No "thrill"

[Newatdis]

Has anyone had problems with their av fistula? I was dialysing very well unti last friday when after dialysis my blood presure dropped and the next day i couldn't feel the "thrill" on my fistula it just stopped working allofthe sudden..i have it on my forearm and now i sort of fell a small "thrill" on the side of my arm...i don't know if it moved or it just stopped working

[wolfmom94]

My son has a fistula in his upper left arm. Yes, it can & does move-but by mere millimeters not inches. At times I do have trouble with accessing (I am his "tech",) he's going to have an ultrasound on it on 8/1, which is what they may have you do. I too am new to this, both home hemodialysis & this site so I'm very interested in hearing results of what happens with you & peoples responses! Thank you for speaking up about this & I'm hoping things go very well for you! Oh, do you have a stethoscope? Have you tried listening for it? I've heard that sometimes even though you may not feel it, it will sound (& work) just fine!

[Newatdis in reply to wolfmom94]

Thank you for your feedback...i will let you know on tuesday the outcome..no i don't have a stethoscope..the funny thing is that it used to vibrate like crazy and no w nothing not even my vain popsout like it used to.

[wolfmom94 in reply to Newatdis]

I'm sorry you're dealing with this-it's always the not knowing that gets to you! Just a couple more days to get through! Hang in there ok?!

[Newatdis in reply to wolfmom94]

Thanks..

[wolfmom94 in reply to Newatdis]

Ok, so how "newatdis" are you? lol When did you get your fistula? When were you diagnosed? Are you on the transplant list yet? (Just getting an idea of what's up! You never have to answer any of my questions if you feel I am getting too personal ok?!)

[Newatdis in reply to wolfmom94]

Going on my 7thmonth...i was diagnosed this year..i live in a 3rd world country so their is no hope for a transplant list...i have to find a doner and pay$ 30,000. For the transplant..i'm dialysing 2 times a week..paying $120...it's expensive my monthly wage is $320. So i don't have the money for the transplant...so as long as i can dialyse i hope to live alittle longer...i just hope the problem with my fistula is not serious.. Don't worry about getting to personal..as long as you can give me insight on how to feel better. Thanks

[wolfmom94 in reply to Newatdis]

Are you on any food or fluid restrictions? Do you have a renal doctor & dietitian? I'm sorry about the area you are in, any chance of going to US or England? I dont know where you're at so I'm not sure of the possibilities of leaving are. How are you getting dialysis now? Do they have some financial aid for you? Sorry for all the questions, just trying to figure out where/how to start helping you is all!

[Newatdis in reply to wolfmom94]

Well they say all food is bad...i try too keep the water to 1.5 liters daily..i don't want to deal with cramps...but this last time i think they took too much fluid out...i have a doctor and dietitian that check up on me while i'm dialysing.no finacial aid i'ts a in center treatment so i pay everytime..no way of traveling..although England would be nice..

[wolfmom94 in reply to Newatdis]

Certain foods are restricted; high potassium & phosphorous (like potatoes, bananas, dairy products.) It depends on your levels. How often do you do labs? Do they tell you what your levels are? Your dietitian should help you by going over your lab results & coming up with a diet plan. All foods are not bad, some are really good for you! How often do you see your doctor & your dietitian? You get cramps if you drink too much? I'm not familiar with that, my son will cramp but only if/when I take off too much fluid. Are you on medications? I'm really hoping you start feeling better! I think once you talk to the dietitian & begin eating right you will feel better! (I dont think I'm much help to you but I am trying though!)

[Newatdis in reply to wolfmom94]

I have labs this month to check.. last time i checked my potassium and phosphorus were high...so they have been cranking up the dialyser to 400..no meds..just a shot for more blood production...when i started my blood count was to 6 now i got it up to 11..i was dying if it wasn't for dialysis i wouldn't be writing asking for advice and help..thank you

[Newatdis in reply to Newatdis]

I see my dietitian everytime i go for treatment..she only gave me a list of foods to avoid..

[wolfmom94 in reply to Newatdis]

Have you checked online? National Kidney Foundation has a food section with recipes too! It's kidney.org - I just went & searched "acceptable foods" & "recipes" real quick & they have great topics & recipes! Also try Googling.

Oh, also when you go to dialysis next time, see if they have any extra stethoscopes you can have. Sometimes they do.

Can I ask where you're at? No exact address or anything like that, just something like England or Brazil. I'm in Washington State, USA, so currently right now it's 8pm.

[Newatdis in reply to wolfmom94]

I'm in central America..El Salvador..

[wolfmom94 in reply to Newatdis]

Here's another 1 I found:

kidneycommunitykitchen.ca/k...

[Newatdis in reply to wolfmom94]

Wow those look really good..i'm going to try them thanks alot

[wolfmom94 in reply to Newatdis]

Sweetie I just googled! I know you have alot on your plate right now tho, so I'm glad I actually helped you! lol

[Newatdis in reply to wolfmom94]

Thank you alot..

[wolfmom94 in reply to Newatdis]

Aw, you're welcome sweetie! I just hope someone's advice helps you! There's nothing I can do up here in Washington but I can look stuff up for you

[wolfmom94 in reply to Newatdis]

Great job getting that up! My son has a shot for that also, it's called Mircera here & he gets it every 2 weeks. He too has trouble keeping it up so I know how hard that is-congratulations to you! Yes, dialysis helps prolong your life, I'm glad your on it & still here fighting! As I advised, get with your dietitian & work out a meal plan-food is not bad! It's just what you eat & how much you eat. Besides your fistula, are you having any other problems? My son has the "normal" problems associated with dialysis such as trouble sleeping, itching, low hemoglobin, etc. I really feel like I havent been much help but I am here to talk to if you want.

[Newatdis in reply to wolfmom94]

I sleep well only the itching thanks for your help

[Newatdis in reply to wolfmom94]

Thanks for the info highly appreciated

[wolfmom94 in reply to Newatdis]

I didnt help much lol. As I said, I was looking forward to seeing everyone's replies because I havent dealt with this yet. They have some very good advice & I'm glad you got their advice/opinions. I just googled some stuff for you lol I didnt mind, I wasnt doing anything at that moment

Hope today (Tuesday) goes well for you & everything works out! Good luck & keep us updated ok?! Take care Newatdis!!

[Newatdis in reply to wolfmom94]

The tech and the doctor told me to exercise with a ball. To try and save the fistula if not i'll need a new fistua..they said it might have happened because of hypotension..guess i have to save for a new fistula...thanks for everything

[wolfmom94 in reply to Newatdis]

Well, let's just pray that you dont need a new fistula ok?! 1st things 1st ok?! My son had to squeeze a ball to build his up too. It worked! So please dont give up hope ok!! Do that ball! It may seem "stupid" but it's worth it if it works right!!! Keep up the hope & positive attitude-that will/does help!

[Newatdis in reply to wolfmom94]

Well my fistula is not working 100% they told me i was loosing my fistula..it works only at 300 blood flow so my dialysing time will be longer..my tech said she would look for another vein with higher flow..

[wolfmom94 in reply to Newatdis]

Hmm, dam, sorry to hear that! Is it something they can fix? Here they call it "open it up some"-can they do that? What about a graft? Is that possible for you? I know funds are low, which option would be better for you & cost effective? We're praying for you!

[Newatdis in reply to wolfmom94]

Thank you...well i went to dialysis friday and the tech found a new vein..close to where my insision was made for the av fistula...it worked well the only problem is that it takes along time to stop bleeding cause it's close to where the pulse is...but as long as it works for a while..i'm ok with it..more work for the tech though...

[wolfmom94 in reply to Newatdis]

I think I told you that I home hemodialyze my son, sometimes I have a very hard time stopping the bleeding on one or both of his sites also! I'm to do an Arterial (below, where it takes out the blood & it goes thru the machine) and a Venus (above, where the blood goes back in) into the fistula. I've even had to call the 24hr nurse line because it was going on 45 minutes of bleeding! So I can see how that can happen to anyone! I'm glad tho that they were able to find a way to dialyze you without having to do a new fistula or graft! That's great news isnt it?! & dont worry about the tech, that's what they are there for!! I loved our tech's when my son went to the center! It didnt matter what, they just did it! Is it like that for you?

[Newatdis in reply to wolfmom94]

Yes the techs are nice...they cheer me up there isn't a dull moment when i'm in dialysis..

[wolfmom94 in reply to Newatdis]

My son's tech's were that way too! Always joking around, playful, laughing--makes the time go by faster doesnt it?! It's great that it's that way for you too! I'm glad!

[Newatdis in reply to wolfmom94]

Thanks for your prayers..

[wolfmom94 in reply to Newatdis]

How are you? How are things going for you?

[Newatdis in reply to wolfmom94]

I could say that everything is working out just fine. Thanks for asking...

[wolfmom94 in reply to Newatdis]

Oh that's wonderful news!! So happy for you! Praying it stays good & gets better!

[Philipjm]

Hi,

You should regularly check the thrill/bruit is there.

If not contact your renal nurse.

I have been on home had for 12 months and develop stenosis often.

I have had 4 fistula-grams, last one last Thursday. Got to know the surgeons now!!!

Procedure takes about an hour , fistula working good again.

Philip

[Philipjm in reply to Philipjm]

Hi , as Margaret says you should contact your renal unit when you suspect your fistula is not working.

They will

Ask to to go to the unit to have it checked, first time happened to me I was in surgery within a few hours to have it fixed. If it does fail you may need to have a catheter in your neck as a temporary “fix” while while you have a new fistula formed.

Philip

[Philipjm in reply to Philipjm]

Hi,

Do you have a monthly Q&A at your unit to check how well your fistula/dialysis is working, this is normal in most units in the Uk

Philip

[Newatdis in reply to Philipjm]

Thank you iwill let you now tomorrow..the outcome

[Newatdis in reply to Philipjm]

Thank you but what are fistula grams? Is it like surgery

[Philipjm in reply to Newatdis]

Hi,

Fistulagram is a short procedure to enlarge any parts of the vein that have stenosis (a restriction) or a more complex would be a fistulaplasty where a sheath may be inserted.

I have had 4 took between half and 1hour and works well again.

It seems I have to have one every 3-4 months

Philip

[Newatdis in reply to Philipjm]

I will ask the surgeon about this...thank you very much..

[Mgt8]

Hi

Sorry to here this... I was told if this happens,contact renal team right away...

The sooner they catch it,the better they can fix it... I would ring today and tell them.....

All the best,

Margaret

[TamekaS]

Hello, m sorry this is happening. I think u should call and be seen asap if u haven't already. U could possibly have a small clot that is keeping u from from feeling it as strongly as u used to, so u don't want to just put it off, remember this is it life line. Wishing u the best, take care.

[Newatdis in reply to TamekaS]

Thank you will do..

[Newatdis in reply to TamekaS]

Yes thank you i will know tomorrow what is happening..

[wolfmom94]

So New, any news to share with us? How are you feeling? How is your fistula holding up? Did you have the fistulagram? What's been going on? Just curious as to how you're coming along & stuff! Let us know ok?! Prayers are with you!!