donation

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Training days

Posted by RenalLife on February 8, 2013
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My dialysis has increased over the past two weeks. Instead of 12 hours per week, I have been forced to be on the machine for 15. But it’s all for a good reason. I have been undertaking home dialysis training at the Renal Unit as I prepare to begin treating myself. To get me in the mindset of having home haemodialysis (and also to make sure I know exactly what I’m doing) I have been going in every day, Monday to Friday, for three-hour sessions, first thing in the morning.

Home-dialysis training at the hospital

Home-dialysis training at the hospital

The training began with me being talked through each step of the preparation process. For the best part of the last 14 years I have become accustomed to the dialysis machines; how they look, how they sound…but not particularly how they work. I know what each part of the machine does, but when it comes to putting it all together and making sure it all works, then I’m way out of my depth. I’ve only ever been a patient who would stroll into the Renal Unit, take my place on the bed and wait for the staff to connect me to the machine.

But now, it’s down to me.

I had already been shown how to cannulate myself, so the access for home haemodialysis wasn’t going to be a problem…or so I thought. During the second day of training, my venous needle – which is the needle that shoots the cleaned, dialysed blood back into my arm – was a little uncomfortable. It’s never totally comfortable having two needles measuring just short of two inches in your arm for three hours, but this one didn’t feel quite right. Usually if there is a problem with one of the needles, it will be reflected in the pressure monitor on the machine alarming and a soreness developing in my arm where the needle sits. The pressure readings were OK, and so I wasn’t too worried. But later that night and the next day the site where the needle went in was swollen and sore. To give that site a rest and allow the soreness and swelling to go down, Judy – the Sister at the Renal Unit who takes care of all the Home Haemodialysis patients – suggested that we try an alternative site for the venous needle. I was expecting her to decide where we were going to go, and also for her to put the needle in, but she soon informed me that I would be the one doing it. The nerves soon rose and the shakes began…I had never needled myself in a fresh site before; the only previous occasions I had put my own needles in were in ‘buttonholes’, which are already established sites where the needle, theoretically, just slides into the hole. As I took hold of the needle, my shakes got marginally worse as I was anticipating the sharp sting of the needle piercing my skin. Judy had told me that patients who needle themselves experience less pain, something which I was dubious about. But it’s true. I think it must be the thought of someone else coming towards you with a needle that makes the body tense up and the brain scream “THIS IS GOING TO HURT!”, but I was pleasantly surprised that by putting the needle into the fresh, new site myself, there was hardly any pain to speak of. It still stung a bit, and it’s not something I look forward to doing, but it was nowhere near as uncomfortable or horrific as I was expecting.

A side effect of a blown fistula

A side effect of a blown fistula

Everything was going so well, both needles lodged safely in my arm, pressure readings perfect, new needle site performing excellently…until I committed the cardinal sin of the fistula owning haemodiaylsis patient — I moved my arm. Only ever so slightly, but it was enough to cause my needle to blow. As the needle is sitting in my arm and pumping blood back into my fistula, it is held in place by three strips of micropore tape, each on around 8cm in length. Any movement in my arm can dislodge the needle as cause the tip to press against the inside wall of my fistula and cause swelling, an increase in pressure and – most of all – pain. It’s quite easily resolved by taking that needle out and putting another one in a different site, but the swelling and subsequent bruising is still visible as I type, nine days later, and it’s best to leave the site well alone until it recovers. This whole episode meant I had to find another new site to needle, resulting in four separate needle sites on my fistula. Thankfully, and after guidance from Judy, I managed to get the new needle in again without  any problems and so far it’s been fine. Having problems with needling the fistula is common and it was the one thing I was really concerned about. I can get used to running the machine and I’ll soon become accustomed to setting everything up, dealing with alarms and making sure my treatment goes smoothly. But there’s something about plunging a pair of two-inch needles into my arm that I don’t think I’ll ever really get used to.

But that’s a small price to pay for not having to travel to the hospital every other day.

An operation is booked

Posted by RenalLife on August 31, 2012
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I’ve got an exciting date to add to my diary. I will be going under the knife on September 28th, although it isn’t the dialysis-ending operation I would like it to be, its a necessary procedure to save my bones from becoming weak.

The neck of Joe Brown

My beautiful neck will never be the same again.

I’ve mentioned is a previous post that my parathyroid gland is working too hard, causing the PTH level in my blood to spike upwards to a potentially-dangerous level of the high 180s. While this doesn’t result in any side effects in my day-to-day life, a prolonged high PTH level can result in the gland effectively drawing calcium from my bones, which in turn can cause them to become brittle and at more of a risk of fracturing. So the glands are to be removed at the end of the month in an operation which will last around an hour and a half  and could leave me with a permanent croaky voice (although the chances of that happening are very slim) and a delightful four inch scar across my neck.

Forutunately my beard-growing ability is rather spectacular so the resulting scar will be hidden most of the time, but I’m not really bothered anyway.

My consultants threatened the operation way back in 2006, before I got the call that Steve was available for me. Once I had the transplant, the pressure on the parathyroid gland was reduced and the PTH level returned to a more normal level. But now dialysis has resumed, the operation can’t be delayed any further.

In other news, I had a brief stay in hospital as result of an infection which I caught on dialysis. With about two hours of treatment remaining I began to feel a bit rough. Nothing unusual about that, as I usually feel a bit dodgy about half way through anyway as the fluid beuing removed from my body takes effect. My blood pressure dropped and I began to feel cold. So cold that I couldn’t stop shivering. For over two hours I had the shakes but my temperature was rising. The result was that  had caught an infection, likely to be a bug which was hanging around on my arm and entered my blood as the needles went it. It then spent a good couple of hours floating around my blood stream and manifested itself in raising my temperature to around 38.5° and giving me the shakes. I was pumped full of antibiotics and although I felt fine by later that afternoon (albeit shattered) the powers that be wanted to keep an eye on me and admit me to the hospital.

Things like catching bugs and infections are bound to happen, and seeing as my immune system is suppressed due to my kidney still being in, I am at risk of picking these kinds of things up. It’s all part of being a hospital-based dialysis patient. There are hundreds of millions of different kinds of bacteria and bugs floating around the air, and having two holes in my arm for four hours in a seemingly clean hospital ward raises the chances of infections occurring. All the more reason to push on with commencing home-dialysis.

On that note, I finally have a date set for the home renal team to come and assess our house. We’re not exactly sure on which room we’d prefer to have the machine set up in, its all down to what the assessors say. But I’m not particularly bothered, I’d have it in the garage if it meant not having to trek up to the hostpial three times a week. Home dialysis will mean having to insert my own needles; something which I’m a little nervous about. It’s only been the last three weeks or so that I’ve summoned the courage to watch the nurses at the hospital put them in. The needles themselves are about two inches long, and although they don’t hurt when they go in (years of being needled at the same site every other day have killed the nerve-endings at those sites) it still seems so unnatural. But that’s a small price to pay for the freedom of hospital treamtent and a relaxing of the fluid intake restrictions.

I will report back with the results of the home dialysis assessment, in the meantime keep those fingers crossed.

The waiting game

Posted by RenalLife on July 6, 2012
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I haven’t written any new posts for a while, as has been pointed out to me by a few of the more regular readers, so for that I apologise. The only reason for the lack of recent blog activity is simply ..  I haven’t had any more news to deliver! It’s been a massive and sometimes frustrating waiting game. Whether its waiting for blood results about Alex’s kidney compatibility or waiting to hear from the home haemodialysis team regarding assessing the house in order to begin treatment at home, the drip-feed of news had dried up.

But, alas, I do now have news! Some good, some indifferent so reading hats on..

I’ll start with the news that I received from Mandy, the Transplant Co-Ordinator at the Norfolk & Norwich hospital. I mentioned in a previous post that Alex and I had an appointment to meet with her to discuss what was going to happen with regards to him donating a kidney to me and the processes and tests we’ll need to undertake. Following on from this discussion, Alex had numerous bottles of blood taken and sent off to test our compatibility, and the results have come back .. and its good news. We are compatible, and so we can push ahead with the further required tests. Alex’s blood contains the same type of antibodies which were present in my previous two transplanted organs, which is good news in the fact that we know that my body can accept them. Now we know that we are compatible, it’s a question of just how compatible we are. More blood tests will determine that and depending on the outcome the doctors in Cambridge will ultimately decide on whether or not it’s worth going ahead with the operation.

So that’s the good news, we’re still on for a living related donor transplant from my brother-in-law. Very encouraging.

The perhaps not-so-good news is that it’s looking increasingly likely that I’m going to have to have an operation on my neck to remove my parathyroid gland. This is a selection of glands just behind the thyroid gland in the neck which controls the levels of calcium in the blood. The usual range of PTH in a renal patients blood - the indication of how the gland is working – is usually between 20 and 35. My latest reading was 192, which basically means the gland is sucking all of the calcium out of my blood and bones. If left to its own devices at that kind of level for a sustained period of time then it could mean that my bones become brittle and I may develop some osteoporosis, which is something nobody wants. There are two options available to me; either try to control the PTH level with medication or whip them out in a small op. My consultant explained to me that he had never seen a PTH level as high as mine recover to within normal parameters with medication, and so the only option really available to me is the operation. I think in a way I’d prefer to just get rid of them, that way I’d know that the problem is gone and dealt with and I can forget about it. The wait for the operation is around two to three months, so I’ve got a bit of time to steel myself for a nice little scar along my neckline. Yummy.

In the meantime my dialysis has been continuing thrice weekly for four hours, and I’m relieved to say that the after effects I’ve mentioned in my previous posts have been extremely minimal. The fact that I’m feeling fine after each treatment now is good, but it’s  somewhat depressing that I’ve slipped back into the routine of being a dialysis patient again so easily. Can’t have everything I suppose.

Looking up

Posted by RenalLife on May 21, 2012
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I’ve had a really good couple of weeks, dialysis-wise. I think I must be settling down with the treatment now, at last. My body seems to be getting used to the four-hour ordeal of blood cleansing that I put it through three times a week. Without doubt the worst part of the haemodialysis is the feeling of being wiped out for the few hours after, and fortunately for the past few sessions that feeling has been minimal. It makes such a huge difference to my life away from the hospital when I can spend the rest of the day following dialysis at work feeling OK or at home playing with the boys and not having to sit quietly while I try and shift the after effects. It’s like I can completely forget that the whole thing exists – apart from the never-ending calculations about how much fluid I’ve taken on and how much I’m going to allow myself for the rest of the day. But that’s not so bad, I’ve learnt that thirst is mostly just a state of mind.

Since my last blog there have been some developments in both of my goals for ending hospital dialysis – home treatment and transplantation – with cause for optimism. I had a brief discussion at the Jack Pryor Unit with the nurse who oversees all the home-dialysis patients, and she told me that I am a good candidate to have a machine installed at home. Good access for dialysis is imperative, and as my fistula is in great shape I’ve ticked that box already. Somebody to keep an eye on me while I’m dialysing is important too, just incase I start flaking out while I’m on there, and fortunately I have a lovely wife to do that for me. Tick. Space at home is also taken into account, not just the space the machine will take up, but room to store all of the accompanying bits and pieces needed to dialyse myself; needles, tubing, acid, medications etc – it all needs to go somewhere. I have an idea of which room I’d ideally like to use for the home haemodialysis, but when we have a visit for the house to be assessed, that might change. There is some significant plumbing work that will need to be carried out on the house before things get set up, and although we won’t have to pay for it, it’s still going to be quite an upheaval. Lots of things to consider but the benefits of dialysing more often at home greatly outweigh the drawbacks.

I have a meeting with the Transplant Co-Ordinator on Wednesday 23rd May, along with Alex, my brother-in-law who I have previously mentioned is keen to donate a kidney. I think it’s going to be an informal chat about what kind of tests they’ll need to undertake to test our compatibility and the process of donating an organ, but the scheduling of the meeting alone is a great start. Although I’m starting to feel fine after treatment at the moment, I can’t help thinking about how much I’m going to enjoy not having dialysis again. It’s not the worst thing in the world, but when the day finally comes that I don’t have to dialyse anymore, I’ve promised myself, and my family, not to take anything for granted.