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Author Topic: Fistula Removal & History of a Fistula (with pictures)  (Read 11528 times)
Meinuk
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« on: April 29, 2010, 05:46:41 PM »

NOTE:  This is NOT a typical tie off of a fistula. My fistula had to be totally removed.  In most cases, the fistula can be easily tied off (ligated) and it is not as involved a process as this.

18 months after my transplant and it is official, there is no way my fistula will outlive my graft - I'll be lucky if my fistula lasts until my surgery date.  The aneurysm is huge and I am now having pain and there is a pesudo subclavian stenosis.  Fun huh?  Not only will my fistula be gone, my surgeon can't just ligate it (tie it off) he has to open my upper arm and remove the whole vein. I am trading a huge lumpy twisty garden hose under my arm for a couple of long thin scars.

My mission now is to find who is studying buttonholes, and then I can donate the fistula to a study. When I was in center, they did a lot of damage to it.  9 months later when I learned how to cannulate myself, well, the damage stopped, but what are you gonna do? [I didn't find anyone, but we got a video of the aneurysm once the arm was opened]

Even though I am transplanted, I am not happy about losing my access. But, it is better than the alternative possibility of a burst aneurysm.

The joke is, getting the fistula was easy.  I had the surgery, talked the intern into Dermatology during the procedure, had a friend meet me after I was done, went to get a burger at my favorite burger joint in NYC, bumped into Jerry Sienfeld on the way to the train home, and the healed.  It was EASY.

The removal will be surgery and a large wound, resulting in no access for dialysis should my transplant fail.  Getting a burger was much easier.

Here are some pictures that I call "History of a Fistula" From a week after my initial surgery [June 2005] to the removal [June 2010]

Update from post below (Sorry the pics are in both places)

This is the short five year life of my dialysis fistula:

May 2005: Left up arm fistula placed - surgery was GREAT - went for a burger after @ Le Parker Meridian. Please note that it was 18 months between placement and use of my fistula - at no point was it "immature" when I started dialysis.  It was "like a garden hose" a quote from my vascular surgeon.

January 2007: Start in-center dialysis at Davita Life Care in NYC.  >:(  First of seven major infiltrations by staff.  Taken by ambulance to Roosevelt hospital one particularly bad night.

April 2007: pea sized aneurysm appears.

May 2007
: the only tech that can stick me goes on an 8 week vacation to the Philippines. After major sticking problems, nine days without dialysis due to infiltrations, after many fistulagrams and angioplasties (unnecessary) the fistula has been so abused that a perm cath needs to be placed.

I am told that I can train for NxStage ALONE.

August 2007
: Ariel back from vacation, permcath removed, I am about to learn to self cannulate. Button holes established.

October 2007: IHD Vegas!! I am self cannulating, and NO ONE is allowed to touch my arm again EVER.

November 2007: My training nurse thinks I am exaggerating my fistula issues, and she wants to prove that she can stick me. She infiltrates me, and my rule is upheld.

November 2007 - November 2008:  Fistula Perfect - no real issues (other than the growing aneurysm, and need for fistulagrams and angioplasty every three months due to scar tissue)

November `08:  Deceased donor transplant.

January `10: symptoms start in earnest with fistula.  Pain, throbbing in neck, stenosis, aneurysm now size of mandarin orange. 

April `10: Can no longer ignore symptoms.  It is too large to ligate.  Must be excised.  Surgery scheduled. My question:  could this have been avoided if I had been allowed to start directly on NxStage as I had asked?  We'll never know.

June 22 `10
Check in to Roosevelt Hospital @ 9:30, surgery scheduled for 11:30.  I should be going home by 5PM. I'll take pictures as much as I can, and I'll update when it is all over with.

June 23 `10
Well, it is over.  I'm not going to add the pictures until it is healed, because they are pretty graphic, and I want to present the whole picture with a great ending.  So the pics will wait.  Here is how the day went down:

NPO from Monday night.  I was desperate for coffee, but I learned that lesson the hard way when I had my transplant - NPO means NPO.  I got to Roosevelt Hospital on 59th Street at 9am.  Checked in to the 5th floor ambulatory surgery, got my wrist band and waited to be called to pre-op.  By 10am, I was called, I met my primary nurse, was given a very cool disposable gown (more like a tent).  I changed in a private dressing room, put everything (including my phone) in a locker in that room, the nurse wrote my locker number on my wrist band.  Put on my hospital socks with treads, and walked to a screened recovery bed.  There I met with a Surgical Resident who would be scrubbing in on my case.  We talked about my arm, my medical history, went over my consents, and had a laugh.  She then said that she would have held my phone for me, and well, I kicked myself.

My nurse took my vitals and asked me when I last dialyzed.  I said November 1st, 2008. Then she realized I had a working transplant. There had been some confusion. Soon enough, I was walked to another bed and I met with anesthesiology, and we talked meds.  Dr B came and we looked at my arm some more and he decided to go with a nerve block.  WHEW.  I would be awake! (I prefer being awake for my surgeries).  The Surgical resident showed up with a shaver (the kind that gives buzz cuts) and she ran it over my arm (with the tx meds, I have very little body hair, so the shaving was pretty much just going through the motions). 

The anesthesia team came in and did the nerve block right there.  Imagine what the dentist does on a MUCH LARGER SCALE.  I already had an IV in my right hand, so the good drugs were flowing, and on my left, they needled the nerve bundles in my shoulder to deaden my arm and a portion of my shoulder, chest and neck.

The nerve block was disconcerting.  When the hit the nerve (like they are supposed to) there is a sudden electric shock like sensation that convulsed my arm.  (think about like when you scratch a dog at a certain point on their back and they thump their foot and their tongue sticks out - cats too) Well, that was the most unpleasant part of the surgery but it was over quickly and my thumb went numb almost immediately.

Then on to the surgical suite.  I used the F word and I was cautioned about my language.  (I guess I am quite angry about my fistula) Pretty soon, I was heavily drugged, draped, and Dr. B had opened my arm. The aneurysm was quite spectacular.  We actually waited for someone to get a camera.  I still haven't seen the pics or the video, but as soon as I get copies I will post them. Basically, and aneurysm is a thinning of the vein or artery wall that weakens it.  Mine was not only getting larger exponentially, but it was painful, and in the bend of my elbow.  It was very precarious. As Wattle wrote above, a ruptured aneurysm is a dramatic and dangerous thing, and there was no way that mine was going to last longer than my transplant, so it had to come out.  I also had pseudo subclavian stenosis and a thickening of my left ventricle of my heart. It was time.  I am still angry about losing my access.  But that is water under the bridge at this point, so I will let it go.

The surgery was uneventful.  I was in post op a bit longer than usual because my heart rate stayed slow (I was medicated to slow my heart rate for the surgery) and my oxygen saturation was low.  I was familiar with the oxygen issues when I had my transplant, so I told the nurses to lay me flat, because when I sat up in bed, and nodded off, my head occluded my airway and my oxygen sats dropped off - it really was just a positional issue.  Soon enough everyone was happy, all of the monitors were taken off me and I was wheeled to Ambulatory Recovery. 

A lovely nursing assistant brought me a cup of tea and some fig newtons.  I sat up in bed and asked for my bag, the nurse brought me my bag and a sling, she put the sling on for me, and left me alone to make phone calls. I took a pic with my phone, made my calls, got dressed and soon enough my ride arrived.  We happily walked out to the waiting car, and my surgery was officially over.

I wanted to go home, but I realized that my whole left shoulder and arm were dead weight, so I went to home with him instead.  It was a night of sofa, sling, True Blood (I love that show), take out dinner, and the Daily Show (a big deal for me because I don't have cable). By midnight, I could move my hand at the wrist, and by 1am, I could move my arm from the elbow.  When we woke up in the morning, I could move my arm, and there was some bruising and swelling, but it really wasn't a big deal.

I am very lucky, Dr. Benvenisty is the one of the best in NYC for transplant and vascular surgery.  My arm is closed with just two incisions.  A six inch incision to remove the vertical aspect of my fistula (to prevent thrombosis) and a four inch incision to remove the aneurysm and to tie off the artery.  And I was glued shut, no bandages, so I can take showers! (in this NYC summer heat, a blessing).

The bruising is not nearly as bad as I have had in previous in center infiltrations, and I expect that by next week, I will just have two this lines where my fistula used to be.  There is some pain.  I was offered heavy duty meds, but I have a high pain threshold, so I took some Tylenol last night when I realized that the nerve block was wearing off.  So far so good.

About the nerve blocking.  It really deadens the limb.  I now have a clue what stroke victims go through.  It is horrible.  At no point yesterday after the surgery did I have any idea where my left arm was.  I thought it was across my chest, but it was at my side.  That is a very dangerous thing.  I was sent home with a sling for the evening (and a warning NOT to use the sling after sensation comes back).

It is strange to have my left side totally quiet for the first time in five years.  No pulsing or throbbing.  It is scary to have no dialysis access, but I had made the decision a long time ago that this was it for me.  I have a working kidney and I am in life's bonus round. I am planning on jumping off this merry go round when and if my boy kidney stops working.  Losing my access just cemented these thoughts. My friends and family know my wishes, and losing the use of my left arm (even just for a few hours) just solidified them.  I bow to anyone who can recover after a stroke. I couldn't do it.  Losing the use of one of my limbs for just a fraction of a day reminded me just how much quality of life means to me. Art Buchwald is one of my heroes - he faced life and death head on, and he left us with one heck of a legacy - I'll be happy if my legacy is just a small fraction of his.  Just like Epoman, I plan on writing about everything CKD related along the way.

Home Hemo gave me an excellent quality of life while I was waiting for my transplant.  My boy kidney has given me the freedom for long term unfettered travel.  I never miss a moment to recognize just how lucky I am.  This event-less surgery proves it once again.

28 June `10 A week later

Healing has gone smoothly.  The pain was minimal. I took Tylenol twice I think.  I have tried to take it easy on the arm, and well, when I over do it, there is pain so it is a natural reminder to "don't do that".  There is a limit or six photos per post, so I'll figure out how to do a side by side picture when it has finally healed. Until then, here it is so far:

July 12 `10 22 days later

Healed.  Now we are just looking at aesthetics.  All my symptoms are gone.  My left arm is silent.  The worst part of this was when the six year old daughter of one of my friends visited me after the surgery, she looked at my arm and burst into tears "Now you're gonna die" - all of her life, she has been told that "the bump in Anna's arm is there to keep her alive." We were all sad for a moment, and then we started planning her birthday party.  Six year olds are amazing in their ability to adapt. When all the scars have faded, I'll post the final picture.

I have a video of part of the surgery, but I don't feel comfortable posting it, because it is my whole team, and well, It just does not feel right to publish it.  But here is a link to a GRAPHIC screen cap (it is really just a blood colored lump, and some open skin, but you have been warned) of the aneurysm after it has been lifted from the arm, and before it was excised.  It was pretty cool, they could see the blood rushing through the thinness of the aneurysm.  I was mad that I couldn't see, and asked them to go get a camera.  I am so happy they did.  Here is a link to the GRAPHIC pic. http://picasaweb.google.com/lh/photo/98o_TCDwdlTooOVWrPWK68C6GUx6uYDhGzv4GlIRYjg?feat=directlink
« Last Edit: July 22, 2010, 06:51:27 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
paris
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« Reply #1 on: April 29, 2010, 06:07:56 PM »

I just have to say, this is all so you!   I do hate that you are having more surgery.  Do you remember letting Beth feel the "thrill" when we were in Las Vegas?  You taught her a lot in a short time.   I'll be keeping you in my thoughts.  The expression "butterfly" your arm is a little stomach turning!    Take care---sending lots of love   :cuddle;
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Meinuk
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« Reply #2 on: April 29, 2010, 06:16:44 PM »

Paris, I do remember.  I've been thinking about that trip to Vegas a lot lately.  Things changed in my life that weekend, in a good way.

I have to say, in the past five years, I have become quite attached to that lump in my arm.  And it is totally screwing up my summer.  I have to schedule the surgery ASAP, but, I also had to take into consideration my busy schedule (I know, I am a big old baby).  And the recovery time will be over a month with limited use of my left arm.

Tonight I am just having a rant about it.  I'll suck it up and well, you have to do what you have to do.  I just like stomping my feet about it. I can't help buy wonder if I had been able to start dialysis on NxStage and skipped the whole in-center experience, would my fistula not be damaged? I'll never know, but I will always wonder what if....
« Last Edit: April 29, 2010, 06:18:51 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #3 on: April 29, 2010, 06:53:14 PM »

Damnit when you get a transplant you are supposed to be done with dialysis crap!

            :Kit n Stik;
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Meinuk
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« Reply #4 on: April 29, 2010, 07:19:20 PM »

Rerun, don't get me wrong, I a loving every minute that my boy kidney pees for me, but I know that one day he will decide that we just aren't compatible.  I always felt that my fistula was my insurance policy. 

When Dr. B takes it out in June, my boy kidney and I are on our own, and well...  I don't have a very good track record with men....

Sigh.... 
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #5 on: April 29, 2010, 08:03:32 PM »

My graft threw a jealous fit a few days after my transplant, and refused to thrill another minute.  Damn thing.

I know how frustrating it is to still be dealing with surgery and leftover crap once the transplant is in and working.  I'm on severe restrictions in terms of activity and lifting for at least 3 more weeks with the skin graft they just gave me to cover my leftover wound mess.  I'm finding myself bouncing in my chair, sitting on my hands.  I FINALLY have energy to do things like yard work and spring cleaning, after a decade without it, and I'm supposed to be resting.  Auuuggh!
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Meinuk
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« Reply #6 on: April 30, 2010, 06:34:02 AM »

JB, I always have to stop and think about all you went through during your TX.  Yikes.  I think that losing my fistula is just like losing a security blanket.  I now know that when my boy kidney fails, I am back at square one.  No working kidney and no access.  I think that my brain is always looking for a solution, I like to have a plan A or B.  Now I just have to stop thinking about it, and just live.

Huh, isn't that what I usually tell people who are freaking out about dialysis?  Time to take my own advice.  I wish I had known about IHD when I got my fistula, I would have liked to blog about that.  Getting my fistula was easy.  I'm not too sure about writing about the removal.  People get scared of fistulas. What I see as life giving access.  My favorite line when people freak out about my arm is "this bump helped to keep me alive". I remember when Epoman hid a thread of pics of fistulas.  (I think we had something like an ugly arm contest).  I'm going to write about Fistulas and who is studying them over on DSEN, and I'll cross post here.  I don't know.  I'm just thinking in cyberspace for now.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #7 on: April 30, 2010, 10:05:34 AM »

I think you should write about every single moment of the removal surgery.  How else will the next person know what to expect?  Paving the way for those who follow - you are very good at that!    I like back up plans, so I feel your anguish!   

And Jbeany -- you are another IHD hero.  You and Meinuk show what real women are made of!      Love you both  :cuddle;
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« Reply #8 on: April 30, 2010, 10:14:53 AM »



When Dr. B takes it out in June, my boy kidney and I are on our own, and well...  I don't have a very good track record with men....

Sigh.... 

 :rofl;

I am interested to hear about your experience. Jenna's fistula up and quit in a huff on her transplant day. She is now looking at getting a new one and it's complicated. Next week she will have a ultrasound done - 3 studies in all - then they will make a plan. Dr. Weaver at USC is supposed to be one of the best, so I am hoping he can think of something good. Jenna would like to have a left arm fistula (has to be upper as her last was at elbow) so she can self cannulate if possible.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #9 on: April 30, 2010, 04:20:48 PM »

Paris, it is so funny you say that I should write every moment about it.  My surgeon and I are close.  When I was recovery from the transplant, he tossed his netbook at me and said "you should be writing"(he is VERY supportive). When he put in my fistula, he just used a local, and I would not shut up during the surgery.  I was giving his medical student advice about what practice area he should go into.  I commented on my surgeon's father's golf handicap.  The anesthesiologist was so freaked out that he pushed more drugs and draped my head.  I still kept up with the conversation. (I guess it is official, I am a control freak)

When we were looking at the ultrasound of the fistula on Monday, my surgeon rubbed the back of my neck and said "I'm gonna have to put you under for this, there's gonna be a lot of pain." I just laughed at him and said "You just want to shut me up." I make him laugh.

We had a deal when he put in my kidney.  I would not hide my phone in my sock, if he would give it to me in recovery.  When I was waking up after an rather long surgery (he had a couple of surprises) After I yelled at the staff to fix a slipped IV, the nurse asked me if I knew why I was there.  I said "Dr. Benvenisty just put a new kidney in me" Dr. B was at the nurses station updating my chart, and he heard his name he said "Anna, I'm right here." My answer was " You had better be.  Got my phone?".  He did have my phone, he brought it over to me, and I made my first call.   ;)

Back to the matter at hand... what kills me is that this is the PERFECT fistula.  Easy to cannulate, it is like a garden hose, great blood flow... but... the aneurysm is in a terrible position, and well, it is huge.  I have been sitting with my Blackberry trying to take a picture that does not make my arm look like a leg.  I've attached one that shows my "bump".  The picture just shows the size.  It is the position that is also troublesome, it is in the joint of my elbow.  We looked at the anastamosis (the original graft of artery to vein) and it is great.  It is just that the vein wall has thinned to such an extent that there is no way that the aneurysm will survive longer than the new kidney, I am very symptomatic, with pain etc.  It is like a time bomb. 

The other option were I still to be on dialysis would be to reinforce the aneurysm with gortex - but that is another nightmare, and since I technically don't need access right now, it is better to take out the whole vein and deal with access when my boy kidney decides he has had enough of me.
« Last Edit: May 23, 2010, 10:18:07 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #10 on: April 30, 2010, 05:05:44 PM »

Good luck on your surgery. I have a non working graft in my left arm that is all twisted and lumpy, it doesn't bother me.
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
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« Reply #11 on: April 30, 2010, 06:27:35 PM »

Huh, tell that boy he made a lifetime commitment - no divorces!  I want to be one of those medical miracles still chugging along 25 years after.  That doesn't sound tooooooo greedy, does it?  Hey, the fewer kidneys I need, the more there are for everyone else.

Okay, Anna, if you are in pain, then it's time to let the bump go. . .   ;D
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Meinuk
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« Reply #12 on: May 01, 2010, 07:34:30 PM »

Huh, tell that boy he made a lifetime commitment - no divorces! 

hahahahaha.  I am more of a no harm, no foul, walk away kind of gal! I guess my philosophy is "crap happens", I'll just deal with it as it comes.  I do plan on giving my boy kidney some adventures of a lifetime... I figure I owe him at least that, you know if there is a bar in heaven, I want my donor to have some fun stories to tell about his post death exploits - it's the least I can do.
« Last Edit: May 01, 2010, 07:41:14 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #13 on: May 23, 2010, 09:19:36 AM »

Here are some pictures that I call "History of a Fistula" from two weeks after my initial surgery to the removal (those photos will come)

This is the journey:

May 2005: Left up arm fistula placed - surgery was GREAT - went for a burger after @ Le Parker Meridian. Please note that it was 18 months between placement and use of my fistula - at no point was it "Immature" when I started dialysis.  It was "like a garden hose" a quote from my vascular surgeon.

January 2007: Start in-center dialysis at Davita Life Care in NYC.  >:(  First of seven major infiltrations by staff.  Taken by ambulance to Roosevelt hospital one particularly bad night.

April 2007: pea sized aneurysm appears.

May 2007
: the only tech that can stick me goes on an 8 week vacation to the Philippines. After major sticking problems, nine days without dialysis due to infiltrations, after many fistulagrams and angioplasties (unnecessary) the fistula has been so abused that a perm cath needs to be placed.

I am told that I can train for NxStage ALONE.

August 2007
: Ariel back from vacation, permcath removed, I am about to learn to self cannulate. Button holes established.

October 2007: IHD Vegas!! I am self cannulating, and NO ONE is allowed to touch my arm again EVER.

November 2007: My training nurse thinks I am exaggerating my fistula issues, and she wants to prove that she can stick me. She infiltrates me, and my rule is upheld.

November 2007 - November 2008:  Fistula Perfect - no real issues (other than the growing aneurysm, and need for fistulagrams and angioplasty every three months due to scar tissue)

November `08:  Deceased donor transplant.

January `10: symptoms start in earnest with fistula.  Pain, throbbing in neck, stenosis, aneurysm now size of mandarin orange. 

April `10: Can no longer ignore symptoms.  It is too large to ligate.  Must be excised.  Surgery scheduled. My question:  could this have been avoided if I had been allowed to start directly on NxStage as I had asked?  We'll never know.


« Last Edit: May 23, 2010, 10:19:23 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #14 on: May 27, 2010, 02:53:56 PM »


Wow, that's a humongous bump!  :bump;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #15 on: May 27, 2010, 07:20:00 PM »


Wow, that's a humongous bump!  :bump;

Not for much longer!   ;D
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #16 on: May 31, 2010, 01:36:52 AM »

Yep.. that is some "Bump" you have there Meinuk. I can understand your apprehension at losing it but pain and the risk of it rupturing is a no brainer!!   :banghead;

I remember my Dad's rupturing as a child (maybe 9 or 10) and he was doing home haemo at the time. Both my sister and I had to apply pressure while the blood flowed through our fingers and our mum drove like a manic to get help.

I hope everything goes smoothly and it can be tided off easily.   :cuddle;

I remember when Epoman hid a thread of pics of fistulas.  (I think we had something like an ugly arm contest). 

I too remember this thread. It was a great thread! I think if you are heading towards dialysis you need ALL the facts. The differences in fistulas are an important fact!
« Last Edit: May 31, 2010, 01:37:56 AM by Wattle » Logged

PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
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« Reply #17 on: June 21, 2010, 04:34:18 PM »

Best of luck tomorrow!

               :yahoo;
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« Reply #18 on: June 29, 2010, 06:54:30 AM »

NOTE:  This is NOT a typical tie off of a fistula. My fistula had to be totally removed.  In most cases, the fistula can be easily tied off, and it is not as involved a process as this.

Ok, it is gone.  I updated the first post and added the one week after picture.  Since there is a limit of  pictures, I will do the healing progress here.

Day One was taken in the hospital just before we left.
« Last Edit: June 29, 2010, 07:56:24 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #19 on: June 29, 2010, 06:58:16 AM »

Damn Meinuk!  that would have HURT!
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #20 on: June 29, 2010, 08:56:55 AM »

 :( owwww
Healing looks good though.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #21 on: June 29, 2010, 01:22:20 PM »

Flipping heck!

I am happy that this is over for you, and will be forever impressed at your pain tolerance. I go near-hysterical when a doctor even says the word 'IV' in my presence. I hope for continued smooth healing for you.
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« Reply #22 on: July 12, 2010, 07:15:44 PM »

The arm is healed.  I just updated the original post.  I'll post a pic a few months from now after the scars have faded.
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Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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« Reply #23 on: July 20, 2010, 12:19:24 PM »

wow sounds like Davita needs to go to H*** in a hand basket...No without the hand basket...
they are like the queens of infultrating! I had so much problems with it, they checked 17 times, finally saying i am just a baby, and offered to singe my nerves in my arm so i couldnt feel. I said no thanks and suffered until changing clinics!
Now my fistula looks like a giant snake, or... as one person said, a baby.... growing in my arm, ill have to take a pic and show yall. Its like 3 large lumpys
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« Reply #24 on: July 22, 2010, 06:52:14 PM »

I have a video of part of the surgery, but I don't feel comfortable posting it, because it is my whole team, and well, It just does not feel right to publish it.  But here is a link to a GRAPHIC screen cap (it is really just a blood colored lump, and some open skin, but you have been warned)  of the aneurysm after it has been lifted from the arm, and before it was excised.  It was pretty cool, they could see the blood rushing through the thinness of the aneurysm.  I was mad that I couldn't see, and asked them to go get a camera.  I am so happy they did.  Here is a link to the GRAPHIC pic. http://picasaweb.google.com/lh/photo/98o_TCDwdlTooOVWrPWK68C6GUx6uYDhGzv4GlIRYjg?feat=directlink
« Last Edit: July 22, 2010, 06:54:41 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

47 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
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