Intro - Lilmisjune

[lilmisjune]

Hello everyone,

My name is June and I am 30 years old. I was diagnosed with Lupus at the age of 16. My Lupus was controlled and stable from 16 to 20. I think when I turned 21 and decided to move away from home, the high level of stress I endured during that time caused my Lupus to flare. The flare caused my kidneys to fail. I started my first dialysis treatment in 2007. My kidney functions recovered after about 6 months of dialysis. Everything was fine for about a year before it failed again. This time, the doctor said it will not recover and I will need a transplant. I've been on dialysis since, it's been about 3 years now.

I started out with a catheter on my chest. Used that for about a year. Then it was a fistula on my right arm. That was good for about 2 years. I recently started to use a graf on my left arm.

The fistula on my right arm became enlarged over time and turned into these big bumps on my arm that looks really bad. Has anyone experienced the same thing? I am going in this Wednesday to ligate the fistula. Doctor said that would stop the pumping and flattening out the bumps over time. Is that true?

The reason I am joining this site is to get support from others in the same situation as me. I would also like to read about other's experience through this tough process.

Thank you for reading. - lilmisjune.

[chook]

G'day June.  to IHD.
I have used my fistula for just 8 weeks. It is on my upper right arm, from the inside of my elbow almost to my arm pit and about a half inch wide 'snake' with turns and bumps. It is ugly and draws a few looks but I figure it is my backstop in case my tx fails so at the moment I'm happy to keep it.
I did have a smaller one on my lower arm that didn't work and it was closed off. It was nowhere near as large as my present one, but apart from a little scar, there is no mark to show where it was. I think it reduced a couple of days post surgery. Good luck.

[Sue]

Hi June

[Frances42]

  Hi June,
I know the fistula's are pretty ugly, my husbands is on his left arm above the elbow on the inside of his arm. He's had it repaired 3 times already... But look dear 3/4 length tee tops can hide it.
Regards,
Frances

[smcd23]

Hi June, welcome!

My husband had a fistula that worked for about a year. It also has those bumps you speak of. His fistula has clotted off, and is no longer usable but the skin is still bruised looking and he still has those bumps. He just wears longer T-shirts. He had 2 failed fistulas before that, and those don't have the same appearance. They never worked, so I wonder if that is why.

He is also young like you, he is 28 now (I am 30). He's been on dialysis since 5/09. He has had 2 failed transplants due to rejection. Hang in there, it could always be worse, or at leas that is what I tell him...

[bennyswife]

  to IHD.  Wonderful site, wonderful people and wonderful, helpful information for you.  Glad you found us.

[Speedy1wrc]

Welcome!

The bumps are pseudo aneurisms. They grow with usage of the fistula. How much they grow depends on a number of factors, the flow, the depth, and cannulation techniques.Your own makeup plays a large part too.

My fistula is 8 years old and is working pretty darn well. I was a little concerned Monday having some pain in the arream but had it checked on Wednesday and all is good. Mine wasn't used for around six years after my first transplant. Luckily it still worked when I started again last March. It enlarged some in center with a flow of 400ml/min. Now I've gone to Home Hemo and at a flow of 500ml/min it's getting huge. It's growing longer too snaking up my forearm. My arterial is maybe 1 1/2"Lx1"Wx3/4"H give or take.

It's nasty looking but no one seems to give it a second look. In all the years I have had it only once I was asked about it. It was a friends son and I just told him I was bitten by a snake. it was the first thing that came to my mind. He got a real puzzeld look on his face, but it seemed to satisfy his curiosity.

Good luck and welcome again!

[chetan4065]

Hi June,

I had my fistula done when i was 15 yrs old...it looked reaally bad and when you touched it you could feel that buzzing sound. I used to hide the bumps by wearing a wrist band over it(my fistula was near my left wrist)..I had my tx in 1992 but i still had the fistula till 2003. then i got it litigated and now my wrist looks just fine with no bumps but just a scar.....I think i will have to have my fistula again as i am losing my transplanted kidney. Just the thought of having that bump on my hand petrifies me.

[CebuShan]

     June! My Mom's name is June!
My fistula looks something like a snake or earthworm under the skin of my upper right arm. I don't try to hide it at all. I wear tank tops during the summer and I like to swim. I figure if someone doesn't like it, don't look! It is my lifeline and I am glad to have it. I asked my husband if he thought it was ugly. He said no, it was just part of me.
I hope mine lasts a good long time (at least until I get a new kidney!) because I self cannulate & I am left handed. I don't know what I would do if they had to move it to my left arm!

[RichardMEL]

OK I am thinking there is some confusion here regarding the "bumps"

All fistulas (that I have seen, incuding my own anyway) have the small "bump" where the artery and vein is joined, and that is where the "thrill" (buzz) is. That's how you know the darn thing is still going because that thrill is the passing of the blood through (I had to tell someone I wasn't the energizer bunny once. ).

I believe the much LARGER bumps that some people have (I have 'em) are, as posted above, aneurysms caused by all the needling (buttonhole tenique is one way to avoid these forming apparently, but it was not brought into my unit till it was too late for me).

mine are pretty darn big (one case, like the nose, where a male does not wanted size to be pointed out  ) but I really could care less about it. I don't hide it on hot days and if people want to stare and decide I'm a drug user or something then let them - that's their problem. One time I did have a guy, who I ironically think was involved in the drug trade himself, think they were boils and kept away from me thinking i was somehow infectious... that worked just fine for me as he was a slimy character hitting on a friend of mine in the hospital at the time-but I digress).

I am not sure if ligation(?) would remove those. I once asked and the docs here seemed to say no but they do make comment every so often about "fixing" my fistula - by tying it off or something - I keep getting different reasons for it. The most recent was something along the lines of having it going causes stress on the cardio vascular system or somesuch. It kind of makes sense, but they haven't pushed it. While my wonderful transplant is nearing 2 and a half years in, I feel if my fistula is still thrilling girls around th world (bad joke) then why not leave it be unless it is a serious risk to my system - sadly who knows I could need it again anytime - hopefully not but you never know. I'd rather not destroy it while it's going. It may fail of its own accord (it's nearly 8 years old) as many apparently do post-tx and well that's one thing, but as they say "if it ain't btoke, don't fix it!"

Anyway June, welcome to IHD!!!

RichardMEL, Moderator

[Speedy1wrc]

Yes, I have 3 "bumps". One is the area of the anastomosis and  is indicated by the "thrill". The other two are the pseudo aneurisms. They are formed when the vessel is stretched from usage. How much they balloon is dependent on needle techniques and physiology, also just by being used.

Mine grew during my first go round of dialysis back in 2005. After my transplant they got a bit smaller, but were always there. The Dr's always said it would eventually quit working, but here it is 2013 and it's working perfectly.

I started back on dialysis in March of 2012 and they started to grow again. I then transitioned to Home Hemo and they took off like crazy even with the buttonholes. My blood flow rate was increased from 400-450ml/min in center to 500ml/min at home and that was the primary reason for the growth. I have buttonholes but thave had no effect seemingly on them. Having buttonholes will not necessarily mean you won't get them.

Some people have deep fistula's that are barely noticeable and others like mine are very prnounced. It just depends.

[RichardMEL]

I do agree that it's all about the tenique used that influences the forming of these things and I am sure that there are some cases of using buttonholes would still lead to the bumpy outcome, but in general I believe if done right from the start (and I mean done right in both senses of the phrase) that it would limit them forming. You and I alas had ours get going before that it seems.

btw I'm sorry to hear you're back on D so soon

[lmunchkin]

Welcome to IHD.  My husband has a fistula in his right arm (wrist to elbow).  It is thick and a strong rope!  Sure makes sticking him easie peese!
Sounds like you have had your share of problems, but you are among those who know!

Again welcome & God Bless,
lmunchkin

[Speedy1wrc]

Thanks Richard.

I can guarantee I am more upset about being on D than you can imagine. I had the misfortune of having some bad Dr's. It was easily avoidable.

And as everyone finds out, the more you learn the scarier it gets knowing how badly you were taken care of. The trouble is you are always one step behind it seems.