Wednesday, 25 May 2016

Life Changing Events

as has been over a year since I last updated the blog; this will change. It has been eventful - after a year of engine trouble, leaking gaskets etc, we finally got the gaskets replaced and the water pump repaired and cruised the Cheshire Ring in September (after the Ring reopened due to the Bridgewater Canal being closed all summer in Manchester, when a mill collapsed). It was a lovely cruise, the sun shone and we found going round anticlockwise was a completely different  experience; locks behave differently; you see the landscape from a different angle.
Coming up Bosley Locks though, Chris had to set the last two Locks and we were both exhausted. Winter and we had a little holiday just before Christmas, but both had colds and over Christmas as well. Stella returned to work on the 29th December, but  we were both ill with a chest infection and so we rang and got an appointment with a local surgery in Marple (who subsequently took us on as permanent patients).  Stella explained the cramps she was getting and the doctor asked her to go for blood tests and signed her off for s fortnight. The blood tests showed her to be anaemic and she had to go for a further test, but went back to see the GP on the 18th January, as she still felt exhausted, breathless and generally unwell. The GP said he would get her kidney function tested in the further blood test and that was, we thought that.
Later that evening, the phone rang, Stella answered and it was the duty doctor saying the blood test results were showing renal failure and to go to hospital at once. Stella explained that she had a kidney infection some 32 years ago but nothing since. The doctor said she would phone the hospital and get back to us. Half an hour later, another phone call to say that another 12 hours wouldn't make that much difference but go to A&E the next morning.
So, at 9,am, on 19'January, 2016, Stella arrived at Stepping Hill with a small suitcase (as they had said she would be admitted), little did we know that this would then involve a three week stay in hospital and be completely life changing.
Once in Stepping Hill, the tests started and she was placed under the care of the Renal Unit at Manchester Royal Infirmary. Her kidney function is 6% and the Renal doctors explained that this means that as her kidney function had fallen below 10&, the likelihood of it returning to what it should be (60-65%) was slim to none and this would be life changing. Still in Stepping Hill awaiting a bed in the Renal Unit at MRI, she had loads of tests to discover where the 1,5 litres of iron given in transfusion had gone, endoscopies, ultrasounds, VC scans showed no bleeding and finally after 2 weeks, she was transferred to the MRI. This is where it became truly bizarre. The MRI had been able to get Stella's records from her treatment for glaucoma at Manchester Royal Eye Hospital, part of the same Trust, and had written to the GP listed on those records, our previous GP in Altrincham; who duly sent the blood test results over. The consultant saw Stella the following day and asked her if she was aware her kidney function was 21% in 2009 and 14% in 2014. The answer was no and so we have asked for an explanation for the non referral.
She was seen by the pre-dialysis team and was given the option of either hemodialysis and peritonealdialysis, which  remove wastes and excess water from the blood in different ways. Hemodialysis removes wastes and water by circulating blood outside the body through an external filter, called a dialyzer, that contains a semipermeable membrane. The peritonealdialysis is usually done at home but this was discarded as the boat wouldn't be big enough to take either the machine or the fluids, so it would be haemodialysis done three times a week for four hours at a time in the unit at Stockport. They thought about doing a biopsy, but the kidneys were so small and so calcified that it was felt nothing of value would be gained, but that they would build a fistula so the dialysis could be done there. However, the nephrologist determined that they couldn't wait for the fistula to be done and that a Tasio line would be fitted into her heart and tubes so that dialysis could start straight away. Date set for this the following Thursday, the 11 February and then she was told that she could go home. The joy, after three weeks to finally be back on Gracie.
The Tasio line was duly fitted and on Saturday the 13th February, she started dialysis. After 6 weeks, she returned to work on phased return, going to dialysis Tuesday and Thursday afternoons, off Friday and dialysis Saturdays. Actually, you set off at 12noon, wait for your bed to become available, you get on between, then 4 hours and then you come off and get home about 6.30pm, so a part time job you never get a holiday from.
Then the date for the fistula to be done, a further fortnight off as I can't use my wrist and then a week's holiday to make three weeks off. Finally,, after 15 weeks and a further litre of iron her blood tests are normal, hurrah.
Meanwhile, our cruising pattern is severely limited due to dialysis and renal transport, but we have kept in touch with Canal and River Trust and they have been lovely, we have a notice to stay in an area for the foreseeable future and things are looking up. Now, Chris has severe pain, kidney stones have made a reappearance and so they are now investigating and hopefully will refer him for lithotripsy to remove them.
Our thanks go out to all our family and friends who have supported us, and if you see us about the Upper Peak Forest Canal, give us a wave.