Hello strangers!

I feel really bad for neglecting the blog but things have been a bit manic recently!

So a quick update....

On the kidney front, things are going well, results are all going in the right direction and more importantly I'm starting to feel the benefits! I have had 4 doses of IV Iron to boost my Hemoglobin levels which are low. This seems to have helped, it's still not normal but it is much improved, I am also meant to have a drug called aranesp which will also build up my HB but my blood pressure has been too high for me to have this so we have to wait for that to sort itself before I can start on the aranesp. I have been put on 2 different blood pressure tablets to try and lower it but the docs think the main reason for it being high is the amount of fluid I have on board. At my worst I was 10kg over my dry weight!!!! Luckily I have been put on water tablets (frusimide) to get some of the fluid off, this is doing the trick and I can finally see my ankles!!! Sadly it won't do anything for my steroid "Moonface" but hey hopefully that will go down when the steroids are reduced, and anyway its worth it!

The downside to this is I'm going to the toilet every 15minutes, meaning I can't go out much, but hopefully I won't be on them for too long and I'll be able to get out and about again soon!

I went to the hospital today and I didn't even have to wait around for my blood results, which is great!!! They said they would ring... they haven't but I'm not worried as no news is good news! They told me I don't need to go back till Thursday so I'm down to twice weekly visits which is great! I've also been booked in for a little operation (day case) on 11th December to get the stent removed out of Ivy (my kidney). This will be done under General Anesthetic, but from start to finish should only take half an hour. Also going for an ultrasound scan on my fistula on 15th Dec, even though I'm not using it anymore it still has to be checked to make sure it's still working and not narrowing again.


In other news the Battlefront campaign is really going full steam ahead, thanks to Emily and "Holly's Helpers" to find out more click here. I also have a bebo page up and running so to have a nosey at that too click here and add me as a friend! All ideas are under wraps at the minute but I'll let you know as soon as possible about any developments!
I'm also busy trying to do a piece of uni work so I don't get to far behind! So its all go, go, go at the minute, I don't know how I managed to fit in dialysis before, the freedom is great! I can't believe its only just over 5 weeks and the difference is noticable already.

I promise to update this more often! Thanks for all your supportive messages! x

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!

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...

Live Life Then Give Life

So, I’ve told you all about dialysis, transplants etc let me know if there’s anything else you want to know about my condition I’d be only too happy to tell you….

Nothing much to update you on really. I’ve been really busy with uni work and assignments as I like to cram as much as I can in when I’m feeling well incase I can’t do any work the next day if I’m not up to it! This is probably not the best way of doing it but it’s the only way I can manage it.

Had a bit of a rough dialysis last night as my blood pressure dropped really low 75/45 at one point, I felt sick and had awful cramp in my leg which is maximised as I am stuck on the dialysis bed with not much room to move, whereas normally you’d jump and stamp around I cant do that because of the tubes attaching me to the machine.

So as a result my dry weight has been changed to 66.5kg now so hopefully that will help and I won’t feel as bad as that again anytime soon. So I’m feeling a bit delicate today, a bit dizzy so I’m not going into uni, I’ll attempt to do some work from home later.

Before I go I want to tell you a little bit about a charity that is close to my heart (or should I say kidneys lol)

Live Life Then Give Life was originally set up as a campaign by Emma Harris and Emily Thackray to raise awareness of organ donation and the chronic lack of organ donors in the UK. It aims to encourage people to think and talk about the subject of organ donation and to try and get them to take the proactive step of signing the organ donor register. That was back in March 2006 and they ran it by themselves until about 6 months ago when they decided that LLTGL should become a charity so that it could do much more to save lives.

LLTGL helps give those affected by transplant a voice within the media, educates the public with literature, talks and events, and supports those in need of a vital transplant, which due to the terrible shortage of donors in the UK may never come.

Well I had some exciting news… my good friend at the charity Live Life Then Give Life, Emma has asked me to be the North West advocate for the charity, this is a great honour and a privilege! Emma and Emily are an inspiration to me, Emma suffers from CF and Emily received a double lung transplant a year ago after also being born with CF, I am pleased to say she is doing fantastically well and both Emma and Emily are a great support to me. So thank you, you two! x

Click here to find out more about the LLTGL charity.

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!