The "Transplant Bible" (Post-Organ-Transplant Manuals)
The first time I had ever heard of such a thing as a post-transplant manual was during my "pre-liver transplant education." The "education" was a two-hour class which was scheduled for me as part of the program of the weeklong battery of tests and procedures required to get listed for a transplant. The day I attended the class had a very small student body. There were only four of us in attendance, and as the pre-transplant nurse coordinator, our teacher, remarked that none of us would be there if we didn't have Stage 4, or End-Stage Liver Disease (ESLD). To be sure, it was a grim reminder of what might be to come, but I was glad to have a chance to learn all about getting a transplant and to ask questions of someone "in the know."
The manual, full of instructions for life post-transplant, was referred to as the "Transplant Bible." "Liver Bible" might be a more exact in our case. We were told that one would be given to us after our transplant, whenever that day was to come. I didn't ask why we couldn't get a copy then; I just assumed it might eventually be customized to our individual needs.
As it turned out, it wasn't customized at all. It just showed up one day after I had been transferred from intensive care to the Organ Transplant Unit (OTU). It seemed things were always just showing up in my room in the OTU when I wasn't looking. ;-)
When one visits the Surgical Outpatient Clinic (SOPA) in the months just after a transplant, one can often identify the newest transplant recipients as it serves as a place to keep notes on blood pressure, weight, and other vitals. I turn to it every now and then to review what I should be doing post-transplant.
Indiana University has posted four such manuals online, one each for liver-kidney, kidney, kidney-pancreas, and intestine transplants. Half-hour videos which correspond to each of the manuals can also be viewed online.
I have since discovered that other hospitals, universities, and transplant centers have posted their manuals online as well, and I have always found it interesting to download them and pick up little tidbits of information which may have not been included in the manual provided by IU. They are all a little different in arrangement and are tailored to the local facilities requirements.
Many of the online manuals can be found by simply doing a Google search using "transplant manual." If you are just interested in one organ in particular, enter "liver transplant manual" or whatever the case may be.
Most are in PDF format and will require some form of Adobe software.
A visit to a transplant center's website can also turn up some useful information.
One can begin to learn more about Indiana University's transplant program by visiting pages at its website. IU has an online Health Library that can be very helpful. For example, if you enter "liver transplant" in the search box, a long list of detailed articles will be provided, such as the article entitled Liver Transplantation: What is a Liver Transplant filed under Diseases and Conditions.
There are also several sites online that are broader in scope and may be of even more help in learning more about life post-transplant, such as
The International Transplant Nurses Society (ITNS) offers a free post-liver-transplant educational booklet (PDF) online for downloading as well as transplant patient educational booklets for kidney, heart, pancreas transplant recipients.
Wherever you go to get listed for a transplant, these post-transplant manuals, guides, and sites can help you to learn a little more about life with your transplanted organ.