Tuesday, January 18, 2011

Hilly Road Ahead

01/18/2011-A Hilly Road Ahead
The morning started off waking up at 7:00 am-I have not woken up at that time for quite a while and it was pretty difficult to do, but I am trying to make new habits and going to bed earlier and waking up earlier is one of them.
So by 9:30 am-I met my Auntie and Uncle (who are brother and sister to my mom) in the parking lot of a closed down Mervyn's) with my "Auntie" Meena to go for my first real (non trail) road bike ride. It was good-mildly hilly, but not awful. I did not have to stop on any hills and walk up them-and I did not have to shift to first gear at any of them. It was a total of 11 miles, which was pretty good for my first day out. We were going to make it a little longer, but the next signal is REALLY busy, so we turned around a signal early and that took off about a mile or maybe 2.
Some of those hills looked so hard to do and that I could not do them, but once I was on them, I could not stop and just got through them. I sort of surprised myself that I did so many, and such steep hills. The other day I tried to do one hill and I could not do it. I think it has a lot to do with warming up my heart. During surgery the nerves to my heart were cut so I have no autonomic nervous system (ANS) the system which tells you to fight or flight. So this means I have to warm up, this can take a good 5 minutes or more. I think it also helped that my Auntie was there and she would not take it if I walked up the hill.
So I have a new exciting work out schedule-I am training-which is a total surprise, but I will tell you all later. It is mostly an exciting because it is with family, and possibly with one of my best friends!
So-to the medical stuff-at first I typed studd-I wish there was a medical studd-preferably a Dr., but I would take a RN.
So my Immune Cell Function Test (this shows how well I am immunosuppressed, it is bad to be to under suppressed-you will always get sick (like with colds) and are more prone to cancer and other things) or over suppressed-your body will be fighting off the organ) from a few weeks ago came back not good, and they gave me the choice to either up my Myfortic or my Gengraf (I was smart and choose the Gengraf) so the doctor upped my Gengraf a very little bit (it has bad side effects (I choose Myfortic over Gengraf because I think Myfortic makes me feel worse than Gengraf and I don't think I could tolerate anymore Myfortic). So a week later I took the test again and it ends up that I was the smart one and choose the right drug because after taking a break from the Myfortic in December (to go on Rappamune to see if that would help with the nausea and end the chronic rejection-which it did not-it made me sicker because it depleted my potassium and magnesium) my drug level test showed that my body is not absorbing my Myfortic (which is pretty serious-since I tapered off prednisone and was off of it-so I was only on 1 anti-rejection drug, all transplant centers require 2 drugs, some 3). Actually the nurse said either you arn't taking myfortic or your body isn't absorbing it, and I immediately started promising her that I take it ever day as prescribed. So we decided that I am not absorbing it. So I am running out of anti-rejection drugs that work. I got them to give me the name brand of cellcept-I have to make sure that I only have to pay my small copay and not a gillion dollars because I can not take the generic-I thought it was going to kill me.
Anti-rejection meds that work: gengraf, name brand cellcept, rapamune (but would be a last resort)
Anti-rejection meds that don't work=prograft (can't see when I take this), generic cellcept, myfortic
And this is all kaiser is giving out anymore, I have heard of neoral, and Imuran, but Kaiser did not offer it to me. So let's all pray that my ICF will get better (and I will still feel ok) with the cellcept (I haven't taken it in a year).
On a funny side note-I called the transplant coordinator at 4 because I knew my lab results should be back by then, but she still had not talked to the Dr. about them, so she had to call me back. Well I was out running errands and I though it was going to just be a few minutes more, so I waited in the parking lot....for 40 minutes. And then I finally left. And of course 5 minutes later she called me and told me about the med change and wanted me to run out and get the new meds. In my head I though: "So, basically I have only been taking 1 anti-rejection medication for a month, what is one more day, I will go out tomorrow after rush hour,".

1 comment:

  1. Hello Allie! My name is Janelle, and I found you via PatientsLikeMe. I hope you don't mind that I stopped by your blog, I'm a fellow heart transplant recipient and I love to network with fellow recipients :)