ugh, when it rains it pours...

[calypso]

So I had them take off a bit too much fluid today because its the weekend and I don't go back tilll tuesday, or so I thought, more on that later.

I went down to 105/60 but I felt ok so we left it like that.

Went home, got sick with vomiting and diarrhea so I lost even more fluid. Felt like I was gonna pass out and there's no way I can drink fluid and keep it down so I went to the ER. So my bp is rather low but they gave me 500ml of fluid, Zofran (antiemetic) and now I'm back home and feeling better. The nausea and vomiting is gone.

I had a fistula maturing for the last month and a half on me left arm, felt some pain there. Got out my stethescope and I hear nothing.

So I lost the fistula, probably due to clotting from the low BP. Yes I wear a band that tells them not to do BP or needle sticks in that arm and they complied so it's not from that.'

All this and it turns out it's not a day before a long weekend anyway because they changed the schedule because of Thanksgiving holiday. They didn't tell me this until I just was about to walk out the door. They were like ok see you Monday! And I was like Monday? Don't you mean Tuesday? Nope Monday because of the Holiday on Thursday.

So basically I pulled extra fluid and went low BP, and lost a fistula because the neglected to tell me they changed the schedule.

What do we do this all for anyway? Part of me wants to give up after this last setback.

[kristina]

I am so sorry, calypso, and I hope, it will be sorted out soon.

Best wishes from Kristina.

[calypso]

Thank you Kristina. Your kind words are greatly appreciated. Hope you are doing better than I am.

[natnnnat]

Ahhhh fer *%&*#& Calypso this is a crappy turn of events.
 

[boswife]

dogonit!!  this is what scares me...  Im glad your home and feeling better, but danged if it shouldnt have been avoided.........by them 

[greg10]

..
So I lost the fistula, probably due to clotting from the low BP. Yes I wear a band that tells them not to do BP or needle sticks in that arm and they complied so it's not from that.'
...

Sorry to hear this. Keep your chin up.  You don't know if you lost the fistula, it may still be salvageable with angioplasty.  If I were you I would watch the hemoglobin level (not too much Epoetin) and maintain proper blood thinners during dialysis.  Keep the hemoglobin around 11 to 12 g/dL and take baby aspirin (if not allergic) and vitamin E  daily to keep your blood thin for now.  I am assuming you are using a chest catheter, so the time to stop bleeding is not a problem.

As to your response in another thread saying your NxStage center said that you can't train without a developed fistula, tell them other centers let patients train on a chest catheter.  I know that because we have done it.  In some ways it is slightly easier because of the lack of cannulation and the stoppage of bleeding after dialysis.  There are other members of this forum doing home dialysis (some even nocturnal HD) using a catheter.

If your recent experience is any indication, it indicated that if you want to do it right, you may have to take charge and do it yourself.  It doesn't mean you won't make mistakes, but at least you are in charge and you are likely to make better decisions.

[calypso]

Thanks for the well wishes and advice everyone!

I did take 3 low dose aspirin as soon as I found out the fistula clotted (81mg each) Just took another 2 now. So that's 405 mg of aspirin for today. Going to bed soon. I don't have any vitamin E on hand but I hear eggs are high in vit E. Might try eating some in the morning.

They do let us train with the catheter, but they want a working fistula in place because they don't want us to use just the catheter long term. Also they want to train how to cannulate at the same time.

 I sometimes wish I could do home hemo with just the catheter like I used to do with PD, come what may. Fistulas seem so....problematic.

[Riki]

This may sound rather critical, but why would you let them take off too much if you knew you were going to feel like crap?  Unless you go nuts with your fluids, you're not going to gain that much in 2 days.

[Jean]

the longer I am in this medical mess, the more I realize that medical people think you know everything, including their temperment and their schedules. You would think a sign on the door or something to alert the patients a week ahead of time would be in order, but, obviously not. It is not as if no one knows next Thursday is a holiday!! BTW, sometime when you are bored, look at WWW.The livingstongrp. (not a link) the guy on the left is my stepson and except for the facial hair you are a dead ringer for him, I think.

[kristina]

Hope you are feeling a little better today...

Best wishes from Kristina.

[Darthvadar]

Aaaaw, Calypso, you poor thing... I'm really sorry to hear that...

It's dreadful that you're having to go through all of this because soom twit didn't tell you what you need to know....

Mind you, it appears to be yet another case of "Why the Hell would anyone tell you anything???... You're only the patient!"...

Hope things improve for you very soon...

LOve...

Darth...

[calypso]

This may sound rather critical, but why would you let them take off too much if you knew you were going to feel like crap?  Unless you go nuts with your fluids, you're not going to gain that much in 2 days.

I asked them to remove that much fluid, I always do that on long weekends because when I'm overloaded with fluid I feel worse than slightly dehydrated. But I did come off the machine with a normal blood pressure after rinse back so I felt well after dialysis. It's when I got home and the diarrhea and vomiting started from a virus that I became more dehydrated. Though there was no way I could have predicted that happening. I went to the ER to replenish the fluids via IV because there was no way I would be able to keep anything down and replenish the fluids myself. Unfortunately somewhere along the line I lost my fistula because when I got home from the ER it wasn't functioning. I'm not really sure at what point I lost the fistula. I only checked it after coming home from the ER. I should have checked it after dialysis but I don't think I did.

So it's a number of factors really that caused this mess. It's just that it could all have been avoided if I knew it wasn't going to be a long weekend and I wouldn't have asked to have so much fluid to be removed in the first place.

P.S. Don't worry about being critical of me, I'm a big boy I can take it :-) Also I take criticism as a learning experience so I'm grateful for it.

[boswife]

Sorry,,again    So what happens now with D? (fistula situation)  and, just my thought because we too do "a little more" when weekend is here, what could have been done ahead about that besides knowing it wasnt a weekend. It seems that even if we WANT more off, they should know each persons "limit" (i guess they do yours now) and only take off what is noted that you can handle??  Mabie im asking too much, really dont know.  It was kind of weard because hubby too took off more than they ment to (not his choice, they oopsed it....YEA! really) and he was feeling sickish last night.  I had read your post so rushed to take blood pressure and sure enough it was low for him (95/50) so he ate a few crackers, waited 15min and checked again.  It went up to 115/ so that was doable.  Anyway, most of all, im glad your ok, and mabie now  know your own numbers to say, "no more than X amount to take off"  

[Riki]

Exactly Boswife.  I know my limit.  No matter what my weight is, I know that if I take off more than 3kgs, I'll be on the floor when I stand up for the last BP.  It's good to know what the limit is, and know what it feels like if your BP starts to drop.  This info comes in handy when you're traveling. You can tell them exactly what needs to be done, cuz they will ask you if it isn't spelled out in your chart.

[calypso]

What happens with D is I have a chest catheter so I can still do D. My fistula wasn't finished maturing yet so it hadn't been used yet anyway.

Does anyone know how long I can wait and still have the angioplasty work to get it functioning again? I'm going to call the place that fixes fistulas first thing Monday morning. Tho I have D from 6-10am so I'll have to call them around 11am. So what is the likelihood they can fix it? Also due to the holidays coming up I don't know if I can get an appt. before thursday, or should I go back to the ER and have them call a vascular surgeon to fix it? I just want to know if this can wait or not.

Why I want to wait? Because I know a good surgeon who I want to hold out for rather than go to ER and have whatever surgeon is on call that I don't know. But I don't want to hold out if it hurts my chances of it being fixed. See around here we have this place that does dialysis accesses only, and they are considered experts at it. Well they put in my chest cath and let's just say that expert label is well deserved. That's why I want to hold out for them rather than take my chances with a surgeon I don't know at the ER.

[Riki]

I'd at least see if you could get an ultrasound done.  That could tell you a better idea of what's going on for when you see the doctor you want to see

[boswife]

gosh, it seems like this was just talked about somewhere here??? or i read somewhere else on the internet..  I hope someone remembers and fills ya in if there is a time limit type thing.

[LoneHighway]

What happens with D is I have a chest catheter so I can still do D. My fistula wasn't finished maturing yet so it hadn't been used yet anyway.

Does anyone know how long I can wait and still have the angioplasty work to get it functioning again? I'm going to call the place that fixes fistulas first thing Monday morning. Tho I have D from 6-10am so I'll have to call them around 11am. So what is the likelihood they can fix it? Also due to the holidays coming up I don't know if I can get an appt. before thursday, or should I go back to the ER and have them call a vascular surgeon to fix it? I just want to know if this can wait or not.

Why I want to wait? Because I know a good surgeon who I want to hold out for rather than go to ER and have whatever surgeon is on call that I don't know. But I don't want to hold out if it hurts my chances of it being fixed. See around here we have this place that does dialysis accesses only, and they are considered experts at it. Well they put in my chest cath and let's just say that expert label is well deserved. That's why I want to hold out for them rather than take my chances with a surgeon I don't know at the ER.

My first fistula quit after a month. I went right to the ER but they said there was nothing they could do because I wasn't using it yet. The surgeon also told me by phone there was nothing that could be done. My second fistula quit the day after surgery. Nothing was done then either.

So hearing your story here, I don't have much, if any, confidence going forward that I will get one working long enough to use, and I'll be constantly worried it's going to quit. I'm not on D yet.  It's all so very depressing.

[okarol]

Does anyone know how long I can wait and still have the angioplasty work to get it functioning again? I'm going to call the place that fixes fistulas first thing Monday morning. Tho I have D from 6-10am so I'll have to call them around 11am. So what is the likelihood they can fix it?

The sooner, the better. Can you ask the unit nurse or social worker to make the call for you? Or, if you don't have a cell phone, borrow one and call at 8:30 - 9:00 AM. You're right, Thanksgiving may screw things up.
I would probably go to the ER on Monday after D if you cannot get an appointment immediately. I remember Epoman was adamant that it be done as soon as you notice a problem. He convinced me.

[calypso]

I got an appt. for tomorrow morning from the place I was hoping for. Now to cross fingers and hope for the best!

I'm getting conflicting reports of success rates. But one nurse that I highly respect said the clinic where I want to have it done has had very high success rates getting clotted fistulas working again. She has 28 years of experience as a dialysis nurse. Here's hoping she's right!

I believe in these guys. It's why I chose to wait till today and not go back to the ER immediately and wind up with a surgeon I don't know. Hope I made the right decision.

[calypso]

What happens with D is I have a chest catheter so I can still do D. My fistula wasn't finished maturing yet so it hadn't been used yet anyway.

Does anyone know how long I can wait and still have the angioplasty work to get it functioning again? I'm going to call the place that fixes fistulas first thing Monday morning. Tho I have D from 6-10am so I'll have to call them around 11am. So what is the likelihood they can fix it? Also due to the holidays coming up I don't know if I can get an appt. before thursday, or should I go back to the ER and have them call a vascular surgeon to fix it? I just want to know if this can wait or not.

Why I want to wait? Because I know a good surgeon who I want to hold out for rather than go to ER and have whatever surgeon is on call that I don't know. But I don't want to hold out if it hurts my chances of it being fixed. See around here we have this place that does dialysis accesses only, and they are considered experts at it. Well they put in my chest cath and let's just say that expert label is well deserved. That's why I want to hold out for them rather than take my chances with a surgeon I don't know at the ER.

My first fistula quit after a month. I went right to the ER but they said there was nothing they could do because I wasn't using it yet. The surgeon also told me by phone there was nothing that could be done. My second fistula quit the day after surgery. Nothing was done then either.

So hearing your story here, I don't have much, if any, confidence going forward that I will get one working long enough to use, and I'll be constantly worried it's going to quit. I'm not on D yet.  It's all so very depressing.

So sorry you lost 2 fistulas already. And sorry my post made you lose confidence, but there have been stories of some people having even up to 15 procedures done to get their fistulas working and it finally worked, so I say don't lose hope yet!

This is also my 2nd fistula, the first one, at my wrist, stopped before I even woke up from anesthesia! They said there was nothing they could do for that one because the blood vessels were too small, so they recommended getting one up higher over the bicep to improve it's chances. Well it made it for 1 1/2 months but now it stopped.

My advice to you (and to me) is to exercise the hell out of the arm. Hand strengthening AND bicep curls. Get that arm as big and strong as possible and that should increase your chances. Ever seen a bodybuilder's veins? That's what you want. I am skinny and don't work out enough. Unless you have a disease of the blood vessels (I forget what it's called) you should be able to improve your chances.

[boswife]

Im soooooo happy you got your wish in this!!  it makes all the difference in the world to go in with confidence in who your dealing with..  Im very happy!!  let us know 

[calypso]

Well good news for a change!

The procedure went well and I can now hear a bruit yet again in the fistula! It worked!

Ok so here's the rundown. I went in and he examined the vein with his fingers and could feel that the vein was hard and clotted up.

Then he checked it with a sort of modified ultrasound. By modified I mean it gives some kind of extra info with colored splotches over the normal black and white ultrasound. The parts that are highlighed in color denote flow I guess.

Anyway he then marked with a pen where he would go in, one puncture in the lower part and one in upper. Through the lower part he would put guide wires to clean out the clot upward (towards shoulder) then if that cleared up he would make another puncture up higher and slide wires down toward the vein/artery connection and clear that up.

Then after that he would slide a balloon in and do an angioplasty. He will do the angioplasty in 2 steps, can't do it all at once because there is a risk the vein could explode and that would not be good for obvious reasons. So one angioplasty today and one next week.

So before we went into the OR he asked if I had any questions so I asked him what causes the clotting off. I told him about all I went through last Saturday. I was surprised at his answer.

He said no amount of blood pressure drop alone would cause the fistula to stop altogether. The blood pressure could drop to the floor and the fistula should keep working. He said that my problem was one of stenosis, or narrowing of the vein. He said the vein's natural response to the increased pressures in a fistula is to clamp down, or narrow, in order to counteract what is sensed by the body as an abnormal pressure. He said fistulas are not normal and are seen by the body as something gone wrong. He did mention that a blood pressure drop would facilitate the vein to do what it wants to do, and clamp down like that, but that the underlying problem is one of stenosis. I guess that answers another question I had, and that was that I see other patients at the D clinic blood pressures drop much lower than mine ever did and their fistulas never clotted off.

He also said something else that surprised me. Exercising a fistula to keep it running is a myth. I was like 
He said you can exercise all you want, it's good for you, so keep doing it, but stenosis will happen if it's going to happen anyway. It's a natural response of the vein to narrow. It happens to people who exercise regularly, and those who don't.

So to my surgeon a hearty:  and  He got my fistula that was clotted off since Saturday working again, and today is Tuesday.

It was all done under local anesthesia only, I was awake the whole time, and I could feel the pinching and pulling and guide wires going into the vein and some pressure. Also felt some throbbing when the blood flow cleared up, felt either like blood clots moving or a blood vessel pulsating, I couldn't tell because it was numb I could only feel pulsation like. It was a little painful and uncomfortable at times, but it was never unbearable. And the pain didn't last long.

They also had one of those c-arm fluoroscopes to see what they were doing in there. This is a c-arm fluoroscope pic I found on the net.

[kristina]

Great news!
 
I am so pleased for you!

Good luck from Kristina.

[calypso]

Great news!
 
I am so pleased for you!

Good luck from Kristina.

Thanks Kristina!