Tag Archive | diseases

Sickle Cell Disease Crisis In The Hospital Video/Vlog

Hey Readers! I just uploaded another video for you all on my YouTube page. Check it out and let me know what you think. Don’t forget to subscribe, like, and comment!! This video wasn’t all that long; I just wanted to let y’all know what’s going on with me while it’s happening, not months later. Let’s get Sickle Cell Disease awareness out there people!

Advertisements

The Crazy (at times scary) Last Four Months of My Life!!

Hey Readers! Well, first let me say thank you to everyone that read my last blog, and followed the link in it to my YouTube video. As I said in my last blog, that was my first of hopefully many videos about Sickle Cell Disease. I was VERY hesitant about putting myself out there in such a personal way for everyone to see, but ultimately I’m happy I decided to go through with it. I will definitely be doing more in the near future. I feel there isn’t a big enough spotlight on Sickle Cell Disease, so who better to advocate about this disease than someone living with it? Anyway, this blog is about what’s been going on with me these past few months. I haven’t been writing blogs lately because I’ve been extremely sick. I’m use to having my regular Sickle Cell pains, but it was completely different this time. It all started about four months ago, I started feeling really bad. It was nothing like the regular pain I get, I just felt real lousy for some reason; I thought maybe I had the flu or something because my throat was really sore, and I felt extremely weak. But one day I was in bed still feeling bad, when (out of nowhere it seems) I started hurting. When that happened my family told me I needed to just go to the hospital; it’s a good thing they did too. When we got to the ER, they took me to the back right away, when the Doctor came he literally took one look at me and told my dad he was going to admit me into the hospital. That has never happened to me before, they usually do blood work and give me pain meds before they decide to admit me. But when the nurse came in to setup the I.V. and stuff, she looked at me and said “oh yeah, I can tell you in pain and dehydrated”. Turns out, the whites of my eyes were completely yellow, meaning I was extremely dehydrated; I didn’t even know until her and my dad pointed it out (I’ll put a picture in of it so you all can see). Even with my eyes like that we still just thought I was having a regular Sickle Cell Crisis. So, they admit me and have me on a lot of I.V. fluid and my regular pain meds. But I still felt terrible, and my mouth was completely dry, I literally had no saliva in my mouth, I couldn’t even swallow without drinking water first, it was that bad. So of course feeling the way I was feeling, the thought of eating wasn’t even on my mind; and of course that’s no good. A few days later the Doctors came, and told me I had a very serious infection, which is why I was feeling so terrible. I didn’t realize just how serious it was until, a Cardiologist came and said they had to perform surgery to see if the infection had spread to my heart, and if it had I would need a new heart valve. The next morning they performed the procedure, and thank God, the infection hadn’t spread to my heart. But, unfortunately, my kidneys hadn’t faired as well. A Specialist came and told me I may have Kidney Failure, so they did some test and thankfully they weren’t failing; but he said I was extremely malnourished and it was affecting my kidneys. So, they had a Dietician come and put me on a protein drink, because I wasn’t eating right. So I’m thinking okay cool, give me the I.V. antibiotics, the meds, the protein drinks and breathing treatments (I also wasn’t breathing too good) and I’ll be okay….nope. It turns out they had never seen an infection like mine (they didn’t even have a name for it!) so the antibiotics weren’t working. They kept changing them to see what helped. Then, like I’m not already going through enough, an Infectious Disease Doctor came and told me they need to do some test to see if the infection was in my port (that’s the device they placed in my chest under the skin to access for I.V.’s and to draw blood). So, they do some blood work, and of course the test came back positive, it had spread to my port; so the Doctor said it had to be removed. I outright refused the first few days, he came back every single day asking me if I would allow them to remove it, and I kept saying no. Now, let me explain: my port is a vital part of being able to deal with Sickle Cell. When I have to go to the hospital, instead of them sticking me with a needle literally all over my body trying to find a vein (including in my neck), they just access the port. It makes a HUGE difference in my life; and mind you, the same Doctor told me I needed my port removed like two years ago, and when they removed it the port wasn’t even infected! So this time around me and my family are super hesitant. Even my Hematologist didn’t think I should. But that all changed one day when I started running a high fever; I felt terrible and was in and out of it that whole day. The Doctor came, and told me I was risking my life and could die, then my Hematologist came and basically told me I was going to have my port removed first thing in the morning. So when my Hematologist whom I’ve known for years now, and trust looked worried and insisted on an emergency surgery for the very next day, I knew it needed to be done. So, the next morning they tried to place a regular I.V., which absolutely was not happening, so they had to put a pick-line in my arm right before the surgery in order to give me anesthesia. The surgery went fine, they removed the port and this time the infection had spread to the port so it was all for the best. My fever went down after that, but they still didn’t know exactly how to treat the infection. So, I was in the hospital for a whole month dealing with all of this and my regular Sickle Cell pain. At this point, everyone including the Doctors are trying to figure out how I can get out of this hospital. They kept trying different antibiotics and the Infectious Disease Doctor told me one day, that he was trying to get me approved for this new drug, that hadn’t even been approved yet by the FDA (just an idea of how serious this infection was); but until then, they were going to release me from the hospital as an outpatient. I was just happy to be leaving the hospital so I would have agreed to anything! So they release me from the hospital a few days later, on two I.V. antibiotics I would have to administer to myself five (yes five) times a day and one antibiotic pill I had to take twice daily, for twenty-one days. A nurse came the first day to show me how to do everything, but it was real simple for me because I went to school for Medical Assisting. The problem wasn’t doing it, it was how often I had to do it. I literally didn’t get a full night of sleep during the whole time because every four hours or so, one of the antibiotics had to be administered. I started getting confused with simple things and forgetful; when I had a little over a week left of the antibiotics I started feeling a pain in my arm where the pick-line was. I told, the nurse about the pain, and that the I.V. wasn’t running as fast as it should have been. She told me I needed to go to the ER right away, I absolutely did not want to but when I told my parents what she said they made me go. I guess it’s a good thing they did, because they did an Ultrasound and found a blood clot about the size of a quarter in my arm. Thankfully it wasn’t in the pick-line itself, so they didn’t have to remove it, I still needed the antibiotics so that would have been bad. The Doctor told me I had to be admitted into the hospital, y’all don’t know how mad I was about that; I was just so fed up with EVERYTHING all I could do was cry. It felt, like everything bad that could happen to me was happening, NONSTOP! I was just so overwhelmed and tired and just physically, mentally, spiritually drained. I’m pretty sure I cried myself to sleep that night in the hospital. But, it’s weird because the next day I felt so much better. I told my mom, I got the best night of sleep because I didn’t have to wake up constantly to do the antibiotics, the nurses did that. I think my lack of sleep took a big toll on me, so being admitted into the hospital turned out to be a blessing in disguise. I stayed in the hospital for about a week I believe (I’m not sure). At the end, the Infectious Disease Doctor came and told me I had to stay on the antibiotics for another week. So, I go home and all is well until one day when I’m in the room with my mom making jewelry; I all of a sudden start hurting everywhere. I take my pain meds and try to wait it out that night to see if it’ll stop. No such luck, it gets worse, so bad to where my dad had to call an ambulance because I couldn’t even walk. Of course they admitted me (once again). This crisis was real bad, the first few days I couldn’t even walk. Thank God for my dad; he was the one that helped me to the little potty thing I had beside the bed, and I’m 5’10 so that was no easy task. He even came early in the mornings (like 5:30am early). After the first week I was able to get up on my own, then walk all the way to the bathroom. There was one good thing to come out of this, though… The Infectious Disease Doctor came, and told me when I was released I wouldn’t have to go home on antibiotics, the tests came back negative for any signs of the infection!!!!! THANK GOD! I was so happy, I literally starting singing when I told my dad what the Doctor said, nurse in the room and all, lol. In the end, I stayed in the hospital for two weeks. I’ve been out now for a little over two weeks, and couldn’t be happier to finally be off all of those antibiotics. The only thing I have to take constantly is the pill for my blood clot; I’ll have to be on that for three months, but at least it’s just once a day. Now I’m just worried about not having my port, they took the pick-line out when I was released from the hospital, so now if I go into a crisis I’ll have to be stuck over and over again… not looking forward to that at all. At least now that the infection is gone, I can have the port put back in sometime, soon hopefully. So, there you have it! My crazy, at times very scary, journey over the last four or so months. Now do you see why its taken me so long to write a blog?? Well, thanks for reading you guys, I really appreciate it; let me know what you think about all the craziness of my life living with Sickle Cell Disease, in the comments below; and share if you like!! Later Readers!

IMG_4515IMG_4512IMG_4568IMG_4603IMG_4620IMG_4619

What Sickle Cell Pain Feels Like

Having Sickle Cell, I’m often asked the same question over and over again: what does Sickle Cell pain feel like? Every time someone ask me this I never have a straight answer. The reason why is because Sickle Cell pain can’t be described to someone who doesn’t have it. I say that because Sickle Cell pain is literally like no other pain. People without the disease have never and will never feel this pain. All I can say is that it’s excruciatingly painful; as a matter of fact when you look up Sickle Cell pain that’s how it is always described: excruciating pain. It’s so painful that when I’m going through a crisis I often wonder how my body is able to stand so much pain (yes, it’s that bad). Different people at the hospital have asked me this, that’s why I’m writing this blog. And yes, I’m still in the hospital, sadly. They don’t know if they want to give me a blood transfusion or not. If they don’t, I’ll be able to leave tomorrow (fingers crossed). Later readers!