One dose too many....

Well last week was quite the week, with not one, but TWO ER visits. That's right, I am just that cool. I've been anemic since my surgery. They gave me a blood transfusion in the hospital, but it has not been improving since, and in fact has been decreasing a tiny bit every week. So my GI doctor checked my actual iron labs, and they were low. He ordered 5 iron infusions.

I received the first one at the hospital because iron can cause allergic reactions, which are more likely to happen during the first and last infusions. It went fine, so we did the 2nd one the next day at my house with a nurse from the infusion company I get my TPN through. We got through the whole infusion, which took about an hour, and then she was running some fluids when I scratched my arm and it felt like it was on fire. Immediately both my arms were tingling and burning. Then I took a deep breath and there was a severe pang in my lower back. My hands started to swell up and I then I suddenly felt extremely nauseous. The nurse gave me some IV benedryl and we waited a couple minutes but everything was getting worse. She called the pharmacist, who told her to give me more benedryl, and said we should call 911. It became really hard to swallow and I was really afraid my throat was going to actually close up. We live about 4 minutes from the hospital so the ambulance was there really quick. Actually some firemen showed up first. They were checking my vitals and my oxygen stats were fine, it was just very painful to breath and so my breathing was very shallow. Well, just my luck, when we got to the hospital they said every ER bed was full. I told the paramedics that I was now having chest pain that was getting worse. They told the nurses who still said they didn't have anywhere for me to go so they put me in a wheelchair and made me sit in the waiting room! I was crying by this point, which wasn't helping any. My hands were now so swollen I couldn't straighten my fingers and you couldn't see my knuckles. My feet were swelling up too. I was so upset. Couldn't they have put me in the hall and given me something? The whole way there I just kept thinking that I at least this time I wouldn't have to wait in the waiting room for forever. We only ended up waiting for about 15 or 20 minutes when they took me back. The doctor basically said he didn't know much about iron reactions so he was going to call my GI doctor. We didn't see him again for 3 more hours. Eventually I was able to get something for pain and nausea. I finally used the call light and asked the nurse what the deal was, and she got the doctor to come in who said he hadn't forgotten about me (um not so sure about that). He said my symptoms were pretty common and that if I was feeling better I could go home. Well I was so tired of being there and them not doing anything I wanted to leave more than anything. I literally crawled into bed and we didn't do TPN that night. I made it to work the next day, but my legs felt like jello and I couldn't wear my contacts because my eyes were itchy and watery and felt swollen. It was a long day and I had to work almost 12 hours. I was so exhausted.

It's hard to tell from the pic how swollen my hands were, but they both were, especially the right hand. 

We didn't do an infusion the next day, Wednesday, but we did one on Thursday. On Wednesday they had me take some prednisone, claritan, and zantac (which apparently has some antihistamine in it). I went to the infusion company's office to have it so that other nurses and pharmacists would be present. They gave me IV steroids and benedryl 30 minutes before the infusion and ran fluids at the same time. Well we made it through the whole infusion once again. I was feeling fine when the nurse noticed that my chest was all red. Within literally the next minute my arms started turning red and burning/itching again. Little tiny bumps started to form on my arms, and as more time went by, they turned into huge half-dollar sized welts. My hand and feet were swelling again, and I started to get the pangs of pain in my back and chest when I breathed. They gave me another dose of benedryl but I wasn't improving so they told us we needed to go the ER again. I was so disappointed. I didn't feel as bad as I had the first time (probably because of the premeds) so I was just really hoping it would start to get better. Their office is in Spokane Valley, so we went to the Valley hospital.  We were only 5 minutes away, and 25 minutes away from Sacred Heart, the one we usually go to. By the time we got there, my right arm was one huge welt, all red and swollen, and I was limping when we walked in because my feet were so swollen it felt like I was walking on balls. I sat down in a chair for about 30 seconds while Chris was filling a form about what was wrong. The nurse had called and told them we were coming too. They brought me right up and took my vitals. Then took me right into a room with a PA and a nurse who looked me over and got me right back to a room. They didn't even care about what meds I was taking, they told Chris to give the list to them later. When we got into the room one nurse told another nurse to hurry and get the doctor. He came in and acted like he knew way more than the doctor at Sacred Heart. They immediately gave me more benedryl, steroids, and pepcid, which has antihistamine in it. The doctor said my airways were open so my oxygen stats were good and I didn't need an epi pen. But he said that didn't mean I wasn't having difficulty breathing. We noticed  a short time later that my right arm looked almost back to normal and my left arm was much better too! The breathing pain was the last thing to get better but it improved pretty quickly. They also gave me stuff for the pain and nausea. They had us stick around for awhile just to make sure I was still improving and doing ok. When we left we had only been there about 3 or 31/2 hours and I was feeling much better. The next day was much better too, I wasn't feeling the effects of it anymore. They ER doctor had me take some prednisone for 3 days afterwards though, because he said that sometimes it can relapse and come back randomly in the next day or two.

This pic was taken once things had gotten a lot better. You can see the side of my hand that is all swollen, and the red patches on my left arm-what was left of the welts. My right pinky was huge!

Moral of the story: no more iron for me! I was able to still get 3 full doses, and I have felt like I've had more energy this week, so that's a plus. :) Other than that, I have actually felt really good the last 2-3 weeks since I started TPN again. I just got 7 more bags of TPN, and they decreased the calories and volume by 20%. We are going to try tapering off of it this time, instead of cutting it cold turkey, to see if my body handles it better and hopefully I can stay off of it. I have officially gained 20 POUNDS! The last few days I have had such a good appetite and feel like I'm eating constantly. I can no longer fit into some of my pants. :) But Chris so no new pants until I'm off TPN and maintain my weight. Which is probably a good idea, haha.

I also think the Cimzia is actually helping my hands..lets hope it keeps getting better! I hate doing the shots. Its harder because there's a huge long needle instead of a pen like the Humira was, but it's worth it.

All for now...hopefully the next post is not about the hospital!