Mixed feelings and my fistula

[monrein]

So, this afternoon my upper arm fistula that has been buzzing and thrilling and working like a charm since the day it was created, started itching in one spot and then aching a little and now I think it's deciding that it's done.  It's acting very strangely and looking different and not being itself.  I remember the day my first one stopped, about a week after my first transplant.  I was driving to work and noticed that it had stopped.  I initially panicked and pulled off the road and felt sad in a way because it had served me so well for 5 years and I thought of it as my backup.  That transplant lasted 23 years.

This one was only used for 10 months but has been powerfully thrilling along for over two and a half years now.  I know that they often do clot off and I was expecting it to happen sooner but I'm surprised at my mixed feelings about losing it.  I know every bit of it so intimately, where it bends and where it widens, where it dips and where it narrows and I love it in a way. It would be nice to lose the bulge of it but I've always found the thrill weirdly reassuring  and I very affectionately still think of it as my lifeline.  It will also mean that my left arm is used up for fistulas and .....anyhow, that's what's going on here and I've been toying with it and chatting to it for several hours now.  Funny how the body just refuses to stay the same...for everyone.  I might have a drink to celebrate it's contribution to my successful time on D and to bid it goodbye.

I'll let you all know if it changes it's mind by tomorrow.

[okarol]

It is odd, when they stop working, and you've got a transplant. I can understand the lifeline part, I often worry that Jenna would need an emergency chest cath if her transplant goes south in a hurry. Having a fistula is like having Plan B. Sorry about your loss monrein.

[MooseMom]

We'll drink a toast to your fistula in Las Vegas; we'll give it a proper send-off.

[willowtreewren]

Goodness, Monrein. I do so understand!

Even though Carl is doing fabulously well with his transplant, I still enjoy the "thrill" of his fistula. They told him that they would do nothing to save it, if it should die, but I would be so saddened for that to happen. He still protects it. And I hope he never ever has to use it again, but....

Like you said, it IS a lifeline.

I hope yours gets back to buzzing, but if not, give it a fond farewell.

Aleta

[Riki]

My first fistula was removed a year after my first transplant. It was never used, as I was on PD and it was put in just in case it was ever needed.  It never was.  I think the doctors decided that, since I was still a teenager and it was in my wrist, that it would be safer to remove it, in case it got whacked with something and broke.  It was a little weird for me to put my hand on it the first time and not feel it buzz.  I frequently put my hand on the new one, just to feel it.  It's like there's a little bee in there, buzzing around. *G*

[Sluff]

I can totally understand your mixed emotions. Those fistula's are earned as well. Hope you will never need it. Hope you feel better about it in time.

[sullidog]

Here's my feelings, and maybe I'm crazy, but I feel that if a patient wants to keep their fistula running even if their transplant is working well then the patient should have that right just so if something does happen they are ready.
1. They wouldn't have to have a catheter,
and 2. if they should happen to go on dialysis again keeping the fistula running would save access sites in case most of them are already used up.
A patient should not be told we won't save the fistula if they want to keep it going. If it were to clot then even with a transplant I think the surgeon should try to save it.
Just my oppinion and maybe there's a reason they won't, I don't know just stating thoughts.

[cariad]

Any news about the fistula, monrein?

Sorry that it seems to be ready to give up the ghost. I suppose I am lucky in that I cannot remember how or when the bruit stopped, whether it was right after transplant or quite a bit later. I would have had no idea what it meant to lose a fistula at any rate. I do clearly remember my parents yelling at a doctor over it, and since they never never never cross doctors, I knew enough to surmise that this was worth flying into a rage over. My records indicate that they tried to use it but couldn't, which bizarrely I do not remember. It was only at my vein mapping that I learnt the full extent of the issue, that those access sites are a one-time offer. I have high hopes that you'll never need a fistula again, but I can understand the feeling of suddenly working without a net. 

[monrein]

Yep, it is thrombosing (is that a word???) itself, clotting off, and is a bit uncomfortable but apparently everything is within the norm.  Sore, vein getting harder all the way up from the inner elbow and slightly red and warm to the touch.  No fever whatsoever and the redness is localized to the vein area.  I spoke with the lovely nurse of my vascular surgeon and she reassured me about it all.  I remember my first one got all hard inside but then slowly everything was reabsorbed by the body and now it's just a flat scar that feels almost hollow inside the vein.

Tomorrow, I'm planting a nice, new, dwarf japanese maple I bought today to mark the occasion.  Acer Palmatum "Kamagata".  I don't do tattoos but I do plantings to commemorate things.  I also had a heart to heart this morning with Kake (my transplant...Kathy's Amazing Kidney Extraordinaire)  about how I am really counting on her not to mess up, about how I'd do my part etc but we're walking the tightrope without the safety net now.

There are of course some medical advantages, particularly cardiovascular ones, to not having the fistula buzzing away so I will embrace those and be ready to deal with whatever, whenever in the future but I really do just expect the best.   

[MooseMom]

What a lovely way to commemorate an occasion...planting a Japanese maple.

[willowtreewren]

 

Whenever I look at my Japanese maples I will think of you!

Aleta

[jbeany]

Yup, keeping that heart going the right way takes priority!   

[AguynamedKim]

This is one of the coolest threads ever.  Thank you for sharing this, Monrein.  I look forward to toasting to its honorable service in Vegas.

[sullidog]

My failed graft feels like a hoze that had been flattened, also has lumps in it too.

[monrein]

Update....hurting quite a bit more, harder and redder right at the bend of the elbow....annoying, annoying, annoying!  The lovely Cyndi (vascular surgeon's nurse) has told me she'll have a look at it if I want to come in today, before the long weekend,  but since there's no fever and since she's basically described my own arm to me I don't want to waste her time.  She suggested tylenol and a hot compress but felt that amputation (my suggestion) was a tad extreme.  It's really a huge stress relief to be able to pick up the phone and talk to her immediately about any concerns.  This vascular surgeon and her are an amazing team and I feel lucky to have them...well as lucky as one can feel with the necessity of having one's arm and veins sliced up.

More fun...my donor/sister-in-law comes to town for a week starting today and we have stuff planned...my goal is to distract myself from my left arm.   

[tyefly]

Monrein      I love your idea on planting.....Acer Palmatum "Kamagata    very nice and dwarf....  send us pictures in the spring....

I was worried about my fistula...after transplant too....my thrill  has been reduced by about 50 % but still there.... I feel like you...It would be sad to loose the life line.... I only have had mine for two years but it means alot....I took very good care in cannulating it and used the same two buttonholes the whole time....

I hope that mine does not.... so now I am wondering what I can do to keep it going.....exercise....??  I worry about blood flow to the rest of my arm.....

Transplant is wonderfull but it has a new set of worries..... and also a new set of benefits......

[monrein]

Tyefly, it's so great to "talk" with the newly transplanted you.!!!  The fistula thing is a mixed bag really because there are cardiac benefits to not having it as Anna (Meinuk) has researched and reported on.  http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/your-fistula-after-transplant-to-keep-or-not-to-keep.html

I don't think there's much to be done in the way of getting it to keep working ....I mean I definitely wouldn't go in to have mine unblocked when it started clotting off two weeks ago.  Now, it's very hard but doesn't really hurt anymore.  My vascular surgeon assured me that it is perfectly within the norm.  Most of them clot off and no worries...except of course te lifeline back up bit.

All in all, protecting the heart and lessening the risk of Left Ventricular Hypertrophy is the greater benefit so that's my silver lining.  Plus of course if it flattens like my first one did that will be a bonus too.

You'll soon get used to the transplant thing and I'm pushing for it to last forever!!   

[tyefly]

Thx Monrein.....  I was starting to do that research ....  great information.... I know they mentioned a little about tying off  not alot..... I do not have a large fistula.... and for the most part since I was doing nocturnal with BS of 270 to 300 it remain small....  in fact they couldnt believe I even had on except for my two buttonholes....   maybe the fat in my upper arm helps..... LOL

  again  thx for the kind comments  and  information...   You guys are great here On IHD..... 

[MooseMom]

Why exactly does transplantation cause a fistula to stop working?  It can't be just because it is no longer being used because I've had my fistula since April of last year; I haven't used it, and it's still buzzing like crazy. 

[tyefly]

Good question.... I know that I have lost about 50 % of my thrill after surgery.... My arm around my fistula hurt really bad when I woke up from surgery.....  I thought they broke my arm.... the thrill was so faint....but my blood pressure was pretty low.... it has a better thrill now.... 

I am starting the research....  if anyone else has more info      chime it in.....

[MooseMom]

Well, I read posts from so many transplant patients who say they naturally lose their fistulas.  I know that doesn't happen to everyone, but it seems to be the most common outcome, and I've always been curious to know why.  And what keeps a year-old, unused fistula going?

[okarol]

I am just guessing, but using it can cause scarring and narrowing, so clotting or blockage happens. So unused it may just keep going for a long time.

[sullidog]

This is just a guess but because they aren't on dialysis, they don't get heprin anymore? As for clotting off during surgery maybe it's do to the blood pressure and stuff? Not sure just throwing some guesses out there.