I just wanna give up

[sullidog]

So I saw my v surgeon today about my clotted access, mind you we only used it for only two weeks before it clotted again, he asked me "What do you want to do?" I said I either want a new access or continue using a catheter, he looked at my veins again and said well the way things look you don't have many options so because you are young I'd like to clean out your graft again before the clot gets hard and I can't get it, and he scheduled me for Friday with the angiojet, because he wants them to use it right away because his policy on a thrombectomy that he wants the graft to heal because of the tissues, so it can't  be used right away. and I hate hate hate angiojet, the reason I hate it is because it makes me short of breath, and from what I understand that is a common side affect of using the angiojet. It really makes me feel like I'm sufficating! Anyone know how to make it more confortable for me? If so I'd like to know.
I'm just tired of being cut on, why can't these doctors just leave me alone, they don't even think about how much many a patient puts into things all they care about is making money, well what if I don't pay him, then I don't have to have surgery right? I'm thinking about refusing the procedure, anyone know what would happen if I do? I just wanna use my catheter for right now. I know about the infection, I know the risks just leave me the hell alone doctors and let me do my own thing. This has gotten me so depressed I don't know what to do. He also started me on plavix to see if that will keep it unclotted longer, I really dout it.
Yep so I think I'll just be uncompliant and refuse that surgery and if they don't like it well that's just tough. It's my body and I'll do what I want. Stuff like this just makes me wanna stop d altogether.

[willowtreewren]

I don't know what to say....

You still have your catheter, don't you? A big problem with NOT going through the procedure on Friday is that it will probably destroy your graft.

 

But, Sullidog, it really is up to you. 

I'll be thinking of you.

Aleta

[MooseMom]

Talk about being stuck between a rock and a hard place!

I don't know enough about angiojets or grafts to offer any advice, but I will say that no one can make you undergo any procedure.

But I do agree that most doctors probably lose sight of the toll these procedures take on a patient.

Can you use your catheter for a while so that the Plavix can have time to work?  Give you some time to think...

[sullidog]

The issue is there's not much thinking time as like mentioned the graft will be history, and my left arm is unusable because my former surgeon totally screwed it up. So I guess I gotta decide do I wanna keep this graft or let it die.

[MooseMom]

The issue is there's not much thinking time as like mentioned the graft will be history, and my left arm is unusable because my former surgeon totally screwed it up. So I guess I gotta decide do I wanna keep this graft or let it die.

Oh, I see.  I'm sorry; I misunderstood.

Can you tell me more about an angiojet?  I've never heard of that.

[sullidog]

it's basically a fistulagram but the clot is desolved with drugs during the fistulagram.

[Traveller1947]

sullidog, please don't give up and don't burn your bridges behind you either!  If your graft becomes unusable, you'll have nothing to dialyze with down the road.  Your Permacath won't last forever either.  Speaking as one who has had many problems clotting over the years, I have never found anything that makes the declotting procedures easier, except the knowledge that my graft will be usable again.  The shortness of breath you wrote about is the worst, even with the nasal oxygen they give routinely.  I have not taken Plavix, but do use an older medicine, dipyridamole 75mg. three times a day.  I've had less clotting since then.  Maybe you should give the Plavix a try...Wishing you all the best.

[ToddB0130]

I'm so sorry --- this is terrible for you and like everyone else,  you've been through so much already.  Can you talk to someone about your fears and try to work through them before the procedure ?  I know it's a procedure you really hate,  but is it possible to try to get to a perspective that it is ONE more procedure.   I'm sure you'd much rather use your catheter,  but it might be best to have both options at your young age.  Please speak with someone for additional support .... and find out from the doctor the very latest you can have the procedure.  If you need a few days to get your head together about it, then take them.  I'm thinking of you and wishing you the best.

[Whamo]

I totally get what you're feeling.  I get a fistulagram today.  I had a similar procedure done, shooting dye into the blood, and it hurt like hell.  It hurt my kidney, too, back a few years ago.  One old lady was on deck for the same procedure, saw what I went through, and refused to go through with it.  That kind of thing is hard to forget.  It's like these doctors see us as toys to play with sometimes.  And you know, it never ends, one surgery leads to another, and another.  That's the thing I hate the most.

[sullidog]

One of the things I also experience after these procedures is a bit of chest pain which they don't give me anything for.

[lmunchkin]

Sully, I know after a few days, the plavix worked on J.  If after a week its still clotting, then try something else!  DO NOT GIVE UP!  I can only imagine the frustration you feel.  But please, do not let this damn thing get the best of you!  I know, I don't have this disease, but I know frustration! 

Just please, keep trying everything you can!  But whatever you decide, I will totally understand, cause this Crap is not easy, EVER!  We just make it what we can! 

Please Sully, hang in there and fight!  We all need you!

Praying for you,
lmunchkin
 

[cassandra]

Hi Sully, its a while later now so I hope you did have the angio-jet done, and that it worked. I am sorry that I read your thread so late, cos I could have told you that the last 'jet' I had, I took Diazepam (for the relaxation  ) and the surgeon put morphine strait in the fistula during the procedure. Was ok.

[sullidog]

it gave me a migrane which won't go away and all they are giving me for it is perkasit which works, but only temperarly, isn't there a migrane medicine they should be giving me other then pain pills?

[cassandra]

O Sully, I'm sorry to hear about the migraine. My MIL suffers from that,and gets codeine kind of meds. She's in bed all the time, so I don't see that as an improvement either. But your graft is working?

[Hazmat35]

I had the same issue.  Had a Fistula put in, then when I started Dialysis, it kept getting clotted.  I had to go back and have two ANGIO's.  The doctor started me on PLAVIX and after that I haven't had any issues.  once in a great while, they hit a clot, but that is usual.  You can't get away from them 100 percent, that is just how the body works. 

The Catheter would be much easier to use, but you risk infection so much more.