I just wanted to write an update so I can remember everything later. I ended up being on TPN from the middle of September to the end of December (like the very end. Dec 31st to be exact). I slowly gained weight and when I gained back the 15 pounds that I had lost, we weened off of it over a couple weeks, then stopped it altogether. I got the PICC line out the last day of the year, so that we wouldn't be billed anything in the new year. Literally in the nick of time. We met our out of pocket at the beginning of the year and didn't really want to pay for anything TPN related. Been there, done that (and still doing that from the last time)...
I also slowly started to feel better during this time. I was able to start eating pretty normally, which I was thankful for. Since I have gotten the PICC removed, I have lost about 6-7 pounds, even though I am eating well. It is a never ending battle and I don't know what we will do if/when I lose another 7 pounds. We need to think of a better solution. We never really figured out what the problem was, except that maybe it was cysts on my ovaries that was causing pain, and then causing me to not eat well. And I just can't afford to not eat well. But as you can see, even when I eat well, I can still lose weight. I am just missing so much of my intestine, I would not be surprised if I am bordering on Short Bowel Syndrome. Super fun.
My joints have been hurting too. Not a huge deal, but it is one more thing. My fingers are what bother me the most, and sometimes my toes and knees. Last week I got steroid shots in some of my fingers and those fingers already feel a lot better.
The day before I got my PICC line out I also went and saw the Hematologist in SL. I had seen him previously to try to figure out a way to get my iron up. My GI doctor didn't want to mess with it, since last time I had had iron infusions I had severe allergic reactions that took me to the emergency room. The Hematologist said there was an iron infusion that was given over like 6 hours, that could work, and less than 1% of patients reacted to it. This was great news. I had thought my options were pretty slim to none, so I was super happy to hear this. So I went and had it done and didn't have any problems. Last week I went back to check my iron levels and see if they had improved. I could already tell that all my weird cravings were gone, but I was still feeling tired (which could be attributed to lots of things). On the day I saw him, I was feeling pretty crummy. My blood pressure was really low, which he was concerned about. He asked me if I would like some IV Fluids and some Zofran and I said yes! But I had a training for Usborne in an hour and a half so they pushed it really fast and got it done in about an hour. That was last Friday. On Monday I called and found out that my Ferritin levels went from 15 to 575! I couldn't believe it! The doctor said that it would probably start to decrease again in a few months and I might just need to get the infusion every few months, or every year, depending on how long it took for it to go down. I'm going to ask my GI doctor to check my Vitamin B12 levels again next time I see her. It has been over a year and that could also be contributing to my never ending fatigue.
Here is the iron going in. Chris was a trooper and came and sat with me all day.
Why hello arm, it's nice to see you!
In November Chris and I also met with the Fertility Doctor, who we had seen a couple times previously to do some tests. He told us that based on our test results, the only way we would ever get pregnant was with IVF. Other fertility treatments wouldn't even work, and of course, IVF is not a guarantee either. He felt like we had a good chance with IVF though. So we spent about a month and a half really trying to decide what to do. We looked at all the different plans. We prayed-a lot. We went to the temple several times. We couldn't decide if we wanted to actually try to get pregnant right now, or if we wanted to try to adopt. When we really started trying to have a baby a year and a half ago, my health was good and we felt like I could handle being pregnant. Now we weren't so sure, especially now that we live far away from any family, my mom is not in a position to help me or come stay with me, and I could end up in the hospital or on tube feeding, etc. After a LOT of thinking and praying, we decided to try adoption. We have not ruled out IVF forever, but just for right now. In the future, when my health is better again and when we live closer to family, we want to try to get pregnant. We are in the process of researching adoption agencies in Utah and deciding who to contact and everything. (If you have any tips, let us know). We have given ourselves a deadline of when we want this decision to be made. I feel good about this and am really excited!
Also, since we made this decision, I decided to start another medication for my Rheumatoid Arthritis. We have been avoiding it because you can't take it if you get pregnant. I'm excited to start taking this medicine and for my joints to start feeling better.
On a side note, we have had so. much. snow. I'm so tired of it! It is pretty, but I hate wearing snow boots every day, and driving it, and walking in it. And it is so. cold. Which is hard on my joints. But I guess it is pretty. :) I just can't wait for Spring though!
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