Thursday Feb 24th

I had a planned visit to the BMT Clinic tomorrow but ended up going today. Kristy took the kids to the docs this morning and he confirmed Sophie has RSV and James sounds like he is getting it. They should be okay but if I catch it it may be more problematic. It can end up as a RSV pneumonia but only in people with some sort of compromise to their immune system such as new babies and old folks...and me.
So, I went in for an RSV test and also had all the blood tests I had planned for tomorrow. The RSV test will take until tomorrow. But sadly I have to start taking precautions now in case I haven't picked up the virus. It means I have to stay clear of the kids, we're trying to figure out how to do this as I've been back looking after them a lot of the time lately while Kristy has been studying and working.
The blood results were encouraging, creatinine is down again 2.19 from 2.44. I was guessing my hemoglobin was a bit better at around 8 and I wasn't far off, it is 7.9 from 7.6. My WBC was down to 3.8 from 5.2 which could be because I have been fighting off a cold or could be RSV. They checked my cancer markers which normally happens 100 days after transplant and I'm on day 76. I'll get the results from that in 3-5 days. Still nauseated but slowly getting better I think - bloody slowly!

Friday Feb 11th BMT Clinic visit

This appt was set up because last week my hemoglobin was so low that I was probably going to need a blood transfusion today. Well my hemoglobin bounced back all on its own 7.0 to 7.6 so no blood needed and also the appt I made for an EPO shot next Tuesday could be canceled. Also a surprise was my creatinine which got better 2.68 to 2.44, a small step maybe but it is still going down which is great. So I don't have to go back for a couple of weeks.
I found out that artificial EPO has some 'baggage' attached to it. If for instance my kidney function doesn't get any better and the naturally occurring hormone EPO  doesn't 'naturally occur' and I have to get EPO shots on a regular basis then statistically people using EPO are found to come out of remission earlier which is a bummer! So basically if my kidneys are buggered and they don't produce EPO which in turn means it doesn't encourage my bone marrow to produce RBC's which means my hemoglobin level is low which means I have no energy. So I take an artificial EPO and it makes me feel better but shortens my remission....what fun! Lets hope my kidneys wake up and produce epo on their own.

Thursday Feb. 3rd

So I had my first appointment in two weeks today.  Due to the massive snow storm my renal appointment was postponed (unfortunately) for another two weeks.  Since my line was pulled a couple of weeks ago I had to be stuck for the first time in over 2 months - as always, Carlos (the BMT phlebotomist) did a great job and got me on the first stick!  My lab results were just ok - creatinine is hovering around 2.6, today it was 2.68.  Hemoglobin was 7.0 and other counts were fine.  At my last appointment they drew an erythropoetin (epo for all those in the cycling world!) level and we found out today that it is extremely low.  It is technically measuring within normal limits, but for a hemoglobin of 7 it should be much higher, stimulating my bone marrow to produce more red blood cells.  Epo is a hormone made by the kidneys and since my kidneys are still working at a fraction of normal, they aren't producing enough epo to rebuild my red blood cells in my bone marrow.  In numerical terms, my epo is 16.8 and normal is 3-24.  But these "normal" levels are for people who have a normal amount of red blood cells/hemoglobin.  The BMT doctor today told me that for a hemoglobin of 7, my epo should be closer to 500. Because epo is so closely linked to kidney function, it is a medication that has to be prescribed by a renal doctor in order to be covered by insurance.  So now we've emailed my renal doctor to see if we can move up my appointment with her, otherwise it is very likely that I'll need another blood transfusion next week.

On to my GI tract...I am still having a fair amount of nausea unfortunately.  I'm still waiting to hear about the results of my previous test, but it's looking like it's what the GI doctor initially thought - autonomic neuropathy which has caused decreased motility to my gut.  After a couple of weeks of treatment for this, it seems to be slightly improving so I'm hoping that it continues to right itself over time.

A couple of days ago I spent about 15 minutes on the elliptical and the past two days I've done some snow shoveling, so I'm starting to get a little bit of energy back!  Going pretty slow on the elliptical, my heart rate was 150 which is a bit of a joke.  So hopefully with some epo on board I'll start getting back to normal and soon I'll be back on my bike enjoying some hard hills!

Almost exactly 1 year ago on top of Slieve Bloom Mountains in Ireland with Alistair