What the…???!!!

It seems like it was about two weeks ago that my Rheumatologist was trying to get in touch with me and we were playing phone tag for days. It was about lab results so I was curious as to what was so urgent that he was calling me about labs now? But it was nice to think that any doctor would take the time to go over his patients labs with them after the initial visit. It ended up that he was reading my labs results that my Nephrologist ordered. He will always send a report to my PCP and Rheumatologist. So my Rheumatologist received those reports I had just gone over the previous week with my Nephrologist. The labs showed that the protein being filtered through my kidneys had greatly reduced and my kidney function went down a little. This is after restarting Plaquenil 200 mg/ twice a day, another 1,500 mg (full dosage 3,000 mg) of CellCept and Prednisone 60 mg and taper down 10 mg every two weeks until I get to 10 mg and I would see him again on February 4th I believe. He initially said he had just placed labs and to do them today. It was to measure protein and kidney function again but when he realized these labs were just done a week ago he told me to totally disregard the labs. Not even do it before our next visit, he hasn’t ordered anything more than the labs he ran on me the day I first saw him in November. The reason I mention these things is because he wanted to base his decision about changing my treatment plan due to labs looking a little better overall that was done a month apart and I don’t see him again until February. So at the time there were still about 1-2 times that I could do it and I bet it would go up and down just like my Nephrologist said. Since we were looking at reports from my Nephrologist- let’s call him Bob, I asked my Rheumatologist if he received Bob’s message about who was going to set up the Infusion because if no one was doing it he would set it up for me. My Rheumatologist sounded confused and asked, “But your labs are better. Why would you still want to go through the chemotherapy.” He proceeded to tell me that we could continue with the CellCept (you know- the one that “failed”), and throw another medication in the loop. Oh the perks! I said I was still considering it because when I went over these labs with Bob, he said that he would still go with the chemotherapy because my labs go up and down all the time from month to month. I asked him in a couple different ways if I should continue on this course since we seen an improvement and monitor the progress or results and make changes as needed or if he would still strongly suggest the Cytoxan. Bob asked me on that visit why the long wait? And asked me what my issues with Cytoxan was. I said there were a number of things but what I realized is that if I have the possibility for my kidneys and maybe even my Lupus to go into remission then I have to take it. It’s been a long time and I know it can be even longer. Even if my kidneys only go into remission for a couple of years or less, that’s still better than the protein destroying my kidneys on an almost daily basis. I didn’t want to waste any more time. I just wanted to do it already. I felt like I had the luxury to process a lot of what chemotherapy entails to me. I am not one to deal with anything negative. I would rather suppress it. But I knew I needed to process this one the right way or I might end up feeling like I’m going to have a breakdown later when I’m going through it. So my Rheumatologist said he would write a message to Bob and tell him the course of treatment he thinks I should do. So until I actually see him again on 2/4, I will not know what I’m doing. And if it is Bob that needs to talk to me about that then I have to wait until around 2/16. It makes the baby issue more unsettling to me. I mean sure I don’t want to go through Chemotherapy. Nobody does. But when I have three doctors telling me that they agree, the benefits outweigh the risks including getting cancer (which runs in my family). So it upset me that we had this in depth conversation about it and he kept acting as if it was so dire and I had to do this or it would be a shame to be on dialysis at 50 years old. And then the use of Prednisone among other things in one month makes him think they will continue to get better? I had no protein in my urine for the first time I knew of since 2001 just a few months ago and my kidney function was down but that’s still a good deal. Then the next time I saw him within maybe 3-4 months, my protein was high again and still bad kidney function. If there is a way that doctors can stop saying the worst things and are so quick to prescribe chemotherapy and then when there’s a slight improvement there’s all of a sudden another option that was clearly not an option before. I was crying everyday even if I shed a few tears as a thought crossed my mind or I remembered something for over a month. And what? Was it just not as serious as he made it sound? You can’t just throw these kinds of things at people as their only option unless they are sure! It’s not fun and games. I was referred to an Oncologist  when I lived in Las Vegas,  my doctor said it was because, “I think you might have cancer.” And with family history of all types of cancer run in my mom’s side of the family our generation has been lucky so far- knock on wood.

snapseed

I did so bad on the Prednisone this time. I started at 60mg and my PCP brought me down an extra 10 mg early because I was having problems breathing, I never really got to lose all the weight or hardly any of it since I got off Prednisone over a year ago. I don’t have any more room to “grow.” My face: cheeks, chin, eyes, look swollen. Next Wednesday I can go down to 20 mg. I’m still on 30 mg now. I was soooo grouchy, emotional, I started to have the crazy vivid dreams again. I wonder if it’s the CellCept? I felt like I was having possible issues with that med too. They make me feel horrible and there are so many of them.

I am falling asleep over here. I will proofread later; I know that’s a little backwards but I haven’t written in a while. Take care everyone and have a Happy (upcoming) New Year. 🙂

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: