Saturday March 19 - Day +100!

Hello hair!

100 days since my transplant...wow! It has been a long time coming and when I remember back...well maybe it's best to look forward. I am trying to remember where I thought I'd be at Day 100 and it is hard to recall. I think I am about where I thought I'd be fitness-wise but there are a few issues still hanging around that I didn't think would be...

I thought I'd be able to open the fridge and want to eat everything like I used to but for some reason food still doesn't seem appetizing. My taste for most things is back to normal or near to normal but for some reason I forget to eat and there is still an element of forcing myself to eat because I know I need to eat...every single day! This maybe because of my 'small intestine neuropathy', but to tell you the truth I'm not sure.

My heartrate is still high and that for sure I thought would be back to normal-ish by now. Sadly my resting HR is 92 and although I've been on my bike in the basement for up to an hour my HR is between 150-160 and I'm not going very fast...at all. This is because my hemoglobin was 8.0 last time I checked and it should be 15, so there is a lot less oxygen flying around my body, hence the HR trying to make up the difference! This may come back on it's own or I may need to take some more drugs to encourage a more normal level.

Speaking of drugs I'm still on an antiviral and an antibiotic so I don't get something nasty while my immune system is not 100%, plus some other bits and pieces (multivitamin, folic acid, blood pressure med, etc). These I believe I need to keep taking for another 80 days. They seem to make me feel a little crappy but I've been taking them for so long now I'm not sure what normal feels like.

So to recap, I feel better all the time (in small increments), I have a ton of hair on my head (I never lost eyebrows) and my beard grows quicker than before...which is a surprise. All in all I can't complain and hopefully one of these days the small issues I have now will get sorted.

Thursday March 3rd - BMT Clinic visit

So, I got back the RSV test results and I was negative. Kristy and I made the decision for me to stay at home (so I could get some painting done around the house) and Kristy and the kids to move to her parents. So I have been here on my lonesome all week. However I have got lots done. I do have a cough/cold but not RSV instead I have adenovirus. My family will be reunited on Saturday 10 days after James' illness, I'm looking forward to it!
Today went fine Carlos stuck me for my blood test, he got me first time of course, he's great. My levels are still improving, slowly. Hemoglobin is 8.0 up from 7.9, no need for EPO, they are happy to see it progress on its own. Although I was slightly dehydrated (whoops) my creatinine is still coming down 2.15 from 2.19. Platelets and WBC have both dropped a bit probably due to my cough/cold.
My cancer marker from the blood test last week shows as 2.7. This is considered remission as a normal persons number is 1.9. When I was first diagnosed my number was 398 and just before my high dose chemo (Melphlan) it was 8. So in a couple of weeks (around 100 days after transplant) I have further tests which will include a bone marrow biopsy which hopefully will be as positive.
My nausea is getting better, I'm still not eating and drinking normally but I'm getting there and one day soon it will disappear....

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

Monday January 24th

Well today I went into KU and had my line (trifusion catheter) taken out. Now tomorrow I can enjoy a shower without press and seal for the first time in a couple of months. It did its job and never gave me any problems (no blood clots or infections), and allowed me to have labs drawn, etc without any issues. Kristy was able to come in and watch the line be removed as she knew the tech, and so she took some pics.
Last Thursday I went into the BMT clinic for a regular checkup. My counts are holding okay but my red blood cells are not multiplying as they should be at this point in time.  So they checked my EPO level thinking that this may be the culprit to my anemia. EPO is a hormone that helps stimulate RBC's be produced in bone marrow.
Also I am still enjoying nausea most of the time and finding it hard to eat and drink. This is unusual and should have disappeared by now, so I spent Friday in the hospital watching radioactive isotopes go through my body! It was a 6 hour test so a very boring day for me. The results showed that my small intestine is not working very well and not processing food very well so this could be the reason for my nausea and aversion to food and drink. One of the side effects of many chemotherapies is neuropathy, which most people experience as peripheral neuropathy (tingling and numbness in hands and feet).  The GI doctor I saw believes that I have an extension of that called autonomic neuropathy, so the nerves to my intestines are "stunned".  The good thing is that he think with some pretty minor treatment it could be reversed within about 3 months.

Ready to have this line out.

It took quite a lot of tugging!

Thursday Jan 13th 2011. Clinic visit.

Well I've been a bit lax, I did go to clinic last week and didn't write anything. The main story from last week is that I'm not eating or drinking very much. I've lost 20 lbs and am a little dehydrated. Creatinine still came down a little to 2.9 and all my other counts are still headed in the right direction. Fatigue is still an issue, I guess a big issue that will last a while.
So since last Thursday I have added a liter of fluid IV everyday and thanks to an appetite stimulant have eaten a little more than last week. So we'll see where things are today...
Creatinine is down to 2.65 which is great, sadly I'm still here after 5 hours getting a blood tranfusion! All my other (white blood cell, red blood cell and platelet) counts dropped. Which is a little annoying but nothing to be concerned about...or so my doctor says. So I need to come back for another blood test next Thursday. They also said they will be taking out my central line soon which will be nice. I long to have a shower when I don't have to cover half my chest with press and seal!