nervous about fistulA

[Cornbread20]

Hello all, again i think this is an awesome site.  I am scheduled to have a AV fistula this Friday, this is precautionary as I am not in need of dialysis as of yet. My GFR is 16, BUN is 35, Phos is actually 2.6 so my doc asks me to do the opposite of what he tells every other patient.  Other electrolytes are normal. PTH us PTH is in the 300s.   Symptoms I have are nausea, sleep disturbances, increasing restless leg and fatigue.  I usually blame a  lot of my symptoms on work but every now and then I admit its my kidney failure lol  I am on BP meds, a uric acid lowering medication and zemplar.  My diagnosis for CRF is focal segmental glomerulosclerosis, also uric acid tophi found in the kidneys via biopsy  I am a PA but as I mentioned in my introduction, it doesn't always help to have a medical background (when the doctors were telling me the dx after a biopsy they kept saying fsg fsg and i had no clue what they were talking about despite being in internal medicine, I just didn't recognize the short version of it but they assumed I did. Anyway, I am starting to get really anxious about the fistula placement (is it too early, what will my arm look like, what if there are complications which will stress me out because I am not on dialysis yet so I will feel angry probably).  I have considered PD but I couldn't mentally bring myself to do it (although everyone says: you are young (37), go with PD but I know it's not for me).  I do feel a little better reading other post about the fistulas. 

[Shaks24]

Hi Cornbread. I had fistula and PD catheter surgery 2 weeks ago. It was not that bad. I was real nervous too as it was my first time ever to have a surgical procedure. If you have any specific questions just ask away. I will answer best I can based on my recent experience.

[MooseMom]

Hi, Cornbread.  I have fsgs, too.  Once my gfr slipped below 20, I had my fistula created, and I don't mind telling you that I was terrified, not so much about the surgery but, rather, about what it symbolized.  In my mind, having a fistula created was the final step toward dialysis, a crossing of the Rubicon of sorts.  While I was being prepped for surgery, I just sobbed.  I demanded general anesthesia because I didn't want to remember anything about the whole damn day. 

The most important thing is to vet your vascular surgeon.  When I had my first appointment, I asked the surgeon about the amount of experience he had, and he replied that he had been "doing these things" (fistulas) at a rate of at least three or four times a month for well over 30 years.  He was careful to map my arm and then to draw all over it to show me exactly what was going to happen.

The surgery was uneventful and the wound healed well.  In my case, for the next six months at least, I'd feel really weird lightning like sensations down my arm (the spot where the vein joins the artery is right at the crook of my left arm), and in once instance it was so scary that I had an emergency apt with the surgeon.  He looked at me like I was crazy, like I was wasting his time, which didn't make me happy, but I had never had a fistula before, so I didn't know what "normal" felt like.  He was well compensated for his time, so I didn't much care if he thought I was bonkers.

I do have a 3 to 4 inch scar down my arm which is apparently bigger than normal, or so said my neph's nurse.  I was very lucky to have never had to use my fistula, so that area looks a tiny bit knotted, but the scar is more noticeable than any knot.  No one has ever mentioned noticing it, and I wear short sleeved shirts all summer long.

I have no idea if it is "too soon" for you to have a fistula.  I don't think anyone can answer that question because no one can know how quickly your renal function will decline.  The general sentiment is that the lower your gfr, the quicker the progression to ESRD, but there are always exceptions to that rule.  What I CAN tell you is that, at least in my case, once I had the damn thing created, I felt much more at peace and more secure knowing that it was there if/when I needed it.

[obsidianom]

Better to do the fistula sooner than later as it can sometimes take up to 4 to 6 months tyo mature . Sometimes , like in my wifes case , it can require a second surgery to enlarge it. Once it is mature it should just last whether you use it immediatly or not. If you do it too late you end up with a central catheter which can be more dangerous.
Make sure your vascular surgeon does a lot of these. Make sure you get ultrasound mapping first. The surgery is very simple usually and the recovery is quick. Not much pain.
Good luck.

[Cornbread20]

Thanks for the input.   It helps to know other folks are/were stressed about the surgery as well. My vascular surgeon also performs kidney transplants so I met him during my transplant work up and he comes highly recommended.  He is very nice, answers my questions but at the end of the day he is a surgeon and operating his his thing. 

The not knowing of kidney failure is stressful but I am coping better.

Like you all have mentioned, I want to make as many choices as possible rather than have choices made for me ie getting a catheter; so I know getting the fistula in advance is smart.  My nephrologist says if/when I need dialysis, it is only a bridge to transplant.  We shall see.

[skg]

I am someone else who has been nervous about getting a fistula. I'm not in dialysis yet, and am hoping to get a transplant before I need to. There have been two big unknowns for me -- how soon I would need dialysis and how long it would take to get a donor approved. So I've had to weigh my guesses at the risks and benefits.
My choice, thus far, has been to delay getting a fistula. It seems to have worked out OK, for me. I've got a donor approved and a transplant scheduled for November.

Still no guarantee I won't need dialysis before then, but hoping.

Not at all sure that it has been best to defer the fistula, since there are risks either way.

cheers,
skg

[Grumpy-1]

Word of caution, if you are not using it, make sure it is still working.  You should feel that funny sensation like a pulsing.  If that feeling starts to decrease or stop - have the surgeon look at it ASAP.  I had one that I didn't use (went to PD) and it lasted a year before closing up. By the time I realized it, it couldn't be repaired.  Grumpy

[Cornbread20]

Hi everyone. I had my surgery yesterday.  As a health care provider it is so humbling to be the patient.   I cried waiting to go into the OR, full of emotions; the nurses and docs just kept me the standard questions despite my eyes welling up. Thankfully my wife was with me yet I still felt alone.. Well, it's over and done.  I'm sore, dealing with some numbness but otherwise ok.  It's funny, now that I have the fistula, I have the urge to "fight" harder for my remaining kidney function. 

[Shaks24]

Hope you heal quickly and that your fistula works real well.

[MaryJoe]

Happy to hear your surgery went well. In my experience many hospital employees seem to get so used to the hospital environment that they seem to forget that no procedure is routine or minor to the patient. Any new medical procedure is extremely emotional and sometimes downright scary to me and I've found that being a nurse is not usually all that helpful in the moment. I hope your recovery is quick and as painless as possible. Maintain that fighting spirit!   

[MooseMom]

Hi everyone. I had my surgery yesterday.  As a health care provider it is so humbling to be the patient.   I cried waiting to go into the OR, full of emotions; the nurses and docs just kept me the standard questions despite my eyes welling up. Thankfully my wife was with me yet I still felt alone.. Well, it's over and done.  I'm sore, dealing with some numbness but otherwise ok.  It's funny, now that I have the fistula, I have the urge to "fight" harder for my remaining kidney function.

OMG, that could have been me writing this.  I REALLY know how you feel.    This can be such a lonely road we travel.

[Cornbread20]

Thanks to everyone for responding.  It really helped.  I am getting used to the "thrill", I actually though my phone was vibrating at one point..   and now just some residual pain/numbness/burning in my thumb. 

[MooseMom]

Thanks to everyone for responding.  It really helped.  I am getting used to the "thrill", I actually though my phone was vibrating at one point..   and now just some residual pain/numbness/burning in my thumb.

Oh geez, when I hold the phone in my fistula arm hand, I can hear the buzzing through the line.  I hate that.  Glad you are getting used to it!

[Mr Pink]

Hi there cornbread. I too have a fistula and it works pretty well. I try and get down to the gym a couple of times a week, although some weeks that's easier said than done. I do cardio mostly, to keep the ticker in good shape. I do lift some light weights though, to keep the fistula healthy. When the nurses needle me, they hit the mark every time. They say that my fistula is one of the easiest to needle at my centre, so I keep going to the gym to exercise it. I guess the more you exercise it, the healthier your fistula will be, and the easier it will be for the needles to go in. Good luck.

[Fisherman]

I had my fistula done about 6 weeks ago.  Seems to have healed ok, and not having any problem.  I had a follow up scan and got a letter saying it looks good, but I never feel the "thrill" that other people talk about.  That worries me a little.  I haven't started dialysis yet...don't know how soon it will be.

[Grumpy-1]

Fisherman   when I had a working fistula, the only time I could feel the "Thrill" was to put my fingers on the fistula.  (note not the scar where they open you up) then I could feel the pulsing of the blood flow.  You may want to have it checked out the next visit to your Dr.   Grumpy

[Fisherman]

I had my fistula placed about 2 months ago.  It wasn't bad at all and healed up well.  I'm an archer and was worried about shooting my bow, but I'm having no problems with that at this time.  I'm not on dialysis yet, and am at the same GFR as you are.  Hope it goes as well for you as it has for me.

[Ritamghosh]

hello everyone...
     is hemodialysis need several fistula ... i mean when the fistula is blocked by someway ..is they make an another fistula???
cause i have seen a patient with several fistula in his body like in his hand and in his leg and neck also..so m worried because
my aunt gonna start fistula pro soon.....

[obsidianom]

hello everyone...
     is hemodialysis need several fistula ... i mean when the fistula is blocked by someway ..is they make an another fistula???
cause i have seen a patient with several fistula in his body like in his hand and in his leg and neck also..so m worried because
my aunt gonna start fistula pro soon.....

Some patients need to have new fistulas placed when the original one becomes unusable . Some patients can have a single fistula last for many years. Everyone is different. Fistulas are the best access for dialysis.

[Sue]

Hi Cornbread, keep fighting I had my fistula placed over two years ago when my function dropped to 11% . Since then I have had several procedures to fix minor issues, I have been hovering around the 12% mark but have not started dialysis yet !