finally I can get some sleep, the pain had me drained. The pain is under control now but the priapism is still an issue, this is now like 7 days into my admission. They call in a hematologist to work with my urologist to come up with a plan to sort out this problem. They suggest a blood exchange. The blood exchange was performed to reduce the percentage of sickle cells in circulation. By removing and replacing a significant portion of the my sickled red blood cells with healthy red blood cells from a donor, the procedure was supposed to help to alleviate symptoms and improve oxygen delivery to tissues. Well, it helped with the priapism. But once again I reacted horribly to the blood exchange. Since it involved a huge amount of blood, about half my blood was exchanged for the donors’ blood, my reaction was out of this world. I was in so much pain that for the first time in my life I passed the fuck out, my brain and body just could not handle and process the pain. When I woke up I was on a ketamine and fentanyl infusion pump. I had to be sedated with ketamine and provided rapid pain relief with fentanyl.

I have to be honest here, I can see why people get addicted to fentanyl on the streets. I was hallucinating like shit, my pain was so intense I couldn’t be taken off the fentanyl just yet but I was hallucinating my ass off, that I had to be cuffed to the bed. The hallucinations were so vivid and would last for hourssss. At one point I thought I was dying, I thought the hospital was filling up with a gas so dense it was crushing me, making it hard to breathe, so I ripped out my IV’s and tried to leave the HDU and this is why both hands and one leg were cuffed to the bed. I woke up the next morning with a vague recollection of what had happened but my nurse filled me in on everything that happened over the previous 16hrs I was tripping. I had so many trips I’m not going to write about them because that is not what this post is about.

After I was back to my normal self and the pain was better managed, I was transferred out of the HDU and into a private room. The Drs could now get back to treating me. My hemoglobin level was low and I was still hemolytic, I was breaking down and reacting to all the blood they were transfusing me with. This is where it got dire and had Drs really worried. Since I have had so many blood transfusions in my life, I have developed so many antibodies. Whenever I would get a transfusion, my immune system would react by breaking down the blood and fighting it like an infection. So basically all blood from the same blood group as me, O+, was no good. Every transfusion reacted with the donor’s blood cells, so when I was transfused that would cause a pain crisis. This is when the Drs decided we should try transfusing with O- blood. With that decision came another problem, O- blood is rare, and for me the chances of finding the right O- blood without the antibodies I would react to was about 5 in a 100 chance. This is when we decided to put out a call for donors. Till today, I’m so touched by the responses we got. From friends and strangers, turning up in droves to help save my life. We must have had close to 50 people respond to our call. Those 50 units of blood greatly increased the chances of me getting a match. It still took about 2 weeks get enough units to transfuse me though, with no reaction, and with all the transfusions my hemoglobin shot to a record high of 10.8. Yes it’s extremely low for you regular folk, but for someone with SCD, it’s pretty damn high.

Somewhere along the way, I had got a blood infection too, we never discovered where it came from, but it was a complication that made everything that much more…complicated. The SCD pain was under control for the most part, the hemolytic anemia was being handled by vigorous cross matching of any blood I was receiving, the final frontier was the infection. Luckily it wasn’t too hard to treat, they had me on a broad spectrum iv antibacterial medicine and anti fungal medicine.

After 33 days of intense pain and suffering I finally felt like my self again. I had beaten Sickle Cell Disease with painful + sequential crisis, cholelithiasis, sepsis and hemolytic anemia and 2 surgeries.

And I fucking won!

I’d like to thank all the friends that came through, family and strangers that showed up to the call to literally save my life. I cannot show any of you how much you mean to me and I can’t be grateful enough!