New Graft

[Sugarlump]

 I have had a graft put in my arm last Wednesday as my fistula had started to fail.
First they tell me it can be used within 24 hours.
Then they say let's rest it for a week then use it.
Now they are saying THREE weeks!!!
I have already been in hospital 10 days and only have a temporary groin line in.
We normally dialyse at home and I don't want it to be weeks and weeks before we get back home.
Feeling very unsettled about it all.
Does anybody have experience of a new graft to help me make right decision?

[cassandra]

Hi Sugar, I have no experience with  a graft personally, but according to vascularweb a graft can be used after 2 to 3 weeks. I read somewhere after 6 weeks. I know it sounds awful, it IS awful, but I would either ask for a subclavian line, so you can go home, and do HHD with the subclavian line at home till your graft is usable. Or if subclavian line is not poss I'd put up with the hosp till graft is okay. However much I hate being there.

            


Lots of love, strength, luck, Cas

I

[Sugarlump]

The docs wanted to put another tunnelled line in the same place as my temporary line which carries a big infection risk and I am not prepared to do that.
Waiting for them to come round this morning to discuss it.
Tried to tell me yesterday that was what was going to happen with no prior discussion!!!!
I think not 
The other problem is we live 70 odd miles away from here but our local unit has NO recent graft experience which is going to present a problem

[cassandra]

You mean a tunneled line in your groin?

[Sugarlump]

Yep
And not only is that horrible to live with they are tricky to maintain and high infection risk
Especially exchanging a temporary line for a tunnelled one in same place!
So far no decision has been agreed
Having dialysis at mo with my temporary line
About an hour left!

[noahvale]

^

[Sugarlump]

That second website was really helpful in explaining how the graft sits in your arm
My main concern is in their picture the graft was quite long, allowing for good site rotation.
Mine is quite short. Making the needles fairly close.
And they only seem keen to needle both needles in same direction too.

[cassandra]

                           



I'm so sorry Sugar, I really hope all goes well, lots of love and luck, and strength, Cas

[noahvale]

^

[Sugarlump]

Had second in-centre dialysis yesterday.
Despite my stress, after a difficult last session, it did go better.
Still only one working needle (on a double pump machine) but this nurse did get a second upper needle in but to work she needed to draw the needle out a fair way, and it kept leaking blood around the needle so she chose to remove it. Otherwise a reasonable session, 31 litres of blood processed instead of previous 12!!!! but still way way below what we were achieving at home with original fistula 45-48 litres x4 weekly)
Next week I need to go back to three times a week @ 4 hours a session not good. I did far better at home on my 3hours x 4 at home. Sigh!
Fingers crossed for improvement next week 

[cassandra]

                                       

[JW77]

http://kidney.niddk.nih.gov/kudiseases/pubs/vascularaccess/#sec3

States the 2 to 3 weeks is OK for grafts..

On a similar note there is a Save the Vein campaign on to increase awareness of fistula care, and the need to preserve veins where possible:

https://www.facebook.com/saveyourvein

[Sugarlump]

Have found one nurse at my unit with previous graft needling experience and can get needles in straight away. Trying to mesh my sessions with her her shifts!
Am interested to know why you get more bruising around the graft than you would with ordinary fistula post needling? Particularly underneath the arm, rather than around the needle points?

[kristina]

Hello Sugar,
I do hope you can "mesh your sessions" with the shift of the helpful nurse
and I also hope, that your d-sessions develop in a better way.
I keep my fingers crossed for you and wish you all the best,
Kristina.

[Sugarlump]

My graft is now functioning quite well and hopefully with a little bit of practise we will get home again soon.
Because it is pretty shallow (just under the skin) we are finding we need to use shorter needles to get them to sit correctly but it seems to be working well
and my numbers are coming back up.
Have to go back to Addenbrookes on Tuesday for them to have a look at the upper surgical incision (one corner about an inch long hasn't heeled and is looking a bit yucky, having to dress it daily)
When I have a bath I have to have a one armed bath with my left arm out of water... but it is a wonderful feeling!!! 

[PrimeTimer]

My graft is now functioning quite well and hopefully with a little bit of practise we will get home again soon.
Because it is pretty shallow (just under the skin) we are finding we need to use shorter needles to get them to sit correctly but it seems to be working well
and my numbers are coming back up.
Have to go back to Addenbrookes on Tuesday for them to have a look at the upper surgical incision (one corner about an inch long hasn't heeled and is looking a bit yucky, having to dress it daily)
When I have a bath I have to have a one armed bath with my left arm out of water... but it is a wonderful feeling!!! 

  You sound very relieved to have the new graft working, that's good. Less stress is always best! Kudos on your attitude for getting thru the challenge and for your eagerness to get back to doing it at home again. 

[cassandra]

Yup, well done Sugar, and good luck with the healing of your arm


         



Love to you both, Cas

[Sugarlump]

I am relieved.
I think when things go wrong, it's scary.
All you have between life and death is your arm and the fistula's ability to work. Especially if like me, you are starting to run out of access places.

[cassandra]

I find that the most nerve racking too. The other day my BH in my last accessible vein started spurting blood, I had to make a new one in my tiny bit of fistula that was left. I have to put the long needle in, in a 90' angle. I'm using blunts now, but incredibly painful. I'm scared stiffless I've infected it. 
What than? I hope its just from poking around with the sharps while creating a BH. If the pain is not reduced tomorrow I'll have it checked out, probably.

I'm so glad you're graft is working Sugar, and that you are home.
Again good luck for Tuesday.

Love, Cas

[Sugarlump]

@ Cassandra Do you wake up sometimes and wonder why me?
I worry about infection greatest ... I will never forget how ill that MSSA (after a femoral line insertion) made me. robbing me of two years of my life...
My v needle was leaking a little bit last time ... not enough to take it out but enough to cause me concern. Everytime you puncture a graft you make a hole that doesn't reseal...
Fingers crossed your arm is okay 

[cassandra]

Hi Sugar, thanx, and yes I do, but only sometimes, cos it ruins a whole day. I seriously don't want to think about what has happened to my body, or how many operations, or how much time in hospital, or pain. I suppose that's why I take Diazepam. I don't want to think, or dream, or remember anything like that.
So only rarely I wake up like that 

Take care my darling, lots of love to you and Drew, and stay well, Cas

[PrimeTimer]

Just wanted to say that it always amazes me how much support everyone on here gives each other. For instance, noahvale's posts are always very interesting and helpful and you can really tell that he genuinely wants to be of some help. Hope all of you have a very good day!

[Sugarlump]

Despite having been checked by Addenbrookes as ok and healing, I am having problems with the surgical incision bleeding dramatically when top needle inserted, restricting me to one needle dialysis which is not good.
Feeling a bit disheartened by it all, wanted to be home by Easter. We have switched to 3/4 inch needles too because graft is very shallow.
Sometimes this dialysis stuff is difficult. My confidence is waning, especially as now only clearing 30 odd litres a session and my HB dropping to 8.
I then think is making me depressed.
Really not sure what to do next... 

[kristina]

I am very sorry for the troubles you go through Sugar
and I wonder what your doctors said about this situation?
I keep my fingers crossed and hope you can celebrate Easter at home.
Best wishes from Kristina. 

[cassandra]

Oh dear Sugar, I'm so sorry. Why don't they restitch the incision? And with all this happening, and the underdialysis it's no wonder you are getting depressed. Please ask to see the surgeon, cos this situation is ridiculous.

Wishing you all the strength, and luck, and love in the world, Cas