GFR so low, why would they wait to start hemo?

[IrishGirl]

I got back my tests and do NOT have the Polycystic my sister and brother do. My brother is getting set up for his fistula and is having a "mapping" this week by the vascular people. Does anyone know what this is? It must be an xray of sorts,. do they use dye? He is nervous about it. My questions now will pertain mostly to him and my sister. They both are getting set up for hemodialysis. My brother has a GFR of 10 and says he can taste ammonia in his mouth. He is very cold, very tired, and very weak. All he does is sleep, he can no longer work. I dont see why they are waiting so long. They waited like this with my dad and he had a heart attack while he was still waiting. It seems to be very hard on my brother's overall general health, it has to be very hard on his cardiac system with all that extra fluid etc.  What would be the advantage to waiting this long to start?

[monrein]

If it is at all like what I had done, the mapping is a simple ultrasound of the veins and arteries in the arm where they will create the fistula.  No pain no problem.  They use a gel and a smooth ultrasound wand.  Tell him no need to be nervous about the mapping.  It helps the vascular surgeon to plan his/her work before going in.

I don't know why they're waiting so long but if your brother is feeling like crap (and it sounds as if he is) then he should really push that with his nephrologist and say that he doesn't want to wait any more.  He may need to be persistent.  Everyone is so different and some feel OK with terrible numbers and others (me included this time around) feel dreadful with not so bad numbers.

If I were your brother, I'd mention what happened to your Dad and say how petrified I am of that happening to me and that I don't think I can hold off any longer.  It may be a resource issue depending on where you live but I'd push and push.

Good luck with all this and come here often.

[IrishGirl]

Thanks for your helpful information. I really appreciate it!

[Rerun]

If they are just now doing the mapping of the arm then it will be 4 to 6 months before he can use his fistula after it is created. They may create a graft which uses man-made material like gortex and it can be used lots sooner.  My point here is to prepare your brother that he may need a permacath placed in his upper chest for early dialysis.  This will allow him to get started on dialysis and let his fistula/graft heal properly.

[flip]

They started using my fistula when it was 6 weeks old. They used smaller needles (17) and gradually worked up to the 15 gauge I use now.

[Psim]

Irish girl, I'm so glad to hear you don't have polycystic! Wish the same was true of the rest of your family. Hoping your brother gets dialysis soon.

[IrishGirl]

Thanks for the comments and help. I am thrilled that I dodged the bullet...but so far I have
lost my dad years ago as a very young girl to the disease and now my only sister and my only
brother have it as well. Its weird that I am the only child who did not contract it! . I would like to donate to my brother but he wont hear of it, and although nobody in medicine has said so, many others have expressed doubt they would accept me as a donor anyhow. I hope he can avoid the permacath...but his Dr did tell him that he may need a chest line if the need arises before the fistula is ready. My dad died right after his fistula went in, but he had a heart attack...I am certain it was brought on partially due to the kidney disease putting a toll on him..forcing his heart to work harder. Of course this was all some 30 years ago...things have changed, thank goodness.