My Neurophils are on the up!
I’m so pleased because this means the bone marrow transplant has worked. Get in. Pen and I were in tears when they told me. They will monitor these new white cells along with BP and water retention over next 2 to 3 days. If all goes well could go home on monday.
Unbelievable really when I look back at the mess I was in last 2 weeks. Still, a long road to travel but I now have an improved chance of the amyloid deposits slowing or stopping for a longer period.
Keep it real, Phil
Filed under: Latest News on March 19th, 2010 | No Comments »
Hi folks, I’m still here but been through a few low days when to be honest, all I’ve done is try to sleep.
I’m in what they call the ‘nadar period’ which I’m told means that you have no white cells etc. This is scary because you can pick up infections easily. My problems have been i got an infection, along came a temperature and my blood pressure dropped. Normally this is no big deal but is more difficult for amyloid patients, in my case with cardiac and renal involvement. Net result anyway is that I’ve put on 7kgs of fluid.
The challenge is to get this off without upsetting the kidneys, heart which is tricky I’m told. My nausea has bean a little better but not eating much. I seem to have no saliva as my stomach and mouth continue to recover from chemo.
This is day ‘plus 10′ so hoping I’ve hit bottom now. The cause of the infection could have been a bug that crept in down the hickman line. As a result the line has been removed. My next goal is to get back to my baseline weight of 78 from current 85!
Speak soon Phil
Filed under: Latest News on March 16th, 2010 | 3 Comments »
7 days since the stem cells were received and chances of infection are high therefore level of isolation is very important.
Main symptoms are: sickness, diarrhea, lack of appetite, sore dry mouth, swollen cheeks, aching all over, dry skin and feeling tired.
The doctors and nurses are great and they have an arsenal of drugs to help.
There are regular blood tests and observations and drugs and drips are altered accordingly. Recently I had anti sickness, anti viral, blood pressure and pain killers by mouth and platelets and fluid by drip through the hickman line.
Apparently next week my blood counts will start to go up and i will start to recover.
Phil
Filed under: Latest News on March 15th, 2010 | No Comments »
Day 5 - stem cells are back in . Cool. The room smells of sweet corn (I’m told) due to the cell preservative! The days are going very slowly and there are some really tough bits but keep thinking of the goal to shut it out.
Fantastic to see my two daughters yesterday. It’s so easy to take everything for granted when you’re well. Anyway ready for reaction to chemo now where over the next few days my blood count will hit the floor. Mamma mia! Big thanks again to my wife penny whom I love soo much.
Filed under: Latest News on March 7th, 2010 | No Comments »
I’ve now had 2 days of the chemo procedure and today is the stem cell rescue.
I will be having this over the course of 2 days. Golfing up well so far. Been sick a few times but expected this. Getting the cells back in is all i’m focusing on now. Deal with rest later.
The support i’m getting is great from family and friends and means soo much you can’t imagine. Naturally, my thanks to the staff also from tea person to nurse to doc. The doc hierarchy is amazing - registrar - what’s that all about!
Anyway speak soon - keep it real. Phil
Filed under: Latest News on March 5th, 2010 | No Comments »