Phase 1- Done!

So what kind of time commitment is required to donate a kidney? One of the goals of this blog is to time the donor process from start to finish so someone thinking about donating has a point of reference about how this decision is going to effect their short term life. Of course, this will vary from person to person, especially if you are donating to someone in a different state and are required to travel.  I am breaking this up into 4 phases, and covering the details of each phase in blog posts.

  • Phase 1: Time spent determining if you are a viable candidate to donate a kidney
  • Phase 2: Time spent getting the transplant and staying in the hospital
  • Phase 3: Time spent recouping before returning to work
  • Phase 4: Time spent getting back to “normal”

So here is my experience with Phase 1:

The donor assessment phase, put simply, is the phase where the transplant team makes sure that you are physically and mentally capable to donate an organ.  It consists of a battery of blood and urine tests, as well as some meetings with a donor advocate who is there to make sure you understand everything about the donor process, especially the risks.  They make sure that nobody is pressuring you into donating, and make sure you understand that there is no medical advantage to becoming a living donor (they repeat that part a lot).  You also talk with a psychologist whose job is to present all possible negative outcomes, and make sure you are a good candidate to donate.  Here is a the detailed version if you are interested.

According to the Living Kidney Donor Network, the donor assessment phase time frame varies, and you should check with your hospital to get a rough idea of how long this phase will take. Things like where you live and what tests you require might effect the timeline, but typically it takes 2-6 weeks. Wherever possible, the assessment is tailored to your needs and commitments. For me, this phase is taking about 9 weeks, which has been largely decided by appointment availability at Northwestern and not affected by any of my own schedule issues- I am making appointments as fast as they offer.

Here is a breakdown of what they test for in Phase 1 to ensure there are no medical or psychological reasons that will keep you from being a living donor:

  • Complete blood count (CBC) with platelets
  • Chemistry Panel
  • Liver function tests (LFTs)
  • Prothrombin Time / International Normalized Ratio (PT/INR)
  • Lipid panel
  • Hepatitis
  • Syphilis
  • Cytomegalovirus (CMV)
  • Epstein-Barr virus (EBV)
  • HIV
  • A chest X-Ray
  • An electrocardiogram (ECG)
  • Urine culture (several)
  • 24-hour urine collection for protein and creatinine clearance
  • Medical history
  • Psychosocial history
  • Diagnostic tests
  • Evaluation of the kidney’s size and shape
  • Evaluation of the kidney’s blood vessels and ureters

So today marks 9 weeks into the journey, and in the next 2 days, I should know that I am for sure a good candidate at which point I can technically donate immediately. About one in 750 people is born with only one kidney. The medical term for this condition, which is more common in men than women, is renal agenesis. Usually it’s the left kidney that is missing.  Other people have 2, but only have 1 working one, and don’t even know it.  Either of these scenarios would disqualify me.  Everything has looked good test-wise to date, so unless I have funny kidneys or only one to begin with, it should be a go!

Phase 1 was easy.  I am only leaving Phase 1 with 2 questions that the hospital does not help answer:

  • Life Insurance:  Donating a kidney can effect your life insurance and/or the ability to get it.  I am unclear on how my specific insurance will be affected, and need to figure that out.
  • Health Insurance: The Affordable Care Act has made it illegal for health insurance companies to refuse to cover you or charge you more because you have a pre-existing condition. Still, I want to make sure that someone more qualified than me goes through the fine print on my insurance to make sure there isn’t anything to worry about.

My preference is to donate at the end of the summer/early fall, and they take that into consideration, which is cool.  It would be unusual if an opportunity to donate doesn’t arise within the year.  I also find out that they DO let you put parameters on who your kidney goes to, but that most people don’t do that.  For example, you could say you will only donate to a child.  I feel pretty strongly about 1 parameter, and that is to start a chain.  So with that parameter, I know 1 kidney ends up helping a minimum of 2 people.

So that’s all for today!  Thanks for reading, and don’t forget, you are invited to join me!  Here is an inspiring video about a really long transplant chain to end the blog today!

-Laurie

 

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