problems after problems

[russ9320]

I started dialysis in June. Started home hemo in November. Everything was going fine except I couldn't get button holes started. Well that changed about 3 weeks ago. I only had problems with the venous. I kept pulling clots. I was sent to the doctor to have my fistula looked at. He said he fixed it and I went to in center. There 3 different people pulled clots. Now I have a cvc in. When training at the center I started clotting. So now i have to use the fistula for arterial and the cvc for venous. It has been a week since a full treatment. I'm tired of all of this and i am really thinking about quitting dialysis so I can stop living in misery.

[obsidianom]

If you have a cathter in why havent you had a full treatment?
What did the doctor do to "fix"the fistula and what was wrong with it? 
You can "wet stick" the fistula to reduce clotting issues IF the fistula is ok. When was the original surgery for the fistula? How big and where is it?
There are ways around this if you calm down a bit and work with it. Giving up means probable death . So lets try to fix it.

[russ9320]

Clotting... it is all due to clotting. I finally got a full treatment in today. Had to use the fistula for arterial and the arterial side of the catheter for venous. I had done wet sticks on the venous and still pulled up clots. My doctor balloned a narrowing to clear out the clots but that didn't work. Fistula is in left forearm and put in April. They had to up me heparin to 8000 units.

[obsidianom]

Are you clotting in the catheter also? If not why not just use the catheter for now until this is staightened out.
I would suggest going back to the surgeon who created the fistula for help as the literature shows better results with surgical intervention then just baloon and -or stents for issues. Perhaps you need a widening of the fistula that can be done with a patch of vein added . The surgeon can do that. My wife  had that done and it really widened her fistula by more than double the original size.
Did you ever have your blood tested your clotting irregularities ?  You may have an over active clotting system or too many platelets. Ask your nephrologist about that.
Hang in there.

[Angiepkd]

Please hang in there Russ! I have been doing home hemo for almost a year and have had more fistula revisions than I can count. Most recently, I had a clot that required a surgical revision and ended with me having a graft and a lovely neck catheter. After returning to training to learn how to use the ladder method for a week, I was sent home feeling somewhat confident. First treatment, no problems. Second treatment, extremely high pressures and many alarms. Had to use the cath. Again and again this scenario played out. Right now I am using the catheter. I am extremely fortunate in that I am scheduled for transplant in 2+ weeks. So there is a light at the end of this tunnel. I have had my ups and my downs, but never gave up. Finally, it's seems like all of this will be worth it. Although I don't know the details of your situation, I do know that things can change quickly for the better. Don't give up until you have given your docs a chance to fix things. There is almost always a solution, but it may take some time to get there. Best of luck to you!

[russ9320]

I am going to the surgeon tomorrow. The venous side of the catheter is always high. I have pulled clots out everytime I clear it before treatment and that is with a heparin flush. I am just tired of everything. I went through 6 months of cytoxan for this and all it did was make me infertile. Where does it end? My neck is in constant pain.

[obsidianom]

If the venous side is always high perhaps you have a stenosis somewhere up the line even in your chest. That could explain the clots as it slows down flow . If the surgeon can fix that you should be in good shape.
Do you have an auto immune disease like Lupus or another ?

[russ9320]

I do have an autoimmune disease.  Not lupus but iga also called berger's dise. ase. I am waiting at the surgeon's now

[obsidianom]

Good luck there.
With IgA nephropathy you can have elevated platelets, so that is another possible cause of clotting. I assume you are checked regularly but have your platelets been elevated? Are you male or female? (i assumed male with your name but that could be wrong of course).
Let us know what the surgeon says.

[cattlekid]

Hello Russ,

Unfortunately, I don't have any advice to give you on the clotting, but I did want to give you a friendly wave    as I also have IgA nepropathy.  I was diagnosed in the year 2000, started dialysis in 2011 and received a deceased donor transplant this past April. 

I do have an autoimmune disease.  Not lupus but iga also called berger's dise. ase. I am waiting at the surgeon's now

[russ9320]

Well the surgeon is going to tie off a branch on my fistula. My fistula breaks into two in the middle of my forearm and comes back together in my upper arm. He said that will make it mature like my lower arm. That is scheduled for Feb 12th. I've never had my blood check for clotting until yesterday. Well I did in 01 when they thought my condition was a hemotology problem( due to large amounts of blood in urine and good kidney function). Haven't heard back on the labs... will keep you guys posted.

[russ9320]

Are you male or female? (i assumed male with your name but that could be wrong of course).

yes I am male. Russell is my last name though. But what does being male have to do with it??

[obsidianom]

Just interested. Its nice to know something about people here.

[russ9320]

Sounds good... so far had 3 full treatments using Cath and fistula. Just a pain to set up.

[obsidianom]

Why not just use the catheter alone. It would be easier. Letting the catheter alone until the surgery may be the best answer. That is what we did when my wife needed a revision .

[russ9320]

2 reasons. The venous side keeps running high and blood from my catheter seems to clot too easily. This is the only way I can run. The great thing is 0% chance of recirculation of clean blood through the machine.

[obsidianom]

If your catheter is clotting easily then it will be very interesting to see what your blood tests show on clotting. It sounds like a clot issue in your blood chemistry and may need to be addressed.

[russ9320]

I haven't heard anything about my blood work yet. I'm going to my nerphrologists office tomorrow to ask why. Also my neck is in constant pain from the cvc that was put in a week ago.

[russ93201]

To anyone who still looks at this tread...
I had surgery on my arm a couple of weeks ago and have had no problems except for a slight rash on my arm. I still haven't set up buttonholes yet but maybe next month

[obsidianom]

What exactly was done during the surgery? Did the surgeon find anything unusual?

[Jean]

Happy to hear your problem is solved!!