Post birthday

Hey All,
Recently celebrated being 18yrs post lung transplant - as you can see from the pictures everyone seemed to enjoy themselves and I certainly did, even though I was knackered at the end of it!!
So Winter seems to be here again - unfortunately. Don't you just hate the cold. November was such a mild month, too. I got used to not having to wear too many layers. Ah well, soon be the shortest day and then it'll be heading into the uplands of spring and summer and long light days. Can't wait.
My health is reasonably ok - a few minor problems but I'll survive.
Just thought I'd post a blog that didn't revolve around my health for a change.

Taken on a foggy morning from Westminster Bridge

Oliver Cromwell stands proudly!!!

Was in London recently, looking round the Houses of Parliament. That was very good. We had to be there early in the morning, but apart from looking in the Lords Chamber (they were debating that day), we saw all the other bits that you are allowed to see - the Commons, the lobby chamber, Westminster Hall, and the very small broom cupboard that the well known suffragette, Emily Davidson hid in on census night. She did this in 1911, so she could record her address as the Houses of Parliament, for of course, women were not allowed into the hallowed precincts of that male bastion of power!!  Courtesy of Wikipedia - On 2 April 1911, the night of the 1911 census, Davison hid in a cupboard in the Palace of Westminster overnight so that on the census form she could legitimately give her place of residence that night as the "House of Commons".^[5] The 1911 census documents that were uncovered state that Emily Wilding Davison was found 'hiding in the crypt' in the Houses of Parliament.^[6] In 1999 a plaque to commemorate the event was set in place by Tony Benn MP.

Bumble bee in the centre is me!

Having a quiet Sunday before the rat race of the week starts again. Although dialysis 4x weekly is good for me, it's too much like a job!!! At least before, I felt like I had some time off. But ,better to feel reasonable and with a brain again, than an idiot but with loads of time on my hands!

I'm having to fill out one of those government forms, again, about whether I'm fit for work. Duh!!! When would I have the time to go to work. Don't think any employer would want me with the amount of time I would have to have off. Dialysis 4x weekly, plus all the hospital appointments I have each year - last reckoning was up to 10 visits to various hospitals around the country plus visits to the GP. How do I fit it all in!! Then there are the few visits to see friends and family - I barely have time to eat, sleep or do my blog. Que sera sera
Happy Christmas one and all

Where have I been?!

It has been a very long time since I wrote on this page. Thankfully, since I last wrote, I have emerged, like a chrysallis, into a beautiful butterfly. No, I haven't had a transplant, unfortunately, but I have come out from the long dark depression that took hold over the winter months'. A serious case of SAD!!!
However, one bit of depressing news in this life of a flutterby, is that I now have to wait for my liver to become seriously cyrrhosed before I can have another shot at a kidney for by then, I'll be needing that well known dinner time favourite, liver and kidney - with, I think, a side dish of mash onions and gravy. Sounds good to me!
Apart from that little shock, all is well.
I am heading towards doing my dialysis treatment at home, hopefully early next year. I have already learned how to line the machine, insert my own needles, using the button hole technique, and can connect/unconnect myself to the machine and put in all relevant information and then clean up after myself. Just waiting for the housing association where I live to give the okay for the plumber to join the waste pipe to the down pipe from the gutter outside the front of the flat. Looking forward to doing it at home, though it will mean losing a room, in effect. What with all the equipment, and the lino that has to be laid and the special chair and etcs....! Still, anything to avoid getting up in the dark in the winter. 6am in the morning is not a fun time to be up if you don't have to do so!!
I'm getting more adventurous in my travels as well, this year. Been to Bath hospital for dialysis and also to the London Bridge Hospital. Oh, I also stayed with friends in Bradford-on-Avon and family in London whilst touring these hospitals. That was why I went really, not just to see what other hospitals are like!! What amazes me most about all this, is how each hospital has its own way of treating kidney patients. There seems to be no standard way of doing things, which you'd think there would be. Each hospital has its own little foibles as to how they deal with cannulating you, how they give iron, etc. etc. Takes some getting used to but I persevere.
I will be off on a short trip to London again, in November - my birthday in fact - to go and see the Degas exhibition at the Royal Academy. Looking forward to that.
Hopefully, will enclose some piccies next time I write. :-))))

Kidney Dialysis Pt 2

In an earlier blog I said I would let you know more about dialysis, dry weight and etc's.
Having CF and diabetes, I am checked fairly regularly for other health problems, so imagine my surprise when told there appeared to be something wrong with the 'waterworks' and perhaps I should see a kidney consultant. Opted to see one in York rather than Leeds, where I was seeing the CF consultant.
An appointment came for July 10th, 2005 and I went from knowing absolutely nothing about kidney failure to being told I would be on dialysis by the end of the year, all in the space of about 10 mins. Some registrars have a lot to learn about letting people know information about themselves in a better way!! Once I'd recovered from that shock, she invited the consultant Dr. Worth, a lovely person, to come and talk to me about the prognosis.
Fortunately, I lasted until 3rd January, 2006 before I started dialysis.
It is a huge shock to the system, both physically but also emotionally. As the weeks and then months and then years go by, you realize this is it for the rest of your life, unless you are fortunate enough to get a kidney transplant - more about that on another blog.
Initially, I felt so unwell, I just slept throughout the treatment. It did help pass the time and made it seem more bearable. As time went by, I started to feel a bit better and so didn't sleep for the treatment and started to read instead.
The realities of dialysis are as follows. A treatment lasts for 4 hours and you do this three times a week. I do Tues, Thurs and Sats. Due to financial reasons and patient numbers, it cannot be done everyday, though ideally that would be best. The treatment removes toxins and fluid from your body, which would ordinarily be done by the kidneys themselves.
When you arrive for a treatment, you first weigh yourself. This number is then subtracted from what would be considered your real weight were all things equal. The figure left is then deduced to be the amount of fluid that needs to be removed from your body during this session.
As I pass no urine, all fluid I take in, plus fluid that occurs naturally in food, is just stored in the tissues in my body - hence swollen legs, etc.
Two needles with very long tubes are inserted in the arm, into what is called a fistula - an artery joined to a vein- and blood is taken out through one needle, passed through an artificail kidney and then sent back into the body via the other needle.
Alongside the amount of fluid that you are advised that you may drink in any one day (1Ltr) you also have to follow a fairly restrictive diet. The diet is low in foods that are high in potassium and phosphate. So, for example, all dairy products are very restricted. If you have a yoghurt you can't have any other dairy product in that days' food. 200mls milk per day is allowed, but you must use this in drinks and bowls of cereal... doesn't give you much to play with!!
Foods high in potassium are coffee, chocolate, bananas, potatoes... to name but a few. Fortunately, I don't suffer with high pottasium levels, so don't have to worry about this so much. Makes you wonder what would be left to eat!!!
Will write more about the emotional side another time.

Stomach Problems

Well, I joined the adult forum on the CF Trust web site and someone suggested that I get tested for C.diff (clostridium difficile). So I have made an appointment with my GP for tomorrow, so presumably another poo sample will be sent off. Sent off one for the helicobacter bacteria a week or so ago.  Why don't doctors think about all the different bacteria that could have gone AWOL in the gut and test for all of them when sending off a sample. Short term thinking to my mind. Surely its better to try lots of things in one go, rather than me having to take up time seeing the doctor and then the use of plastic bags to put multi samples in, etc. etc.
I also rang the lung transplant clinic at the Freeman hospital in Newcastle to query one of the immunosuppressants that I take. I noticed some years ago that when they doubled the dose my stomach got a bit unhappy (!) and that maybe this is contributing to the problems. So tonight I will stop taking this particular drug for a week (as reccomended by the Freeman) and then slowly re-introduce the drug. I have high hopes about this procedure as I am pinning my hopes on this being the problem. So everyone, keep your fingers crossed for me. I am in such distress about this, I don't know what to do anymore. I'm losing sleep, because of the pain, not wanting to eat and so losing weight and the whole thing is just impossible.

Sunday Morning

Just enjoyed bacon and egg sarnie but know I will regret eating this, as bacon was very salty and I will be thirsty for the rest of the day. (Trying to cut back on fluid so I can get down to dry weight of 49 kgs.) Will explain dry weight another time.
Going to Designer Warehouse for Andy, to buy T shirts and etc's. I will look for some ankle boots I think but don't hold out much hope. I want stylish but made for depths of winter and snow. I bet the two are incompatible!!!
Later on...
As I thought, couldn't find anything I liked but Andy came back laden with bags!!
Really thirsty and serious stomach ache.  I wish that eating didn't give me such horrible stomach problems. Makes eating a very unenjoyable process, if you know that by putting food in your mouth you will incur pain and swelling.  I know the symptoms are very similar to IBS and I spent hours on line yesterday looking at what to do if you suffer with this condition. Seems that one idea is to eat really unhealthily. So, out with all the roughage and fruit and veg, etc. and in with all the white bread, white pasta, and all those other unhealthy things like chips rather than jacket potatoes. Having said that, though, I eat a mixture of good food and 'bad' food and it makes absolutely no difference as to how I feel after eating. Perhaps it is just having CF. Must write to the Trust and see if there is any research into this. They seem to be more concerned, quite rightly, with lung research than with digestive research. Will look at their website and see what they have. Will report back.

Weight Gain

Been looking at weight gain sites to get ideas of foods that I could eat to try and boost my weight. Due to horrendous stomach problems, not bacteriological problems, having trouble eating so am losing weight. Dialysis uses about 400 calories per session but all I want to do is drink instead of eating and of course that is not good for me either! Really fed up with the whole thing. Sometimes just looking at food blows my stomach into three times its normal size. Is it the kidney failure, having cystic fibrosis or the cocktail of drugs I'm on? Blessed if I know.

Kidney Dialysis

Hi everyone,
Just starting this as I thought there might be others out there who are also on dialysis.
I am hoping to learn how to buttonhole soon but because my fistula is in such an awkward position on my upper arm I am going to have to learn how to cannulate with sharps first before I start on the blunts. I am understandably nervous about this and wonder if anyone else has been through this process, too.