Poor old Rebel Rev deals with more post transplant problems

Well this weeks clinic appointment was a real humdinger. 

1. It seems I’m growing more anaemic so I’ve been started on epo injections. Apparently my natural epo levels are so low to be almost not present. It’s a hormone secreted by the kidneys which tells stem cells to become red cells. 

2. My neutrophils are raised and my chest is wheezy so the doctor thinks I may have a secondary bacterial infection caused by having RSV. He has put me on extra antibiotics on top of the extra antivirals. He also arranged another lung function test. If this shows a further reduction in lung capacity then I will have to take more steroids. FFS! Let’s hope it doesn’t come to that. 

3. My immunoglobulin levels are low so I have to have an IVIG infusion over a few hours on Friday after I’ve had ECP. This could be a post transplant problem or because of infection. 

4. My B12 is still low. I have to have 2 injections a week for a while, then it drops to fortnightly and finally to monthly. At least this can be done at my GP’s.  

5. Having had low blood pressure all my life, so much so that nurses wake me in the night when they take my obs because it’s gone so low, I now find myself having to take blood pressure medication. It seems the other medication has caused this. Oh what joy! The epo injections may push it up more too so I’ve no choice but to take yet another pill. 

6. Did you know that ingrowing tow nails are a side effect of having had a transplant? No, me neither. I’ve been booked in for a couple of months for mine to be sorted. That gives them time to get my anaemia a bit better and for this infection to have cleared up. 

Wow. It’s so hard to keep up with it all. Sometimes I leave appointments with my head spinning. This week I also left with an A4 sheet of the plan for the next few weeks. 

Life is never boring with MDS. Sometimes I think nothing will surprise me but I will admit to being shocked this week at the extent of additional problems going on. I will continue to grit my teeth and get through it all as best I can. I’m sorry not to have better news for you all. At least the sun was shining today and we were also treated to a super moon. I guess I’m going through a period in my life where I am walking by the gentle light of the moon and I’m looking at the stars. Eventually I hope to step back out into the warmth and love of the sun. 

Wherever you are and whatever you are doing I wish you well and many beautiful moments of light punctuating the darkness.