Happy New Year Everyone!

The New Year got off to a great start as I received a phone call on New Year's Eve to say that my blood results are the best they have ever been! My creatinine was 161 (previously 187, and when on dialysis in the 1000's) My Haemoglobin was 12, and my White Blood Count was normal. This is being closely monitored at the moment as they have reintroduced the drug (in a small dose) that made it go haywire before! This meant extra trips to the hospital for tests, but it is worth it in the long run, because as soon as I am settled on the drugs they will hopefully reduce my steroids and I will look less like a chipmonk! Lets have a quick game of spot the difference....




I spent New Years at my Brother's in-laws house which would not have been possible had i not received my transplant, as I would have had to attend dialysis with it being a Wednesday night! I had a great night, we had a takeaway and saw in the new year with some champers! Click here to see some pics of the evening!

While I'm here I also wanted to tell you that I received a reply from 10 Downing street regarding my Battlefront campaign and Organ Donation.

The letter wasn't written by the Prime Minister himself... but it did say "Mr Brown was sorry to hear of your health difficulties."

It went on to discuss the suggested opt out system...

"In its report, the Taskforce does not recommend introducing an opt out system for organ donation in the UK at the present time. The Taskforce felt that whilst it would have the potential to deliver benefits, it would present significant challenges that may not be necessary in order to deliver the desired increase in organ donation rates.

The Government has accepted this, but in the light of the Taskforce’s view that donor rates can be optimised successfully without a change in the legal framework, has set a challenge to see 20 million people on the Organ Donor Register by 2010 working towards 25million by 2013."

The reply was useful and it seems that the government are committed to increasing the number of people joining the Organ Donor Register...

"The Government is firmly committed to seeing organ donation rates rise significantly and is fully supporting the implementation of the recommendations in the Taskforce’s first report. A large programme of work is already underway, which includes:

• Each Trust appointing an organ donation ‘champion’ to discuss organ donation with families as part of end of life care where appropriate;
• Recruiting new donor transplant co-ordinators across the UK; and
• Establishing a UK-wide network of organ retrieval teams across the UK to ensure timely and high quality organ removal from viable donors."

I was however disappointed that the letter did not mention the campaign whatsoever,
No mention of Battlefront, nothing!!!

Oh well a reply is better than being ignored I suppose!

Bye for now x

Was so busy wittering on about things that I completely missed out another hospital appointment I had been to!

It was my 3 monthly check up with my consultant on Wednesday morning (before uni) there were a few things to talk about, we discussed my tablets which I will need to change soon (my alucaps) because if you take them for more than 3 months the magnesium builds up in your bones and makes them weak. I am disappointed as these are my favourite phosphate binders (having favourites, how sad am I?) because they aren't too big and dont take much fluid to swallow. The new tablets he will put me on in a month will be BIG chewable ones that taste horrible apparantly. ewwwwww, something to look forward to! The consultant also said that my HB (hemoglobin/blood count) is low and that I would need Iron infusions to give me a boost and push this figure up! I had been feeling tired recently, thought it was just normal, it was probably down to this. He also mentioned my high pulse again, his solution is that I am unfit and need to do more excersise to bring it down, its easy for him to say, I cant exactly run a marathon after dialysis, in fact sometimes I struggle to make the car without feeling lightheaded. Finally he had a look at my arm and felt the stent and agreed with the surgeon that all was fine!

So some things to change but on the whole an O.K report! (Don't know how all this slipped my mind!

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....

Hi, sorry I've been lazy in updating, thats because not much has happened in the world of Holly this week!

Me and the folks took Fiona out for lunch a couple of times to keep her occupied while we wait for the little bubs to make an appearance, think she is getting fed up waiting now, then again I think we all are. We also went out with her family for a meal together before the little one is born, this was a great laugh and I got to wear my new dress, YAY! I also them my final baby present which was a bib with "If you think I'm cute you should see my Auntie Holly!" written on it!

I've also been busy this week making scrapbooks to put pics of the baby in, they are coming along well and will be a great way of preserving memories for years to come!

I also ordered myself a new dell laptop in pink (obviously) so thats due to arrive on the 28th, well in time for my final year of uni!

On the dialysis front, nothing new really, I felt sick a couple of times during dialysis but I think this was due to me having a large lunch before my session, this seems to be a problem because I have to weigh myself before dialysis to calculate how much fluid I need to loose, this is done by taking my weight and then calculating the difference between that and my dry weight. So if I go in today and my weight is 68.9kg I would need to loose 2.4l (2400ml) as my dry weight is 67 and then an extra 500mls for the washback through the machine at then end of dialsys. However if I have had a big lunch the scales can't calculate what is food and what is fluid and so I may take off more fluid than necessary and obviously feel ill, may get cramps and have trouble getting my blood pressure at the end of the session.

However my latest bloods weren't too bad, my potassium had come down to 4point something, it needs to be under 5 as to much can cause heart problems. My clearence has gone up from 71% to 73% which is good news, as if it was decreasing I may need to put up the time I spend on dialysis! ( I'm one of 2 people in the unit that only do 3 hours)
The only problem with my blood is my phosphates (again) I like these Alucap tablets a lot more than other tabs and I have no probs in taking them, I just cant seem to remember to take them "every" time I eat!!! Also my calcium is still a tad high due to those other tablets I was on so hopefully by the next bloods this will have reduced.

So today I am off out for lunch with my folks, Fiona and Mum's friend who is over from Ireland (not decided if I'm going to eat yet, as I don't want to feel sick again on the machine later on.) I may still go along though as I don't want to miss out on any gossip!

Just a quick blog to let you know that all went well at the appointment with my consultant. My calcium is a bit high, due to me taking calcichews and alphacalcidol so he has stopped both of these, the calcichew permanently and the alphacalcidol temporarily. So my phosphate binders have been changed (yet again) this time to Alucaps, I have taken these before a few years ago so I should be ok with them.

I asked him about my arm but he seems to think it looks ok (I still think its getting bigger) I told him that the ultrasound people hadn't been in touch about another scan so he gave me the number direct to ring them when I got back from Ireland. By coincidence, they rang later that day to book me in, so I'm having it on the 21st July, fingers crossed all is well and I won't have to have another angioplasty.

So thats about it really, I spoke to him about my aranesp and he suggested I could inject it myself on the saturday to save me taking it with me, I think the look on my face told him what my reply was! Theres no way I could do that, and my Mum n Dad couldn't either, so I'll take it with me and have it through the machine on Monday.

So I'm running around like a headless chicken, getting everything ready for goin, cramming everything in my case (although it still won't close) getting my meds sorted, and I also have to take my dialysers with me too, which is the artificial kidney that clips on the machine and filters the blood. So thats something else to remember!

Anyway best go and carry on, so much to do, so little time (you can tell I'm not used to going on Holiday.)

Going to try and get to an internet cafe during the week, will update if I can, if not, See you in a week! x

So I got the date for my procedure, its the 12th of June, which is the week I go back to my placement, typical! I received the letter a couple of days ago and it says that I need to be at the ward for 9.00am and should expect to stay one night, however yesterday I received two more letters (all about the same thing) one from the nephrology and one from the radiology department and one of them said I had to be at the ward for 7.30am!!!

My mum rang up to check which was correct and just my luck its the 7.30am one, due to them having to take bloods before the procedure is undertaken! I also asked mum to ask If I was able to eat normally the day of the operation, but guess what, no, I have to have a light breakfast at 5 o clock in the morning!!!! I don't think I'll be able to stomach that! I also need to ring the ward and ask when I need to stop taking my asprin tablets (these are used to prevent clots and stop strokes) If I were to take these as normal before my procedure I could bleed a lot (as it thins the blood) and of course, I don't want that!

So I'm hoping all goes to plan, and the procedure is a sucess. I'm going to do my best to try and not stay in over night! I have been known to get dressed, put make up on (extra blusher) and straighten my hair to make myself look fit and well to go home, even if I am feeling rotten! But hey its worked before and I'm willing to try anything!

I have been in touch with Uni and have told them the date of my op, they have been helpful, but still insist on me completing 144 hours, they won't budge on this. I'll just have to squeeze my hours in, when I'm feeling up to it, but obviously I'm not going to go back too soon, as I don't want to risk messing up my Fistula. I'm aiming to work the Monday, Tuesday and Wednesday before the op and then the Wednesday, Thursday and Friday the following week after the op, but we'll see!

So I'm enjoying my 2 weeks off, not really done that much, just making the most of relaxing and conserving my energy for when I go back to placement!

So I went to see the consultant...

All in all it went well. I still sometimes have trouble with my blood pressure at the end of dialysis so he increased my dry weight again, which (as usual) I wasn't impressed with, but he is so lovely I couldn't argue with him! The only thing that was dodgy about my blood results was my phosphate level (unsurprisingly) as I have an aversion to taking my phosphate binders a.) because I hate taking tablets, I'm such a big kid. b.) they are Huuuuuge. and c.) I have to use lots of my fluid restriction up taking them. So I told the Doctor all this and he has put me on two different phosphate binders one called Calcichew which I take with breakfast and tea. I have taken this before and as the name suggests you chew it rather than swallowing it (which is good for me, requires less fluid) he also put me on another binder which I can't think of the name at the mo, but it is chewable too and I take that at lunch time.

Finally as I wasn't impressed with him putting my dry weight up he suggested I should go walking for an hour a day!!!!! Think I'll start with half an hour and build up and might get my bike out when the weather starts getting nicer! The consultant also prescribed me with a tablet to control or suppress my appetite so I can hopefully loose a bit of weight... fingers crossed these work and I won't be running to the loo all the time (they contain lots of fibre which expands in the stomach, making you feel full)

So that was yesterday, and today I've been out to Stockton Heath to a jewelers to see about getting a ring for my 21st birthday which my mum and dad have very kindly offered to get me! I found one I liked it's white gold and has 3 diamonds, but the gentleman behind the counter suggested I come back when he has another particular ring in stock to see if I liked that better. All in all a successful trip, so I'm going back next week to see which of the rings I like best.

So thats it really... I am still off uni for the Easter break and so have not seen much of my mates (I miss you guys)...Only one more Uni assignment left to go... and the countdown is on till my 21st... 25days to go...

Everyday Life

Not much news really just been busy with boring old uni work, which seems to be paying off as I found out on Thursday that I passed another assignment with a mark of 73 which is a 1:1! So I’m chuffed about that!

So on the 21^st April I’m starting a Work-Based Learning placement which I’m really excited about as well as a little nervous as I don’t know how my energy levels will cope. Uni has been very helpful and have sorted it out for me to do my placement over 10 weeks part time instead of 5 weeks full time. So I’m going to be working with 6 and 7 year olds in a primary school 2.5 days a week. I have my first meeting with the teacher tomorrow, so I’ll see what I’m letting myself in for.

So dialysis hasn’t been too bad, had a dodgy time a couple of days last week with my BP so my dry weight has been put up yet again, which (as usual) I’m not happy about. I also got my blood results back and they caught me as I’ve not been as good as I should be, I’m rubbish at remembering to take my renagels (phosphate binders) I hate taking tablets (I have a fear I might choke, which is practically impossible) These ones are quite big and I have to take them anytime I eat anything!!! Apart from that everything’s ok.

I am shattered tonight as today me and my folks looked after our friend’s little boy who is 20months, so I have spent the day playing trains, singing wind the bobbin up and twinkle twinkle little star and even managed a trip to the park to feed the ducks and play on the swing! Had a fun packed day running around after him, and now an early night for me I think…

Ways Dialysis and End Stage Renal Failure (ESRF) effects day- to- day life….

Fluid…

Most dialysis patients (especially those on haemodialysis) have to restrict their fluid intake. I have to stick to 500mls of fluid a day which is harder than you think as this also includes liquid that is contained in food.

Diet…

Haemodialysis patients have to stick to a strict diet as various waste products can build up in your blood. Each kind can have a different effect on your health.

Salt can increase blood pressure, so patients are encouraged to reduce salt intake. (Salt also has the effect of increasing thirst, so it makes it more difficult for patients to restrict their fluid intake).

Potassium is a mineral which is found in the cells of body tissue, and any excess would normally be removed by the kidneys. Too high a level of potassium is bad for the heart - in extreme case it may even cause it to stop.

Phosphate is a substance that is widely found in foods. It works very closely with the mineral calcium, and the healthy body keeps these two substances in balance. Phosphate levels may be associated with itchiness and over the long term can damage blood vessels. I am currently on phosphate binders, which are taken whenever I eat, this reduces the level of phosphate in my blood.

Kidney patients can also lack vital nutrients such as…

Protein - This is an essential nutrient that enables the body to build muscles. Low levels of protein can lead to fluid retention and to a reduction of the body’s ability to fight off infections.

Vitamins - Some patients may need vitamin B and C supplements.

Iron levels may drop and cause anaemia, this can be replaced with iron tablets in my case to maintain my Heamoglobin (HB – which also effects iron levels) I have a drug called Aranesp… this is given in needle form into the machine, 20mg once a week.

Tablets…

I’m lucky at the minute; I only take 9 tablets a day:

Renagel 800 (2 tablets 3 x a day) – these are phosphate binders and control the amount of phosphate in my blood

Lansoprazole 30mg (once a day) – this helps prevent stomach ulcers

Alfacalcidol 0.25mg (once a day) – this is a vitamin D tablet that helps to control the level of calcium in my blood.

Aspirin 75mg (once a day) – to thin my blood, this is to ensure my fistula doesn’t clot.

Aranesp (injection form 20mg once a week) – control Haemoglobin levels in my blood.

Obviously as well as all this… we mustn’t forget the delights of tiredness all the time, nausea and dizziness!