I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: SweetyPie on May 22, 2019, 07:46:24 PM
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Hey all,
So I have been thinking a lot. This is my second year and a half on hemo. I first started off with a cath on my right shoulder...ish or collarbone? And got an infection a year later so I got a new cath on my left side in October 2018. With my difficult situation I am not sure when I will get a kidney despite me being high on the list. The burses and techs ask me every few weeks when I am gettinf a fistula but i am terrified. I dont mean to sound rude but I have seen the way they look on some patients :( I dont want to deal with needles each season and we you can barely move your arm or the machine beeps!! What should I do? My cath wont last forever and this situation stresses me out so much
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Getting a fistula is a painless affair as they freeze your arm for the procedure so you just lay there for an hour while they connect a vein to an artery you feel nothing,After a few months when the fistula is mature they at first will insert a needle in the vein for the outflow and hook up the return to your catheter,if all goes well after a couple of weeks they will then use the return needle into the fistula, after another couple of weeks of successful fistula operation they will then recommend removal of the catheter.
Its all somewhat inconvenient but ultimately its supposed to be a more natural way of doing things, be aware different tech/nurses have different techniques of needling,some you dont feel a thing others not so much. you are right about the inconvenience of trying to keep your arm immobile for 4 hours 3X a week, The whole dialysis procedure sucks but ya gotta do what you gotta do eh.
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Aaisha.Dar take your time, but they push the fistula because it is safer and people live longer using them, that’s why our health system rates centers are down scored in ratings when they have high catheter use. You have the opportunity to really benefit from the extended longevity so at some point, when you are ready, you should make the move. In the end the the process with needles comes routine.
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The catheter offers a direct line to your heart for any infection. It's not fun either way, they certainly are not stylish, but a fistula or graft serves a purpose.
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My fistula works much better than my catheter ever thought of. I have an upper arm fistula, and I can move my arm a little bit without causing any problems. An example of this, I sometimes jump in my sleep. I was sleeping in dialysis one evening, and I jumped and woke myself up. I noticed that my arm had moved pretty uncontrollably, but did not set the alarm off. You find out quickly what you can and can't do, depending on where your fistula is.
I've had my fistula since November 2009, and it's never failed me. It's still going strong and I've never had any issues with it. I had the catheter for a year and a half, and by June of 2010, it was no longer usable, which was fine because we'd gotten my fistula working with 2 needles by that point and the catheter was no longer needed.
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For all of you who commented
How does it look on the arm? A nurse told me I am younger my veins are smaller it wont bulge out like some people and to also wear short sleeves all the time... that doesn seem do able tho. Its a huge decision because this is something permanent on my arm...
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Ah, I'm late to answer!
Aaisha, my dear (I hope calling you dear is fine, I just really feel for you!), I understand how you feel. I’ve been in your shoes. I fought a fistula tooth and nails!
At the bottom line, I’m going to suggest a fistula. They can get ugly and I know the needles are scary, but I’m gonna share advice given to me. You are a young girl and with a long life ahead of you. You need to preserve your spots for possible vascular access in the future. From the bottom of my heart, I hope to see you living your life as an awesome senior citizen, and at that time, new fistulas can be difficult to establish, due to aging/shrinking veins. So, I was advised to save my accesses around my collarbone for a time a fistula might not work/fail/need a spot to continue dialysis. I hope that by that time there are MUCH better options than hemo... but we aren't working with those scenarios right now.
I finished up dialysis (because of transplant) with a catheter so I know how comfortable they are and how much easier they make the process. But you know what? I was waiting for a new fistula to be established; I had part one of the surgery. Fistulas and I don’t get along well (I have teeny tiny veins, I am a delicate flower, hahahaha) so they tried and tried to get one that works. I’ve had an AV graft that stopped functioning so I know arms can get ugly. And as I know, girl to girl, we care about that.
While I preferred life with a catheter, I still understood that a fistula was the best form for longevity of the access and health concerns, such as infection. It hopefully offers more mileage or “use per year” than replacing catheters.
In a perfect world, I would say catheter all the way but for longevity of accesses, it’s a fistula.
As for how it looks, I agree with your nurse: I have small veins so it did not bulge as much as others you see. But, that also mean that I had a difficult time to keep it chugging. Catch 22 in a way. My arms looked like they were mauled by Siberian tigers.... ain't gonna lie.
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Ah, I'm late to answer!
Aaisha, my dear (I hope calling you dear is fine, I just really feel for you!), I understand how you feel. I’ve been in your shoes. I fought a fistula tooth and nails!
At the bottom line, I’m going to suggest a fistula. They can get ugly and I know the needles are scary, but I’m gonna share advice given to me. You are a young girl and with a long life ahead of you. You need to preserve your spots for possible vascular access in the future. From the bottom of my heart, I hope to see you living your life as an awesome senior citizen, and at that time, new fistulas can be difficult to establish, due to aging/shrinking veins. So, I was advised to save my accesses around my collarbone for a time a fistula might not work/fail/need a spot to continue dialysis. I hope that by that time there are MUCH better options than hemo... but we aren't working with those scenarios right now.
I finished up dialysis (because of transplant) with a catheter so I know how comfortable they are and how much easier they make the process. But you know what? I was waiting for a new fistula to be established; I had part one of the surgery. Fistulas and I don’t get along well (I have teeny tiny veins, I am a delicate flower, hahahaha) so they tried and tried to get one that works. I’ve had an AV graft that stopped functioning so I know arms can get ugly. And as I know, girl to girl, we care about that.
While I preferred life with a catheter, I still understood that a fistula was the best form for longevity of the access and health concerns, such as infection. It hopefully offers more mileage or “use per year” than replacing catheters.
In a perfect world, I would say catheter all the way but for longevity of accesses, it’s a fistula.
As for how it looks, I agree with your nurse: I have small veins so it did not bulge as much as others you see. But, that also mean that I had a difficult time to keep it chugging. Catch 22 in a way. My arms looked like they were mauled by Siberian tigers.... ain't gonna lie.
Thank you for your reply it really got me thinking. And also thank you for your kind words (you can call me dear :).
I totally agree with you all this is the best option health wise. I hate needles I was ao happy I didnt have to deal with it and ugh the looks of man I might just cry if I look at each time. I know it sounds bad but im a girl and I care what my arms look like. I have so many other scars on my stomach, a g tube hole and cath holes on my body. Its already a bad reminder of my past you know.
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I understand all of this! This life is not easy and we are faced with decisions that we wish we didn't have to make. But, we still have to make them.
Fellow needlephobe here too! I hate them and they just give me the creeps. Watching the nurses insert the needles was a no-go. No way. Nope. Just didn't watch. As for insertion pain, there are lidocaine and prilocaine creams (or sprays) to apply before treatment so that your arm is numbed. It's not a 100% solution but it does work somewhat, at least for me.
Your concerns over your arms and scars are totally valid. This is gonna peeve off some people in the general dialysis world but here, let it fly. Many just don't understand what it's like to younger and some estrogen levels above a post-menopausal turtle! Damn straight we care what we look like. So, yeah, often concerns like this are dismissed saying, "you are alive, what is more important. Life or vanity?" Well.... do you want us to live miserable then? I better stop because this can turn into a rant and I'll say some regrettable stuff! :rofl;
Many girls will say their scars are their proof they are warriors and the marks tell a story how they're strong/unique. That's a good way of looking it. One girl has this cute caption something like, "He loves me because I scar well." After the whole shock of scars and such, you learn to accept them and have some sort of pride?! (maybe not that word exactly) that you have been through some tough stuff. That makes you a special human being.
When I first started with fistulas and grafts, I changed the way I dressed. I loved sleeveless stuff and often one shouldered. I started to hide my arms because I was totally embarrassed and didn't like the looks. People looked, I'll admit it. I would have preferred if they asked questions. But over time, I just said, screw it. I'll wear what I want because this life is too short to be focused on "oooh, do my arms look bad." There are loads of cute tops these days that have sheer materials and lace... so, if you don't feel comfortable going all out yet, there are workarounds!
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I am also nervous about pain, I dont want to be in pain. This whole situation is actually really tough. How long do you spend in the hospital,? I dont mean to sound like a baby at all. Once the fistula is in, its there permanently. Im.not mentally ready for this. I am off from school so imagine all the thoughts going on in my head.
I appreciate everyone's input.
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My fistula took 7 months to mature, but the end result was good. It's runs on the surface nearly the entire length of my non-dominant forearm. We've been using it for 3 months now and it looks OK. I could wear short sleeves and I don't think anyone would notice. If anything, it makes your are look slightly muscular, like you've been working out at the gym.
I chose to go directly to sharps, skipping the button-hole type of insertion. With the lidocaine they'll give you, there is very little or -most often- zero pain.
BTW, you'll probably have to make a couple of visits to a vascular care center for them to fine-tune your fistula. Again, the procedures there aren't too hard on you ....similar to when then inserted your permcath.
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I am also nervous about pain, I dont want to be in pain. This whole situation is actually really tough. How long do you spend in the hospital,? I dont mean to sound like a baby at all. Once the fistula is in, its there permanently. Im.not mentally ready for this. I am off from school so imagine all the thoughts going on in my head.
I appreciate everyone's input.
You're not a baby. You're a young person with a lot of questions and fears. That's fine. There aren't many outlets to say "hey, I'm scared" and have people understand. I'm the baby that cries in pre-surgical! ;D
Pain: If I could rate the pain, at least for me, it was a 5 to 7 on a scale of 10. The procedure was a bit more complicated than usual because my veins are super tiny. After the freezing came out, that was the worst of it but I was supplied some good painkillers. After the first two nights, pain was minimal. As for usage for dialysis, post-needles, I didn't experience any pain but just annoyance of keeping the arm (mostly still). If you get an upper arm fistula, it doesn't seem as bad to keep that still, at least for me.
Hospital Time: After the procedure, they kept me in the hospital for 3 to 5 hours. It depended on whether they gave me a general anesthetic or a twilight. But yes, you'll have to see the vascular surgeon for some other appointments, vein mapping, etc, before you get to this point.
Yes, it's true that it's in there permanently and it will continue to buzz along (that is if you do not have any problems and need it closed off, etc) post-tx. But it's often forgotten about, at least here. I pay attention how I sleep (no pressure on the arms) but all that vascular work is an afterthought now. Just living with the accesses.. like any other day.
That's the tough part about all of this. You say you are high up on the tx list but you never really know when the call will come. It could be awhile and you could need a more permanent access. Limbo sucks. I was in the process of getting a new fistula set up when I got the call... if I knew they'd call as soon as they did, I would have said to hold off. It's a gamble.
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For me the surgery was in and out same day outpatient in a hospital. The surgery was early day 6:30 so I had to arrive very early say 5 am. In the early afternoon after I woke up and was coherent I was discharged.
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I went in at about 5:30. They used a block and light sedation, though I woke up part way through and talked to the doctor the rest of the way. Took maybe an hour and an hour after that I was on the way home. Really did not like the block though as I had no feeling in that arm until around seven that night. My arm was in a sling and it was like I had to carry it around all day.
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The pain is highly variable. In my case, there was no pain and any discomfort was less than that of a dental cleaning.
My fistula has been in almost 7 years, and still makes all those good fistula noises 9.5 months post xplant.
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I had my Cath for a year as my fistula didn't develop well enough, need a revision, and a few angioplasties after that.
Left bicep, covers with T-shirt sleeves.
It actually seems to have slimmed down, but I expect that is only until my next angioplasty this fall. Otherwise it looks like I am trying to hide a fat worm alongside the white scar line from the revision.
Then again, being a 'Guy' I don't mind slight imperfections. I can understand how this can bother many people. The way I see things like this is if it comes to making a decision on appears or living, screw appearance. Does this make sense?
Now, you said something about small veins. A fistula develops because veins (return flow) do not have the high pressure serges that Venous (supply side) has. This high pressure surges cause a normally lower pressure vein to begin to bulge, sort of like a long ballon begins to swell in one spot, then as the pressure increases the ballons swelling begins to grow longer. Sort of the same thing occurs as the vein develops, it swells, enlarges so to more easily handle the increased pressure and flow of the arterial blood.
It is Mother Nature protecting her own. Once the fistula has 'matured' well enough then the clinic can begin using it.
Flow rates of a matured fistula are far far greater than any cath. Adequate treatment depends on good flow rates. Treatments and labs will show improvement once you have transitioned to using a good fistula.
Whether you can 'get by' well enough in Hopes of a transplant? You would be better off listening to your Dr's here. I sure wouldn't want to give you any false Hope. But I can tell you, my labs were O K using my cath, but made NOTICEABLE improvement once my fistula started working.
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Thank you everyone for helping me through this tough time. I just need to work ip the courage to make the appointment
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My husband has had the same fistula for 6 years now. And he's used the buttonhole method to stick the needles in for 6 years. Doesn't look like a snake and doesn't have big bumps. In fact, it hardly has any bumps where they stick the needles in. They are always complimenting him on it.
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In another’s post I mentioned my blood pressure is low and that I must see a cardiologist. I feel fluid on my body but my pressures remain low 60/47 sometimes even lower than that. The minute I agree to a fistula appointment they want me to hold off because of my bp is low now the fistula will not mature and it was just clot. I’m stressful. Today’s treatment I was doing okay for an hour. Then I get dizzy so they stop pulling. I still continued to feel dizzy so they add saline and I felt better but then later on started to feel dizzy. It was a cycle they add saline then I feel dizzy they add saline even though the machine has stopped pulling. Anyone have low pressure
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>Anyone have low pressure
I'm dealing with bouts of low pressure while on home hemo, but not as low as yours (100/50 here). We've had some success with lowering the temperature of the dialysate to 100f, cooling me by removing blankets & covers, not eating within 3 hours before the session, and drinking a few ounces of black coffee just before the session.
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They encouraged me to eat during my treatment but that is doing nothing. They lowered the temp and during treatment I was gonna pass out ( still low pressure) nothing is helping
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Eating drops mine quite a bit.
Mayo Clinic: Caffeine can cause a short, but dramatic increase in your blood pressure, even if you don't have high blood pressure. It's unclear what causes this spike in blood pressure.
https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/expert-answers/blood-pressure/faq-20058543
My spike seems to last for an hour or more.
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As I understand it eating, digestion, diverts blood flow to the intestines, which could be contributing to lowered BP's, circulating blood in the rest of the body.
This can be a tough puzzle to solve. But I have no doubt there IS a solution. It may not be obvious.
Stimulants may have some promise, depending on what may work with your particular system. And that may not be what works so well with others.
Some inhalers for lung problems also contain Adrenalin. You might think about taking a puff on one when your BP drops and see if it makes an improvement.
Then again, you may want to run this idea past one of your Dr's first.
You may not want to risk harming yourself just because of my crazy ideas.
Once upon a time, back in my druggie years, I had a different kind of inhaler. II had a Vick's, tube type nasal thing, took out the sponge and replaced it with amyal Nitrate, the heart stimulant. A hit on that would kick start my heart, hard. I don't know if it is still prescribed. I didn't have a script. I've been 'clean' since Sept 84. Still sorta miss some of those things.
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There are some days I don't eat and its the same story. It was so low they said maybe I should start eating something. I had an ekg done lets say 4 years back and they said there was decreased funtion of my heart but like by 3 percent. I was on pd that time. Im very stressed out
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I did not eat this treatment and my blood pressure remained low in the 60s.
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I did not eat this treatment and my blood pressure remained low in the 60s.
I am confused. What number stayed in the 60's? Blood pressure has TWO numbers. Which number are you talking about?
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I did not eat this treatment and my blood pressure remained low in the 60s.
I am confused. What number stayed in the 60's? Blood pressure has TWO numbers. Which number are you talking about?
Systolic pressures usually 60/40
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"Systolic" is 60 "diastolic" in this case is the bottom number (40)