Hi everyone,
I had my fistula done 5/4/21. It had worked great in dialysis until 2 weeks ago when my clearance numbers started going down to .8.
I had my first Fistulogram yesterday and apparently is was a complete fail! My clearance at dialysis today was lower than before the procedure: .58.
This is frightening as this obviously my lifeline.
Feedback much appreciated! Thank you.
Dear BeachLove,
The reason(s) that your fistula might be, shall I say 'Misbehaving', are manyfold but that isn't the real Problem.... it's the Clearence Level. Have you asked about having a 'Line' put in. These are two 'Pipes' connected hear the heart, that allow, blood to be Removed/Added without hinderance. I'm not suggesting this be Permenant necessarily- just until you Fistula 'Recovers' a bit..... which it Should given time.
I was on Dialysis for Four years, prior to my Transplant- in July 2013- and had, very few 'Problems'......except when a Nurse, at a Unit I Was Using When On Holiday, nearly Blew my Fistula! THAT Dialysis had to use a Single Needle System, which is far less effective, and their SENIOR had to 'Find' my vein the next tine. Thankfully all was Well thereafter.
Did you, like me, have a ptroblem with the Person DOING the Dialysis, rather than the Dialysis itself. if you see what I'm asking?
Hoping 'everything' is sorted soon.
AndrewT
Hi Beach Love,
Sorry, my posts tend to be long. I was on dialysis for 9 years. I had a graft, fistula, heart cath, and PD line. My graft clotted after 6 months and had to be unclogged again 5 months later. I switched to peritoneal dialysis 18 months after starting hemo and didn't use my graft again for almost 2 years. It clotted a few months after returning to hemo permanently, at which time they put a fistula in. The tech blew the fistula on the first poke and I ended up with a heart cath for 6 months. I had the fistula removed 3 years after my transplant, even though it had been working perfectly because it was causing stress on my heart and making my arm unusable.
The bottom line, it's not unusual to go through several accesses and have them revised multiple times. Sometimes through no one's fault, the accesses just don't perform well. Now is the time to speak with your doctors and surgeons if you are due to have a revision, let them know what works well in terms of needle positions (do they need to be propped up?) locations on the fistula (are there certain spots that just don't work well and constantly trip the alarms?).
If they choose to put in a new fistula ask them why they are choosing a specific location, why they think that will be a better spot than the old one, what they have learned about your anatomy or potential problems from your previous fistula, and what actions you and the techs can take to make sure the fistula continues to work well.
I know plenty of dialysis patients who learned how to stick themselves after having too many techs mess up a perfectly good access. I am usually very easygoing, but I also had certain techs I refused to let touch my fistula because I always had problems on the machine when they placed needles, or worse they refused to listen about where not to stick me or how to place needles, which would ultimately send the machine into constant alarming.
Good luck.
Thank you. You have been through a lot and I sincerely wish you well!
I had an AV Graft in my L forearm. When it failed they put a type of port in my chest and I had that until several months after my transplant
My fistula stopped working after about 1 1/2 years, so they put a port in my chest, which is not ideal but was the only solution I had. Luckily, after about another year I received my transplant. I hope that you will be lucky, too! I wish you the best!
Thank you! That gives me hope.
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