So lots has already been happening in this short little time since I have made my last post. I’m an open book so I was just going to go into detail about everything that has been going on thus far.
If it’s not one thing that happens to me, there seems to be another. It’s getting rather annoying that I can’t seem to catch a break right now, but hey, guess everything just happens for a reason. I have received two more blood transfusions, and I have to get these because my hemoglobin is so low. When I need these is when that is between 6.0-6.5 and the average person usually runs between 13-15 I believe is what my doc said. So the second transfusion I had, they gave me 3 units of blood, and it takes about 3-3.5 hours to go through ONE BAG! The worst part? My iPad was connected to wi-fi but it wasn’t a strong enough connection so I couldn’t watch Netflix or HBO Go. It. Was. Brutal! But I had Pandora working for me, so that was good! People just assume you want to talk to them when you have headphones on. So I pulled a George and just acted like I was annoyed and busy as I slowly took off my headphone to listen to someone complain about the nurses, when they were all actually very sweet people. I didn’t want to seem mean to the gentleman, but when I do these transfusions, I just want to be in my own element doing my own thing. Okay so getting back on track, after that transfusion it bumped me up only to 9.4 – better. I felt pretty good afterwards.
I can’t quite remember what has happened between that and my 3rd transfusion, so I will just get into the good stuff now. So on Sunday the 26th, I was having a hard time moving around, my abdomen was just hurting in a way I have never felt. Just gut piercing pain! That morning, we visited the ER, I got an IV and pain meds right away to calm me down. My heart rate was out the roof at 140 BPM. After I was relaxed, I had to drink contrast and they convince you it tastes like a smoothie and it definitely does NOT taste like a smoothie, more like chalk with a hint of fake berry flavor. But it is much better over ice haha. Anyway, I had to drink the contrast and get it in my IV while on the CT table, because I’m so skinny now. (I’ve lost 12 pounds from lack of appetite – I know, not good, I’m working on it!) So I finally got the scan done, and when the results came back, my spleen was pretty much taking up the whole scan! It is ginormous! It pushed my stomach over to the side, and my stomach is very small. That right there explains why I couldn’t move and I had to walk like a hunchback because standing up straight hurt way too much. For those that don’t know, your spleen is basically what keeps you healthy. It helps the immune system, and filters your blood cells and blood around. You can live without one, but are more prone to infections that way cause you have nothing else really fighting off the bad stuff. There is nothing they can do about this big spleen of mine. The swelling will go back down once I start chemo, so they claim. I just have to live with this until then. So we went home with more pain meds, and it was back to the couch for me. Wednesday the 27th, the pain was worse, sharp, stabbing pains were taking over and I couldn’t move at all, so again, back to the ER. We wanted to make sure my spleen didn’t rupture or anything, which we knew it probably didn’t, but when something doesn’t feel right, you know it’s gotta be something. So did the same drill again, and there was nothing more wrong. Another visit, for really nothing. Which seems to be okay, nothing worse happened.
Alright, Friday the 1st was the closest day I could meet with my Oncologist about my spleen. We saw him in the morning, and he didn’t do any tests, but really just said there wasn’t much they could do except feed me with pain meds to help me not think about it. He did Rx me something that he said will try to help my white blood cell count go down and would maybe help the swelling of my spleen go down as well. I haven’t really noticed a difference yet, but he said everyone is different, it could take 2-3 days or 2-3 weeks. So guess we will see… After we left, I got a call from the nurse and again my hemoglobin was at 6.6 and so I had to get scheduled for another blood transfusion. They had to do it Saturday, and of course it’s when its 70 degrees out and sunny! It was only two units I had to get this time, so it wasn’t awful, and there were only 4 people in all day, so I didn’t talk to anyone. It was nice.
Okay, now on to the major stuff that has been happening. I told you I was going into detail, so hang with me!
Tuesday the 5th, I was starting to develop some awful, awful chest pains! It felt like a 400 pound man was sitting on my chest. I could barely breathe and the only thing that would calm me down to focus on breathing normally was of course my trusty pain pills. Sleeping throughout the night was pretty non-existent. Wednesday morning took forever to come it felt like, but we yet again decided to go to the ER. But before that, I had one more blood test to do before the search for my donor can start, so we went to do that first cause I’m tired of waiting around for this to start. Anyway, they wheelchaired me from my Oncologist’s office to the ER, just a little special treatment you get when you say you have chest pains haha. We got right in to a room and the doctor was actually waiting for us! When the hell does that ever happen? It was nice! I got into a gown, and got all hooked up with two IV’s, one in each arm, put on oxygen, loaded up with some pain meds, and got some blood tests going. Everything was going pretty quickly and soon enough I was on my way for another CT scan. I didn’t have to drink the contrast this time though, thank God! Because I was so short with my breathing and I can’t lay down flat, I had a hell of a time laying on the table. You have to hold your breath 4 different times for 6-8 seconds, it was brutal. I was done within 10 minutes and it ended up being okay, just glad it was over. The Doctor was going over several things that it could be while we were waiting for the results. One thing he said was it could be pneumonia, or some sort of infection. He immediatly started me on some antibiotics, and was explaining a procedure that may have to take place. Because the pain was in my chest, the assumpsion was that it was my lungs. We got the results back and you could see my right lung perfectly! My left lung? Not there. It was collasped and over taken by fluid. The doc immeditatly sent me up to the ICU where I would spend the rest of my night. He was explaining that I would need to get the fluid out from around my lung so it can expand and I can go back to breathing with two lungs. We got back the results from my blood tests done earlier, and I was really high with my INR. That is what I get measured for with my blood thinners I am taking. I won’t go into how that all works but I am suppose to be between 2-3 and I was at 6.6! So before the fluid could start to be drained, I had to get my blood thickened otherwise I would be bleeding like crazy from the needle for the procedure. Once I got up to ICU, we had to wait for 4 units of FFP to get here to get my blood thickened. It took about 45 minutes, but I was really comfortable and nurses were more than amazing! So after I was re-oiled up, we still weren’t where we needed to be, so I had to wait for an additional unit to get here. ugh! After about an hour, we were ready to get going! How this procedure works: I sit on the edge of the bed with my arms folded on a table. The doc numbs the spot where they are going in, which is in my back, and holy hell does that needle hurt. Once I am numb, he sticks another needle in, and threads a catheter through that hole and starts draining the fluid. All I can feel is a bunch of pressure but no pain. They took out 2 liters of fluid out! The worst part is as they take out the fluid, my lung is slow starting to expand back and I can’t stop coughing. It was ridiculous, I couldn’t catch my breath to get a good cough out, it was just constantly there. But finally it was all done, and I could go back to resting. It takes a few days to get the results back to see what the fluid is and where it’s coming from. My spleen has room to move around now, so it’s not AS painful. My breathing is much better, still not working with a full left lung because all of the fluid isn’t out yet, but it is much better.
This morning I was able to get up and walk around, and walk around STRAIGHT! No hunchback! It was pretty exciting for us. I am currently still in the ICU but I am being transferred to a regular room some time today. I am not sure if we will be in the hopsital another night or not. I know they stil have a couple tests they want to run for tomorrow morning, so we shall see. Anyway, thank you all so much for your continued love and support! Definitely am starting to need it! The search for my donor should begin real quick now, because I finished up my last blood draw and then the search is on!
I will of course update once we have some results and if any new information comes up.
Much much love!
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