Please PAY ATTENTION

[PhilHoover]

to your care....Recently, someone told me that:

1) they left the hospital the next day after giving their kidney......NOT A GOOD MOVE!

2) They never asked any questions of their doctor, because the doctor was just too busy---FIND ANOTHER DOCTOR...

3) This person was not sure what to do about their pain.....GET GOOD INSTRUCTIONS beforehand....

I'm so distraught just thinking that someone would be willing to become a living kidney donor, but DOES NOT take care of themselves afterwards...

Please pay attention to your care....have a plan BEFORE THE SURGERY...and work that plan....

[Christine Robinson]

Agreed, Phil.  I think many of us, myself included, take (or took) our good health for granted.

Good advice.  Hope for the best, but don't get blindsided by preventable after-effects.

As for the hospital stay:  My donation was laproscopic and I was out of the hospital the following day.  I wanted to recovery in my own quiet space, and I don't think there's anything wrong with that plan if you have no complications.  But follow-up with your care providers is essential, no matter where you're recovering.

Christine

[jstx]

Some things that helped me were keeping a notebook that I could write in from start to finish----things like contact info for my coordinator, the social worker, lists of questions with room to go back and fill in answers, hotel/lodging/airfare reservation info, etc.  I also kept a file with my lab results, printouts from websites with info, all my discharge information and things like that.  This gives me something to refer back to when I need it because it is hard to remember everything said along the way.  Somewhere I found a huge list of questions I could ask (in addition to the list I'd put together on my own) that I printed and then went in and highlighted the items I wanted to cover with the transplant team or my own doctor.  And I took my little notebook to work each day so I could jot down questions as I thought of them.  This all really helped me to keep it together through the process!!

[llinton98]

It also wouldn't hurt to be followed by a good nephrologist thereafter.

[Orchidlady]

Good advice, Phil.
For anyone interested, here is a link to the main site that captures some information that Dr. Freeman and myself (independent of each other) had put together a while back.
Hope this will help someone.
https://livingdonorsonline.org/kidney/kidney_livewithone.htm

[lawphi]

Sad to here, especially if it was a non-related living donor. 

There are reasons that some centers perform multiple living donor surgeries a week and other centers do a handful a year. 

[Snoopy]

Somewhere I found a huge list of questions I could ask (in addition to the list I'd put together on my own) that I printed and then went in and highlighted the items I wanted to cover with the transplant team or my own doctor.

   Would you be able to post that list of questions? I'm sure it would help many of us.
         Snoopy

[jstx]

There are actually a several different places you can go to get helpful information.  The ones I used are below:

LDO - If you click on the kidney link from the home page it takes you through the whole donation process.  Under the "getting ready" page you can click on a link for the questions.  This is the page: https://livingdonorsonline.org/Questions.htm  -  There is an option to download the questions in word, pdf, or plain text.  I downloaded and printed them out and then circled or highlighted the ones I wanted to ask.

I also found good information on the National Kidney Foundation's website.  If you look under transplantation on their home page, you'll find a living donors link.  It will take you here: http://www.kidney.org/transplantation/livingDonors/index.cfm  - From here you can look around.  I found the information and resources section towards the bottom of the page to be helpful.  When you click on that it will take you to a page with several more links.  I printed out the helpful tips page.....still kicking myself everyday that I didn't keep a journal.  I just didn't feel I had the time or energy to write out all my feelings, etc each day but wish I'd kept a simple timeline and quickly jotted down my feelings....oh well.  Now I'm going back to try to recreate it while the memories are somewhat "fresh in my mind".  Hope this helps.  Let me know if you need anything else or have more questions.

[livingdonor101]

More questions available here: http://www.livingdonor101.com/questionstoask.shmtl.htm

[carmelpi]

Everything on your list is good advice save the first one.  There is a VERY good reason you leave the hospital the day after your surgery.  Actually, several.  The first and most important reason is something called a nosocomial infection.  These are more commonly known as MRSA and VRE (Methicillin / Oxacillin resistant Staphylococcus aureus and Vancomycin resistant Enterococcus) infections.  These are hospital born infections and VERY hard to treat.  If you get an infection at home you are in much better shape (antibiotics will work just fine on those).  The longer you stay in a hospital the more at-risk you are for one of these infections.  Also, another antibiotic-resistant bug that is popping up is Tuberculosis.  Not as likely to spread as MRSA or VRE but you are still at greater risk in a hospital setting than at home.  This is the main reason they send you home early.  Since you were healthy going into the surgery you are less likely to be at risk for complications and more likely to recover just fine.  Your one remaining kidney should take over perfectly fine.

Also, would you rather convalesce at home, in your own comfy bed / couch watching your massive amount of cable tv / movie collection / reading your favorite books / eating your OWN food or in a boring hospital room with limited tv, no books, and hospital food?  HELL NO! lol!  My blankets were also waaay warmer than the hospitals.

So, actually, it is a VERY good move to leave the hospital the day after your surgery.  I do not think, though, that it is a good idea to leave the AREA of your transplant center (going cross-country) while convalescing.  If you do happen to have a complication, you need to be able to get back in to see your transplant docs.

My qualifications for the above info, btw, are that I am a Microbiologist working in the very hospital I donated at (made an awesome cover letter!).  I get to see the MRSA and VRE screens as well as seeing positives.  No matter how awesome of a hospital you go to (and mine is pretty high up there - we're looking to displace one of the top ten centers / schools within the next 9 years) the risk of infection is there.

[PhilHoover]

One of the questions that should be asked (BEFORE THE SURGERY is planned) would be "What is the risk of infection at your hospital?"

I felt absolutely FINE at the University of Alabama-Birmingham Medical Center.    I was treated so very well by the staff--and I do mean everyone....and I never even considered the risk of infection....I was THAT confident in that medical facility.