My other symptoms appear to be improving also as my protein leak has reduced to 3.4g/l this was well over 9.  Been told that my kidneys will never fully recover but remain normal in functionality.  My heart function has also improved “what is more interesting and very promising is the remarkable rapid improvement in systolic function on echocardiography.  If the SFLC’s stay suppressed for a long period then I’m hoping that the amyloid deposits around my organs (especially my heart) begin to reduce which hopefullt would reduce the breathlessness when going up hills etc.

I will continue to take my ramipril tabs to protect my kidneys and the simvastatin to check my cholestrol (which appears fairly normal at presnt 5.3 mmol/L.

My water retention is vastly improved and I only take furesomide tabs maybe once a month (weird?) for the swelling at the bottom of my legs/ankles.

My weight has come back to about 74kgs which is still slightly under my baseline prior to hospital.  The chemo rips you gut and throat cells about a bit so stomach has been a bit tender (acid reflux etc) so I’m taking some omeprazols to reduce the acid production and I’m told they are pretty good after a night out!

Most of all I feel human again and am starting to play 18 holes of golf (the hills can be tricky but take my time).

stay positive,

spk soon

Phil

The big review for me is in June at the National Amyloidosis Centre where I’m hoping that they give me the thumbs up and even news that a little overall reduction in the fibrils already attached to my organs has occurred, would be nice.  I know these can take a while to loosen off but if the supply has been stopped I could experience a reduction (i.e a sligthly less thickened heart wall? - This was 15mm).

I’ve got more energy each week and am walking the dog and playing a little garden golf but still get tired easily.  I’m hoping if results go well this month that I can return to work and a bit more normality.

If you or a friend or relative have this thing just keep believing - I know it’s difficult and that everyone has a different health situation - the trouble with this condition is that you don’t know you have it until something goes wrong and the amyloid has probably been pumping into your system for months maybe years.

Let’s just hope that they make a breakthrough with a drug that disperses the fibrils from the organs and understand plasma suppression drugs more so that dosages can be altered effectively.

speak soon

choo, Phil

I am feeling much better as the weeks pass and am starting to do some short walks and hit a few gentle golf shots in the garden.  It feels great.

Keep it real, keep believing, spk soon

Phil

In June it’s back to London for my 6 monthly check up so fingers crossed.  Thanks to everyone for the well wishes and hope to see you all very soon,

choo, Phil

On Sunday my blood counts were good and especially my neurophils (cells that fight infection) were 1.3 after two days at 0.90 and 0.91.  This was just enough along with other markers to say you can go today.  Strangely wasn’t that estatic purely because I still felt quite low and a little nausea.  Today is Friday and I feel a little better but it’s taking an age to actually feel stable.  I had my first clinic appointment back at Birmingham yesterday which I was able to walk to from the car so gaining some strength back slowly.

The good news is that I continue to improve and blood counts are nearly back to normal and my neurophils continue to climb and are now 2.1.  The Doc says I need to be patient but so far have done fantastically well although it doesn’t feel like it as I still feel very groggy.

My appetite is non-existent but I’m eating little bits regularly as I know this well help my recovery,  My mouth has no taste but again the doc said this is normal and will continue to recover.  I have to continue to watch my diet and for a few weeks and not eat out or anything that may contain bacteria (similar to pregnancy diet I suppose).  Rice Krispies and porridge (little quick packets) have been my saviour.

I’m able to watch lots of sky sports (golf and footy) now I’m home which is great.  It is also brilliant to see the kids again.  I get tired really easily and kip maybe twice a day but my night time sleeping is not good so will try to reduce this to one short nap I think to help.  Still taking lots of tabs to help keep the stomach settled and nausea at bay.

I’m hoping by next week I can feel more settled - it’s sometimes like feeling sea sick and not being able to get off the boat (I vividly remember a Dublin crossing on the Irish sea, when we had an end of season football party, giving me a similar feeling on the way back).

Anyway, really please with my results so far, although got to wait a couple of months before they check for SFLC’s again which will be the real mark of success.

Thanks everyone for your support it has made the whole thing bearable especially my wife Penny who has been there for my every need - she is so ace.

Keep it real,

spk soon Phil

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

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

Phil

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.

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