SHE LIVES!

      

One of the successful treatments at home

Oh my. I have been a bad, bad, bad blogger. It has been one full year since I last posted on this blog. Yikes. I last posted on the day of my first dialysis treatment at home, and then nothing. People that stumble across that blog that don't personally know me probably think I croaked. Oh that's funny.
Time for a VERY long over due update. Here we go!
         I am writing this post during dialysis but not at home. I am back at the clinic having my treatment Why, you might ask? When we just went through all that training to do it at home? Let me fill you in.
         When I finally had to start dialysis treatments after having had chronic kidney disease for 10 years, the doctor informed me that I could either have the treatments in the clinic or could have them at home, if I knew someone that would be willing to learn how to run the equipment with me. Home dialysis sounded like a dream come true to me. I would be able to stay at home and not have to travel, and most importantly, I could pick which days and what time I wanted to do the treatments. It all sounded so convenient. As it turns out however, it was anything but convenient.
          First came the training. It was a 12 week course, 3 days per week. I could only pick one person to be my nurse, and Brogan volunteered to be "Florence Nightingale". Off we went to Auburn for the many weeks of training. She was a natural, with her experience from sticking animals with needles.
We celebrated the end of training with a Dunkin Donuts breakfast on the last day, and sat back to wait for the supplies to be delivered to the house.
          And delivered, they were. When you are in training, the instructors warn you to expect a large delivery of supplies, but you can't be prepared for the sight of the loaded pallets being delivered to your home. There were boxes, and boxes. And boxes. From the needles, cotton swabs, gloves and scales to the gallons and gallons of bleach, and dialysis fluids. I had assured them I had PLENTY of room for everything. When we were done unloading, there was dialysis stuff everywhere. Boxes were stacked in halls, closets, the kids bedrooms, the bathroom. We took out the kitchen table and used boxes. Well, not really but we could have! Medical supplies were everyplace.
          Then came the separate delivery of the actual dialysis machine and the even larger water treatment machine. Oh, and the large dialysis chair. One large chunk of my living room now housed those three pieces of medical equipment. However, it still seemed worth it. I would be able to pick my time and choose my days..this was gonna be great!
           We were headed into winter, and I was so glad not to have to commute in bad weather to go to the clinic. We started our first week, and it went great. Really great. We were on our way! The next week was when it started.
          "It" was a perpetual laundry list of problems with the equipment. The machine would fail the  tests that it must pass before being able to be used. The dialysis machine they brought us was the same machine we had used in the clinic, and while we were in training, there were three different occasions where that machine didn't work correctly and we had to use a different machine. Once we were at home however, there was no other machine to use.
         We had one failed test after another, and put in so many calls to the technicians and on call nurses that they started to expect a call from us daily. We heard things like.." I've never seen this before", and "I've been working on dialysis equipment for 25 years and have never had to replace that part before." Oh, and one of my personal favorites.."Huh. Never seen that particular warning message before."
          It got so it seemed like dialysis was now a seven day a week issue. Either we were successfully completing a treatment, trying to do a treatment but not being able to do it due to mechanical issues, were putting away another delivery of supplies, were doing water testing which had to be done on non treatment days, or were waiting for the technician to come fix something. Plus, we had labs to do once a week, and it never failed but we had a snow storm on lab days. Brogan would have to drive the sample to Portland as Fed Ex would cancel pick ups in bad weather. Blah.
         The last straw came 6 months later when we had some weird malfunction message that we had never seen before, and it locked down the machine so we couldn't use it. We turned it off and waited for the tech guy to come yet again. He came the next day and turned it on. It was fine. Ran all the pre-tests and looked ready to go. We were like NO WAY. He looked at us like I think he thought WE were purposely messing with it to get that good looking guy out here to the farm. We told him to try and continue on with it and thankfully, it did fail with the exact weird message we had seen earlier. Phew! He then went all through it, calibrating and testing and finally pronounced it ready to go. He asked if we wanted him to turn it off, and we said "for the love of God, NO! DO NOT turn that thing off..we will do dialysis in an hour or so."
          He left and went on his merry way. An hour or so later, I sat in the chair, Brogan hit the button and BLAMMO. There was the same malfunction message that he had just spent the last 4 hours fixing. I poured myself a drink and called the technician. I'm not sure he really believed me, but basically gave me the devil for not going in and IMMEDIATELY using the machine. Really??  So much for convenience.
          I called the center and said.." Well, call me a bad penny, but I'm coming back! Come get allll this stuff please." And that is exactly what they did. Boxes of needles, gone. Gallons of dialysis fluids, gone. That jinxed equipment, gone and most likely wrecking havoc in some other poor souls home. My house looks normal again, and although I am driving the 40 minutes again, I don't mind.
         I don't think for one second that I am the only one happy. My daughter was really beginning to think we were getting a "sign" that we were NOT supposed to continue doing this at home and that something bad was going to happen if we kept at it. The technicians were positively giddy when I saw them at the clinic on my first day back.
         So, that is the story of my home dialysis attempt. I know there are many people that are doing at home and having great success, and I am glad that they have that opportunity. For me, I am glad to walk in, sit down and walk out all done in 4 hours. No mess, no hassle. If only I could bring my fat little friend with me....

Miss Molly loved to lay on my lap during D..

Let the "fun" begin!

      

HOME AT LAST!

After 8 weeks of training, we are now home doing our dialysis. Brogan has been a good nurse, but I have been a bad patient.  Actually, the first time we tried it, the machine was not cooperative, and we had a hard time getting treatment underway. The second time we did it, I had MASSIVE cramps..holy smoke!
       Besides filtering out toxins from your blood, the dialysis machine also takes fluid out of your blood.When the excess fluid is gone from the blood, it will also take fluid out your tissues where it can gather, like your ankles, legs, even face.
When you have no more fluid to "give", that is when the cramps can start in, and man, they are painful. I went through a good 10 minutes of pure hell, as Brogan tried to relieve my cramps.

Nurse Brogan holding my "kidney"

        First, she cut back the "goal" which is the amount of fluid you want to lose, based on your daily weight. That didn't help, so then she stopped taking off fluid, and just kept cleaning the blood of toxins, which is accomplished by a mere button push. I was STILL hollering bloody murder, so she finally had to give me saline fluid to replace the fluid I just had taken off with the machine. I hate having to get fluid, when I am trying to LOSE fluid, but it is the only way to relieve the darn cramps. I ended up having 7 pounds of fluid taken off, and then almost another pound put back on via saline fluid. Bummer.

saline aka cramp reliever

       The third time was a total ABORT MISSION. We got all set up and ready to go. The needles went in smoothly and with no pain, (well, not really). Brogan turned on the machine, and my venous line pressure,  which is where the blood goes back into my body after being cleaned, started to go up very high. It is supposed to run around 180-200, and it went up to 300, and then shot up to 500, alarms blaring.
        She hit the MUTE button, and untaped the venous line. As she gingerly tried to reset it, while constantly watching the numbers, it was alarming over and over, and then suddenly, it started to bleed down my arm from around the needle, which needless to say, is not a good sign. The pressure reading was way high, and since I was bleeding, we said (frankly) screw this, we will try it tomorrow.

One down, one to go

        We took out the needles, and I decided not to take my blood thinner, which I think was the cause of the blood leakage. I think my levels are a bit high, a constant issue as anyone on blood thinner will tell you.

Mission accomplished at last!

       So we tried it again last night, and although I still had some cramps, we got a full treatment in, relatively easily for once. I suspect it will get easier as we go, and am looking forward to that!

One more week!

   The last week of home dialysis training is here at last! Brogan and I have been traveling every other day for 8 weeks to learn how to dialysis at home. We are down to our last week of travel, and then we will start doing the treatments at home.
I didn't think we would ever finish, but one week from tomorrow we start doing treatments at home. It will certainly give new meaning to  the term "needle work".

Someone looking a little TOO eager to stick me

   
     We have made great progress in learning all the ins and outs of doing home dialysis, and have had a few laughs doing it. The nurse training us, Cindy, has enjoyed teaching us I think. We have been an "unusual" pair, that is for sure. I do believe she is planning on coming to visit us with a bottle of champagne in hand..and treats for the horses and pot bellied pigs.

Tools of the trade

The correct terminology is BIG HONKING NEEDLE

     We have mastered the machinery, the dialysis machine as well as the water machine, which also will be adorning my living room. The water machine purifies the water, which is mixed with an "acid" and "bicarbonate" which then runs through the artificial kidney, and that mixture is what "cleans" my blood before it is sent back into my veins.

Feeling the fistula to find a "good spot"

     Once I am "cannulated", or in lay mans terms..stuck with two needles, I am then hooked up to the machine. My  treatment takes 4 hours, and then I am done for another day.

To quote my youngest.."BIG OW!"

Note close proximity of boob to lines..Boob is chief antagonist in setting off alarms..If you are doing dialysis, and are a female, be advised to keep boob OFF THE LINES..Alarms WILL SOUND if boob gets caught in tubing.

     

Hooked to machine..let the treatment begin! (It is, indeed the longest 4 hours of my day.)

        Tune in next week for photos from our first home session. I expect dogs and cats, and maybe a pot bellied pig to be in the fray. They can not send home TOO much disinfectant!  See ya in a week!

Days of Dialysis

   Hello Boys and Girls! Welcome to another episode of Days of Dialysis. We are glad you are here...

   Today's word is INFILTRATION. Does anyone know what that means? INFILTRATION occurs when the dialysis needle "infiltrates," or pokes through the fistula, causing much pain and bruising. It is especially annoying when it happens with BOTH needles, at the same time.

   Let's all sing the INFILTRATION song, shall we? Ready boys and girls? To the tune of "Rubber Ducky"....HIT IT!

          Infiltration is the one,
          that makes dialysis not much fun
          infiltration I'm not awfully fond of you....
          poo poopee do

         Double infiltration is the worst,
         when both needles poke through it makes me curse,
         double infiltration I am surely not fond of you..
         poo poopee do

         Bruises and swelling is what you get,
         those darn needles can make a mess,
         that dialysis really did stink today,
         oh yes it did!

         Back to dialysis again tomorrow,
         let's hope it isn't filled with sorrow,
         I plan on drinking no matter what happens there,
         oh yes I do!

          Tune in next week boys and girls, for another fun filled episode of Days of our Dialysis!

The Next Phase: Home Dialysis

   

Well, anyone that knows me knows that I am a stubborn ole gal, and once I make up my mind to do something, I will do it, even if it kills me. This time, it just might. What am I doing that is so reckless and abandon?? And dare I say, dangerous??
Am I hang gliding over the Grand Canyon? Or becoming a "wing walker" in my spare time? Learning how to wrestle alligators in the deep south? Perhaps becoming a traveling rattlesnake kissing pastor of a small southern church? (not likely, just saw that on television lately and it kind of stuck with me..) No, no nothing like that at all.
       What I am doing, is learning to do dialysis at home, accompanied by my trusty (I hope..) side kick, my daughter Brogan. Actually, SHE is learning how to do it, I play games on my computer (when I am not nervously watching to make sure she is paying close attention to the instructor.)
        We have decided to try and learn how to do this at home, as it is a long drive (an hour each way) and with winter coming, I was not looking forward to having to make that trip, snow storm or no snow storm. I will still have to dialysize three times a week, for four hours at a time but will be able to do so in the comfort of my own home.

         I am using the word "comfort" very lightly, as there are still needles involved whether I am at the clinic, or in my living room, which is where we are planning on taking on this endeavor. I WON"T however, have the long tiring drive after I am done with my treatment, and can still keep an "eye" on things here even while I am hooked to the dialysis machine. I am indeed the ultimate multi-tasker. I am sure I can at least fold laundry while I sit there and get my blood filtered. These jobs must be done!

The two large pieces of machinery soon to grace my house

           SO, luckily for me, (I say perhaps very tongue in cheek-ly) I have a daughter that has agreed to go with me and become, dare I put it down in writing....my personal care attendant. I am only 50 for goodness sake!!! I shouldn't need anyone for as much as a hair combing for 20 plus years!! But alas, here we are..learning how to keep me alive, via big ole hunks of machinery, one of which reminds me of scuba tanks. NICE! Nothing says country charm like big equipment in the living room. I am thinking perhaps a doily would help...but I have never found a doily that is large enough. I guess I will have to go with a brightly colored afghan. Sure. That will be inconspicuous. No one will ever know....

           Wednesday of last week was our first day of training, and by the second day, the nurse that is instructing us had Brogan sticking needles into a fake arm, and keeping records already. Monday is our third day, and she has already lined her up to stick me. Yes, you read that right. Third day=stick her mother with large needles.

Photo taken from my helpless position in chair.."You will talk...."

           What did I think about that? A couple song fragments filtered through my mind as the nurse was suggesting that Brogan was indeed ready to attempt the STICK. First...was "Monday, monday..la la la la la la
Can't trust that day..la la la la la la..." followed closely by a U2 song I changed up a bit..."Monday bloody Mondayyyyyyy!!!"
Yes, I am looking forward to this with great apprehension..I mean aggravation! No!! NO! APPRECIATION! Yes that's it!

Nurse Ratchett..I mean Nurse Brogan

Feeling for the vein of the fake arm

           Suddenly, the sun seems brighter..the sky seems bluer..the air is more crisp..clean..or maybe I just feel more ALIVE! Savoring every moment, cause you never know when it will all end!! End?? What??...nooooo, I'm not nervous, I keep telling myself. She has given many shots to the horses, I tell everyone..She is an old pro at needles, and besides..I only saw a little simulated blood running down the dummy arm..I am sure I can live without the pint or so that ran down the arm and onto the floor. Jeez...people have like 8 pints or so right?? I'm sure I don't need every drop!

Keeping track of my vitals

            What I am worried about is the BEEFER, stumbling through the living room, falling over the plastic tubes and yanking needles from my arm, thereby spray painting the living room a nice bright red color..She is a notoriously clumsy cat, and loves to hang around where she finds me. I may have to put the BEEFER in lock down while I am all "DIALYSIS WOMAN"!

I yelled "OUCH!!" when she stuck the needle in 'cause I'm a lot of fun like that...

           I think that is my new name.."DIALYSIS WOMAN". I am a SUPERHERO, able to leap tall...umm..maybe not leap..been quite a while since I have been able to leap over as much as a crack in the floor. Let's see...I am DIALYSIS WOMAN..able to write grammatically incorrect ramblings and have people from all over the world read them, because they aren't particularly busy..at that moment. Yeah, that will work.

I call this her "the fake arm only lost a little blood, but if you don't stop your whining..." look...

          Tune in next week when DIALYSIS WOMAN is attacked by her "personal caregiver daughter" with large painful needles. Will she be able to withstand the charge? Will there be an infiltration??? (infiltration = big ouchy) Will caregiver daughter tell DIALYSIS WOMAN to stop being such a baby and quit complaining??Most likely...TUNE IN!

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.