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TransplantBuddies.org Forums » Kidney - Pancreas Transplant » Archive through September 05, 2010 » Popular Topics in our Kidney & Pancreas Forum » AV FISTULA REMOVAL AFTER TRANSPLANT? « Previous Next »


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kristin
Member
Username: Kristinkay0309

Post Number: 56
Registered: 02-2008
Posted on Saturday, April 10, 2010 - 11:03 am:   Edit Post Delete Post Print Post

This may 24th i will have had my kid/pan organs for three years. I'm 27years old. Everything has been going pretty smoothly for me i am very blessed cre is 1.0 hemoglobin a1c is 5. I get the prograf shakes and have developed very bad anxiety docs have put me on xanax to calm me down a bit, i do not take it every day only as needed. My question is has any one had their fistula removed after transplant? I had one put in when i was 24 left arm by elbow and i never even used it for dialysis bcuz i recieved my organs so quickly. But it has grown huge and its growing up my arm and almost to my arm pit now. I wake up every morning and my whole entire arm is asleep. It cause me random pain through out the day and is causing me to worry bout my arm all the time. I have told my kidney doc about my symptoms but he says to leave it in. I have heard of a couple ppl having them removed or at least made smaller. Jus curious what others have done or how to maybe make my arm feel better? I am scared that this vein is never going to stop growing and my pains and symptoms are going to get worse. Any advice?
skp 5-24-07,chicago 25 yofemale
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 3390
Registered: 03-2008
Posted on Saturday, April 10, 2010 - 04:02 pm:   Edit Post Delete Post Print Post

I don't think they normally recommend it, but I am sure that there are times.....
There are not too many things in life worth working my butt off for, but my health is one of them
Brenda
Member
Username: Breelee

Post Number: 22
Registered: 03-2010
Posted on Saturday, April 10, 2010 - 04:20 pm:   Edit Post Delete Post Print Post

I am suprised that it has grown so big without exercise. do you do alot of exercise with thatarm or heavy lifting? Afte my transplant my fistula went down on its own and now I barely have a bump. You may try to sleep on the oppisite site or elevate it on a pillow when you sleep. Otherwise you could see a vascular surgeon to reverse it. I hope you find the solution that you are looking for.

Brenda
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 3392
Registered: 03-2008
Posted on Saturday, April 10, 2010 - 04:54 pm:   Edit Post Delete Post Print Post

I exercise a lot and mine is not really big.
There are not too many things in life worth working my butt off for, but my health is one of them
dennis
Member
Username: Dennis

Post Number: 207
Registered: 02-2009
Posted on Saturday, April 10, 2010 - 08:27 pm:   Edit Post Delete Post Print Post

About 90% of good doctors will tell you not to have your fistula removed because it is your insurance in case something happens.

I had my fistula removed but looking back I shouldn't have listened to my old doc and my parents for pressured me to do so.

The thing with the fistula is it will keep growing over time.

There are reasons however for removing it. I have a few questions for you.

How big is yours. Is it a big lump? Something like a small ball (maybe pingpong ball) protruding out?

Also, when you say pain does it hurt when you touch it or is the pain from within? Is there any redness or is the skin color normal?

Is the pulse still there? The shwinging sound or feeling?

When I went to the vascular surgeon who took out my fistula he showed me a number of pictures on his cellphone (which he uses for informational purposes and case studies) and I can tell you there are a lot of different things that can happen.

The main issue I would have would be the size (if it is really big) because it can get hit and trauma could cause problems because it is a big vein. And the pain, never a good thing.

You may want to ask your doc to refer you to a vascular surgeon who handles fistula for a number of things. The vascular surgeon can often tell you by looking and touching it if it is ok or not.

The consult may be helpful for:

1. he will tell you if it is still functional or not. I learned that even if it still pulses it may not really work properly anymore.

2. he may tell you to do some mapping to tell if the flow is good or not

3. if it is really big, there may be an aneurysm or pseudo aneurysm, he then may suggest to remove it.

4. he may tell you to resection it (make it smaller) to ease the problem and probably will take the pain away also.

The vascular surgeon will be the best person to know what to do but make sure to get one who does a lot of fistulas for kidney transplants. Mine did both transplants and fistulas daily so he saw a ton of it and had the cellphone pics to prove it.

If the surgeon decides to resection or remove it don't worry, because it is very fast, mine went about 30 mins. i was in and out in about 2 hours or so, the rest of the time was waiting and paying the bills after.

Recovery also very smooth and no pain whatsoever.

Hope this helps.
http://kidney-beans.blogspot.com/
kristin
Member
Username: Kristinkay0309

Post Number: 57
Registered: 02-2008
Posted on Sunday, April 11, 2010 - 09:45 am:   Edit Post Delete Post Print Post

Thanks guys for the post! I was exercising and running and stuff but no weights and i noticed it getting bigger so i stopped but doc told me to do some form of exercise so ive been doing yoga and i dont knnow if its getting bigger or not anymore. DENNIS- yes it is about the size of a ping pong ball that sticks out in my middle left arm. It still pulses and has the thrill in it. Then i also have a 4inch id say vein developing and is starting to bulge up half way to my arm pit and this part has also developed a thrill in it. When i say pain i mean holding my arm in certain postions it gets real uncomfortable sometimes. Yes i think i should defintely go see a vascular surgeon. I would perfer to leave it in, but like you said maybe they can at least make it alil smaller. Thanks for the advice.
skp 5-24-07,chicago 25 yofemale
Vyckie
Member
Username: Vyckie

Post Number: 1
Registered: 04-2010
Posted on Sunday, April 11, 2010 - 11:26 am:   Edit Post Delete Post Print Post

Hi Kristin

Hi i wanted to comment on ur subject here.. I also was a dialysis patience and had my transplant in feb 09.. I was told to leave mines in also! as time progressed mines kept growin over time too.. But mines was in a form of a snake and just kepted on growning and causing alot of pain so my doctor said lets either shut it down or just tie it off to were the blood could still flow to keep it from causing Steele Syndom in the lower part of the arm(for which i already had once!) I had to have a vascular bypass to get the blood flow going again to lower part of my arm.. All this was before my transplant.. Now that i had the transplant like i said here before! The doctor then sent me up to go have my AV Fistula tied off.. I went as an out patience and he said it would only take maybe 4hrs total and then i could go home..Well as they were getting ready to send me home i had NO antiabotics,No at home instructions and just something for pain that the doctor was suppose to send home with me, So as the Nurses signed me out i went home.. Just after 3hrs at home my arm started to balloon! so my daughter had called the doctor and he told her to take off the bandges and just rewrap that area that it was maybe just wrapped to tight so she did.. My daughter also had asked him about the appointment that the hospital had written on my papers that was like 2days later.. He told her he couldnt see me then cuz he had clinicals and he was in the OR room that day that he would have to see me next week sometime.. So i told my daughter that i would hold out till then.. But i couldnt so we ended up in the ER room 4days later after the first tie off.. When i got in ther the ER Doctor said i wasnt going home cuz there was a bad infection going on ther so i was admitted to the hopsital again for like 3weeks.. When the Nurses came in they said that the doctor was trying to get a OR room so that we could take care of it..Then another 3days had passed due to the Norton & Anthem thing was going on.. So while they were trying to figure out where they were going to do this! i was on some heavy antibotics while we were waiting to get the OR room..Ok now that 7 days of waiting they finaly got my into an OR room to take of it.. When the doctor tied it off the first time he didnt know that i had a pseudo aneurysm had devolped in it and when they had me open the first time a bactiera had gotten into it and its how it all started.. When they did the surgery they had to scrap and cut part of my bicep out of my arm it left an 18 inche lenght by 6 inche wide by 3 inche deep hole in my arm i had to wear a wound vac 24/7 for 6 straight weeks and is was no fun carrying around that machine.. ( it look like someone took a shotgun and just blasted my arm wide open).. I'm not tryin to scare u but its what happened to me.. My Vascular doctor was suppose to be the best vascular surgen ther was here in Louisville is what my kidney doctor said so i trusted him and it why i had this doctor.. My arm is all healed and its fine now, but i have a nasty scar and its the worst one i have after even my transplant and eveything else that i have been thru.. So really make sure ur doctor does everything he needs to before u make that decission on what u want to do with ur AV Fistula make sure he looks for pseudo aneurysm's or any kind of aneurysims in that Av Fistula before he does any kind of tie off or what ever he decides to do with it.. I'm sure u have a great doctor and mines was too! but he just didnt follow thru with really cking before tie'n it off..Sorry its so long, but good luck in which ever u do and may god bless u in continueing ur good health.. I'm not a memeber of this site but i do get emials from this site on stories and disscusin boards.. So if u want to write me my email addy is vprdvtr@yahoo.com.. I hope that it will let u use my email addy to write back if u want to.. Good Luck.......Vyckie
dennis
Member
Username: Dennis

Post Number: 208
Registered: 02-2009
Posted on Sunday, April 11, 2010 - 08:40 pm:   Edit Post Delete Post Print Post

After reading Vyckie's post, I cannot reiterate how important it is to find that good vascular surgeon to do this. My doc made sure she sent me to a good one.

I would think you'll be able to tell if the doc is good during the first consult.

Kristin, from what you described, my guess is that you'd probably have to have it taken out or resectioned. Is the skin on the area thin. I would guess it is because it has to stretch due to the size.

Not to scare you, and you shouldn't be scared, it's not an emergency or anything. You may want to meet with the surgeon a bit sooner than later if the skin is thin, something like within the next 2-3 months, the earlier the better though.

This is some precautionary warning I was told. The doc showed me a pic of fistula with very thin skin and told me that what can happen is that is can tear and then blood will spurt out. And when it does, don't panic. There will be a lot of blood and it will fire out like crazy think something like sitting with your arm on the table and the blood can shoot up all the way to the ceiling. This is because the vein is very big and there is a lot of pressure.

Should this happen. Hopefully it doesn't, don't panic. Just cover it and put pressure on it so it blood isn't able to shoot out, then go to the ER.

Also like Vyckie said, if you do have the operation for the fistula, never leave without the prescription for antibiotics. I was given antibiotics and the option for pain killers if needed. Did go through the antibiotics, but never had to use the pain killers. There was no pain whatsoever.

To give you an idea of the process and experience, I did write it before in this post:

http://www.transplantbuddies.org/cgi/tbx/discus.cgi?pg=prev&topic=7&page=110390

Hope this helps.
http://kidney-beans.blogspot.com/
Joan
Member
Username: Coco1999

Post Number: 43
Registered: 08-2008
Posted on Sunday, April 11, 2010 - 09:47 pm:   Edit Post Delete Post Print Post

I was scheduled a surgery to have my fistula reduction tomorrow. But I called it off because I am not sure the outcome. I will see my surgeon again tomorrow.

I have had my fistula for 9 yrs. I have several big bumps like pin pong ball on my elbow and humerus. I have a normal and health life now. I don't want get any trouble because of this surgery.

I may have a surgery next year but not now. Hopefully I will find a lot of information by then.


Kidney Transplant - 9 yrs.
Vyckie
Member
Username: Vyckie

Post Number: 2
Registered: 04-2010
Posted on Monday, April 12, 2010 - 08:50 am:   Edit Post Delete Post Print Post

Thanxs Dennis U know that none of us that is going thru any of this has not even a clue untill we go thru something like this!! and so we really start to educate ourselves in a quick way so that we ourselves can educate others! ( we are not doctors! ) but we now know enough that we can help others so that they dont go thru what we have.. I really like these site i didnt even know they exsisted.. I'm a member also of Transplantcafe.com, and there is so many people who are well educated on that site to that i've even learned more about everything i have gone thru.. So thanxs again for mentioning me in ur post.. Always Vyckie
Joan
Member
Username: Coco1999

Post Number: 44
Registered: 08-2008
Posted on Monday, April 12, 2010 - 03:29 pm:   Edit Post Delete Post Print Post

Hi, Dennis:

Thank you very much for the information. I talked to my vascular surgeon today. He also talked to my kidney doctor. He is going take the fistula out. He will tie the one end of the fistula and make several cuts on the big bumps. So, I don't have to worry anymore.

If he is going make the fistula smaller, I will need another procedure down the road. So, I rather make the one-time procedure.

I am glad that I did some of the research before the surgery.
Ricky
Member
Username: Dartainian

Post Number: 2
Registered: 12-2010
Posted on Wednesday, December 29, 2010 - 12:58 pm:   Edit Post Delete Post Print Post

Hello Everyone, I have read all these posts and I have one more question that I did not see posted. My fistula was put in my right arm when I was 17 years old in preparation of my going on dialysis. I have been lucky enough to not have had any problems with it. I was told to take a tennis ball and squeeze that to help build up the fistula. Over time and needle sticks my fistula has done like many others and has gotten huge. I would say there are parts of it that are bigger around that a quarter and it is the length of my upper arm from the armpit to the bend at the elbow. Every time I see a new doctor and they do an initial physical they all ask if I have a heart murmur because they can hear the blood flow all the way on the other side of my heart. My question is, for those who have had a fistula removal or reduction, do you regain any stamina after the surgery? I seem to had lost a lot of stamina over the years and I suspect my fistula may be making my heart work so hard that it may be causing me these other issues I am noticing. I have been thinking about having it removed and I do plan on talking to my kidney doc at my next appointment but I am hoping to have more information before then.
Richard Powell, kidney 1986 - 1987, kidney 1994 to present.


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