Hi Update from jbell

[jbell]

Hi Wagolyn sorry to hear about the trots , hope you are improving now. I havn't posted for awhile, I have been back in Ninewells. I had a nasty infection in my line and that hospitalised me for awhile and then I have had trouble with my fistula. My line was taken out so my fistula had to be used. My dialysis has been a bit up and down, mostly down , as most nurses were only getting one needle in. I had to attend Ninewells unit for some time but am again back at Perth. Thankfully my last four sessions have gone well, I have had the same nurse each time and she has got to grips with the position of the fistula. The vein is still thin but I am hoping it will improve with time, my flow never goes above 250 which I know is not ideal.

I am a miserable old so and so as well, so now there are two of us I have a virus, or so various gp's keep telling me. I am really tired all of the time and have cold like symptoms. I still keep losing my balance every now and then which is quite annoying. I have been suspended from the tx list for nearly 4 weeks now. I was having very bad palpitations and saw the tx surgeon week before last and now I have to go for a CPEX test (bicycle test) again next week. He said I was on the cusp of them not being able to operate on me for the double tx. As he put it , they don't want to kill me I have never been described as "on the cusp" of anything in my life !! My sense of humour is intact and I am with the surgeon on this one, I would prefer not to be "done in " by the tx team. I am confident I will pass the bike test, that's my new mantra

Cheer up it's nearly May now, so hopefully you will get your apt at audiology soon. I must go I am off to an early apt with my gp. I was summoned with a letter saying he wanted to see me and it has taken 3 weeks to get an apt so I must go. I have no idea why he wants to see me amd I am confident once I get there he will have no idea why either !! This has happened before a few years ago and he had no idea what it was about. This is a gp I dont generally see either so it will be nice to have a catch up if nothing else

[wagolynn]

Hi jbell,
Pleased to see you posting again. I agree, your fistula 'should' improve with use, lets hope it does. The fistula should be less prone to infection. This is personal sorry, can you see well enough to wash it? Straight forward soap and water is all that is recommended, and an alcohol wipe just before needling. Some patients leave the plasters on until the next session, the unit I attend doe's not approve. They prefer the plasters to be taken off the following day and then normal washing.

Let's hope you keep getting the 'good' nurse, dialysis is possible through one needle, most machines can do this, of course the flow rate is very low compared to two needles.

I suppose your infection has got in the way of diagnosing your balance problem, that would need an ENT appointment. If your blood pressure gets very low you also are likely to have balance problems. Try to get your GP to follow-up on your balance thing.

Palpitations! have you been watching too many costume dramas?
Have they started looking at different heart medication for you?

Sorry about my last miserable post, it was a bad day... The trots have gone I seem to be under control again thank you. The hearing is a wait-and-see job, as you say it's almost May.

Overall, you seem to be having a tough time it just has to get better.

Best wishes.

[jbell]

Hi Wagolyn, you seem to be in better spirits (not whisky I hope ). We all have bad days I frequently have quite a few on the trot !.

I usually take my plasters off the same day as dialysis and I wash it with an anti-bacterial shower wash. I also have wipes to use before needling that the unit gave me. I am really anxious about my session tom, there are 2 new nurses and only one of them is experienced enough to try my fistula. I have met him before at Ninewells and he didn't listen when I told him my bp is controlled or not by my diabetes damage and not by how much fluid is on me. After they have got 900mls off me my bp generally plumets and I have a rest for 30 mins or so when no fluid is taken off of me. Then near the end they can usually get another 200mls off me and that gets me down to my dry weight. I think it must be unconventional as the staff mostly look at me like I am making it up as I go along . So tom is going to be a bundle of laughs I am no doubt being over the top and tom will be as easy as pie. Thankfully Mrb is home tom night so I can tell him all my woes, possibly whilst he is unconsious (the usual state of affairs when he first comes home !)

I have had some of my tablets changed and the palpitations are much less frequent than they were, and now the sun is out I am going for a wee walk everyday which is helping something I hope ! Well thats it again, it's getting closer to May , take care jan

[wagolynn]

Hi jbell,
I will keep everything crossed for you for tomorrow.

Good nurses, very rare creatures, discuss your treatment with you but of course, to do that they need to fully understand the treatment.
When I could hear better, I would keep asking questions until they convinced me I was wrong or it dawned on them what I was saying made sense.

For all practical purposes all soap and water or detergents are anti-bacterial, it always makes me laugh when I see ant-bacterial on shower gels and hand wash.
Back to the plot, don't use anything too harsh on your fistula, what you have described sounds about right. The way I look at it, once the blood has clotted any bacteria wanting to get in will have a hard time, and by washing the area it makes it difficult for a bacterial colony to get started. Washing with anything harsh, damaging the skin, allows bacteria to get a grip in the damaged area.
The unit I attend have stopped issuing wipes, patients were wiping over the needle site and then wiping back again, so they were bringing muck back onto the needling site.

Let's hope they listen tomorrow and they make a good job of needling.

[wagolynn]

Hi jbell,

How are you doing now, are you enjoying the run-up to the election?

[jbell]

Hi Wagolyn, well thats the election excitement over for another 4 years ! Sorry I have not been back on. My needling went fine twice with the nurse I was unsure of and then it tissued on his third go at it. Since then I had a few sessions with one needle but the last twice a different nurse got two in. I am no longer nervous about the outcome, more calm and resigned Lets face it it is not the end of the world if I only get one needle in, the only thing annoying me a little bit is it sometimes takes an hour to put me on So at the moment I tend to be the very last patient to get out of the unit. I am tired all of the time now, but maybe if they can get a routine going for long enough I will feel better.

How is your hearing ?, have you had your apt yet ? I went and had my CPEX test on the bike in Edinburgh. The results were the same as last time but the anaethatist is very concerned about my lack of usable veins. He said they wont know until they put me under for the tx. Then they will scan my veins, so I may wake up and have had nothing done. But that is out of my hands so I am trying to not worry about it. The anaethatist is concerned about my veins and the surgeons worried about my bp crashing the way it does, but they have re-activated me on the tx list so they must think they can do the op, hers hoping anyway

Well thats all my news for now, take care jan

[Dixie1]

Glad you are back on the list Jan - you really are having a rough time dialysis wise you poor thing. I really hope that something comes up soon for you. I had to attend a transplant education session the other day and heard there that the double (kidney/pancreas) transplant wait is normally quite a lot shorter than the wait for just a kidney. Here's hoping that this is the case for you. Hang in there!

[wagolynn]

Hi jbell,
I am afraid it will be 5 yrs before the next election.

I am pleased that they are getting access via your fistula, each time it is used it should get easier, or that's what the rule book says.
I especially like the, feeling calm about it all, that is really good for you, and the nurse trying to get the needles in.

Back on the list as well, things are looking up for you.

Latest on my hearing is, fully booked up through May/June, they will contact me if there is a cancelation. They are not taking bookings for July yet...

Lets hope you continue your good, well...better , run of luck.

[jbell]

Hi Wagolyn,

that,s rotten you are having such a wait for the hearing clinic. I have been referred to ENT to try and see what the odd bout of being off-balance is about. I am on a waiting list (theres a surprise ). I am feeling a bit rubbish at the moment, I have had a sore throat for nearly two weeks. Sweats, and a temp when I arrive at dialysis. My blood tests are all fine, no indication of infection. So I feel if I go back to my gp it will be a "virus" and will clear up of it's own accord. A week ago my gp said my throat was red and it still is.

So far as needles go I have had two in for the last three sessions, though it is a different nurse tom but I have every faith in her. Take care jbell

[wagolynn]

Hi jbell,
Needles, ask if they can start button-holes, the needles go in the same holes every time, once a channel is formed, usually takes two to four sessions. The needle channels get lined with scar tissue, and providing the nurses know how to use button holes, they can then use blunt needles and simply follow the channel every time.

The persistent sore throat and temperature sounds like fun I think it should be checked out or at least monitored, have you tried honey and lemon to soothe your throat, the sugar in the honey may be a problem for you, it will certainly be a problem for the bacteria. The only other thing I can think of is gargle with mouthwash, I don't use salt these days.

Once we run into bad health, we all get very expert at waiting,........and waiting,.........and............

Chinn up, things can only get better, well that's what they say anyway.

[jbell]

Hi Wagolyn

the nurses starting to try to buttonhole me two sessions ago, first session went fine. But yesterday the same nurse couldn't get the second needle in, it took half an hour and three attempts. She has said this is a minor setback in getting me buttonholed (not sure that is a word ). I will be back on tues and three nurses have been assigned to me to get this done, so the nurse yesterday took a photo and hopefully all will go well.

I am slightly confused, I had a test done on my fistula for the first time the other day which involved puttin electrodes, maybe not some sort of clip onto the lines from the fistula. As you know I am the least technical, medical, scientific person in the world but I am sure you will know what I am wittering on about. But the thing was it measures how well your fistula is working and my result was 400 instead of over a 1000 which is what they are looking for. So the nurse who did the test said it was quite a bad result, but when she spoke to the vascular nurse thinking I would need a small procedure the nurse said not to worry about it as my last URR ? was 78. I am just confused as to how my dialysis is obviousley working ok but my fistula is not ? I am not particularly concerned just interested how that can be ? Tar very much mr wagolyn who knows everything and always clears things up for me Jbell

[wagolynn]

Hi jbell,

As far as I know, there are two measurements made on fistulas, in my unit they are done using an ultrasonic machine.

One is to look at the size of the blood vessels, some machines will show the flow rate.

The other test measures how much, if any, blood is being recirculated.
That is, how much of the dialysed blood returned from the machine (into your upper connection on your fistula), is running backwards down to the pickup connection (the lower one).
This can happen if the veins are too small or restricted or the needling points are too close together.

The nurses call the lower, pickup, needling point the 'Arterial' and the upper, return, the 'Venous', the machines screen will use the same names. E.g. Arterial pressure and Venous pressure.

The vein in your arm should get bigger with use, due to the increased pressure in it because it has been connected to an artery and also when you are dialysing.

The vascular nurse is saying, on dialysis you are clearing away 78% of the urea, which is very good (anything over 65% is good), so there is no need to interfere with your fistula.

It sounds as though they are really trying to sort your needling out, 'buttonholed' is the correct word.

Keep smiling......

[wagolynn]

Hi jbell,
I hope you are doing OK.

I have had my appointment at audiology, they made some adjustments I am now learning to live with them. So far, the adjustments appear to be a very small step in the right direction, they had to be small because I am just about at the limit, more power will do permanent damage. People still sound like pinkie and perky, and I guess I hear about 5% of what is said, the rest I fill in with lip reading and guess-work.

How is the needling going now?

Best wishes.

[wagolynn]

Hi jbell,
I hope you are OK.

I have started taking fluid off, just 1 litre at a time. They have a new 'toy' that is said to measure a persons water content electrically. They tried it on me and it indicated I have 4 litres excess, the dimple test shows I have a small amount of water. As far as I know, the electrical method of measuring water is not much better than the weight method, it works on averages and we are not average.

However, (look I got it in again ) what I find interesting is, they are taking 1 litre each session, rather than going at it like a bull in a china shop. So, patients could be treated much better in the beginning than appears to be the usual way, large volumes off in a panic.

Let us know how you are getting on, when you can.

Best wishes.

[jbell]

Hi Wagolyn

I am glad that they are trying to move in the right direction with your hearing adjustments, when is your next apt for an adjustment ? It must be difficult with only 5% of your hearing, though pinky and perky sounds as if it could be quite amusing

When you say 1 litre of fluid off each time does that include your washback ? They have eased up on me as well, we only take of about 900mls including washback and I am not so dizzy. My renal consultant agreed to leave a bit of fluid on me so I could try to lead as normal a life as is possible for us not so normal people I am pleased to say my fistula is buttonholed though less experienced nurses still cannot do it. The holes are very close together and are upside down which causes difficulties.

I have not been around as I have been and still are suffering from a mouth infection. I had to have 5 teeth removed in one go resulting in a bad infection. I have been on antibiotics for 5 weeks and suspended from the transplant list . I am quite fed up of it and have still got two more teeth to be removed on Monday and another two three weeks later. I seem to get an infection after every extraction so this could go on for sometime yet

MrB is away at work at the moment. But when he comes back we are off to Glasgow for a couple of nights, in the rain and the cold no doubt . The weather here so far is quite bad, it rains most days and the temps are not so good either. Well I had better go I am waiting for transport, thank goodness for Wimbledon the four hours fly by at the moment. Take care jbell