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Author Topic: Is getting a fitula going to kill me?  (Read 3251 times)
pitagory
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Sorry guys for my spelling and punctuation

« on: April 24, 2014, 11:27:33 PM »

Hello everyone I haven't been on here for a long time missed everyone went thru some changes and did not have time to be on the computer to much any way. I am in a bind here and looking form some advice and I know this is the perfect place for it so here goes. Last year I was doing PD but my legs stated getting fluid overload and where swelling and getting lots of blisters so they had to put me on hemo (bummer) any way I have a CVC on my neck on the right side I have had this for about 9 months now and have never had a problem with it I do know that they are temporary. now about 8 months ago I went in to have my fistula done and they did not do any thing because as soon as I got sedated I went in to cardiac arrest so instead of a fistula I came out with a stent in my heart so I had to wait another 6 months to do the surgery  again  now about 2 months ago I went in again and this time the doctor was almost finished with my fistula when the last 5 minutes of my surgery I went in to cardiac arrest again the doctor said he has been using local anesthesia with sedation so I am asleep the whole time and this time it took longer to revive me he said I had mucus in my lungs and after it was cleared I was OK the first time they said it was a block in my heart. I think its the anesthesia but I have been under before and have never had any problem but it has always been general anesthesia and this time it was a block on my left arm could that be it? I am very scared because the doctor wants to go in again to raise it cause its to deep when him self told me in the hospital that I could never have any more surgery's. I don't know what to do I'm scared my whole family is scared should I look for another doctor? the dialysis clinic is pushing  me already to have it done they even called my doctor and told them that I said I was ready to have the surgery  when I been saying all along that I am scared to do it, are they going to tell my 16 year old son I'm sorry for your loss. what's the rush for them, do they get paid more or what? any way thanks in advice for reading my story any advice would be very much appreciated.  :stressed;
« Last Edit: April 25, 2014, 04:36:07 AM by pitagory » Logged

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cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: April 25, 2014, 03:03:13 AM »

I'm so sorry to read about your situation. I'm sure we have some real professionals here who can give you some real answers. I just can tell you that I had at least 2 fistula's done with just local, but they weren't very deep though. I'm sorry that I can't be of more help.

Wishing you all the best,
Lots of luck, and love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cariad
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What's past is prologue

« Reply #2 on: April 25, 2014, 04:08:12 AM »

Oh, hun! I am no expert, but it bothers me that they don't seem to be listening to you, nor addressing your concerns and thoughts about why this is happening to you. It sounds like their communication is crap, or worse, they are just assuming that they can railroad you into this. I would keep pushing back until they can explain to you why they are reasonably certain that you will be OK through the op. I hate to even say this, but could it be that you really don't have other options, so they *must* take the chance on the fistula surgery, which is normally such a minor procedure?

Just remember you don't have to agree to a thing until you at least have your questions answered (to the extent that they are able to answer them). If they just won't listen, could you switch doctors? No one should have to rely on a doctor that they don't trust.

Good luck. You're in my thoughts.
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obsidianom
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« Reply #3 on: April 25, 2014, 05:32:41 AM »

Hello everyone I haven't been on here for a long time missed everyone went thru some changes and did not have time to be on the computer to much any way. I am in a bind here and looking form some advice and I know this is the perfect place for it so here goes. Last year I was doing PD but my legs stated getting fluid overload and where swelling and getting lots of blisters so they had to put me on hemo (bummer) any way I have a CVC on my neck on the right side I have had this for about 9 months now and have never had a problem with it I do know that they are temporary. now about 8 months ago I went in to have my fistula done and they did not do any thing because as soon as I got sedated I went in to cardiac arrest so instead of a fistula I came out with a stent in my heart so I had to wait another 6 months to do the surgery  again  now about 2 months ago I went in again and this time the doctor was almost finished with my fistula when the last 5 minutes of my surgery I went in to cardiac arrest again the doctor said he has been using local anesthesia with sedation so I am asleep the whole time and this time it took longer to revive me he said I had mucus in my lungs and after it was cleared I was OK the first time they said it was a block in my heart. I think its the anesthesia but I have been under before and have never had any problem but it has always been general anesthesia and this time it was a block on my left arm could that be it? I am very scared because the doctor wants to go in again to raise it cause its to deep when him self told me in the hospital that I could never have any more surgery's. I don't know what to do I'm scared my whole family is scared should I look for another doctor? the dialysis clinic is pushing  me already to have it done they even called my doctor and told them that I said I was ready to have the surgery  when I been saying all along that I am scared to do it, are they going to tell my 16 year old son I'm sorry for your loss. what's the rush for them, do they get paid more or what? any way thanks in advice for reading my story any advice would be very much appreciated.  :stressed;
Ok I will try to help. First off TAKE A DEEP BREATH AND TRY TO CALM DOWN !!!
Now remember, the world probably wont end if you do end up staying with the catheter if the fistula becomes too dangerous. Yes its more risky but as you wrote, you have been using it 9 months without a problem. Its not perfect but it does work. There are many patients who for various medical reasons cant get fistulas or grafts and end up on catheters for YEARS.
Now if you can calm down knowning that let me see if I can help figure this out. Can you slow down a bit and give  me more info on what ocurred?  Do the dotors know why you went into cardiac arrest with just local and sedation? Was it the sedative? It would be unusual if local would cause that although if they flooded you with lidocaine and let it go suddenly into the circulation it could effect the heart. More info would help.
How is your heart now ?  Any damage? Do you have a history of cardiac problems? Are you diabetic? What caused your kidney failure? What medicines are you taking? What other medical issues do you have?
I was a surgeon in another time in my career (orthopedic type) and did a lot of surgeries under straight local anesthesia with no sedation including with power bone saws etc. and most patients did fine without the sedation. It can be done painlessly . So if the sedation was the cause of the cardiac issue , then perhaps it can be done without it . There are ways around most issues so give me more information and i will try to think of what to ask your doctors and how to approach this.
« Last Edit: April 25, 2014, 05:35:35 AM by obsidianom » Logged

My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
pitagory
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Sorry guys for my spelling and punctuation

« Reply #4 on: April 25, 2014, 06:22:27 PM »

Hi obsidianom I'm more calm now thank you. I don't know what kind of sedation was used on me all I know is that it was a local . The Doctor are not sure what made me go in to cardiac arrest that's the problem the fist time they said it was a blood clog by my heart that why I got  stint put in. the second time they say it was because I had mucus stuck in my lungs and that stopped me from breathing. I am Diabetic I did have about 3 weeks ago have a nuclear stress test done and that came out good. next I am going to see a pulmonary doctor and see what he thinks. as for medications I take Tramadol 50mg 3 tablets a day for restless legs, glipizide, amlodipine 10mg once a day, furosemide 40mg, Crestor 10mg, clopidogrel 75mg, alprazolam0.25mg, metocloramide 10mg, carvedilol 6.25 and last one aspirin. Never had any cardiac problems. I am over weight 103 kilos, I have to sleep sitting up and cant breath if I lie down ( doctor thinks that could be one of the reasons because they lie me all the way back) what caused my kidney problem well its me not having any insurance at first and me not taking of my diabetes. and last but not least I have neuropathy in my legs. 
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obsidianom
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« Reply #5 on: April 26, 2014, 06:12:32 AM »

Hi obsidianom I'm more calm now thank you. I don't know what kind of sedation was used on me all I know is that it was a local . The Doctor are not sure what made me go in to cardiac arrest that's the problem the fist time they said it was a blood clog by my heart that why I got  stint put in. the second time they say it was because I had mucus stuck in my lungs and that stopped me from breathing. I am Diabetic I did have about 3 weeks ago have a nuclear stress test done and that came out good. next I am going to see a pulmonary doctor and see what he thinks. as for medications I take Tramadol 50mg 3 tablets a day for restless legs, glipizide, amlodipine 10mg once a day, furosemide 40mg, Crestor 10mg, clopidogrel 75mg, alprazolam0.25mg, metocloramide 10mg, carvedilol 6.25 and last one aspirin. Never had any cardiac problems. I am over weight 103 kilos, I have to sleep sitting up and cant breath if I lie down ( doctor thinks that could be one of the reasons because they lie me all the way back) what caused my kidney problem well its me not having any insurance at first and me not taking of my diabetes. and last but not least I have neuropathy in my legs.
My guess then based on all that is the sedation slowed your breathing the second time and allowed the lungs to clog. Also they probably had you flat on the table. Perhaps next time you could ask about straight local with no sedation so your lungs wont be effected and they could prop you up on the table as you wont be sleeping or sedated.
In the meantime at least you have the catheter and can take your time having them figure this out. Glad you are feeling better.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
komomai
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« Reply #6 on: April 28, 2014, 09:07:37 PM »

Aloha pitagory, I too would be frighten if that happened to me.  I had a tunnel catheter done in Aug. 2013, it came out on my birthday April 1, 2014.  They stuck a temp. catheter in my right leg and treated me with antibiotics for 14 days for the infection.  I talked to the vascular surgeons at the hospital I'm in and they said they would cut a vein out of my leg to make a graft for my left forearm.  My kidney doctor said that was a bad idea as I have calcification in both legs, so any kind of cut would take a long time to heal.  My doctor referred me to another hospital to see their specialist who does upper arm fistulas.  During our meetings I explained that I would need to have access to do my own needles for home hemodialysis.  It seemed like it would work using the buttonhole technique.  But he would have to cut deep to get to the vein and artery to bring to the top to form the fistula.  Healing time would take a while, and there in lies the problem, I don't have any more annual and sick leave available, and I can't afford to go on LWOP.  So back I went to my first hospital and they put in a tunnel catheter in my left leg.  It was done yesterday, and right after that I did 2 hours of hemodialysis.  Now I should be able to get back to work and save up my leave so I can do the upper arm fistula.

So yes, if possible get a second opinion, weigh your options and obsidianom suggests calm down.  I always try to ask questions with all the doctors I see, as I've told them this is my body and if I have doubts I will ask if there's another way to get it done.

So is your catheter working well now?  Might want to ask about a tunnel either in your chest or leg area, it's more permanent.  Wish you all the best, hang in there. :thumbup;
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Charlie B53
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« Reply #7 on: April 29, 2014, 09:35:33 PM »


We never know we have a heart problem until we have an event.  With that said, Do you now have a Cardiac Dr?

The Cardiac Dr may be a better person to decide of any risks with sedation.

A respiratory specialist can give you a treatment, breath in the medication to further open up your airways while in pre-op.  I've had this done a couple of times and was really surprised what difference it made.  I didn't think I was congested prior, but after the treatment I felt a great difference in how easilly I could breathe.

You need to express these concerns to the Dr, and do NOT consent until you get the answers you need to feel comfortable knowing the Dr's are treating each of your concerns.

I question your glipizide.  My endo Dr just stopped mine telling me it isn't a great choice for a renal patient.  That it's function works thru effect on the kidneys, if kidneys are not well the drug has minimal effect.  You may be better off increasing your insulin, unless your numbers are already well controlled.
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