Mama said there would be days like this

[Vt Big Rig]

We started home dialysis training in mid April. Due to MANY fistula issue we did not go home unit June 1 and then the nurse came to the house for almost two weeks to assist (especially after third  fistula gram caused major swelling).

But for almost two weeks now my wife has done all the cannulations and connections by herself with great results. Last night we could not get arterial to be smooth until the  third needle adjustment and only got the venus after two adjustments and a re-stick. And them we turned on machine and got ridiculous pressures immediately on aterial.

We tried to readjust again but needle site started bleeding (a LOT). We bag it and decide to quit for the night and start fresh the next day.  After being bandaged I was cleaning up and preparing our cart for the next day. Then I go to kitchen to find my wife standing over the stove sobbing and terrified that I am having more fistula problems. I think we just had a bad stick. I tell her it happens and will very well happen to us again. She calmed down at least in front of me. 

Please tell me "it happens" concerning the sticks and we will get better.

[obsidianom]

sorry for the issues. Yes fistulas can be very problematic in some patients. We have had 3 surgeries to repair my wifes fistula. In the end it works out usually. You do have the option of a catheter for awhile if necessary. They are easy to use while you get the fistula fixed. We did catheter for months at the beginning.

[Vt Big Rig]

sorry for the issues. Yes fistulas can be very problematic in some patients. We have had 3 surgeries to repair my wifes fistula. In the end it works out usually. You do have the option of a catheter for awhile if necessary. They are easy to use while you get the fistula fixed. We did catheter for months at the beginning.

Thanks

My fistula is over a year old. We installed it to be prepared. I have had three ream jobs and some branch blocking since we started but it has been running great for better than two weeks now.

Do you ever have days when it just does not seem to want to cooperate?

[PrimeTimer]

I understand what your wife is feeling. It's downright awful what a carepartner and patient have to deal with but you have to take a deeeep breath every day and start again. And it's okay to cry.

My husband self-cannulates but I help guide his hands. He's been doing home hemo for 1 1/2 years and has had to have SEVERAL angioplasties (ballooning) performed on his fistula. Seems like every few months he needs to be ballooned. But over time, we've noticed that his fistula is working better and better. All that bleeding and high arterial pressure and alarms in the beginning are quite stressful but...there finally comes a point where things smooth out. Sometimes it's not the stick but rather, the arterial pressure pod on the cycler needs to be reset. Things smooth out and...then you go thru alarms again and another trip to the vascular surgeon...then it smooths out again. My husband uses the Buttonhole method to cannulate. I believe this makes it a little easier for him because he sticks the needles in at the same spot, angle and depth each time. Kind of helps take the guesswork out of it. Anyway, please tell your wife that we all go through this and it's okay to feel what she feels. Best thing to do is just keep offering one another support and encouragement. 

[justagirl2325]

We've done home-hemo only with the catheter so far.  My husband got his fistula in January, starting using it in centre in April and had problems.   He had a fistulagram and it seems to be working well so he has been getting trained to stick himself.  He has not been able to do it.  He can't get the catheter out until either he or I learns to stick in the needles...or give up and go back to the hospital 3 days a week for life.

So tomorrow I'm going to watch for the first time and see if I can do it for him.

[cassandra]

I'm well impressed with all the care partners who try, or stick their partners. Just asking though if there's a physical, or medical reason why one doesn't self cannulate?

Love, Cas

[Vt Big Rig]

I'm well impressed with all the care partners who try, or stick their partners. Just asking though if there's a physical, or medical reason why one doesn't self cannulate?

Love, Cas

In my case with my fistula in my right arm I am not steady enough with my left. And we do not use buttonholes. I said something one day about learning to stick myself and my wife freaked out ... not wanting me to do in fear of messing up the access. With the  issues we had I see her point. Not that I am keen on the idea anyway.

[cassandra]

In my case with my fistula in my right arm I am not steady enough with my left. And we do not use buttonholes. I said something one day about learning to stick myself and my wife freaked out ... not wanting me to do in fear of messing up the access. With the  issues we had I see her point. Not that I am keen on the idea anyway.
[/quote]

Fair enough, however, my fistula is in my dominant arm, and by 'playing' on my mobile phone, and texting, and writing with my 'weak' arm, I'm completely able now to 'do' myself. It makes me feel completely independent. But of course that's my choice, basically down to my paranoia, about having an argument with hubby, and than having him stick me. Not going to happen

   

[obsidianom]

I cannulate my wife and run the dialysis . I like being involved . Also being a doctor I am better at it then her. I wont let anyone touch it other then me. I do rotating sites. I don't like buttonholes in general but for some patients they work well.

[justagirl2325]

I asked him what he thought his main issue was, he says nerves get him and he can't get the angle right.  He's trying to use buttonholes.  I suspect it's more to do with poor eyesight but that he just won't admit that. 

I just hope I can do it.

[Vt Big Rig]

UPDATE

Today went fine so far. Up and running.......  First stick ..... Good pressure

And CASS ...we have been married for 40 years ......if I can't trust her .......I am doomed.

[PrimeTimer]

UPDATE

Today went fine so far. Up and running.......  First stick ..... Good pressure

And CASS ...we have been married for 40 years ......if I can't trust her .......I am doomed.

  EXCELLENT!  I wanted to add that after pulling needles, be sure not to "mash down" on the fistula til the bleeding stops. I read somewhere that over time, applying too much pressure can damage a fistula. I apply "gentle" pressure using the 2-finger method and I hold for 4+ minutes before taping the gauze down. I never lift the gauze to take a "peek" to see if the bleeding has stopped. If you peek, the bleeding may continue or start up again and you have to keep applying pressure. It's real easy to panic when that happens and to think that you have to hold the gauze down "hard" to stop the bleeding but in reality, you are just putting unnecessary pressure on the fistula and maybe even causing it to bleed out the needle holes more.

Edited to correct spelling: peek vs peak

[Vt Big Rig]

  EXCELLENT!  I wanted to add that after pulling needles, be sure not to "mash down" on the fistula til the bleeding stops. I read somewhere that over time, applying too much pressure can damage a fistula. I apply "gentle" pressure using the 2-finger method and I hold for 4+ minutes before taping the gauze down. I never lift the gauze to take a "peek" to see if the bleeding has stopped. If you peek, the bleeding may continue or start up again and you have to keep applying pressure. It's real easy to panic when that happens and to think that you have to hold the gauze down "hard" to stop the bleeding but in reality, you are just putting unnecessary pressure on the fistula and maybe even causing it to bleed out the needle holes more.

Edited to correct spelling: peek vs peak

Interesting in different training methods. We were taught to hold with two finger method for ten minutes and then "peek". If not "leaking" put on new gauze and tape. If we leak we hold for a while longer. If it leaks I ask if we can lower heparin a bit. So far we are using 5,000 units and have not had any clotting problems in pod or dializers.

Since it is at the end of a treatment those ten minutes seem like FOREVER ....

[Vt Big Rig]

And then there was tonight ...... aterial OK. Venus can't prime, cant pull out with syringe. Restick. Can't prime. Draw clots into syringe. Pull needle. Squeeze out a tablespoon of gross clots.

Trying for fourth fistulagram in the morning. Last one lasted all of 12 treatments.
Crap, crap, and double crap.

[cassandra]

Holy s**t , terrible to hear, I'm so sorry, will be thinking of you and your wife and sending healing vibes your way


     


Lots of love, luck and strength, Cas

[Hootie]

Hang in there! It will get better. You have had more issues than most but we all have had some issues either with maturing fistula, sticking,  or pressures...Just got to keep working with access doctors and nurses to get it right...

One thing that I have found...once you get a good flash on either a or v, get the smooth feel of a very easy push to find the sweet spot. Then the needle goes in the rest of the way very easy and you will find the pressures are better on the machine. It takes time to get that feel but once you do, you will have an easier go at it. When I get that special spot for both, I know it is going to be a good day!

Things will improve for you! Just stay focused and keep working at it with the right medical people.

[Vt Big Rig]

We are at the hospital right now to have another fistula gram. Two nurses here never knew that dialysis could be done at home! They are now educated!!!!

At least we are getting in today and hopefully will get some treatment in this weekend.

[PrimeTimer]

Hope they get things flowing again quickly for you guys so you can be "back in action". Sometimes after my husband has had an angioplasty and there is better flow, seems the increased flow moves the fistula a little (makes it fatter or moves it a little to the left or a little to the right, etc) and he has to change the angle and depth he puts the needles in. We've learned to be patient and expect this little frustration until we get use to the new angle/depth. Also, and I realize you and your wife might already be doing this but, as he inserts a needle, sometimes I have to kind of "hold down" his fistula by pulling it slightly taut on the sides using either both of my hands or a finger on each side of the fistula to keep it from moving or sliding around as the needle goes in. It's almost as if fistula's get a little rubbery inside or like a fat piece of spaghetti and until it goes in at just the right angle, needles sometimes seem to just push the fistula around, as if to be chasing it instead of penetrating it.

Another thing I learned is that once we are ready to hit "Go" and start treatment, we try to increase his blood flow rate beyond the start point of 200 within a minute or so. This seems to have helped him to avoid clotting up before we level off at his preferred rate of 360-380. I'm not saying to increase your speeds and climb up at lightening speed, I just think that the sooner the blood can start being circulated the better. I think that's why people who do nocturnal and going at much slower rates have to use Heparin pumps. Well, good luck with yours, may there be better days ahead! 

[Vt Big Rig]

Well we were squeezed in and it is coming up on a holiday weekend but we waited almost 6 hours before going in the OR.

Show the surgeon a picture we pulled and he stuck a probe in the fistula with a camera on it an pulled it out and said it was as clean as he could have made it. But he did give my wife some tips on cannulations and assured here he sees this often from in center folks too. Maybe we pulled out all the clots. We will see when we run tomorrow.

And Prime Time...... someone showed my wife the second method of holding my are and she goes likes it better. What she likes , I like.

We start the machine at 200 ...... wait two rounds of stable pressures and if good up by 50, Repeat.st because as you know the venus pressure may take a second to show up. I do  not what that is in time.

[Vt Big Rig]

Here we go again

Last time in this thread I got another fistulagram and he said it was cleaned out. That was 17 treatments ago. Last night after four sticks we could not get access. Could never get line attached to needle to fill without pulling hard on a syringe. When we did get that we see a bunch of clots in the line. Squeeze out a pile on a pad AGAIN.     After four tries we decide to quit and try for tonight.

Last fistualgram last 14 treatments. This one, although he did not do anything, lasted 17 treatments. 
Terrified that tonight will be the same and of course it is coming on a weekend so no vascular guy will be available.  And is a monthly fistulagram in my future?

[Simon Dog]

coming on a weekend so no vascular guy will be available.

Hospitals generally have vascular surgeons on call (been there, done that).   The trick is getting the attending in the ER to decide it is important enough to "make the call".

The might not have the team for a fistulagram available, so a weekend might necessitate a femoral line.

[Vt Big Rig]

My blessed wife would not give up. We pulled 3 half syringes of clot out of aterial and 1 1/2 out of venus but we are now running with good pressures.

Thank you God and God Bless her.

[cassandra]

Wow, I'm well impressed 

Extra hugs for your wife

       

[Vt Big Rig]

Wow, I'm well impressed 

Extra hugs for your wife

       

Yep, we did an in home fistula gram!

[PrimeTimer]

Sorry if this was already brought up but wondering if perhaps your Neph needs to increase your Heparin. After we get a "flash" in each needle line, I flush the lines with saline just prior to giving my husband his Heparin in the venous...I make note of the time and then make sure I don't take any longer than 5 minutes to connect him to the cycler. Any longer and we've ran into clotting issues.