We celebrated our third anniversary of living aboard this month and are finally, painting the rest of Gracie. Waiting for both fitness and the weather to paint meant we only got the roof done last year to undercoat. We haven't quite decided on the final colour scheme, although cream with burgundy trim is at the top of the list.
Stella finishes work this week, so we will have more time to do things on Gracie; our cruising pattern is severely limited due to haemodialysis three times a week. She is now training to self dialyse at Altrincham Hospital, although the challenge of a machine on a boat might be a step too far; we will see. She can self dialyse at Shaw Heath Unit in Stockport, whilst not ideal is better than being on a slot forever and try for transplant asap. Chris is due at Wythenshawe Hospital on Friday to have a CT Scan to investigate the kidney stone, resurfaced after four years, but with additional pain around the bladder.
The State of Gracie
This is the story of us getting aboard and our life on a 52 foot cruiser style narrowboat called Gracie
Tuesday 30 August 2016
Gracie Update - August 2016
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 1-2.pm, 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.
Thursday 16 July 2015
Gracie Update
Remiss of me, we now have a State of Gracie Facebook page and so this tends to be updated rather than the blog. So much has and hasn't happened since last posting.
Gracie has now been out of the water, in dry dock; we have to have some welding done; painting the exterior has started and interior is starting to take shape.
We blacked her ourselves at Portland Basin Marina at the end of the Peak Forest Canal. It was reopened in 2000 as part of the Huddersfield Canal reopening. Lovely people, can recommend it as an excellent place to have work done.
The gas locker floor needs replacing, combination of water underneath in the water tank, a slight lip where the water should drain and gas bottles grinding into metal meant a small hole developed. So we are getting a new floor welded in, the lip removed and some hardwood strips to rest the bottles on. The welder says it has happened previously, so a design fault.
The dogs continue to love this life. We are travelling along the entire Peak Forest Canal and going down into Manchester, via Stalybridge, or StalyVegas, as it is known locally!
We are slowly getting to know boaters and organisations, we have joined the National Association of Boat Owners and Stella has attended the boater's meeting in Birmingham and the Manchester and Peninne AGM. We have also put our money where our mouth is and become Friends of CRT; meaning that we are sponsoring CRT as well as paying a licence.
Have a good summer everyone
Wednesday 4 February 2015
Sunday 18 January 2015
Winter 2015
Christmas & New Year spent in Whaley Bridge and it snowed Boxing Day.
Due to The Peak Forest Canal being closed to a lift-bridge being broken; we have been moored in Furness Vale waiting for it to reopen since. It finally snowed properly today and we took the boys to the Torrs in New Mills, a fabulous Labrador heaven.
Both our cats died
over the Christmas period; Roddy on the 12th December and Joseph on the 2nd January. we had them 15 years; the dogs lay with them both as they died in front of the fire. There will be a little area of the Peak Forest Canal that will be the cats playground. Run Free both of you
Happy 2015 to everyone
Friday 14 November 2014
Upper Peak Forest and Early Winter Cruising
We have moored near woodland adjacent to Swizzells Matlow sweet factory this week, in order to stock up on wood - Chris has been hard at work collecting logs all week and we now have at least three weeks supply - will go back there this week and get some more. It helps the coal consumption as we burn wood during the day and put coal on to keep the stove in overnight.
We cruised up to Bugsworth Basin today; there are two views of New Mills, Derbyshire above - the Upper Peak Forest Canal is probably our favourite - the views over the Peak District are spectacular and then you get to the end at Whaley Bridge and get views like these.
Upper Peak Forest Canal
Sunset over the Basin
Teapot cottages on the way into the basin
Whaley Bridge Basin.
We have worked out to be back up here for Christmas, when I have 10 days off and if it's OK, we might even go cruising - if it isn't raining or icy!
Have a good one everyone - Christmas will be here soon enough
Friday 31 October 2014
Late summer again in October
Half- Term for most schools and my last week's annual leave before Christmas. The last of the holiday boats; some zooming by; some having lost the three day madness rule, ambling along. Then you have the boat movers, who seem to zoom allong anyways; especially between marinas.
The weather has been glorious - we gently cruised down from New Mills to Marple, where we spent four days and then onto Bosley Services, where we got to at 4,30 pm and I finished all bar one load of washing by 4 am!
The next day, we wtook the rest of the settee base out of the boat; scrubbed ad polished the floor with inseed oil. Looking at photos of gracie when we first moved aboard, you can see what last winter's rain and mud have done to the floor. WE did consider sanding and putting a seal on it; however, the dogs would slip, we would slip and the boat rocks - not an ideal combination, so scrubbing and polishing it is, until we find a good non-lip solution we like. This maybe when we redo the kitchen - We need another two cupboards, so are now looking for ideas on things we would like.
We spent two nights at Gurnett Aqueduct. Catching up with Simba's friend Nanook, an Alaskan malamute and then cruised down to Bollington, another favourite location for the boys.
Off to Poynton and then Marple ready for work again Monday!