The Life and Times of a kidney Patient

Well this week has been quite uneventful, so there isn't much to say really. I had to go to the hospital for more antibiotics last Saturday and sat there for 2 hours before they did anything. When I got there they didn't know anything about me, even though it was all in my notes and my name was on the board.

I had to go back yesterday and again this saturday coming, oh the joy. We have put our house on the market and a couple are coming round to see the house tomorrow so I am stressing about that. It's on low key until we can declutter, but these people have been looking for ages. I spent today flapping around the house, and am panicking. I made myself sick from overdoing it.

My husband has been off work this week as his Colotis has got bad again, so I am worrying about him too as he's in a lot of pain. I've booked him in to see his GP tomorrow.

Other than that, not much has happened.

Well The silver nitrate seemed to reduce the size of the growth of skin on my line.  However, now the growth has become infected and the line i infected on the outside, inside my body.  Normally they would remove the line. but as this is me and its my last chance for home dialysis they are going to try and fight it.

So thats where I am at the moment.  I will update more as and when it happens.  I am staying positive for now and not going to worry about it until it happens........

Well I've decided to change the heading of my blog, oh the excitement. Nothing much has hapened this week. My lump has healed up OK after the docs took a knife to it. There is only a small scab and lump left.

The CAPD nurse came for a home visit yesterday and all is well, touch wood! she is coming back this afternoon as I have excess skin growing round the exit site of the tubefor hom dialysis and she is going to cortorise it this afternoon as they can be infection risks.......which I don't need.

As I am now on the transplant list, I am resting up and taking life easy so I am it for when the phone call comes. I saw my GP on Friday and she thought it would be best to sign me off for 3 more months to get my body up to its full health, well as healthy as it can be. This is because I haven't been well for over a year and she wants me to settle onto home dialysis and everything again before I put the added stresses of work back on it.

This is fine with me, but I feel like such a fake being off work as I feel OK at the moment and don't see myself as being ill....

Well thats it really, boring this week I'm afraid.......

OK, from the title you would think I was depressed about my condition, nope! It's my mum's birthday on Saturday and I thought it would be nice to send her a bunch of flowers. The main reason is because we are giving her money towards her trip to France. So on Tuesday I scowered the web, not my usual source for flowers, but I am fed up of paying too much in tescos for not much at all. I found a website and some really nice flowers and ordered them to be delivered to me, as I can't get them delivered to mum at work and the company didn't do Saturday deliveries. Any way I paid £16 for the bunch and thought they would be nice. No. The bunch is smaller than the ones I would have got at Tescos fofr £4.99! I am so upset and dissapointed!

I have emailed them to complain, the first email came back as a failure, so I found another email address............I am so gutted. I'm not giving them to my mum, she'll think I am really tight!

It's just another crap day this week! I had my Heamodialysis line removed 2 weeks ago tomorrow and this should have healed by now, but no, not me! My golf bal sized lump decided it was staying put. All weekend I felt really sick with headaches and stayed in bed or on the settee. I woke up on Monday morning and thought my throat had been cut, there was blood everywhere! Luckily I had dialysis clinic on Monday. They did the normal, blood pressure, weight and temperature and then I went in to see the doctor. He decided to evacuate the blood clot and got a senior doctor to come and help. They pulled and prodded and I nearly threw up. They got most of the blood out and left me sore and bruised, more so than before. They then explained I have an infection because of it. I still have a small lump, and it is still sore and still bleeding. I'm back on antibiotics....yippppppeeeeeee!

I'm sat on my settee waiting for my delivery of dialysis solution, it's raining\hailing and really windy. I was looking forward to getting out of the house to go and see my parents with the flowers for my mum, now I'm jst going to cry. Sorry this one is a bit down, silly really as the kidney stuff i an cope with, it's just something else, but this whole flower business has really upset me!

Even being told I am now active on the transplant list hasn't cheared me up, how silly is that?

Someone please slap my face and tell me to pull myself together, this is so stupid!

I'm a litle late this week, but decided to go to work with my mu yesterday. She's a Head of Department at a college. Her department is for students with learning difficulties so I went to see what she did. Up at 6am and home at 6.30pm I was so tired......I've only just managed to get up!

Any way, last week I spent most of the time having blood tests at the hospital ready to have my Heamodialysis line removed from my chest on Friday. I'd like to say that all went well, I was really good with my food last week and so my bloods were OK. I had the line removed, this went OK, although the pain soon set in afterwards.

I was only in for the day as you are awake when its taken out as its done under local anesthetic. So I came home and sat on the sofaall evening. I didn't sleep much and at about 5am Saturday morning I touche the dressing to find a huge lump! Hubby checked it and yes another heamatoma! (This is a collection of blood kind of lick a bruise I guess) Any way, I was in agony because the lump was the size of a golf ball and where the skin had stretched it was pulling the stitches.

So up the hospitalwe went and I argued with the doctor to take the stitches out as this has happened before and relieves the pain. After a while she decided to look at it and admitted the stitches were being pulled. So they took them out and guess what? It relieved the pain!

They put steri-strips across thecut to keep it together and re-dressed it and then I had to sit around for 2 hours to make sure it didn't bleed, as this is a major artery going into the heart!

So I spent Sunday on the sofa, as hubby idn't want me to put strain on it. Every time I do somethig it hurts. So he has been putting me on dialysis as well......suits me, he can get into practice this way and I get a break! It's getting better, but the lump is still there and is not getting any smaller. I have to be careful as a collection of blood like this can become infected so I'll keep an eye on it and ring the ward if i get worried, but at the moment I think it's OK.

OK, I went for the repeat blood tests and the results weren't great, but they weren't bad either so I was a tad annoyed.

Any way, food wise I was good all weekend and stuck to low potassium and phosphate foods. I went back to the hospital for more blood tests and my good behaviour has paid off. I should explain that the hospital is over doing the bloods as I am having my heamodialysis line removed from my chest on Friday. This procedure is normally done while you are awake. However, I was awake when my first ever line was put in and it was the mot horrific experience I have ever had......and that is saying something. You don't feel the pain, but there is a lot of tugging and pulling and its horrible. So this friday I am being sedated. Due to previous problems I have had with ever procedure, they are being very thorough, hence all the blood tests. I have to go and have more done tomorrow.

It also turns out that I didn't drink enough over the weekend so dialysis has been a bit painful. This is because I use a machine at night that sucks fluid out, when you don't have any fluid to come out, this can hurt.....

I had a phone call from the transplant co-ordinator on Thursday to say i was being put forward for activation on the transplant list. I've been on dialysis for 2 years in May and normally you would be on the list by now, but I haven't been put on due to all the problems I have had. Needless to say I am still waiting for the phone call to say I am active on the list. However, my husband and father-in-law are the same blood group as me so we are going down that route as well, I don't want to as I don't want to put them through ll this....we have had plenty of arguements about it. I am running out of options though as access for dialysis is now limited due to the problems I have had. Once the line for home dialysis gives up I will be back on heamodialysis and my access for this is very limited too. So I don't have much option.

Well thats it for now, pretty uneventul I know.

The art of being a Kidney patient is, apart from keeping your chin up and taking the tablets, is to control your fluid intake and your diet.

You see the kidneys filter out excess vitamins and minerals which your body doesn't need as well as the waste. Things like Potassium found in most foods and phosphates in dairy and meat.

If you don't keep these under control you can get other complications such as problems with your heart and bones.

In order to make sure the dialysis is working for you, every month you have to have blood tests to check these levels as well as others, including the crap which in medical terms is known as creatinine.

Well yesterday I had to have these bloods. Normally if you have some kidney function you still go for a wee and have to do a 24hr urine collection to go with these bloods. However, I do not go for a wee (lucky me I hear you cry), think of the time I spend by not going to the loo. I do have drainage bags from my dialysis though. This is the fluid which I have put into my peritoneaum overnight, has sat there for an hour sucking out the crap and then has been drained out into very big bags. In a night I go through 19 litres of fluid plus what ever extra I have drank during the day is taken out as well, so its very heavy.

So yesterday I rolled up to the hospital with my drainage bags and had my bloods done. Only the lab sat on my bloods for 4hrs before they decided to process them. As a result my bloods were really bad and at 6pm I get a phone cal from the nurse telling me I have to do extra dialysis and go back this morning for urgent bloods to see what is going on.

Whats the problem with this other than the inconvenience? Well as I had been really good, food wise, so my bloods should have been good, once I left the hospital yesterday I ate potatoe crisps and chocolate.......very bad as they are very high in potassium. If my potassium goes over 7units my heart decides to play silly beggers and I have to be revived!!!!

So I panic, worry all night about my bloods. Get to the hospital this morning for bloods to find its nothing too much to worry about..........

However, I am still waiting for the results of the bloods this morning. I am lucky that, although I live 30mins (on a good day) from the hospital, my husband works in the town the hospital is in so I am currently sat in his office having a break from sticking labels on leaflets to write this.

I'll update this more when I know more...........that depends on how long the lab thinks urgent should take!!!!!!

OK, where to start. I have been a kidney patient since December 2004. My kidneys went from 50% function to complete failure over the space of a weekend in May 2006. Since then I have been on dialysis. Last year was the year from hell. It wasn't actually my kidney disease that put me in hospital for the majority of the year, but the procedures to give me access for dialysis.

There are two types of dialysis. Heamodialysis which uses an artificial kidney. Your blood comes out of your body and into a machine where there is a filter, this filter is the artificial kidney that filters the bad stuff out of your blood. Your blood then goes back into your body. The amount of time spent on this machine depends on whether you have any kidney function and if so how much. The less function you have the more time you do. As I have no function I was doing 4 hours three times a week. You can do this from home, but my hospital doesn't allow this so I was going to the hospital for this.

Peritoneal Dialysis (PD) uses the body's peritoneaum to filter out the bad stuff. You have a catheter in your abdomen which is how you get the fluid in and out. The dialysis solution contains Glucose and this along with the peritoneaum membrane is how the nasty stuff is filtered out of the body. This form of dialysis is done at home either manually four times a day or overnight using another machine while you sleep.

To begin with I could not have PD due to the type of disease I had. However, this all changed last year. Once my kidneys failed it was made available to me. I was on heamodialysis and for this you have a fistula. A fistula is where the vein and artery in your arm are sewn together to make the blood flow faster and then each session you have 2 big needles stuck in your arm. my first fistula failed and the second one got an aneurysm on it which got infected and had to be removed. During the operation my potassium levels soared (Potassium is one of the minerals the kidney filters out of the body). This caused my heart to go funny and the docs had to revive me. They ended up tying off the fistula. I was in HDU for 3 days. During this time I got a blood clot in my arm which had to be removed while I was awake and my arm was left open to heal on its own.

So the docs said I had no proper access for heamodialysis and had to try peritoneal. The operation for this didn't go too well either! I have a blood clotting condition so am on warfarin which has to be stopped each time I have a procedure done. When I had the first catheter put in I got a blood clot on my lung. I was given a drug to disperse this whih gave me a heamatoma, then I got scepticimia and then I had to have the heamatoma removed, again I was awake for this.

This catheter worked for a couple of months and then I got a severe case of peritonitis. This is fatal if left, but the docs managed to control it with 2 lots of antibiotics, however one of these dropped my white blood cell count to 2 so I was susceptible to infections. Once it reaches 0 you die!

Still i overcame that and came out of hospital. A week later my catheter stopped working. After 2 weeks of trying everything to get it to work, I was operated on to clear it and reposition it, but this was not successful.

After 2 weeks the catheter was removed. The Thursday before Christmas a new catheter was put in in the opposite sde of my abdomen to the first catheter. This has been in for 2 weeks and I have been using it for a week with no problems so far.

Whilst all this was going on I was having heamodialysis through a temporary line which is put into the artery in your chest which goes straight into your heart. You're awake when this is put in and it is not at all pleasant so I always ask to be sedated.

I am now waiting to have this temporary line removed and have decided that no matter what, I am going to write about it. I am hoping this helps me deal with my illness. I am also hoping someone will be interested in this and will talk to me about it if they want to know anything, otherwise I'm going to look like a right weirdo writing to thin air!