The story of the sad fistula

           Tomorrow is dialysis day again, and I have to admit I am not looking forward to it. The nurse that was successful for the last two sessions managed to infiltrate it on Tuesday, causing mucho pain and swelling. I at least managed to have the session, but my arm is still sore, making me dread tomorrow.
            The poor nurse that stuck me and went through the side of my vein felt terrible, and kept apologizing for hurting me as she squeezed the heck out of my arm, trying to spread the loose blood around on the inside of my arm. They do that so that I won't have such a large bruise. It hurt like he-DOUBLE HOCKEY STICKS as she did that, but I told her not to worry about it. I tried to lighten the mood by telling her how the surgeon had told me that the nurses at the clinic would be "lining up" to have the honor of sticking me with the dialysis needles.
She rolled her eyes and told me how it wasn't really the case, and that all the other nurses "avoid me like the plague." I thought they all seemed to avoid making eye contact with me when I walked into the dialysis room. I suppose I shouldn't take it personal....
              The doctor has now ordered an angiogram, which I am having on Friday. They  really want to see what my fistula looks like, whether it is deep, shallow, narrow etc. If it is narrow, apparently they will use a balloon to blow out the narrow area, which will hopefully allow more room for needles. It will also let the nurses know where to find the best  area for sticking me. I hope it works, and is over fast. I need a driver, as they will be making me "loopy" while they do the test. This ought to be good..how much more loopier can I get??
              So, I will write again after I am all angiogramed...No one said this dialysis thing would be simple, and with my luck and history, I am not at all surprised things are not going smoothly. But, I am alive and kicking, and will soon be learning how to do this at home with my soon to be assistant Brogan, my daughter. I figure she has given shots to animals, so she should be able to do some mom poking. She probably relishes the chance! Brogan and I doing dialysis on our own, at home. I see a few blogs there for sure!

Swollen and painful

            
         
        
      

I am one of the lucky ones...

    I was going to take pictures at the Dialysis center, but have thought better of it. I should not take pictures of people that are there with me as it would be an invasion of their privacy. I will tell you about it though, the good, bad and ugly.
    I have been there now three times, the first visit was very successful, and things went according to plan. The second time was not a success at all, and I wasn't even able to have a treatment.
     The nurse that went to put the needles in my arm stuck it in way too deep, and there was no flow coming into the plastic tubing. They tried over and over to move it around to find the fistula vein, and kept asking me if it hurt. I said no, not really once the needle was in, but it did hurt more then usual when they inserted it.
     The nurse that put the needles in went off to work on someone else, and the other nurse that was standing with me kept saying "are you sure it doesn't hurt you?" No, I kept saying, it doesn't hurt. Until it did. Then HOLY HECK! OUCH!
     My arm was killing me all the way up into my shoulder. It was so painful I had tears on my cheeks. The second nurse said she was going to pull it and that it must have "infiltrated" my fistula, meaning that the needle went all the way through, and I was going to bruise.
      She took the needle out and grabbed my arm and started squeezing it, which by the way, didn't make it feel any better. She kept apologizing to me, trying to figure out why it wasn't working. She asked again how long ago I had had the fistula surgery, and did the surgeon ever mention me needing a  second one? I said it was 9 months ago now, and NO he never said I would need a second surgery. He actually said it was such a juicy fistula that they would be "lining up for a chance to stick me" at the center when I went. The nurses just shook their heads like,"sure, sure he did."
       I went home and was told to come back the next day and we would try again. I didn't even know you could do that..skip dialysis. I know they didn't like not being able to do it, but I was so bruised and in such pain they figured that it wouldn't work again that day.

Can you say Black and Blue??

       Needless to say, with my arm looking like this picture, I was not particularly eager to go back the very next day, but to my relief they brought out their top "vein sticker" and she slid the needles in like a champ. The dialysis went through like a charm, and all worked good.
         Tomorrow I go back and we do it again, and so it will be forever...or until either I get a kidney or can dialysize at home, which is a goal of mine. I have to find a couple people willing to partner up with me to do it at home, but at least I can be home. The one hour trip over and back adds to the long day for me, and right now we are in good weather. January might be different for sure.
          In my last blog I said I would take pictures of the center, but like I say, that would be infringing on the other patients privacy. I will tell you one of the questions I was asked was whether or not I suffer from depression. I said no, but then went inside the center. The staff tries very hard to keep up the spirits of the people there, but frankly, it is quite depressing.
          While they were sticking that needle in and fishing around, causing a pretty good amount of pain, I will admit I was thinking I hated this newest issue that I have to deal with in my life. I have had many varied illnesses and have not known "good health" my whole life. I have had many painful operations, bone and joint issues, asthma, allergies, blood clots and chronic kidney disease and all that goes along with that.
          Despite that, I have always been pretty good at "seeing the bright side" and "staying positive" and I think that has helped me carry on as long as I have without starting dialysis. I really had never had a "WHY ME?" moment. Until I sat in that chair and they were fishing around in my arm for that fistula. The WHY ME's kicked in , BIG TIME.
          I pondered that for 24 hours, and when I went back the next day, and sat in the chair, I was not in a "happy spot" in my mind. My humor  did improved  once the needle went in smoothly, and that was when I really looked around, and
 had an epiphany of sorts. It is still a depressing place, but I was no longer sorry for myself. I feel bad for the other people that are there. When my arm is unplugged, I can get out of my chair, under my own power, and walk out the door. I can drive back to my house in my car. I can make supper, and enjoy the sight and smell of spring flowers.
           There are SO many others there that can not do that. A lot of the other people sitting in the room with me are showing the ravages of diabetes, with their missing arms and legs. Several can not get up on their own and walk and must be transferred into a wheelchair for the trip back to the nursing home. A couple go out on stretchers.
            The particular moment it really hit me was when one poor soul, who was hooked to her machine in the room with all of us, had to go the bathroom. While they put up a portable,  privacy curtain around her chair, the smell made it obvious what was going on behind it. They took the curtain down later, and she just had to sit there and look at everyone and know that they know what had just occurred. I felt so bad for her. It was I think THE moment I realized that yes, I am indeed LUCKY. Kidney disease is no fun, and I am not happy about having it, but I am a lot more fortunate then most. I just needed to be reminded of that.
    

Dialysis or Bust...

            

Well, it had to happen sometime, and that day was May 29, 2013. Oddly enough, the reason I went to the hospital was not even related to my kidneys..they just got caught up in the fun. Let me explain...
               I was cooking supper when I suddenly felt a small, quick pain in my left hip. I sat down at the kitchen table to see if that would make it go away, but when I stood up to walk, I was unable to even lift my left leg. I was then overwhelmed by excruciating, paralyzing pain. I couldn't walk as I could not lift my own leg. Cliff tried to pick it up by my pant leg to help me move, but it was so painful I could not stand it.
              Cameron, Liam and Cliff helped me drag myself ever so slowly into the living room, arguing with me to go to the hospital. I didn't want to go, and felt that if I could only get to the couch and lay down, that I would be fine. We made it to the couch, but when I got into a sitting position, I was unable to even lay down. Then I realized I didn't even know if I could get back up. I knew that I needed to go to the hospital and it had to be soon.
             With help from 5 people, I managed to get out onto the porch and sat in the computer chair while I pondered trying to get off the porch into the car. Again, everyone said call an ambulance, but I didn't want to do that. I told Cliffy to get the bucket of the tractor and let me sit on that and be lowered to the ground. With me groaning, crying and screaming, they managed to get me back down on terra firma with the bucket of the Mahindra. I ever so slowly made my way into the car, and with one last lurch, got into the passenger seat.
              It was a slow painful trip to the hospital, with every bounce and bump causing me terrible agony. Once I made it into the hospital, I begged for pain killers from a doctor that was probably as old as my eldest child. Of course, when someone comes in requesting painkillers, the hospital personnel want to make sure you just aren't looking for drugs.
So, off to x-ray I went.
             Once I was back from x-ray, the doctor came in with the startling diagnosis of a badly fractured hip, and said I would need surgery for it at another hospital. They gave me lots of pain medicine at that point, and made arrangements for me to go to another hospital by ambulance.
            The GOOD news was this diagnosis made it possible for me to receive lots of blissful pain relief, and I don't really remember much after that visit to x-ray. The BAD news was...they were wrong. I did NOT have a broken hip, but DID have a pocket of fluid in my hip joint that they aspirated out with a needle the next day.
           The rest of the BAD news...My kidney doctor that was assigned to my case said that it was way past time for dialysis to start, and that she believed that the hip fluid was the result of what they call a "brown tumor", something that can happen in patients with chronic kidney disease, and thyroid disorders, which I also have due to my chronic kidney disease. In short, bad kidneys can lead to bad thyroid, which can lead to bad bones..all of which I have. My kidney doctor also said that it has probably played a part in my badly working knees, thumb joints and ankles.
        A bit of good news...bone can regrow once you get the kidneys working, or if you can't get them working, once you start DIALYSIS. Once I heard that, and once I realized all that horrendous, mind blowing pain could happen again, if I didn't start trying to filter my blood, I knew it was time to stop being stubborn, and start trying to get health-ier.
        My first dialysis treatment was two days after I was admitted into the hospital. I woke up dreading it, not because of the painful needles, but because of the fact that my life is now held hostage by the fact that I have to be hooked up to a machine three times a week for 4 hours at a time, in order to live. No more spontaneous outings, or vacations away. No more having my life be on my terms and doing things by my choice. I now have to schedule everything around my dialysis appointments.

My first visit to the ELECTRIC CHAIR

         Every Tuesday, Thursday and Saturday I have to report over at my local dialysis center, which is about 45 minutes from my house. I have to be hooked up and sit there for 4 hours while all my blood flows out of my arm through a tube, and filters over and over through an artificial kidney, which removes all the impurities and toxins that my kidneys would ordinarily take out.

Fistula BEFORE dialysis

          I learned all this from the nurse that did my dialysis at the hospital for the last two days of my stay. He filled me in on all the details and answered the questions that I had. As for the actual dialysis..was it fun? No..the needles are big and hurt going in. The actual dialysis itself doesn't hurt at all. You just have to sit still and not move your arm. After seeing the size of the needles, I knew you probably didn't want to have one poke through the vein, which is a big no-no.

Needles in..left side blood going out, rt "clean" blood going in

My new "best friend" - a fake kidney

         I go tomorrow over to the center for my second appointment, and will write a blog and share pictures after that visit.

Me having fun

         I was released from the hospital after a 4 day stay, and was darn glad to be out. My right arm bore the brunt of all my additional lab tests which were many, as they can not do anything at all to my left arm. No lab work, blood pressure readings or iv's. So my poor right arm took all the abuse and is as colorful as my left arm. Almost.

Bruises two days after the last dialysis treatment

         Tune in next time while I show you around the Dialysis Center, my new home away from home!