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.
: 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.
: 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