What to ask the surgeon?

[lee7462]

As I had mentioned, I am meeting with a surgeon soon to talk about having an access put in.  What questions should I ask?  Any advice, tips?  It's been about 9 years since I've done PD and I was really out of it when I had that cathedar replaced.  I will probably end up doing hemo this time.

[RichardMEL]

Hopefully you can have a fistula put in rather than a graft.. they are better for longer term use.

[kitkatz]

Okay let's see, what did I want to know before I saw the surgeon.....everything!

Is he going to map your veins and arteries in the arm first or slash and decide when he gets in there?
Where does he feel the best place for a fistula would be?
What about the viability of a graft?
Pros and cons on fistula and graft from him. 
Which one does he prefer and which one does he do most?
Which arm and why?
Will there be any restrictions to activities after surgery for the arm?  Weight restrictions?
What is the usual recovery time?
What do you need to do after surgery to keep the fistula working and to get it to grow?

Okay...I hope this helps.

[Rerun]

Just to add to Kit or expand.....ask about using a rubber ball to exercise your arm to enlarge the fistula.  Ask when you can start doing this after surgery and what the benefits would be. 

Good luck.

[stauffenberg]

I insisted on having and keeping a central line permcath, even though everyone said it would be useless and dangerous because of frequent infections.  But I had mine for nine years and it only needed to be replaced three times for infection, and even this replacement was a simple removal and re-insertion of the line along a guide wire.  With a permcath, there was 1) no pain on being hooked up to or taken off from the machine; 2) a blood flow of 450; 3) no recirculation; 4) no problems with deterioration or initial failure of the fistula; 5) no need for repeated testing of the fistula function; 6) no permanent disfigurement of the body; and 7) complete freedom of movement of both arms for the entire time on dialysis.  As long as you can keep the entry site of the catheter clean and dry, the permcath is a far superior access to a fistula, whatever nephrologists say, who mainly base their assessment on very old data about ancient permcath  models.

[Black]

Check out the links here:

http://www.fistulafirst.org/surgeon.htm

You might want to print out some of this and give it to your surgeon.

Hope it goes well for you. 

[Rerun]

I insisted on having and keeping a central line permcath, even though everyone said it would be useless and dangerous because of frequent infections.  But I had mine for nine years and it only needed to be replaced three times for infection, and even this replacement was a simple removal and re-insertion of the line along a guide wire.  With a permcath, there was 1) no pain on being hooked up to or taken off from the machine; 2) a blood flow of 450; 3) no recirculation; 4) no problems with deterioration or initial failure of the fistula; 5) no need for repeated testing of the fistula function; 6) no permanent disfigurement of the body; and 7) complete freedom of movement of both arms for the entire time on dialysis.  As long as you can keep the entry site of the catheter clean and dry, the permcath is a far superior access to a fistula, whatever nephrologists say, who mainly base their assessment on very old data about ancient permcath  models.

I agree completely!  I loved mine and only got rid of it because they badgered me.  It must be money.  They don't get near the surgeries with a permacath. 

Personal question here.......do you shower or bathe?  (no visuals please)   

[stauffenberg]

I always bathed rather than showered, being careful to wrap the catheter up in plastic and to fill the tub with only four or five inches of water.  ( I always used to think of King George, whose one concession to the English war effort during World War II was to mark all the tubs in Buckingham Palace with a line above which they could not be filled, just to save the precious energy used in heating the water.)  The few times I got in trouble with infection were due to sliding down too low in the tub and splashing water onto the catheter entrance site.  Strange to say, after having gotten a transplant I still continue to take only baths and retain some residual uneasiness about showering.   

[BigSteve]

I had my access done on April 5th and I knew the answer to the first question
to ask the surgeon. "How many times have you done this surgery before?"

[George Jung]

I insisted on having and keeping a central line permcath, even though everyone said it would be useless and dangerous because of frequent infections. But I had mine for nine years and it only needed to be replaced three times for infection, and even this replacement was a simple removal and re-insertion of the line along a guide wire. With a permcath, there was 1) no pain on being hooked up to or taken off from the machine; 2) a blood flow of 450; 3) no recirculation; 4) no problems with deterioration or initial failure of the fistula; 5) no need for repeated testing of the fistula function; 6) no permanent disfigurement of the body; and 7) complete freedom of movement of both arms for the entire time on dialysis. As long as you can keep the entry site of the catheter clean and dry, the permcath is a far superior access to a fistula, whatever nephrologists say, who mainly base their assessment on very old data about ancient permcath models.

This is exactly what I am going through right now.  I have had mine for 8 months now without ANY problem and I keep getting harassed at the center to have the fistula done.  It functions beautifully in my opinion, I know the rate of flow is above 400 and I have been told that I dialyize well.  I take showers but avoid direct contact, let it dry and then use a gauze to clean the site.  I do not dress it, only tape it down to keep it from moving and being too visible.  I have totally adjusted to it and am comfortable about it, thus my reluctance to get a fistula. 

Would there be some reason I would have trouble being evaluated for a possible transplant recipient if I refuse the advice and not get the fistula?  Would that be some non-compliant rubbish?

[Laurie]

This is exactly what I am going through right now. I have had mine for 8 months now without ANY problem and I keep getting harassed at the center to have the fistula done. It functions beautifully in my opinion, I know the rate of flow is above 400 and I have been told that I dialyize well. I take showers but avoid direct contact, let it dry and then use a gauze to clean the site. I do not dress it, only tape it down to keep it from moving and being too visible. I have totally adjusted to it and am comfortable about it, thus my reluctance to get a fistula.

Would there be some reason I would have trouble being evaluated for a possible transplant recipient if I refuse the advice and not get the fistula? Would that be some non-compliant rubbish?

George, at the present time, I am not on dialysis. I was about 6 years ago and had a permacath and I loved it. My plan this time when I have to start dialysis was to have a permacath again, because I'm on the transplant list and do not want to have a graft done. My Neph informed me that the Transplant team would not perform the transplant if you have a permacath, due to the risk of infection. If I were you, I would check with the Transplant hospital and see what they say.






EDITED: Fixed quote tag errors-kitkatz,moderator

[stauffenberg]

I had a transplant with my permcath in place and had absolutely no problem with infection.  There is an insane prejudice against permcaths among nephrologists, and it is so ungrounded in all the scientific studies that have been done that I suspect their objections to permcaths are in part at least due to their subconscious sadism, desiring to 'punish' the patient with painful needling for being sick.

[silverhead]

In my wifes case, she had a Fistula placed in her right arm, it finally was successful after the 4th surgery, many "problems" according to the surgeons, it works fine now, but they insisted they had to do it in her right arm, she is or was right handed, but now cannot use it to write or any fine motor skills because of nerve damage from the surgeries, so if you have a choice of arms, insist on the non-dominant arm if possible.....

[Black]

... if you have a choice of arms, insist on the non-dominant arm if possible.....

ITA!    When Mike went for vein mapping he refused to let them map his dominant arm.  He had been exercising his non-dominant hand/arm with a squeeze ball.  Despite the skepticism from the first surgeon, and some problems with the second surgeon, he now has, thanks to the third surgeon, a great fistula in his non-dominant arm.  It pays to switch doctors when they appear to not be capable or willing to do what you need done.