Thursday, October 16, 2014


Do you remember that Robert Frost poem that talks about choosing the right path? I'm not going to post specifics but I am sure you know what I am talking about! I've had to read that poem more times than I can count in school! As many of you know I have been stuck in the hospital for a week now.

Last Thursday I had an IV Iron infusion like I have had many times before with no complications! Mom dropped me off at school a few hours later and I felt fairly decent but that went downhill in about five minutes. I suddenly felt really nauseous and dizzy. I didn't think it was much so I went on to class but I got really sick. My heart was racing, I felt like I would pass out, I couldn't walk straight, and I had a massive migraine. My vitals were crazy! O2 was way too low, heart rate was way too high, and then my blood pressure was sky high. After getting meds and laying down my blood pressure was better but all other vitals were bad and my pain just wasn't going away. Mom came and got me the Hematologist/Oncologist who was on-call said to give me IV Benadryl and if that doesn't help to call back in 30 minutes to an hour. Everyone figured I was just having some delayed allergic reaction...Which would be weird because I have gotten countless iron infusions since I started them in March and have never ever had an issue. I never did get better. We checked vitals again and my O2 was low but better, heart rate was still quite high, but now my blood pressure had just tanked! We were directed to the ER to attempt to control my vitals and get this pain under control. I was admitted for pain control and to get my vitals stable in addition to another issue my port-a-cath.

Over the weekend we got my vitals figured out and back to normal. My pain has still yet to be controlled even with IV Morphine although I will admit I feel much better than I originally did when I walked through those Emergency Room doors last Thursday. The surgeon met with us on Friday about my port and let's just say he was not the most understanding at all. He did say we should probably take my port out and place a Hickman due to the issues but he wouldn't be able to fit me on the schedule for the weekend and since I would be stuck there it could probably be done on Monday. Although he did try and force me to use my port by saying "Even I have to do things I don't want to do that are good for me." I was absolutely angry and just shutdown. Eating your vegetables is good for you but it doesn't cause you any harm! Using my port may be good to get proper nutrition BUT it does cause harm as while infusing my arm goes numb and starts tingling and it's just very painful. My port hurts and is tender in general even when I am not accessed. We have had trouble accessing so there is an obvious issue that needs to be taken care of.

On Sunday the residents and the floor docs showed up and told me I was having a picc line placed tomorrow so we could give my port a rest. WHAT? We agreed we were removing my port and now they are making this decision without my involvement? It's my body you just can't do whatever you please with it! What made me really upset was the surgery team never came to talk to us about the decision and I had to find out from the residents. I asked for surgery and their explanation on Sunday afternoon was that they think my port issues can be fixed just by resting the port so we need a picc line so you can get TPN. They refuse to take the port out because I will loose access on my chest to place central lines and those never come back. It's a once in a lifetime deal! There is no set number that anyone has but once you reach that limit you are out of luck big time! Which I have only had two central lines and a picc line in the past year. The surgeon still refused to give us any other option and said I either had to do it his way or no way at all. Sadly I was forced to get a picc line which I absolutely did not want to do but I had no choice. My port is broken and I can't get full nutrition any other way.

Monday afternoon I was rolled down to radiology to get this picc line placed. I was not happy. I had a picc line placed a year ago so I figured it would be just like last time! No major issues and I didn't need any medicine. I knew who would be doing the placement and it was someone I could trust. Turns out I was wrong...My Mom had to leave so she couldn't be there for me and I knew no one in Interventional Radiology who would be placing the line. I was extremely anxious and scared. Thankfully my nurse from the floor came down to check on me to make sure I was alright and I wasn't. She stayed with me the entire procedure holding my hand. I did need versed this time! The radiologist tried to place a line six or seven times before he could successfully place it only by dilating my veins. I can't even begin to tell you how painful that is! You never ever want to have to be awake for that. It was horrendous. My picc line was also placed in the bend of my elbow so they don't want me bending my arm. That isn't going to happen! How many people do you know go all day without being their arm. You bend your arm for everything! It's extremely painful and uncomfortable. I have so many giant bruises on my arm and they hurt bad. Homecoming is on Saturday and I really didn't need to be decorated in black and blue. The procedure overall was awful! I got back and took all the medicine I could and then slept for a few hours.

So now that I had to go through the trauma of getting my picc line placed we know I can NOT use my left arm anymore to place a PICC line. The radiologist damaged my arm a lot trying to place that one line it wasn't even worth it! Now since it looks like we are going to be taking my port out and placing a Hickman hopefully I just lost two access spots right there not including my left arm and who knows how many we could have gotten in there. So their overall purpose was defeated anyway! I now supposedly have a surgery appointment on Monday with my usual surgeon to hope he will straighten things out. I can not have this picc line in for much longer. Infection risk is very high with PICC lines which is another reason we wanted to avoid this situation.

Probably the hardest part of this hospital stay was shattering my Iphone screen on my IV pole on Tuesday night. My phone charger got tangled up in my tubes and as soon as I got out of bed to go to the bathroom my phone came with smashing into the corner of the IV pole and completely shattered. Thankfully it still works but it's not the prettiest thing in the world. I have had a phone for four years now and I have never ever broken a phone once until Tuesday night happened. My Mom said we will get it fixed but it just irritates me that I had to be so stupid and let that happen. This has just not been my week at all!

Tomorrow I am asking to go home because they are not able to further help me and if anything they have made things worse. I am done dealing with doctors who refuse to help me and include me in conversations and decisions that involve what happens to me and my body. I may not have a medical degree but I am fully aware of what happens to my body and how it makes me feel. I sadly have to go home with this picc line in my arm and the port still in my chest. Pain isn't entirely managed either but I guess everyone is just hoping for the best. This has been the absolute worst hospital stay I have had in the history of hospital stays and as you know I have had a lot! This week has been challenging both physically and emotionally so thank you for all those who have stuck with me listening to my rants, visiting me and keeping me company, or just being there for distraction because it has helped. Keep my spirits up and going. Also an awesome thing is Wednesday I was apart of a video project for the child life here at the hospital! It's a video for the donors to thank them for helping fund this hospital to make it work like it does! I got to tell them what child life means to me and just some of the experiences I've had with them since I have been sick and in the hospital. My favorite is last year when I had my first picc line placement my nurse was dancing to White and Nerdy because I had never heard it before so child life pulled it up on the Ipad we were using for music therapy distraction. It was quite humorous to say the least! I have had so many awesome experiences with child life and they've been able to be there when I need them to talk about what's going on an find a reasonable solution to my problems.

Anyway I am thrilled for Homecoming on Saturday even though I won't get to go to the Mito Walk and I am ready to bust out of this lousy hospital! Also IVIG starts next Friday! Hopefully this will help me stay healthy and make my immune system function for once! For those who don't know  I was diagnosed with Common Variable Immunodeficiency(CVID) back in September which we have suspected for a while but never got a confirmed diagnosis and now we do! I promise I will share Homecoming pictures!

While all these choices that have been put in front of me I have come to realize none of them are good options but I still sadly have to choose one and sometimes I don't get a choice like I would have hoped for. What choice I choose depends on what is right for me and I hope that it will come to show in the coming weeks. Fear and anxiety definitely play a part in my decision which is why I am very reluctant to physically make a choice but I hope it's for the best!