After waking up Monday morning (and saying “good-bye” to Sassy Outwater, who spent the night with me), I started acquiring paperwork.
Lots and lots of paperwork.
“Transplantation: What Do I Need to Know?”
From the Transplant Center. Because I wasn’t expecting to get a kidney for another several years, I hadn’t seen it before. The first six pages were all about “preparing for transplant” (which I mostly ignored). The rest of the book covers everything I should need to know following the transplant, although the one major question I had (“when can I take a shower?”) wasn’t addressed.
My biggest issue with the book was that it was written by medical professionals…for medical professionals. Yes, it has information patients need, but it’s not organized in a way that makes it easy for patients to understand. There’s a lot of repetition, and the three important checklists (how to know if you have an infection, how to tell if your body is rejecting the kidney, and when to call the transplant clinic) are in different areas.
From the nurses. (It’s not really a card, it’s two pieces of letter-sized paper with fill-in-the-cells tables.) Again, it’s a form created by medical professionals for medical professionals. This card lists all my drugs, organized by why I take them. The lifelong drugs have been typed in, but the dosages columns were left blank. (And they use pencil when filling them in because they will change frequently for awhile.)While I was in the hospital, every nurse was really good at opening my drugs and explaining why I was taking it and what the dosage was. And in the hospital, that was fine. But when I got home, what I really wanted was a chart organized by when I was supposed to take the different drugs. It took me a day to get my cupboard organized (by time, of course) so that I could stop skipping around.
Yet when I pointed this out to different people, they all had the same comment: It’s more important to know why you’re taking the drugs in case you decide to skip them. First, I’m not allowed to skip them (and if I’m thinking about skipping a dose, I have many more problems than understanding why I’m taking a specific drug). But secondly, why wouldn’t they want to make the process as easy as possible for patients when they get home? It’s much easier to go “here are my morning pills” than “where are my morning pills”. They’d already covered the “do not ever skip a dose” mantra three times a day (when I got my pills) and during education sessions. (And yes, I know that some people need more help than others, especially those who haven’t been sick for a long time. But those are the folks who could most benefit from a better-organized system.)They could also suggest how to organize the bottles to make the drugs easier to find. From right to left, my pills are night-only, night and day, and day only. (Bedtime drugs are on a separate shelf). I can just work my way through the bottles depending on what time it is.
“A Guide to Taking Warfarin”
From the Anti-coagulation Management Service. This book was very nicely done, both in publishing and in content. They also provided me with a form I need when I go to their education session and a cover letter about their services.
New England Organ Bank Information
A nicely-formatted packet about communicating with the donor family and volunteering.
Social Security Information
As an end-stage renal disease patient (ESRD), I am eligible for Medicare. They gave me a form with information on my local Social Security office, my copy of my registration form, and a fact sheet on applying for Social Security. (I applied while I was still in the hospital at the Social Security website.)
“Healthy Eating for Organ Transplant Recipients”
From my nutritionist. Given my former eating habits, this should be a breeze.
“Post Hospital Patient Care Plan”
Basically, my instructions for what to do when I get home. This form mostly repeated everything they already told me, but I had to sign a copy for their records.
This is different from my Medication Card. This printout listed every drug listed in my patient record, including those I’d stopped taking and those I had just started taking.
Information on self-injecting a drug to thin my blood. I had to give myself those injections until the Coumadin kicked in.
In addition, my awesome new health insurance plan has assigned me a case manager for a year, so I got all the paperwork associated with that.
Meanwhile, awesome new health insurance company has started sending me statements associated with the surgery. At this time, no cost is listed because they’re waiting for Medicare to kick in.
So…if you go in the hospital for a transplant, expect lots of paperwork (And because you won’t be allowed to lift more than 10 pounds for two months, give it all to someone else to carry.)