freaking out...

[raidym]

They've told me at my clinic there going to start using my fistula. I've no idea why but it scares the life of me. My family are very supportive and keep telling I'll be fine and with everything I've been through in the past few months this will be nothing but it doesn't seem to calm me down. Since I got the fistula it's been this blind panic at the thought of them using it I think it really brings it home I'm on dialysis and have chronic kidney failure when I start using it. I'm a woman in my thirties and don't want to cry like a child when they do use it but probably will. I'm trying to keep myself as calm as I can but am failing big time and wondering why it's freaking me out so much... ?

[Desert Dancer]

Hi, Raidy -

Is it the thought of the needles that scares you? Do you think using the fistula will be painful? Or is it just a more general fear/sinking in of reality?

Do you have the option of cannulating yourself? That would put you in control, and many people find it is FAR less painful to do it themselves (I'm one of them). Are they going to create buttonholes in your fistula? If they do that, the needles used are blunts and it's more of an insertion than a stick. You actually have a few options to make it a bit easier to deal with your fistula.

Just think, too: you are at far less risk of infection with a fistula than with a catheter. I couldn't WAIT to get my catheter out, it really freaked me out having that thing leading directly to my heart.

In any case, I'll be sending you lots of positive thoughts from this side of the pond. Your family is right - you WILL be okay, you CAN get through this. Make sure you vent here whenever you need to. 

[MooseMom]

I'm just guessing, but I suspect that it freaks you out because you have become used to one type of access and now have to endure a change; kind of "better the devil you know than the devil you don't know."

Using your fistula will be better for you in the long run, but no type of access is entirely trouble free, so it is possible you'll have a problem or two with, say, infiltrations before your fistula is good and strong.  But then again, you may have no problems at all; a lot depends upon the skill of whoever is cannulating you.

If you think you will probably cry when they first use it, then yes, you're probably right...you probably will cry.  I know I will.  I doubt that anyone who has ever worked in a dialysis clinic has never seen a patient cry.  If you cry, well, so what?  Everything about dialysis is traumatic in my world.  Just thinking about it makes me dizzy.

Yes, I do think there is something to your theory that using your fistula really brings it all home.  I'll tell you, I sobbed and sobbed at the hospital the morning my fistula was created because despite knowing for years that I would end up on dialysis, getting that fistula was my personal Rubicon.  Yep, I cried like a child, and I'm glad I did because I wanted everyone to know that this was a traumatic thing for me; I KNOW I'm not the only person to have ever felt this trauma, and I'm always looking for ways to make the medical people really understand how patients feel.  So I cried and was not embarrassed by it.

I'm not on D yet, but I know that on that first day of D, whenever it comes, there will be tears from me.  But the fact that I did not let my fear paralyze me will let everyone know that I don't lack courage, and neither do you.  You will go and you will use your fistula, and you will show courage just by being there.

[raidym]

Hey Desert Dancer
It's not the needles that scare me and not the pain so much (hopefully it won't be too painful). It's definately that sinking fear of reality and a real fear of crying I like to think I'm a bit of a though nut but in reality I'm not I must look in to my options but  I definatley couldn't do it myself they gave me the option of doing my own iron but I couldn't do it. And I was like you at first about the line I was terrified of infection but as MooseMom posted it's better the devil you know.. And yes Moosemom your right I really don't like change... thank you for your kind thoughts. xxx

[Annig83]

I can't sympathize with you being on hemo, because I'm on PD, but if it helps any, when I first had my catheter placed I was nauseated at the thought of it just being there.  I had to have my bf change my bandages, and when the nurse would change it at the center I would cringe and start crying.  She would ask "oh my are you okay?  Did I hurt you?"  Through my tears I would say "NO, I just hate looking at it, it grosses me out!" Plus, I had just given birth to a preemie who was 3 months early and in the NICU...needless to say my body was in no way functioning at 100%.

I felt the same way in that it finally set in that; I am in kidney failure, they're not coming back, I have to be on dialysis, I have to take care of a newborn, and be so many things when my body is saying...uh no!!! Just the thought of having a foreign body sticking out of me and a long tube was just disgusting to me and I felt sick everytime I needed to use it, until I started feeling better.  The dialysis made me feel physically and emotionally better.  With not getting all those toxins out I noticed I was more depressed, irritable and anxious. 

It gets better I promise.  Like I said I don't know how it would be for using a fistula, but we've both had surgery to have it put in, and if you have any questions or concerns before they start using it, it's your right to ask.  There's no stupid questions when it comes to your health/body.   

Good Luck!

[Ang]

failing big time and wondering why it's freaking me out so much... ?

its called fear and anticipation

[Riki]

Don't fear crying.  I think they would understand if you did cry, and I think others would think something was wrong if you didn't.  I've been using my fistula since about March of last year, so, not quite a year and a half. I still cry sometimes.  I'm a cryer anyway.  I cry with just about every emotion. *L*

When I fiirst got sick as a child, I didn't cry.  I was 12, and I'd spent most of my life being told that only babies cried.  I was going through all the emotions that you go through when your kidneys fail and start dialysis, only with the comprehension of a child.  It took a bit of prodding from the nurses to talk about what I was feeling, and to actually get me to cry.  It wasn't until a year and a half later, when I got my first kidney, that one of the nurses told me that they had been worried about me in the beginning, because I showed no emotion at all.

So, they expect to see it, because you're going through a lot of crap, and it's overwhelming, and they do worry about your mental state if they don't see it

[RichardMEL]

oh heaven's don't worry about it. It's a normal reaction. Getting fstulas, getting needled... they are traumatic events. My nurses liked to joke that I cried when I was first needled. I like  to think of it more as nearly fainting when I made the mistake of looking down and seeting blood pouring out of my fistula(because there was a slight.. umm... slipup with the needle... ).

You don't have to be brave if you don't want to. The staff will understand, and in the end it doesn't really matter what anyone else thinks...

They've seen it all. In our unit for example we used to have this guy who cried every single time for over a year. He was a BIG guy - like as big as a sumo wrestler and sometimes he'd actually kick at the staff and REALLY act the baby (it's a wonder he even showed up to D on a regular basis)... then at the other end we had this young girl(around 21) come in and announce "big needles. cool!! bring it on!" and she watched every bit and loved it (while her sister's bf disappeared to throw up in a bathroom  )

It takes all sorts and you're quite normal if you freak out... but by the same token you WILL get used to it, and as your fistula matures and you do get used to it it totally won't be a big deal - just the normal routine - then youll be able to look at all those pathetic people complaining when they have to get a flu shot or something and think "That's not a bloody needle!!" Paul Hogan style!

[raidym]

Thanks everyone for the replies I didn't think I get any it being my first post. I'm actually feeling a bit calmer since I posted because if anyone understands it's the IHD crowd still afraid but slightly calmer. I'll let you all know how I get on. xxx

[billybags]

First of all    I think it is understandable for you to stress out about this, but you will be fine.

[raidym]

Well well well it took a while but they eventually used my fistula and only on tuesday. So I was very well prepared and felt ready. There was no tears or tantrums and I'm very proud of myself for that It didn't actually work they said it clotted but they said they'll try again soon... My nephrologist told me yesterday that its a good fistula and should have worked the first time and not to let just anyone needle me incase they ruin it. So how do I know whose best at it?  Do I just ask nurses who best. Would patients mind me asking or is it rude?

[Riki]

Yeah, ask the nurses.  They do know which of them is better at getting the needles in.  There's one at my unit that I call the Fistula Whisperer.  She uses Therapeutic Touch on new, tricky, or infiltrated fistulas that have healed enough to be used again.  It's supposed to help the blood flow and relax the patient.  I never really believed in it before she used it on me after my fistula had been infiltrated.  It calmed me enough that she was able to get the needles in without any problems.

After a while, you'll know who the better stickers are for you, since one who is great with you might not be so good with someone else.

As for the fistula clotting, my fistula will be 2 years old in November.  It still clots the needle from time to time.  With me, they just go in again, but since your fistula is still new, they'll probably give it a rest and try again next time.

[CebuShan]

I cried like crazy the first (& second, etc.) time I got stuck. I still can't look while they are sticking me. I had all kinds of problems with being stuck because most of the techs couldn't do it. There was 1 who got it the first time every time. I started asking her how she did it. then I was able to teach the others how to stick me. Don't be afraid to ask questions. Maybe you could learn to self cannulate. I never thought I would ever think about doing that but all the great people I have met on IHD have helped give me the courage to mention it this morning. The nurse was very encouraging. You will be fine. You can do this!   

[Riki]

I don't look either. I also make little fists with my toes, but the nurses can't see that through my slippers.. *L*

The nurses generally ask me where to go with the needles.  I can tell them the direction, how deep, and can usually tell them when they're in.  The nurses in my unit encouraged me to know these things, and it's been a great help, because now when I travel, I can tell whoever is needling me the correct spot to go.  I've never had issues while traveling because of this.

[MooseMom]

I've been told by my clinic that they have "master cannulators" who specialize in cannulating new fistulae.  Like others have said, some have the knack and some do not.  When I go and have my monthly Gift of Hope draw, I try to go in the morning because their best phlebotomist works in the mornings.

I think you should learn all you can about your fistula and not expect the techs to know just where to stick you.  They see so many patients and can't possibly memorize everyone's fistula!  So, if you can help them out in this regard, I'm sure they'd appreciate it and you'd probably get better results.  Learning to self-cannulate if at all possible is the ideal because you know your fistula best.

[raidym]

Yes I definately will try to get to know my fistula better  Maybe one day even love it (I doubt it). But seriously nobody can know your body better then yourself. Theres no way on this earth that I could Jab myself the thought makes me queasy . I don't think they'd allow it and nobody does themselves at my clinic anyway.

[CebuShan]

Yes I definately will try to get to know my fistula better  Maybe one day even love it (I doubt it). But seriously nobody can know your body better then yourself. Theres no way on this earth that I could Jab myself the thought makes me queasy . I don't think they'd allow it and nobody does themselves at my clinic anyway.

I felt the same way. (no, I don't love my fistula, I think it is UGLY!) but the way it was described to me was that once my buttonholes are established it will be like putting in earrings. I figure I have pierced ears & I have no trouble putting in earrings so why not try it? Mind you I didn't decide this at the beginning, so don't rush it. If and when you are ready, worry about whether or not your clinic allows it then. In the meantime, just take it day by day.

[Iwannabean]

My clinic does not use buttonholes (I still cant get a straight answer as to why ).  That is one of the reasons I am thinking of switching to home dialysis.  I do love my fistula, I take good care of it, constantly clean it and I am glad that its there.  When you have a fistula you can swim and that is important to me.  The fistula is my link with life, although it makes me look like a junkie with track marks. The fear of the Unknown - I had my fistula before I went on D so it had matured enough for me to use it.  At first they infiltrated me, and the nurse told me that I would get used to it.  That was a lie, you dont get used to it, you just learn to tolerate it.  I tried the numbing cream and I tried the numbing spray, I like the spray better, they let me spray myself and I knew exactly how much to use.  After awhile I stopped using the spray and just got stuck.  I only use the spray now when my access is sore, again, not getting used to it but "tolerating" it.  Sticks hurt, but its something you learn to "tolerate".  I have seen grown men cry when getting stuck, so dont let that bother you.  They usually start you off with smaller needles, then gradually get to the bigger ones.  This is my 2 cents  but I believe in telling it the way it is.  I hope your process on using your fistula goes well.  I hate dialysis also, but love to be around for my family.

Iwannabean   

[raidym]

It's a pity all your comments don't have a like buttton cause I love them all and thaks for taking time to reply