FREEDOM !!

As you can probably tell from the title I made it back home finally, nearly setting a transplant record, but someone did it two days faster than me once. I have been incredibly lucky as patients often go five weeks in hospital, compared to my three, and are often spending a lot of that time with morphine pumps knocking them out so that they can bear the discomfort. I got off very lightly with only about four days of feeling really bad in the three weeks I was in hospital. One thing for sure if anyone comes near me with Mephfan again I am going to run away, I think you can only do that once in a lifetime.

So I am home but am a curious mix of fine (in mind) and wobbly (in body), being at home gives me so much positive mental energy, distractions, cooking and the ebb and flow of the household all hold me in a warm embrace so I am really happy to be here rather than brooding in my cell in the hospital. The wobbly starts with the number of pills I need to support the transplant, constant profound fatigue, residual nausea and half functioning digestive system, with lots of rest during the day when the house is quiet, with anti-sickness meds most of these symptoms are manageable. Each day I try to set myself gentle targets or tasks which take an hour or two, yesterday I rewired a plug from round to square pin in the Aston garage so I could plug in the battery charger and bring it back to life. Today I am going to make a logistics plan for the Maggie's Bike and Hike challenge and unpack from the hospital. These little targets along with a lot of sleeping, keep my mind busy, but can be dropped at any time when the wave of fatigue hits. It can be quite funny when this happens as its almost like being drunk, I just have to lie down and can't even finish my sentences when it hits.

Overall I can't believe how well I feel already only days after feeling so bad, having an immune system is a great thing! One thing I am not looking forward to is going to the twice weekly clinics as without my Hickman line (they took it out Tuesday) all the blood samples are taken by needle which I hate, specially as my veins are shot and it often takes them a few goes to get one to bleed properly. However at least I no longer have pipes coming out of my chest to frighten kids and dampen my romantic life (though fatigue has taken care of that for a while anyway).

I am setting Monday as my target to start very gentle physical exercise, I need to get a heart monitor and a pedometer to be able to measure progress, and to ensure I do not overdo things. My friend Gary Henderson is going to put together some advice for me, as he coaches retired folks in swimming he has a lot of experience with folks building up from a fragile base in the right way.

As to fun I am looking forward to the Maggie's bike and hike as I am so far ahead of schedule I think we will all go up and stay in the lodges we hired, as the participants do the walk we can drive along to meet them at the checkpoints. I can sleep or help with the support team as my strength dictates. So far wobbly tummy and nausea has kept the cork in the champagne bottle but at some point over the weekend perhaps half a glass might be allowed. As my counts are nearly normal for white blood cells I am not needing to be in isolation, I need to avoid cuts and actively ill people as my platelets are low and my immune system is relearning each bug so I don't want to overload it.

So "free at last" as the famous speech goes, if I am average I will end up back in the hospital twice in the next two months with fevers or temperature, if my luck holds and I am careful I may be able to avoid this and just have a slow steady progress to a less wobbly me!

Thanks again for all the visits, cards, emails and blog comments over the last three weeks they have really sustained me in the rougher days. I will probably try to keep you posted on a bi weekly basis now we are out of the critical zone.

Cheers

Gerry