He’s Home! (Again)

Finally!  It’s been a very stressful few days. The doctors had been saying that Chuck could be in the hospital as long as a couple of weeks, then it was one week more. Then, on Monday (3/5) Chuck called me and asked me if I could come into the hospital within the next couple of hours. I had planned on spending the morning paying bills and catching up on emails and going later in the afternoon. Inexplicably, “they” decided to release Chuck that afternoon pending my satisfactory intensive training on manual dialysis. Talk about pressure.

I knew how much Chuck wanted to go home and I wanted him to come home. However, this abrupt shift in plans really threw me off. I met with Joyce in the dialysis clinic for a crash course.  She gave me what she called the “Baxter Bible” which is a fold-out set of step-by-step instructions for performing manual dialysis. In addition, she had me annotate it with more important information and useful tips.

After she demonstrated, it was my turn, using “P-Dy”.  I had been joking that dialysis is not rocket science,  but it does require being very, very careful.  Fortunately, I had job as a laboratory technician many years ago preparing glassware for water analysis down to the parts-per-billion level.  If I screwed up, the whole run of analyses would have to be done again. Good lab techniques were forcibly imprinted on me by a shrill harpy of a post-doc that ran the lab who screamed at me for accidently touching the lip of a beaker.

I went through hooking “P-Dy” up twice.  I remembered what Joyce said about how she had to fight the VA to get this training mannequin from Baxter.  I can’t imagine trying to learn this process using an apron with a tube running through a grommet to a plastic bag.  The person or department with whom Joyce had to fight to get this most primitive of training tools should have to train to take care of a loved one using the apron with the tube and grommet. She also said she had to fight to get the VA to approve the $600 titanium connector on the end of the PD catheters. Titanium never breaks and is “for life”. The VA wanted to use cheaper plastic connectors, meaning, if the connector stripped out or broke, the entire catheter would have to be pulled and a new one surgically implanted. That’s classic VA economic policy: spend $10 later to save a penny today.

Joyce is an outstanding teacher, absolutely outstanding.  Thorough, patient and very clear in her explanations, she provides little tips  that I won’t really understand or appreciate until my first nervous solo session. We go through the process several times and, when I complete it on my own with no assistance from Joyce she cheers like I pulled grandma from a burning house. One of the nurses in the hemodialysis clinic even gets in on the cheering.

And, just like that, Chuck is released.

Joyce tells us it will be two weeks before we get the cycler for use at night. I had just read the night before on Baxter’s website that they could deliver in five days. When I asked Joyce why so long, if it was a VA hang-up, she said, no, that it was just how long it took to get the machine from Baxter. I just do NOT get why they could not have ordered the machine within a few days of Chuck’s surgery to insure it would be ready for us when we were ready for it. Joyce kept saying that they haven’t had a case like this before, where the catheter had to be used so soon after surgery. So, basically, the VA screws up, lets Chuck get so sick that his catheter has to be used way before anyone feels comfortable with the situation. Then, even knowing that he’s going to be using the catheter early, the machine is still not ordered.  Plus, no supplies were ordered.  Joyce doesn’t point the finger at anyone else but this smells very much like pure bureaucratic bungling and I have a feeling she’s been trying to get this sorted out for days and has run into roadblocks. It’s like the VA expects the vet to die and don’t want to have any “extra” or un-used supplies or equipment on the books.  When the vet actually lives, then there is the scramble to get things ordered.

On Chuck’s discharge Joyce instructs me to drive to the front of the hospital. A few minutes later she arrives with a cart loaded with bags of dialysate and other supplies which she loads in the back of my truck.  She hands me the paperwork for keeping track of each dialysis session. A few minutes later Chuck appears and we’re on our way home.

The first session is pretty scary. Chuck says I don’t seem very confident.  It’s not that I’m not confident, it’s that I want to be so very, very careful and go slowly so as to not make any mistakes.

I follow the step-by-step procedure from “the bible” repeating each word out load and double checking to make sure I’m doing everything right. I realize the most important part is the part I already know: good lab techniques.

So, we get through it.  The second session I’m very concerned because it doesn’t seem like Chuck is draining right.  It looks completely different from the way the “P-Dy” drained. I remember the little tips that Joyce had showed me but Chuck looked nothing like the draining mannequin. Still, I bumbled through it and now that I’ve been doing it for two days, I’m feeling much more comfortable with it.

What stuns me is how much time manual dialysis takes up. We are on a 8:00 a.m, 12:00 p.m., 4:00 p.m. , 8:00 p.m. schedule.  Even though it is every four hours, each session takes at least an hour because Chuck drains so slowly, so it seems like no sooner have we finished one session then it’s time to start again. It reminds me a lot of breastfeeding.

I know that initially, couples start out with the manual in order to make sure they know how to do it in case of power failure or some other problem.

But. We. Get. It. Now.

We’re ready for a machine.  The word is we’re supposed to get more supplies via UPS tomorrow and the machine comes next week.

So, this is the next step in our new life…finally.  After all the complications, the false start.  Chuck is home and on dialysis. What a journey it’s been.  When I see the stuff that’s pulled out of him in the drain bag I feel so grateful that he is no longer being poisoned.




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One Response to He’s Home! (Again)

  1. Mari Gossett says:

    HOORAY!!! I am SO glad that you guys are finally home. Sorry you have had such a rough time with the VA, and training, and getting a machine. Trust me, once you get the Cycler, it will be much better!!! No doubt in my mind you will do fantastic. Don’t be hard on yourself about going slow and taking your time, following all the steps! Confidence comes with DOING. You will look back on this in just a short time (when you are doing it with your eyes closed), and you will say “OH YAH…NO PROBLEM! I GOT THIS!”. (And it sounds like you already do!)
    When I first started on PD, my nurse actually called me and we walked through everything step by step on the phone!!
    I’ve never done CAPD, or manual exchanges. CCPD (cycler) fits best with my lifestyle. Doing my treatment at night while I’m sleeping let’s me live a “normal” lifestyle daily!
    Keep up the good work!
    Keep the Faith!

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