Another day of being an active decision maker in my medical care - even if those decisions do seem small.
I had my visit with my home nurse - still the substitute one for Tess. I talked to her about changing the way she did my picc line covering, because within the first day after the last one it was starting to lift up. Having my bandaging lifting up is not a good thing. There's a hole in my arm that is trying to close up but can't because it has a tube in it. That leaves open the possibility of infections - which I definitely do not need. So I suggested that she apply the bandaging the way Tess did, as I had not had this problem previously. We'll see how this next week goes. It may seem like a small input - but if it keeps me from getting an infection - then it is a huge input.
Today is also the day that I have to weigh myself. I have to provide my weight each week to not only the nurse but also the dietitian. The dietitian uses the information to determine if she needs to make any changes in the portions of the ingredients being included in each of my TPN bags - especially the lipids (fat). Well, I got on the scale and saw that I have gained 3 pounds in the past two weeks. At this point I do not need to gain weight. I am actually considered overweight for my height - but I was satisfied with my hospital weight because I know it is a good thing for me to be level at a little bit of a higher weight, so that my body has fat to feed on. But I don't need to gain any. So I called the dietitian and suggested that we change the amount of lipids being added to my TPN bags. If you have seen me (or actually my bag) - the lipids are what make the liquid white vs. clear.
Well, the dietitian called me back and said she agreed. That what she is going to suggest to my doctor is that I receive each week 2 TPN bags that contain lipids and 5 TPN bags that do not. They do not want to completely eliminate my lipids, because I am not able to consume enough food to give me a healthy dosage of lipids. I need the fats for things like keeping my skin from cracking, hair not falling out, etc. So the dietitian talks to the pharmacist and then pharmacist in return writes an order which gets sent to my doctor for approval. I am hoping he approves it, because I really do not want to be stressed out over continuing to gain weight and needing to buy new clothes. On the days that my bag does not contain the lipids, my calorie count will be lower - so I need to try to consume at least 100 calories through something I eat. That shouldn't be too bad - or at least I hope it's not.
So two steps. In the grand scheme of life - they are small ones - but I am being pro-active in my care and making sure that my concerns are heard. Thus far I have not received any resistance, which makes me happy knowing that I have a medical team who listens and has my care as a priority. That they appreciate that I am an educated patient and that I know how my body works. I have not always been this lucky - unfortunately. So I am thankful for the team that I have, that I don't have to feel stress knowing that I am battling against my healthcare professionals. And if for some reason that should change in the future...I will be laying down the law.
But it's a great feeling to feel like I am in control of something - when I have no control over how this disorder is going to affect me. So while I still have all my usual symptoms - today was a win for me mentally.
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