Hi Update from jbell

[Dotty]

How is everyone one? How is your fistula doing Jan?

Dotty xx

[jbell]

Hi everyone, I have been in hospital for awhile and also away this weekend for a lovely break in the borders. My bp decided to go through the roof after fistula op and I ended up being kept in. The op went ok and fistula is at wrist and running up the outside of my arm. It is a bit weak, turned out the artery was quite calcified and the vein very small. But it is working and only the next 6 weeks will tell, so I have my fingers crossed.

Dotty and Grey I cannot believe how much can happen in just over a week . All for the better I have to say, news like yours is so uplifting, I am grinning like a cheshire cat at my computer.

Hi Wagolyn, how are you doing ? I am back at my usual unit and routine. I have had a good dose of retail therapy this weekend so I am feeling good I hope all is well with you. It is freezing here and there was a lot of snow in the borders but not any here so far . Now I have said that I will probably get up to 6feet of snow Take care ... Jan

[wagolynn]

Hi jbell,
I am pleased to see all went well in the end, I find retail therapy gives me terrible cramp in the wallet.

Have they got you back onto BP medication?

Has your dietician said anything about calcium intake, generally with sick kidneys it needs to be reduced. The medical team will be monitoring your blood results and making adjustments to medication to control the calcium because it can become a problem. It tends to collect in places where it shouldn't.

We have seen some cold nights but no snow, of course being near the sea tends to keep the temperatures up. Anyway, the neighbours are not very enthusiastic about having snowball fights.

On the whole I am doing OK thanks, bloods good, only problem is my hearing is much worse, I am due a hearing test in March and then they will decide what can be done.

Keep smiling, if not try Dotty's lippy cure.

[jbell]

Hi Wagolynn nice reply

Sorry about the hearing problem getting worse, I thought you were having a big check up before xmas. I really hope they can do something for you it must be very isolating for you. Plus it could be driving your better half batty

What should my calcium level be ? Nobody says anything, when my consultant does visit the unit he only speaks in general terms as in everythings fine. My bp meds were increased whilst in hospital and when I was discharged my bp was still way too high and I was told to increase my dose 40mg at a time every 4-5 days. So far I am taking 160mg at night. At dialysis yesterday I felt terrible my bp peaked at 220/114, I had a terrible headache and I could feel my heart fluttering. The staff didnt phone a dr at Ninewells they just said to get home and take my bp medication. It is like the protocall is different in the unit as to the ward. When my bp was like that in the ward they tested my bp more frequently and a dr was called to prescribe one off doses of meds and they were examining me to make sure I had not had a stroke. It is all very different in my unit, I put meds up last night and still had high bp, headache and feeling sick. I am really hoping it improves tom only thing is I am not sure if I should increase my meds to 200mg after only taking one dose of 160mg last night, maybe I should wait a few days to see if it kicks in. It is so difficult when you barely ever see a dr. Sorry I am moaning again, I will stop now I promise

Well on that note Coronation Street is calling , take care... Jan

[wagolynn]

Hi jbell,
Ring your GP about the BP.

Calcium should be in the range 2.1 to 2.5 mmol/l, did the dietician tell you to reduce dairy products, that's is the usual way of getting it down, some vegetables have calcium in but dairy products are much higher so they go for them.

Calcium is influenced by phosphates, with phosphate high calcium will be leached from bone and deposited anywhere, blood vessels are a likely area, others are, in muscles (the heart is a muscle), lungs, and joints. none of them are good for you...

Do get the BP looked into, I am nagging I know.

[jbell]

Hi Wagonlyn your nagging has paid off, sort off. I insisted that unit contact my consultant about high bp yesterday, which was an email in the end. But then to my horror my bp dropped so low last night I was really ill in the house. My heart seemed to be fluttering about and really irregular I couldnt breathe when laying flat. I think they have dropped my dry weight so much at the unit on my consultants say so that far too much fluid is being taken off of me. I guess I dont have high bp at the moment but now cannot stand I still have headache, nausea and general pain so I think I should take your advise and visit my gp. Though to be honest I think it may all be a renal/dialysis problem and knowing my gp he will advise me to speak to renal dr, he always does.

As to my calcium my last result was 2.11 mmool/l and my phosphate was 1.66 mmol/l. I dont eat cereal so no milk apart from in tea etc, no yoghurts, hardly any cheese. I am not sure what else I could cut out. On the good side my fistula seems to be getting stronger

Well that is all my news for now, I will let you know how things are going and if I ever get a face to face discussion with my rather elusive consultant , take care .... Jan

[wagolynn]

Hi jbell,
To me, (but I am not an expert) your symptoms add up to dehydration caused by taking too much fluid off.
Next dialysis session remember to have a good moan about how ill you have been (low BP) in an effort to stop them taking so much off. Do you have a named nurse, if he/she is on duty, tell them ALL the symptoms you had, see if you can shame them into waking up and thinking...

I think, if your GP wants to say its a nephrology problem, you could try explaining that you don't see the nephrologist much at the unit. Could the GP explain to you the implications of your high blood pressure, and what can/could be done about it, and did you ought to be seeing a heart consultant. Ask the GP about what can be done to clear the calcium from your blood vessels. Unless things are run differently in Scotland, your nephrologist, and your other consultants, should be keeping your GP in the picture

The calcium thing, this is one for the dietician and the nephrologist, I was advised to reduce dairy products to the minimum and to treat cheese as an occasional treat. However, (I like that word - however - don't ask me why ) controlling calcium is part of the dialysis package, though the nurses will not be able to do anything, as far as I can see, in my unit, the pathology lab makes recommendations to the consultant, depending on what is required, the dietician may get roped in as well.

Yes I did have a big session at ENT (hearing) the outcome was, give my ear a couple of months to sort itself out (the one that had the infection) and they will review the situation from there.

Do your best to keep your pecker up.

[jbell]

Hi Wagolyn thank you for your reply. My consultant reached exactly the same conclusion as your self, you old clever-clogs . It has been decided to ignore my dry weight, though I did my damdest to get it put up and take less fluid off of me. Which has resulted in me feeling better . As for my bp my consultant decided to leave it to me again, but if it gets really high again with my usual medication I now have another one to add in alongside my normal one.

One tiny hiccup so to speak. My line wouldnt work again yesterday, they ended up putting it through just one of my tubes into something that split it into 2 so they could still do a sort of dialysis. (I am so good with all of this medical jargon dont you think ). When I go back tom I am getting urakineas ? put through before dialysis and hopefully that will help. My fistula is 3 weeks old now, so hopefully it will be working in another 3 weeks or so. I have evrerything crossed (which is making typing difficult ) that I can get through to then without having to have a new line done.

My calcium is actually ok, I went onto patient view and on my graph on there evan though it says 2.11 I am down there at 2.1. So that is a releif, I think I have to contact the dietician myself if I want to see her. When I was on the ward last time I asked to see the diabetic nurse and she actually came to PRI to see me this week. So again that was useful and now she knows I am there she is going to see me regularly.

When is your hearing apt now ? I hope that they can help you. Anyway I am off now. I am following your advice and stamping my feet a bit (sort of ) I am really trying to be a bit more assertive and as you said tell the nurses how I am feeling and it works. Oh I forgot to say I had an ecg done and my consultant said it was normal so I am not to see anyone about it. But if I have the same sort of attack happen at the house again we are to phone for an ambulance. Thats all my news apart from I dont have a named nurse as it tends to be a different nurse everytime from a pool of nurses in the unit. Take care....Jan

[wagolynn]

Hi jbell,
I am pleased to see some progress has been made with the consultant though the staff, or some of them, will carry on regardless, or that is what happens in the unit I attend.

I think, your calcification problem is connected with your diabetes and your kidney problem, so you have been hit from two sides at once. It is possible that the calcification has got into your blood vessel muscles (oh yes, your blood vessels do have muscles) making your blood vessels stiff and rigid rather than flexible. This would stop them expanding when your heart is pumping blood, they do this to absorb the sudden change in volume of blood flowing, without this flexing the heart has a very tough time (showing as high BP). The surgeon who did your fistula will have noted this, if this is the case.
You can have calcium collecting in blood vessels blocking the flow, (tha naws lass like muck int pipes ) this can be treated with balloons and stents. Again if severe it would lead to high BP.
So far, I have not found any information on dissolving the calcification away, say like they do with stones in the kidneys or bladder.

My next Audio appointment will be mid march, this is to give it time to correct itself if it can, so its just wait...

I thought it was NHS policy to have a named nurse, as you say it does not mean much in our situation.

Keep smiling

[jbell]

Hi Wagolyn, your reply was very helpful. Calcification has never been explained to me and I must admit it has come as a suprise that my blood vessels may not be expanding as they should leading to high bp. I also admit I have never looked it up or asked about it either, I think I may be a bit slow on the uptake as they say . My line is still well and truly blocked and as it was my consultants ward round yesterday he did a procedure which involved heparin and a lot of pushing and pulling on a syringe on my line for awhile. When he had finished he bid the nurses adios to go on a weeks holiday and told them to put me back on normal hd as the line would now be working. He left they tried and it had not worked. , so one lumin (?) is working and one is not. It will be fresh staff again tom, and some may well be suprised I still have this problem. I don't know what is going to happen, a new line has been mmuttered more than once but not by any dr. I have to get to the 20th feb ready for my scan of my fistula. I am feeling quite tired which I guess cld be the lack of good dialysis.

Aside from all of that we went away for the weekend. I managed a walk and slept a lot, but it was nice to be away. MARCH !! thats a long time to wait. (capital letters so you could hear me ) I hope things improve for you. I shall keep you updated as to my progress ......Jan

[wagolynn]

Hi jbell,
This blocked line thing - I would suspect they are hoping your fistula can be used, very soon...

Lines do block but in my experience at the unit, I have not seen many, the story is most blockages are due to incorrect procedure. What I have noticed is, if a line is cleared immediately, it appears to stay cleared. However, 'normal' staff cannot use the same methods/solvents as higher grade staff, so they often partially clear the blockage, leaving a deposit in the line which forms the anchor for the next block. Once this starts, changing the line seems to be the final outcome, as the more aggressive (experts) solvent cannot clear the old, by now hardened, stuff away.

It may be that some people are more prone to getting blockages that's the nursing staff's story anyway.

The calcification thing - we do not know just how yours is affecting you as I said the surgeon should/may have advised your consultant on what they could see, and it would show up on X-rays and some scans. I think, they would not have gone ahead with your fistula if your blood vessels were too rigid, they connect an artery to a vein so the higher (arterial) blood pressure and flow causes your vein to expand enabling it to cope with the higher blood flows required for Haemodialysis and also makes it a bigger target to hit with the needles. I think, an excessively calcified vein would not expand therefore there would be no point in making a fistula.

All this comes with the usual caution, I am only a patient etc.

I am pleased to see you had a nice weekend, keep smiling.

[jbell]

Hi Wagolyn and everyone, I thought I would pop in and see how you are doing ?

I am pretty much in the same position as usual. My line has again stopped working, I managed no dialysis yesterday and they could not get the urikynes to go through. So I am to go back to my unit today and the nurses are to put through a thicker and stronger version of urikynes and if that doesnt work I am off to Ninewells for either a new line or a stab at my fistula. My fistula has not really matured enough, it is at 5mm but I have a feeling they will try and use it. Has anyone else had a fistula work at this size ? I am suposed to be having a gastrscopy on Monday and evan though I am dreading it I would prefer to go to that than be in hospital again ! The only bonus about going to the unit today is I get to meet a bunch of patients on a different shift to me. I cant beleive what excites me these days .

Mr B has returned to work, at last He is fit and probably quite glad to be back to normal, though his timing could have been better. Well I had better go I am off out for breakfast with a friend and then up to the unit. Hope all is well....Jan

[wagolynn]

Hello jbell,
I am pleased to see Mr jbell is fit and well again.

Have they worked out why your lines are blocked again...

This may be of interest to you https://www.kidney.org/atoz/content/hemocatheter There is a bit about necklines, what they say about knowing your flow rate and where to find it on your machine, I think is important. Then you can draw their attention to it as soon as it drops. If your pump speed is 'normal' for you and the pressures are creeping up the line is starting to block. Prompt action will prevent a major block.

Are you bruising, if not, you could perhaps do with more heparin, another way of testing this is to look at the Bubble/Clot trap, if there is clotted blood in it you need more heparin. Clots show as darker coloured than the rest of the blood in there and will build up from the bottom of the trap. Just to give you some idea of what a bubble trap can look like (different machines have slightly different traps) http://www.bing.com/images/search?q=dia ... tedIndex=0

They can connect you up using your neckline for one line and your fistula for the other, which I am told is less of a strain on the new fistula.

Anyway, you sound to be in reasonable spirits, lets hope things stay that way.

I go for more tests on my hearing (it's got worse) early March.

Best wishes.

[wagolynn]

Hi jbell,
If you get around to reading the stuff about necklines you will notice they don't say directly you have to monitor yourself on the machine because the staff won't but it is implied.

[jbell]

Hi Wagolyn I have not had time to read your links at the moment. But I was told by my consultant that it is caused by the calcification in my blood, when I ask any of the nursing staff they say they do not know . I insist my flow is never higher than 300 as this causes too much neuropathic pain for me, but I know it drops and the pressures go up quite a lot, but the nurses seem to notice this. I have noticed that in my unit the staff keep the moniter turned firmly away from the patients, apparantly to stop us from clock watching which is nonsense as I watch the wall clock permanently I am not bruising either, I will mention it to my consultant. I do not get any heparin they use a substitute beginning with a T. I get it twice as right from the start I clotted early on in dialysis. I have another question, does anyone have severe problems after citralock is given ? My stomach kills me and I am vomitting yellow bile just after I get into the house if I can make it. I know it is the citralock as I am fine until after that , I hate it and my stomach feels quite damaged now. I have emailed my consultant as I am hoping there is an alternative to it. I am having a gastroscopy tom, but I feel I wouldnt need it if it wasnt for the citralock. I have had stomach problems for years and take Ezomaprazole for it and that always made things bearable. But now that doesnt seem able to cope. I think it might have been especially bad yesterday as it was my third day on dialysis and my third dose of it. Plus being on a hot ambulance for an hour does not help either. Any help would be really appreciated as I am in agony.....Thank you....jan