Hi Update from jbell

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wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,

Citra Lock, is used to lock off your neck line when dialysis is finished, (fill the tubes that have been inserted into your blood vessel and the fitting on the end were the machines lines are connected) this is done to prevent blood stagnating there and clotting between dialysis sessions.
Citra Lock may have been first choice for you as it is effective with high blood calcium levels or it might be your units standard treatment.
If the procedure is done correctly, they are not giving you a dose but rather just filling the internal tubes and end fitting with Citra Lock, you should not receive any or only very small amounts into your blood circulation.
Each neck line catheter has the total volume stamped on it and that is the amount they should, slowly, push in.
It is intended to stay in place until it is sucked out and discarded at the start of the next dialysis session.

Many units use Heparin or heparin substitutes to do the same job.

I hope this gives you some idea of what is going on.

I have not heard of units stopping patients seeing the machine screen before. :!:
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Hi Update from jbell

Post by Dixie1 »

Hi jbell - just wanted to say that I am really sorry to read about your stomach problems. Sounds hideous. I should say though - you really are a brave lady. So much seems to get 'thrown' at you and yet you always sound so bright. Well done you. :) Anyway, I hope you get this issue sorted soon. Best wishes.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Thank you Wagolyn and Dixie for your replies. It is lovely to hear from you Dixie, how are things with you ?

I have been back in hospital, things kind of went drastically wrong at dialysis last tuesday. So I went into Ninewells to have my line rewired again and just as the surgeon finished another surgeon who was watching commented on the fact that the internal wires were too low. She also said to me that could have been the reason I was having so many problems. Anyway so my surgeon said he was sorry but he would have to make a further incision and move the wires, so it took a bit longer than expected. Now I have lots of very sore stiches but a line that has worked twice now :!: I am back tom and fingers crossed all will be well. I am now aneamic and my wbc was 8 before the op. I am slightly concerned as the last time it was 9 I had that terrible infection in my fistula arm. They wanted to give me intravenous anti-biotics on the renal ward before the op, but after 3 dr's and 6 attempts to put a venflon in they gave up as I have no veins so to speak. I ended up having them put through with my dialysis straight after op so Hopefully that is about the same as having them before. I must admit it was an awful day, I was up at 6 and picked up by transport back of 8. I didnt come home until7.30 with a raging headache and chronic sickness. Then my neuropathic pain kicked in so I was up till the early hours with that, plus my wound was bleeding like mad, blood was running down my body most of the night. It was like that when I left the hospital but the nurse changed my dressing just before I left. It was scarey being in the house alone feeling so bad. The next day I had to ask a friend to run me to my own dialysis unit to have the dressing changed, and thankfully my blood did clot later that day. I kind of feel I have had my fill at the moment, 7 ops since september, I need a bit of time off. I have everything crossed, which is quite painfull :wink: that my new line will perform beautifully for a good while. I had better finish I should really be asleep but I cannot get to sleep. Have you had your hearing apt yet Wagolyn ? Oh my gastroscopy showed gastritus and a hiatus hernia, I am now on a heparin lock but still being sick after journey home after dialysis. That is it I am off, what do they say, no rest for the wicked, well I must be quite wicked as I feel a no rest night for me night :shock:
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Hi Update from jbell

Post by AmandaClare »

Jan, you poor thing, you sound really battered. You must be exhausted. At least you've finally had some proper dialysis. Hope you can get onto more of an even keel now.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hello jbell,
Just when we thought things could not get worse for you!

Have they done anything about your white blood cell count (wbc) - more medication or looking at your present medication to see if that is the cause (some medication can drop your wbc). The antibiotics after the opp should help prevent infection for a while.

It looks like progress on your stomach pain and sickness front, at least they can start to treat that.

It was not a good idea to send you home alone whilst still bleeding :!: It must have been quit frightening alone and bleeding. I think modern nurses are highly qualified for something but it's not nursing.

I will keep everything crossed, in the hope that you get a quite period for a while...

Best wishes.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
It's me again, sorry I forgot to answer you about my hearing.

I saw a registrar, the consultant was called away to an emergency, she said the right ear was unusable but the left ear hearing aid had more adjustment left so I should call in to audiology and get it adjusted. They were at lunch, and the parking time was running out, so I came home. We made another appointment, they made some adjustments but I still cannot hear, I will have to make another appointment and try again. :roll:

I estimate I hear about 5%, and the rest has to be lip reading, and guessing.

Eventually, I hope, the local ENT will pass me on to Addenbrook's hospital, that is the nearest BIG hospital.
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Hi Update from jbell

Post by Dixie1 »

Hi jbell - I'm not too bad at all thanks. My husband and I are just going through the transplant work up process. So far so good but I won't count my chickens........

You on the other hand seem to be having a horrible time. I really hope that they get you all sorted soon. You seem to have problem after problem. I really feel for you. :(
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi all, thank you for all of your replies. Wagolyn it sounds you are having as much luck as I am with clinic apts. I hope they can make things better for you when you do get back to hearing clinic. At this stage can you not kick and scream and ask for a refferal to the hospital of your choice ? I don't think you are a kicking and screaming kind of bloke, but you are definately a man of words :wink: .

I think my last post was a bit graphic, I apolagise, my only excuse was I was in a bit of shock and alone so it all came out on here :!: I have bounced back and my line works lovely, touch wood !. After 2 sessions I was a bit shocked when an attempt to use my fistula was done. The first time the nurse who did it managed to get one needle working but the other tissued immediately. So I had dialysis with my line and fistula. The next session was a different nurse and she couldn't get either needle into a vein. So my line was used. My last session there wasn't a nurse experienced enough to try my fistula so line again. Tom a different nurse is going to try again, apparantly it is in a very difficult position and upside down practically right on the bone at my wrist. Anyway my wrist is black and blue and I don't hold out much hope as the vein is quite thin and thready. But I have to say the good old lidocane means I haven't actually felt a thing up to now so they can try again. I am just generally anxious as it seems to be a different nurse each time and always will be as that is how it works in my unit. Though obviousley you get the same nurses on a rota so I will see the same ones just not each time. I hope they can get it working as I don't fancy another fistula op :shock:

Mr B is home again so whatever happens I feel a bit better. I am really tired as my iron and hb are really low. My wbc came down to 5 after the antibiotics . I had my big bloods done last thursday and on sat I was told I should have had them repeated but they had forgotten to do it. I am not sure why a request was put in for a repeat the nurses said they didn't know. They can be so hard to pin down when they want to be :? Well that is all my new yet again, I will let you know how things go with my fistula, take care everyone...Jan :)
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
I am pleased you seem to be in a better place than your last post. :D However, (see I got that word in again :D ) you don't have to apologise, you are entitled to feel down, especially when you are tired.
There is a saying (in engineering and safety), 'if it can happen it will happen' but I don't think it is supposed to all happen to the same person!
Grumble away when you feel like it, sometimes it helps. :wink:

Re- the fistula, it would be good if they could be persuaded to use your fistula for the blood being returned to you, and the neck line for collecting blood. This arrangement should encourage the blood vessels in the fistula to grow.
Starting a new fistula, from what I have seen, is usually difficult. :x
If only they would use just a few nurses, say one off each shift, until it gets sorted out but I suppose that is common sense... :roll:

On my hearing thing, I don't know of any short cuts, it will take time, there are steps along the way and each one has to be tried before they finally give up.

Keep smiling, best wishes.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Hi Update from jbell

Post by jbell »

Hi Wagolyn, fantastic news my fistula is up and running :!: The vascular nurse managed to do it, she did it in a very uncomfortable position (for her ) but it worked. I am having to go to Ninewells for a wee while, in fact Claire (nurse) is coming in to work tom on her day off to put me on. She has taken photos and emailed them to Perth along with instructions but they don't feel confident to do it at the moment. The surgeon has played a blinder as they say, my fistula is in a really difficult place and quite rare. Typical for me :roll: To celebrate we went for a non kidney disease meal !, it was lovely but back to reality tom.

One other thing I was at my gp's and he seems to think I may have Meniers disease. I really hope not but I have all the symptoms and have had for quite a long time. He isn't sure about treating it but has put me on some tablets to help with nausea and help with my balance. Does anyone know anything about this condition ? I am seeing my renal consultant on Mon so will ask him about it. My gp thinks an episode of this has been triggered by a minor virus and is hoping it eases soon.

Well thats me once again, oh I bought myself a really lightweight hoover (2.4kg's) and I am now ready to hoover up much to Mr B's delight . I havent been able to drag our heavy hoover around for years. I find it hard to beleive but I am actually excited at the prospect of doing my own housework :shock: If only I could master the art of cooking, but that may be a bridge too far :mrgreen: .......Jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Hi Update from jbell

Post by SKM23435 »

Jan,

Just to say I love your posts.
You have a really tough time and I can only admire the way you cope and your humour. You put my niggly moans into context. I now follow your story with interest. Good Luck for the future.

All the best
Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
That is good news about the fistula, the more sessions you can have with the vascular nurse the better, each session should 'slowly', make it easier next time. If the nurse is based at Ninewells, don't rush to get away even if it makes traveling a bind. :)

Meniere's disease - Snap!, I have it. :(

What is it? It is caused by the degrading of the Audio nerves and/or the balance system built into your ears. Either way (or both together) your brain doe's not get the balance information from your ears (it never was sent, or the audio nerve lost it). In some cases the balance system can be restored, but nerve damage is usually permanent.

Your GP needs to hand you over to the Ear Nose and Throat (ENT) consultant to have tests to correctly diagnose it, try and find the cause, and then plan treatment/medication.

Simple test, stand up, close your eyes, and raise your arms together in front of you, (don't try this on your own, you may fall over). You will fall over or wobble a lot. You may also notice that in the dark you cannot walk about without holding on to something.

In my case it is nerve degradation due to old age. :?

Treatment, I am taking Serc-16 (Betahstien dihydochloride), 16mg tablets, white, round, with dividing grove across middle, one three or four times per day. These will reduce the wobbling and stop the sickness.
Your brain has to learn, it will have already started, to act upon what you see rather than what your ears say about where you are, (are you upside down, laying down or stood up straight).
The brain can be trained to make more use of information from sensors in your ankles and feet. You may get some exercises to do to help this training along.
The feeling sick is caused by your brain being confused by the signals from your ears not matching what you can see, when things are bad you get the urge to be sick, poo, pee, and your vision can be affected (if your problem is nerve damage).

Dialysis will remove the Serc-16 from your blood, therefore we have to take a larger does (2 per day was OK for me before dialysis).

The good news, for all the people I have met with this condition, Serc-16 does the job. The sickness pills are just treating a symptom not the cause.

I am sucker for a good Hoover. :D

By for now, chin up, well not too far up or you will fall over. :roll:
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
Meniere's disease - Just a clarification, Meniere's disease is degrading of the Aural nerves, strictly speaking defects in the balance system is not Meniere's disease. I lumped them together because the symptoms, and tests to diagnose, are very similar. Balance system defects can often be cured.

How are you getting on with the new vacuum cleaner? 8)
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Hi Update from jbell

Post by Dixie1 »

Hi jbell (and all) - just a quickie to say that I am so glad that they have got something sorted with your dialysis access. Great to hear you sounding a little more like your perky self. :)
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Hi Update from jbell

Post by wagolynn »

Hi jbell,
How are things going with you?

I am just getting over an awful tummy bug, not sick though, pains and the trots. :cry:

I am no further forward on the hearing front, currently waiting for an appointment for more adjustments on the hearing aid. At the end of February, we were told audiology had no appointments until early May, unless they have a cancelation. :cry:

So, all-in-all I am a miserable old sod at the moment. :|

I hope things are better for you. :D
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