You'd think I'd know the symptoms of inadequate treatment by now...

but apparently not!

I had a 70% blockage in my fistula. I got it fixed on Tuesday but I've been feeling sick off and on for a few months now!

It started out with flu symptoms and I didn't think anything of it because hubby's been sick too! Thanksgiving I didn't eat much but again, I didn't think anything because it was my 2nd day without treatment. Then I started losing weight. First it was slowly but it was constant. So, I was sick all through December and just kept thinking (or not thinking) it was just a little cold.

So, fast forward to Monday, January 7th: I went to dialysis as usual and the lady putting me on infiltrated the venous needle. Now she's been working there for a long time. She was there before my last two transplants so she knows my access. But she got it back in the vein and everything was fine. Later that night it did bruise a little but not bad.

Wednesday, January 9th: I went to dialysis and there was new float person there. I had just got done telling her I was one of the "easy" one's there. Arterial needle went in with no problems. When she tried the venous needle it would thread in. So, she called one of the older ladies there over and she also had trouble but managed to get it in. But then she couldn't get the syringe to pull back. Now, at this point I'm still feeling okay and I'm thinking it's from the infiltrate on Monday. The venous needle is pulled and I opt to go back on Thursday. It was lab day and they managed to get everything but the pre & post BUN.

Thursday, January 10th: I went in for my make-up treatment and had the staff member put the venous needle farther up toward my elbow to stay away from the infiltrate site. All went well and they got the BUN.

Friday, January 11th: I woke up unusually early and found that my fistula arm was swelled up really bad. I mean from my hand all the way to my shoulder was swelled up twice its normal size. I called and rescheduled for Saturday, still thinking it was from the infiltrate. By this time I was beginning to have trouble concentrating and remembering things. My blood pressure has also been sky high.

Saturday, January 12th: I went to dialysis in the evening. By now I'm feeling fluid overloaded but I know I haven't been eating much lately. I'm still thinking it's just a cold or flu. I had trouble pulling fluid and I left feeling no better than I did when I started treatment. My arm is swelled up more than it was on Friday.

Sunday, January 13th: Woke up feeling really bad. Arm is now swelled up three times normal and now I'm short of breath! Hubby and I go do some shopping and get some movies. He asks if I wanna go the ER but I decline. I tell him I will if it gets worse. He doesn't know at that point that I'm not sleeping or eating or that I didn't feel better after dialysis the previous day. I finally told hubby that I didn't think I was getting adequate dialysis and that I have been having symptoms. I've been confused and forgetful and short of breath and muscle weakness. All those things we go through when it first starts!

Monday, January 14th: Got up early and called my nephrologist. Left a message abt what's been going on. His nurse calls back and says he wants to see me. I told her that I needed my treatment because I'm overloaded. I get the last appt. of the day spot. Then I call hubby, who has gone to work and tell him. I drive to dialysis and get my treatment coming off 15 min. early so I can meet hubby back at home and we can make it to the appt. He had come home an hour before. We go to the doctor and he looks at my fistula and it still has blood flow so he's not too concerned. My labs were all fine except for my Albumin. My Kt/V is great. I tell him, "I just had dialysis and I don't feel any better! Something is wrong." He tells me that this happens to a lot of people. I say, "This only happens to me when there's a blockage!" He refers me to a vascular access clinic and tells me to call fist thing tomorrow.

Tuesday, January 15th: Hubby stays home and calls the clinic for me. I get in at 1 pm for a fistula gram. My blood pressure is dangerously high. They do the fistula gram anyway, though. They shoot the dye in and see that there is in fact a narrowing. When I look at where it is, everything makes sense. The reason the Kt/V was good was because the needles were on opposite sides of it! That was where it infiltrated and where they had trouble threading the needle in. They also discovered a partial blockage in the same vein up in my chest, probably from all the catheters I've had over the years. I knew abt that one though. The doctor said it may need fixed later. But for now they will just fix the fistula. They do angioplasty twice. The first balloon wasn't large enough so they had to do it again. They wouldn't put me out because I've had trouble waking up before. They gave me pain meds but not enough. I don't think there are enough pain meds in the world to make that pain go away! They are able to open it up and after feeding me and making sure I am okay, they send me home.

Wednesday, January 16th: Hubby stays home with me to take me to dialysis because I'm feeling really sick. Everything goes fine and I get 3 kilos of fluid off. The nutritionist comes to talk to me saying she was concerned because I've lost 20 lbs in two weeks. I tell her what's been going on and that my appetite should improve now. I leave feeling hyperactive but still feel overloaded. Hubby and I go to a local Mexican restaurant.

Thursday, January 17th: Hubby goes back to work and I stay home and rest. Realizing now that the toxins had been building up and making me feel sick for quite some time! They had also been causing my confusion and memory loss and muscle weakness.

Friday, January 18th: Got all the extra fluid off! Feeling better. Not quite back up to par though.

I've had my fistula since 1987. I was 15 and I just turned 36. As far as I know that's extremely unusual. I've only had 4 problems with it! I have always been protective of it, even when I had a transplant! It sure made things easier when my transplants would fail.