Here is a picture of my mom and I-again I have no idea what day this was. I am wearing a pediatric gown that they found for me, that fit me more like a t-shirt so that was nice. I wore pajama pants the whole time too, which was a lot more comfortable. The nurses wouldn't let me wear my own shirt for the first few days but finally I talked them into it. :) The first couple days I had the pain button, but it was causing my blood pressure to go really low, giving me headaches and making me dizzy and lightheaded when I got out of bed. I was so out of it and weak that 1-2 people had to help me up to the bathroom. The first night Chris got up a million times with me, after that I mostly just started asking the nurse to help me so he could sleep. Chris slept in a chair that reclined all the way flat most of the time. The last few nights he usually moved over to the couch sometime in the middle of the night-I don't think either were very comfortable, poor guy!
I don't remember if it was the first or second night, but there was one night when I had some sort of anxiety attack or something. I was breathing really heavily, which concerned the nurse so she checked my oxygen but it was fine. I couldn't calm down for some reason and started crying. Chris and my mom and the nurse were all trying to help me. It took me awhile but finally I got over it. I don't know what happened. I remember apologizing and the nurse telling me I didn't need to be sorry for anything.
After a couple days they changed the pain medicine they were giving me so that I was getting pills and IV medicine. This seemed to work better and didn't make my blood pressure go so low. I was also getting IV steroids, antibiotics, fluid for the first couple days, and my good ol' dietitian friends started me on something called Procalamine. It's a form of nutrition support we use in the hospital. It is meant to just be supplemental and can be given in just an IV (it doesn't have to be through a PICC line like TPN does, although mine was because a PICC is what I had). I was probably getting 500 calories or so from it. Everyone was very concerned about how I was eating. The first day I was on a Clear Liquid diet, and my friend Melissa who I work with called the Dr and got it changed to Full Liquid and also started me on a calorie count! That is something else we do when someone is not eating very well. The nurses wrote down every single thing I ate for 3 days so that they could calculate how many calories and how much protein I was getting. I don't know the results, but I know that most of the time I was there I just drank milkshakes and Ensures. One nurse even started me on TwoCal. It's a supplement like Ensure, only with even more calories and protein. We write orders to give 2 oz four times/day to patients that aren't eating very well. It tastes pretty good, but it's really thick and hard to drink a lot at once, so if we give 2 oz at a time with medications, then they get 500 calories out of it by the end of the day. I'm used to people telling me I need to eat, and I was trying, but I just did not have an appetite at all. One thing I did discover that I could eat was a cheese casadilla. I ordered that twice and both times ate 3/4 of it. I couldn't even eat very much mashed potatoes or pasta (which are two of my favorites) when I ordered them, but for some reason the casadilla was good. The second day I was there one of my nurses upset me a little bit. I shouldn't have let it get to me, but let's remember I was very sick and tired and not in a great mood. She started asking Chris (right in front of me as if I wasn't there) how I normally eat and if I pick at my food, etc. He told her I eat good when I feel good. She then asked me flat out if I'm anorexic! I told her no, I'm sick. She was asking me about my weight history. I lost about 10 pounds a few months ago, but lately it has been pretty stable, and I had actually gained 2-3 pounds back. She gave me a lecture about how important it is for me to gain some weight and eat better (and she knew she was talking to a dietitian). One time she caught a glimpse of my back and asked if I have scoliosis. I said yes, and then she said, "oh my gosh you are so skinny!" As time went on I did start eating a little more and that's one thing the Dr was happy about when I left. When I told him I ate 3/4 of a cheese casadilla, he said that was great and then asked if I wanted to go home. (More about that later).
One day I was with it enough to play a game of Five Crowns with my mom and Chris. I don't think we played a whole game but it was nice to do something besides just sit there. Most of the time I feel like I just slept and did nothing. I brought a book, and Chris' stepmom gave me a book with word searches, sudoku, etc, and we brought a couple movies, but I never had any energy to do that. Even getting on the internet to look at Facebook for a second would put me to sleep. Anytime I tried to send a text message I swear it took me 20 minutes because I was so tired. I watched a little bit of TV during the day, but hardly any at all. In the evening we would watch American Idol or something and I usually couldn't stay awake for that either. The IV pain medication and nausea medication just made me so tired. Chris said I said a lot of funny things, which I don't remember. I asked him once if he talked to "Sister Leiser." I also asked him if the books were all at the back of the line. (I know it doesn't make sense). There were a couple other things that I will have to ask him about and add later because I don't remember. Anyway, I think he got a good laugh.
After a few days I finally decided I could get up and walk around a little bit. I usually could not last very long and would end up being pushed around in a wheelchair, but it was nice to get out of the room.
Chris laughs every time he sees this picture. He said I was so tired at this point that I was talking with my eyes closed. I asked him to take a picture of me and when he told me to smile, I looked up and smiled, and then went right back to having my eyes closed. Glad I could give him a laugh. :)
So basically every day we were just waiting for me to feel better. The Dr would tell me to see if I could go without the IV pain medication, and I never could. It didn't even seem like I was there for 7 days (I'm sure it did to my mom and Chris), time just went by. Looking back I wish I had been a little more with it and able to ask more questions about other things we could try, etc. While I was there one day I noticed that my throat was really sore. I looked at it with a flashlight and it looked terrible, with lots of white spots on the back (sorry if that's gross). It honestly looked like I had strep throat. My tongue also looked like it had thrush, which I have had before when I've taken antibiotics. The nurse called the Dr that night and he said he would look at it in the morning. When he did he said it was probably either strep or thrush and that the antibiotics should cover it if is strep, and he started me on another medication to help the thrush. My throat started to feel better and within a couple days looked a lot better. Ever since then I have developed some sort of cough/cold. I have been blowing my nose like crazy and had this really bad sounding cough. It has not been too fun. I think it is finally going away though. I don't know if I caught it in the hospital or what, but I guess it could have been worse.
Anyway, the Dr discharged me I think because he didn't see any reason for me to still be there, except I was still having a lot of pain. The whole time they said my labs looked fine, x-rays and CT scan looked normal. Basically they didn't know why I was so sick.
This picture was taken right after I got the PICC line in and right before they took the IV out. Pretty cool huh? haha
The picture below is the PICC line after they removed it. Can you believe all this was inside of me? A PICC line basically is a line that goes to your heart and can stay there for weeks or months if need be. It can be used to draw blood and is very convenient. I was actually disappointed that they took it out. I asked the Dr. if we could leave it in just in case I needed it anytime soon and he said, "Well you don't plan on being back here in the next 6 months, do you?" Well of course I don't plan on it, but I didn't feel ready to go home in the first place. I should also point out that when I say "the Dr" I do not mean Dr. Smith. He admitted me and saw me the first day, but then the GI doctors on call took turns seeing me. I thought it would be a good thing, and maybe a different Dr would think of something that Dr. Smith hadn't. I was really surprised the day that Dr. Ward asked if I wanted to go home. I had still needed IV pain medicine during the night, but as I said earlier he was happy that I was eating better and said I could go.
In the past Dr. Smith has admitted me even when he wasn't on call and seen me while I was in the hospital. Except if it was the weekend, then the on call Dr would take over for a couple days. He explained to me that things are changing in the practice and basically he doesn't have as much say or control as he would like. He said they are trying to lesson their work load, so when a patient is admitted, they should be admitted through the emergency room or their primary care physician, and then the GI Dr on call should be consulted to see the patient. So basically if he is not on call, he does not have the power to say whether I should have been discharged or not, etc, etc. I think if he would have been on call while I was there things would have gone a little differently. He said he would have given me more fluid, for one thing. They were giving me high dose steroids and antibiotics, which usually help, so I was a little surprised I was not feeling better faster.
The night that I got home was a really rough night. Chris set his alarm to wake up and give me pain medicine every four hours on the dot. Usually I was wishing I could have it only after a couple hours, though. I didn't sleep much and I felt so miserable. As I said before, I didn't feel lots better than when I went into the hospital so I was really frustrated. I called Dr. Smith again that morning and talked to him. Again he wasn't really in a place where he could do much because he was not on call. He said he could have me get some fluids as an outpatient or I could go to the ER and the on call GI Dr could choose to admit me or not. I chose to go to the ER because I was in so much pain. We ended up being there for about four hours. They basically told me that all my labs and everything looked normal, and that we could control the pain from home. I was pretty frustrated and I felt like the ER doctors felt like I was just drug-seeking. They did give me stuff for the pain which helped, so I guess I was ok with going home. Just frustrated that I didn't feel better than I did. So we went home once again and spent the rest of the day watching a movie and basically doing nothing.
The next day I had an appointment with Dr. Smith. My mom came that day and took me to the Dr, and as I mentioned in a previous post, she helped me do some stuff for Chris' birthday. The appointment went really well and I felt tons better afterwards. Dr. Smith spent at least an hour talking to my mom and I. He went through all my labs and tests that I had had, and what they meant. I really appreciated that because in the hospital we were always just told that everything looked "normal." He said that it looked like I was really dehydrated while I was in the hospital, and it actually looked a lot worse in the ER the day after I got home. They really only gave me fluid the first day or two in the hospital, and gave me a little bit in the ER. He said if it had been him, he would have been "loading me up" and that fluid would probably help me get some of my strength back. I have been extremely weak since I got home, hence the title of this post. All the muscles in my legs have wasted away and there is nothing there! Anyway, he said my liver function labs were a little elevated, which probably represented a little malnutrition in my case. He talked about the sigmoidoscopy he had done a couple weeks earlier and drew a picture and showed me all the places he found inflammation and ulcers. He said it looked worse than the biopsies showed, but he always takes what he physically sees and what biopsies show both into consideration. He said it doesn't look bad enough to cause all the pain I've been having, and that the best explanation he has is that the pain is just from the Crohn's. Even if there is not inflammation showing, that doesn't necessarily mean anything. Basically things aren't always what they seem. It's frustrating but I guess that's how it's been for me for a long time now. We also talked a lot about pain medication. I have been a little afraid of getting addicted to pain medication, so we talked a lot about that. He made me feel a lot better. He said that he is not worried about me getting off of it, and that right now I can't go without it, so basically not to worry too much about it. Once the pain gets better, we can taper off of it. He said only a small fraction (5%) of patients really get addicted to the point where they can't get off of them, and that mostly it is just a mental thing and they like how the medication makes them feel. I actually have been able to take less the last couple days too, so that's good. I think he has a lot different opinion on pain medication than lots of doctors, and he even admitted that the ER doctors probably were reluctant to give me anything because of their own bias and opinions. I had a nurse one night who was the same way. It was the last night I was there and she kept giving me the pain medication 45 minutes-1 hour late, telling me that I needed to "get off of these narcotics before I could go home," etc. It didn't matter that I had the medication ordered, she just was doing her own thing, which was very frustrating. Anyway, we also talked about the fact that they took the PICC line out. If it had been Dr. Smith he would have left it in until he knew I was doing better and wouldn't need it for anything else for awhile. It would have been really nice to have in the ER the next day when it took them several times to get an IV started again and draw blood. He said I might want to think about getting something called a Port-a-Cath. It's basically a needle that goes in your chest, just under the skin, and is there anytime you need access. Nothing hangs out, they just don't have to poke around for a vein because the needle is already there. He said he's not saying I need one, but if I am going to need fluids or something for awhile, it might help. We talked about me even going to get some fluids as an outpatient that day but decided not to because I had been poked so many times already. He said to try to drink lots of fluid over the weekend and see if I could get my strength back on my own and let him know how I'm doing. I called this morning and left a message and said that I am still pretty weak. His nurse called me back awhile ago and said some fluid might help me, so I am going in tomorrow to the outpatient IV infusion clinic to get some fluids. I think it will help a lot. Even though I have been trying really hard to drink enough, I don't think I'm getting enough to catch up. Anyway, I felt a lot better after talking to Dr. Smith, which was refreshing after feeling so frustrated the day before.
I also wanted to mention that I have been in contact with the Dr. in Salt Lake a little too. The day before I went into the hospital I called there to see if I could get an appointment soon. We had talked last time I was there about adding another medication with the shots if I didn't feel like the shots were working well enough at week 12. It was week 10 so I called to see if I could get in to see her in the next couple weeks. They said she was booked through April, but they would talk to her and get back to me. I didn't hear from them for almost a week, when I was in the hospital. When they called back they said that they wanted the report of the sigmoidoscopy that Dr. Smith had done. So I had his office fax it to the U of U, and they called back and said that Dr. Peterson (in SL) had wanted him to biopsy a certain area and test it for something called CMV (Cytomegalovirus). We have talked about it before and done blood tests, but they only indicate whether you had this infection in the past, not whether you have it right then. She had never said anything to me about testing for this, so I was kind of upset, and upset that if that's what she recommended, that she didn't make sure her note got to Dr. Smith. He never got it. We talked about it at the appointment and he thinks he can use the biopsies he did take and have them tested for CMV. Basically it's a virus that people with Crohn's and Ulcerative Colitis could be more likely to get, and is rare but would be worth checking, because it is something that could cause pain. He wanted me to try to call them again to send her note to him, so I did and was a little disappointed with the response I got. They basically said that that was her suggestion (at least I think-the lady who I talked to actually indicated that the Dr may be getting me mixed up with another patient, which may be why I never heard anything about this before). The person I talked to said she couldn't find the note and send it because I had seen the Dr at a different clinic that she doesn't work at and it was basically impossible. (Dr. Peterson sees patients at the U of U and at a clinic called the Redwood Clinic, and I've seen her at both places). I had also asked if she thought increasing the dose of the shots would help, and Dr. Smith wanted her opinion in that as well, and they basically said, "If Dr. Smith thinks that would help, she would respect that." They said if I still have problems then I can call again and come back to see her. I thought the whole thing was strange and probably a big misunderstanding. First they acted upset that Dr. Smith hadn't done what she recommended, then acted like they didn't care and he could do whatever he thought was best. So I guess he is going to try to run that test without having to do another sigmoidoscopy (pray we don't have to do ANOTHER one)! If it is positive there is a certain antibiotic they use to treat it. Maybe we will try the shots every two weeks instead of once a month. I don't know, we still need to decide.
Sorry this is going on so long, but as I always say, I write this more for myself than anything else, so I have to write it all down before I forget. I just want to take a minute and say thank you to everyone that helped us these last couple weeks. As I mentioned before, Chris did not really have any more sick days to spare. He was with me the first day and the next day because he always has Wednesdays off. He went to work Thursday and Friday and my mom came and stayed with me. My Aunt Lora went to work for my mom so my mom would still get paid. We are so thankful for my Aunt and everything she did so my mom could be there with me! Chris was with me of course over the weekend and didn't go to work Monday. My mom offered to come again, but Chris wanted to stay with me. :) On Sunday our Elder's Quorum President and someone else from the ward came and gave me a blessing. I had also received a blessing from Chris and my Uncle Blaine the first night there. Chris went to work on Tuesday and my mom came again, while my Aunt Lora worked for her again. We weren't expecting me to go home on Tuesday, so when I texted Chris and told him he was kind of surprised. My mom got there right after the Dr was there and helped pack all my stuff and took me home when it was time. She cleaned our whole house that day: did the bathrooms, vacuumed, dusted, cleaned the kitchen, etc. It was a huge help. Chris' stepmom brought us dinner that night, which was yummy and Chris ate it for lunch the rest of the week. The next day my friend Melissa from work (who also was in our ward until a month or two ago) brought us another yummy dinner, and we got another dinner from my visiting teacher. Saturday my mom was coming to Twin to pick up my sister's kids since my sister and her husband went to Las Vegas for a weekend trip they had been planning, and she brought us dinner that day-actually two dinners! She made us lasagna and chicken casserole, two of our favorites. She also made homemade rolls and brought salad. We put the chicken casserole in the freezer so we will have it when we finish the lasagna. Our family also fasted for me on Sunday and I can't say how much I appreciate everyone's love, concern, and prayers. I got lots of visitors and everyone was always calling my mom and Chris to see how I was. I got flowers from everyone at work, my Aunt Bev, and Chris' dad and stepmom. My sister bought me a way cute necklace from Vanity, which cheered me up quite a bit. :) Chris' grandparents brought me a box of chocolates that I have been working on. I have officially now eaten half of the box all by myself! (Remember Chris is not big on sweets). Anyway, as hard as times like this are, it's good to know how loved I am. It is overwhelming sometimes to think of all the people who are there for us and what great families we have. We have definitely been blessed! I have been so lucky to have Chris. He always knows what to say to make me feel better, he is so faithful and strong in the gospel, and so patient with me. He never complains about losing sleep when I am sick, he still gets up and goes to work every day, and helps so much with laundry, dishes, cleaning, and everything. Oh how I love him!
Here is one last picture of my arm after I took the bandage from the PICC line off a couple days later. It looks better than I expected. I've got some other pretty good bruises from IVs and times they poked me. Good battle wounds. :)
Well sorry for the marathon post, I had more to say than I thought! Good thing I have nothing better to do than sit here on my bed on the computer! Right now I am hoping to be able to go back to work next Monday, a week from today. I don't want to go until I'm much stronger and feel better, because I don't want to get run down again. I am also probably not going to go back full time, but haven't decided how many hours I will work yet. We will have less money, but I don't think working full time is worth the effect it has had on my health. Hopefully I will do better, which will save some money on Dr bills, and come out even in the end. So we are just trying to have faith that everything will work out! I also ran out of sick time last week, so as of right now I'm not getting paid. I'm hoping to qualify for something at work called "Employees Helping Employees," which is where people donate their extra PTO, and others who need it can apply for it. I know everything will be fine and we will get through it. Things are already starting to look better. I know that my Heavenly Father loves me and will never leave me alone!
