Is it me?

[florence2]

I think I am becoming paranoid which does not mean that they are not out to get me. Seriously though I am becoming increasingly frustrated by the constant problems with dialysis. After the BP problem which eventually resulted in an ACE inhibitor we now have yet another problem with the fistula flow. We had a fistulagram about 5 weeks ago which was declared good. Now the machine that they attach to the tubing is reading 270 which is, apparently, below normal. We have been advised that we need an urgent fistulagram again. However their definition of urgent is somewhat different to mine. Has anyone ever had a private fistulagram and could they let me know the cost. I did ask if they had capacity problems were they allowing fistulas to fail because of this as the thought of a neck line is really freaking me out. Has anyone out there had these problems and how did you cope

Thanks

[Timbles]

Hi florence2,

Take a breath... chill, all is going to be well. They may seem like they drag their heals over these things... they do but they won't leave you so long to let it become a problem. They use words like urgent and to you (who this is happening to, it's just their job) this seems like life and death stuff. Remember that while kidney disease is a very serious condition it is a slow burner in terms of how quickly you become ill without adequate dialysis. Your fistular flow may not be that great at the moment and in the long run it may not give you the flows you need to stay healthy, however in the short term you will be just fine. On a long enough timeline, everything becomes urgent does it not? There is every chance that your fistular is fine and will get sorted out. In the mean time consider your options in doing APD or CAPD as an alternative to Hemo. It is what I do as I don't get on with having my week spent mostly in hospitals, there is just too much life to be getting on with. On APD I dialyse over night, get 8 hrs kip and have my days completely treatment free, oh and the added bonus of no needles too. Stay strong T

[florence2]

Thank you for your advice. I am getting more and more uptight about everything unfortunately but as it is only four months in it is all so new. When people tell you that the fistula may be failing you ask how long before a fistulagram diagnoses the problem and you can maybe save it. The answer coming back is a smirk and being told that there are lots of people waiting and they only have one session a week. I am afraid I lost my temper and told them that capacity problems are an administrative responsibility and the patient should not be penalised because of their inefficiency. I am desperate to keep the bloods good and the clearance rate up as this will, in time, help the reduced paraprotein levels clear out the amyloid from the liver. When I mention this I get a blank look, one nurse even asked me what amyloidosis was and asked if I were making a study of it. I am so used to being in control of my life that I cannot bear to be passive when I do not trust the deliverer of the information. When I asked if I could pay for a fistulagram privately the guy actually laughed. Not funny. I wonder how they would feel if the roles were reversed. They see people, they put them on the machines, they monitor the machines and that is job done. They go home. Do they have any idea how stressful the whole thing is. I cannot bear the thought of PD and therefore this is my only option. I am so glad it works for you and hope you stay away from hospitals for as long as possible.

Regards

[florence2 in reply to florence2]

Despite my deepest fears the five week delay has caused the fistula to fail. Rushed down to the main renal unit last Tuesday to be told fistula blocked. Next day fistulaplasty revealed a blockage that could not be cured and had to be patched and two other narrowings further up eased out with the balloon. Still so angry about the delays. When asking why first fistulagram failed to show the problem, some two months ago now, was told 'they were looking in the wrong place'. I have always believed that prevention is better than cure but obviously the renal units don't subscribe to this ethos. It has cost the NHS far more to fix the problem than to intervene early and prevent it happening. Apart from the cost there is the emotional cost in fear and stress which takes its toll on people who are already in a vulnerable state. I am not a number as Patrick McGoohan used to say. If you are old enough to remember the phrase that is.

[Quintillius]

Hello There. I have had a fistula in the past and never had any problems with it, then after a successful transplant failed me, I find myself faced with the prospect of another fistula. However for the interim period I am using a neck line and did not find the procedure at all uncomfortable or difficult to undergo. In fact I would say that I prefer the use of a neck line far less hassle then a fistula, because there is no need for needles. The lien simply luer locks onto the dialysis line and the process is far more simple. I prefer HD this way. I am due to have another fistula at the end of this month, so will be able to make a direct comparison then again from my previous experience of a fistula. Good luck with your urgent fistuloagram. I know that remedial surgery on some fistula is possible, so I hope they can sort yours out soon. Good fortune. Keep asking them questions and challenge what they tell you. It is your body and you have a right to know what is going on.