Hi guys! Wow have I fallen way far behind on updating! There have been a few things going on with me medically, but not too much.
The biggest thing that has happened was a trip to the emergency room a couple weeks ago. Well I had had a pretty bad headache for over two weeks now. We are thinking that the nerves are starting to come back online from the surgery. It got to the point where I was not tolerating it very well any more and we could not manage it very well at home. I then spiked a low grade fever with absolutely no signs of the flu or any other viruses. Well with my port we are always on the look out for infection and I have to go to the ER at the first sign of a fever or infection. An infection in my port can spread to my blood stream and then my heart relatively quickly and is potentially fatal if left untreated.We went to the ER to rule out any infection and thankfully there wasn't one, so we still do not know exactly what caused the increase in symptoms. Thankfully I am feeling better now!
I had an appointment with my neurologist/POTS specialist on 2/13. We discussed everything that has happened since I last saw him in August and decided not to change anything for now. I am very stable and doing great on the meds I am on now, so why mess with them? We did talk about getting off of one of my medications come this summer because it may be contributing to my increased pressure headaches, but I am not willing to risk going downhill with school going on right now. I only have 2.5 months until I graduate, so we will adjust things after that! The only other thing we talked about at this appoint was how my body would handle pregnancy. That is something that we want to start thinking about now that I am married and close to graduating. He said it is an option for us, but it won't be easy. I need to get off all of my medications and will have a difficult pregnancy (bed rest probable), delivery, and recovery period. For now it is good to know that from an autonomic nervous system stand point I could handle a pregnancy, but there are many other doctors to talk to and get opinions from. The one I am most interested to hear opinions from is the geneticist that I am on the wait list for.
I have started to access my own port! It took me a few tries to get the hang of doing it, but now I can do it with no problems! My nurse is coming one last time on Wednesday to discharge me and then I will be on my own. I am confident I can manage it though!
My right wrist (the one I had surgery on in August) has been increasingly sore for the past few weeks. I was hoping it is just with the weather change that it was sore, but I can't bear any weight on it (pushing myself up, crawling, pushing on a door, carrying anything heavy, etc.). It had felt fantastic since the surgery, so I am not sure why it is so painful right now. Hopefully it goes away soon otherwise I will have to make an appointment with my orthopedic surgeon to get it checked.
We got the medication delivery system set up with my new insurance. They deliver a 3 month supply of all of my meds and they are now only $20 a month for ALL 4 of them. This is about 1/5 of the cost or less than it was for my old insurance and I don't have to deal with picking them up multiple times a month since they were all on different schedules. This has been really nice and convenient.
My insurance situation is changing once again... I still have not been able to get into an endocrinologist with all the insurance issues and at this point am hoping to wait until after April 1st because blood tests and scans will be much cheaper with my new insurance.
Right now the only appointment I have scheduled is on June 12th with my POTS specialist. I will update as soon as we find out more with the new insurance and are able to schedule the other appointments that I need. Sorry for the long gap in updates, but I have been busy with school and work. I am feeling really well and am happy with where I am at medically right now!
