I will do a proper update in the next few days but I just wanted to ask you all a favour....

Would you please vote for my campaign to raise awareness about organ donation!


Click here to read more about my campaign and what it involves!


Thanks x

Just a quick blog to do a bit of plugging...

The Live Life Then Give Life guys have set up a new forum to all those affected by transplants.


Pre-transplant
Post-transplant
Charities and organisations
Donor Families

Come along and have a chat!

http://www.intoto.org.uk/forum/

Thanks x

Hi... Sorry I've been so delayed in updating! Still on a high from becoming an Auntie! Abigail is just gorgeous, not seen her today but will pop by my brothers house tomorrow to see them all!

Now to fill you in on my Fistulaplasty, it didn't go quite to plan as the narrowing was worse than they first anticipated!

I arrived at the Royal at about 7.30 and the nurse guided me to my bed at which two other ladies were sitting so I was a bit confused, she explained that (as usual) there was a bed problem, but because my mum had rang up and said we were on our way that the bed was mine! The nurse then took some blood, asked some routine questions, gave me a lovely sexy gown and that was it.... the waiting began. Breakfast came and I decided that instead of starving myself like last time I would chance a piece of toast, which I am glad I did as breakfast came and went and so did dinner (which I didn't eat). So more waiting and more waiting, (at this point I was having a kip on the bed.) I got changed into my sexy gown that flashes your bum and eventually went down to the radiology department about 2.30pm! I went into a cubicle, signed a consent form, and a form to say I was willing to take part in a stent trial (they are testing new covered stents) then I walked into the theatre about 2.45!

I was in the theatre for just over an hour this time as things weren't totally straight forward, the narrowing was bigger than they thought, It was a bit uncomfortable when they were pushing and pulling at my arm. Next they inserted a wire, a tube and a balloon into the vein and filled the balloon up with saline! At this point my toes were curling a bit and the nurse checked I was ok as it was very painful for about 30seconds but the pain went immediately when the balloon was let down! They had to do this with 4 different balloons to ensure the narrowing had gone (the surgeon was very impressed at how well I was handling the pain and said he would have been crying - typical man) A 4cm titanium stent (which is very expensive) was inserted through the wire and into my vein, it was then opened to the size of the vein to ensure the narrowing didn't return. I mentioned I was taking part in a trial before, this process is randomised and so at the begining of the procedure an envelope was opened to see which stent I would receive, turns out it was the plain old stent anyway so it didn't really matter haha! Although I think the surgeon will still take more interest in my scans when I return.

The tube was taken out and the nurse placed pressure on the wound for 10mins in the recovery room. I didn't even need a dressing on it. I went back up to the ward on the bed (I could have walked, but they insisted) I then immediately got dressed ready to go home and they said I had to stay till 5, but they could see I was dying to get away so at 4.15 the nurse said I could go. However a friend of mine (a nurse from another ward) turned up for a chat which was nice, so we didn't end up leaving till 4.45 anyway!

My arm is ok now, I can actually feel the stent under my skin which is a bit freaky! I haven't got a bruise whatsoever which is great. The only problem is, is when the nurses are needling my fistula it is alot more painful than it used to be, they have to push alot harder (its like they are hitting a barrier, or the skin is tougher) I'm not sure if this is them having to needle through the stent or not! Hopefully the procedure has been successful and I wont need anymore work doing on it in the near future, I have to go back for a scan in a month's time, so we'll just have to wait and see! Will keep you posted!

I am the proud Auntie of a beautiful baby girl called Abigail Louise Shaw, she was born this morning (05/09/08) at 7.15am weighing 7lb 8 and a half! She was born by emergency c-section which was a bit traumatic for Mum, Dad and Baby but all are doing well. I met her for the first time this afternoon, she had her eyes open and was so alert!

Theres some pics on Facebook, if you want to see, click here and here.

I'm the smiliest person tonight...wishing Fiona a speedy recovery x x x


PS - op went ok, It took an hour, 4 balloons and a stent, it was very painful but it's not feeling too bad tonight.

Just a quick blog...

Still no sign of baby, Fiona went in to be induced yesterday but nothing has happened yet! Will keep you updated...

All this baby stuff is sort of keeping my mind off the procedure on my arm that is happening tomorrow (am a little bit nervous,) I'm hoping I'll be well enough to visit my neice if she is born, I am determined I will be... even if my arm is dropping off, I'll be there! x

Ok so I'm always blabbing on about family, nights out and university so I thought I would tell you more about life on dialysis (that is the name of the blog after all!) I've probably told some of you this before, and showed you some of the links before but I'll post them again anyway.


First of all, here is a picture of me on dialysis! (ignore the chocy sticking out of my bag, its one of my weaknesses)

So I go for Haemodialysis or HD 3 times a week for 3 hours Monday, Wednesday and Friday on the twilight shift. I ring up the unit at around 3.30pm to see what time my machine will be ready as this sometimes varies. Mostly it is around 5.30 so I get to the unit at 5.15 as I have to take my blood pressure and weigh myself before going on the machine. I have to weigh myself because as well as cleaning the blood the dialysis machine also removes excess fluid, the amount of fluid removed depends on your dry weight. A dry weight is your weight without any excess fluid. Mine at the minute is 67kg. (1 kilogram = 1 litre of fluid) So if I go in at 68kg I would have to remove 1 litre of fluid and an extra 500mls of washback (that is saline used to wash the blood back after dialysis) so my total fluid removal would be 1500mls. This part of the process is called ultrafiltration and the amount varies from session to session usually on a Wednesday and Friday I would take off 2litres and on a Monday nearly 3litres due to the extra day of fluid because of the weekend. This is the reason that I am on such a strict fluid restriction of 500mls a day.

So here is a picture of where I weigh myself and take my blood pressure.

Heamodialysis consists of me having two needles (quite big ones) inserted into my fistula in my upper arm. They are a bit painful when they are inserted but during the dialysis session I can’t feel a thing. So a fistula is a surgically enlarged vein attached to an artery I have two scars where each needle is inserted (they aren’t inserted in exactly the same place every time, but not far off, causing quite big lumps on my arms). Heres a picture of one of the needles that is used.

I have to keep my arm very still during the dialysis session to ensure the needles stay in the right place. I think I’ve shown you this before but if you want to see how a fistula is made and used click here, it probably explains it better than me.

This provides access to the bloodstream for haemodialysis. The fistula buzzes all the time which is a good thing as this means the blood is flowing through it freely. One needle is to carry blood out of my arm and the other to carry blood back to me after.

So as well as removing fluid like I’ve already talked about, the machine’s main job is to remove toxins from my blood by cleaning it. While in the filtering system the blood flows through tubes made of a membrane that allows the waste products (which are much smaller than blood cells) to pass out through it. The waste products pass through the membrane into a dialysis solution (dialysate), then out of the machine. The "clean" blood is carried on through and returned safely to the body.

This happens over and over again throughout the dialysis session. Each time the "clean" blood is returned to the body, it picks up more waste products from the cells it circulates through, and brings these newly-collected toxins back to the dialyser (or artificial kidney – which is the white tube with the blue top and bottom on the picture) to be removed.

Fresh dialysate is passed through continuously to make the rate of the cleaning process as fast as possible.

Click here to see a picture of dialysis in action....

My machine is called Sneezy...

there are 6 beds at the unit, and 8 machines (2 spare) so they are named after snow white and each of the 7 dwarfs.

Here is a picture of the screen of my machine...

the information it shows is the amount of fluid I have removed up until that point, the time left on the machine, the amount of fluid I will take off by the end of the session and the rate it is being taken off (how much each hour) It also tells me how much blood is flowing through the machine at that moment, and how much blood has been cleaned altogether which could be over 50litres!!!

The grey round things are the pumps that spin and push the blood round, this can go at different speeds depending on the strength of your fistula and other factors. My pump speed is usually around 330, the highest I have gone is 350. The higher the pump speed the better the dialysis and the better my clearance which is how well I am dialyzing (mine is usually in the region of 70%) The machine also shows the pressure of the blood going into my arm by using a lights system, if the pressure gets too high or low the machine will beep. At the end of the dialysis session, the blood that is left in the tubes is washed back to me using saline, shown here...

So basically that’s dialysis in a nutshell. The main question I get asked is do you feel anything and does it hurt, the needles hurt a tiny bit going in but that’s it, I don’t feel a thing, I don’t feel the blood going in or out. I just sit back and let the machine do all the work I usually just watch the tele (all the soaps) whilst I’m on the machine and this passes the time. I would go to sleep if I could but there is constant hustle and bustle and machines beeping! The machine beeps if I accidentally lean on the tubes (containing the blood), if I move my arm by mistake or most importantly when the dialysis has finished.

So if you’ve got any other questions, just ask and I’ll do my best to explain.

Ok, so first things first... No baby news!!!! She is going for a routine hospital appointment tomorrow (she will be a week overdue then) so hopefully we'll know more then, maybe they will keep her in and induce her, who knows.

Seem to have had a busy few weeks really, can't pin point on things I have actually done. Met up with some friends and did some crafting (in anticipation of baby pictures.)

I also caught up with a friend I used to dialyse with Steph (who received her transplant a year ago) and one I still dialyse with, we went for a burger at Frankie and Bennys it was lovely!


On the dialysis front, nothing new really, had a few off days last week, vomitting and sickness but I'm lucky really, my really bad days are getting less and less as I get more and more used to dialysis I suppose. I have been good recently at taking my new tablets (Alucaps) and had my blood tests last night so hopefully it will show in them. I'm also counting down to my procedure on my arm (which is hurting today, for some reason!), the stent will be insterted under Local Anesthetic next Thursday and hopefully I'll be out within a few hours!

Thats it really, hopefully I'll be officially an Auntie soon and I will be able to announce the baby's name, which as yet no-one knows apart from Andy and Fiona!

I've decided that I have started talking more about family and friends rather than dialysis, so I'm going to take some pictures of the unit and talk you through my dialysis routine in my next post.... watch this space....