I am so sick and tired of being sick! I finally get to feel a little better then bam, something else comes along. My head cold is practically gone now but I am still coughing.
Yesterday I spent all day at the transplant clinic. It was just a routine visit. I got there at 8:30. Waited 45 minutes for the lab to call me back to do my lab work. Then I went to have breakfast in the cafeteria. Back to the transplant clinic by my appointment time which was 10:30. I was literally drifting off to sleep because I am waking up so much during the night coughing that I am TIRED!
So when I finally get back to see the doctor. My lab numbers are so bad it isn't even funny. I have protein in my urine too (not good). So I tell him look I've been sick and last time I got sick my numbers were real bad. So maybe it's because I am sick. He saids 'Well you are wheezing you need to quit smoking'. Hello? I do not smoke, I smoked when I was 13 for a week. That's it!
So I tell him, 'I don't smoke, I've been sick'. 'Ok we'll do a chest x-ray to make sure everything is ok. If we see anything, we'll call.' He didn't give me anything for my coughing and spitting up.
So then we address my kidney numbers. Creatine 1.6 (really bad). Diabetes number looks bad too. Then he saids:
Dr. - I want to do a kidney biopsy.
Me - No.
Dr. - What?
Me - You are not doing a kidney biopsy.
Dr. - Have you ever had a kidney biopsy?
Me - Yes.
Dr. - On your new kidney?
Me - No, and I'm not going to. I had one on my own kidney.
Dr. - Well we'll do some more blood work. But I think we are going to have to do a kidney biopsy.
Me - Why don't we just wait for the blood work to come back? Ok.
Dr. - Ok. I'm going to take you off of Rapamune and put you on Cellcept and Cyclosporine.
Me - No your not. They caused me liver damage the first time they put me on those.
Dr. - Yes but it wasn't that bad.
Me - Bad enough to put me on the liver transplant list.
Dr. - They put you on the liver transplant list?
Me - Yes. They told my family to prepare themselves, they put me on the list. They then did a liver biopsy and that is when they found out it was the Cellcept or Cyclosporine and took me off those medications. My liver returned to normal after that. You really need to read my file.
You know we have one of the best kidney clinics around. But they rotate doctors. I have had this particular doctor about three times now. I go in every 6 months. It just really bothers me that they want to do things and change things when they don't bother to take the time to read my file and find out what happened to me. I always tell a new doctor about what happened with my liver. I remember specifically telling this one. I understand that they see a lot of people but it is frustrating for me.
So now I am all stressed out that he thinks I may be rejecting my kidney. But did he do anything about it? No. He didn't increase any of my medications to prevent it. He didn't change anything. He ordered more blood work and told me to come back in two weeks to see how that blood work turns out. In the meantime I guess if I am rejecting I will just continue to reject and keep doing damage to my new kidney.
So I leave there to go back to the lab where I wait another 45 - 60 minutes for lab work. Then off to get my x-ray. That was the best part of the day, took me maybe 20 minutes. Off to the pharmacy I go to get my meds.
I only order medicine once a month but for the last three months when I have called in my medicine their automatic phone thingy hasn't been working. So when I first got to the clinic I called the pharmacy to fill my prescriptions. I have 9 in total. I tell them I am at the clinic today so I will be picking up before 12. She said it will be ready no problem.
So it is 1:00 p.m. as I head to the pharmacy. Glad that my day is done here and I can be on my way. I get to the pharmacy and as they are ringing me up they say they only have 4 prescriptions. So I tell them that is wrong it should be 9. They get the pharmacist who brings me the message pad from when I called. She tells me that she only filled 4 prescriptions because that is all that was on the message. When she shows me the message it has 9 prescriptions on there. She then tells me that at the time it was only 4 and someone came back and wrote the rest on there. So she begins to fill them. I wait. At 1:58 p.m. they call me up to the counter to get my meds.
I still have to go to work. I am irritable, worried, stressed, tired and mad.
I go back to my regular doctor on the 7th. He's been my doctor since 94 and I don't have to tell him or remind him of anything. In the meantime, say a little prayer that my numbers are good and that I am not rejecting. I will hate having to go back on dialysis and the waiting game.