AAAGGGHHHH

[Ziggydoodah]

I have been having issues with my fistula arm. My hand has been going numb and I have also had really bad pins and needles. This has been going on, since Christmas. I have been telling the staff at the dialysis unit, nearly every week but they didn't seem bothered. The nurse practitioner diagnosed it as Carpel Tunnel syndrome as that's what she has? 🙄. I insisted it was something to do with my fistula. She said it wasn't and it wasn't their issue and I should see my GP. Eventually the fistula nurse spoke to the surgeon and she said to make an appointment. Yesterday I attended my appointment. Turns out there is an issue with my fistula. The blood flow is too strong. Great for dialysis but could lead to serious heart issues in the future. Now I have to get an operation to rectify it and might have to get a line put in temporarily🙈 It's just so frustrating when staff don't listen to you. Four times I have had to argue with them over blood results, low iron levels etc. And of those four times I was right. People know their bodies and try to educate themselves about their conditions but sometimes the medical staff can be very condescending. So my point to this long and rambling post is...Always trust your instincts. If you feel something is wrong, make sure your medical tream address it. If they don't, keep going going until they do. They are always quick to say, don't google things but the Internet has been a huge help to me, since diagnosed. Especially Healthunlocked. Have a good day everyone🤗🤗

[Bassetmommer NKF Ambassador]

oh yes, the clinician who told you it was Carpal tunnel.... I would talk to her supervisor. Fistula issues are not something to mess with and there is something called Steal syndrome that a dialysis nurse should have known. Sorry you have to go through this.

pubmed.ncbi.nlm.nih.gov/188...

[Ziggydoodah in reply to Bassetmommer]

Thanks Bassetmommer. Yes I have all the signs for Steal Syndrome too. Fingers going blue etc. Unfortunately there is no-one to complain to. The Nurse Practioners were introduced, so the consultants were not bothered by patients. Lots of patients complain about them but nothing gets done. I do have an appointment with my consultant soon. So I will be bringing it up with him. Thank you for your reply x

[RonZone]

This is a great example illustrating the need for a person to advocate for themselves. I really hate that you had to go through this to provide this example, but I hope it gives others the courage to address issues they know and feel need to be addressing in their own situations. Now that being said, it is a fine line we walk in being an advocate for ourselves, AND supporting the team that we use to keep us alive. Sometimes it's very difficult to figure out how to say something about an issue without getting the team's feather's ruffled. I have personally ruffled some feathers more than a couple of times in the last year, and I'm slowly learning how to address an issue so that it doesn't seem like I'm taking issue with the care I'm being given, while strongly adhering to my stance for what I feel needs to be addressed. I try to focus on the issue, not the people. That seems to be working so far. I also have lamented that I have to go through my PD nurse for everything. I'm not allowed to speak to my doc except once a month, so during an immediate situation where I disagree with my PD nurse, sometimes it's not possible to wait until I see the Neph, I have to figure out a way to get the PD nurse to understand my concerns, from my point of view. Sometimes I'm successful, sometimes I'm not and I have to wait and address it with the Neph. So it is in the life of a dialysis patient, trying to have the best possible journey possible.

[KidneyCoach NKF Ambassador]

Carpal tunnel syndrome is more common with dialysis persons. The key difference between steal S. and carpal tunnel syndrome is this (generally) with steal syndrome the pain is the whole hand and or the ring and pinky fingers....carpal tunnel syndrome it is painful with thumb, first and middle finger. I've had steal syndrome and carpal tunnel syndrome. I did have surgery on both hands. I now have carpal tunnel syndrome in one hand and cubital tunnel syndrome in the other arm (at elbow) after 10+ years. Trying to stave off surgery, but know it's inevitable.

Just hang in there. You're right to advocate for yourself. Blessings

[Miss-guineapig]

I don’t know about Fistula issues, this CKD journey is new to me, but I felt your positivity and motivation when I read your post. You are an inspiration actually. Keep well and keep us posted Ziggy, x