Showing posts with label donor experiences. Show all posts
Showing posts with label donor experiences. Show all posts

Sunday 23 September 2012

That Leads us to Who Knows Where, Who Knows When?

I think I have always known WHERE this road leads, but it's still a question of WHEN? We're now just waiting, it seems.  Tim's eGFR remains in the high teens as it has done all year, and until it falls below 15% they don't intend to schedule any surgery.  This might seem like a good thing but it does nothing for Tim's symptoms or his overall health, and I'm just impatient.  Possibly at some stage I will visit his hospital just so they can meet me.  They've had all the test results from my hospital since August, and since no news is good news in that respect, I know I'm all OK.  When I visit I expect that I should have some interviews as these have been noticeably missing so far. All I've had was an initial chat with the transplant co-ordinator, and 30 minutes with a nephrologist.

On-line research shows many different approaches to donors and living kidney donation, which produces a huge variety of patient experiences.  Places seem to have their own specific emphasis on certain aspects; some places in North America seem to favour multiple urine tests, sometimes of huge quantities!  I seem to have got through the process so far at an amazing speed with a real lack of hassle, delay or aggravation.  It really surprises me that, if Tim's eGFR had fallen in August (say) then the operation could have been done before Christmas - and I only got going on this in April!  Other people wait for ages, with tests, repeat tests, worries, doubt, issues to be resolved and lots of aggravation; I think such delays can only add to the problems and doubt which a donor faces - surely they should try to make it easier and (especially) quicker? You can see why I feel pretty grateful for a pretty easy ride so far.

I'm still doing on-line research about people's actual experiences during their stay in hospital, looking especially for good tips on what to do/take/expect.  There are some good ones out there but you are never sure how current they are, or whether they apply also in the UK... etc.  I promise that I will add my own tips and experiences to the on-line library in due course.

There are also lots of other things that I will need to learn more about, such as pain management afterwards - I've never heard of most of the drugs that people talk about, far less understand why one is preferable to another. Some of the stories are almost scary and people can take ages to recover; conversely, some people recover without trouble and one went back to work after just TWO weeks!

Still, patience is a virtue, they say, and I'm certainly learning how to be patient.  As I've said before, once I've made a decision my preference is to get on with it, not pussy-foot around waiting.  I certainly have never had any idea of changing my mind, and any delay would not cause me to but it does just add to the overall stress.

Friday 11 May 2012

On Line Research

I guess most potential kidney donors do the same as me - search the internet for answers to questions and, especially, for stories from people who have done it.  There is one major caution here - you must make sure that what you find is clearly dated, as medical procedures have clearly been moving very quickly.  It is easy to read a story about breaking or removal of ribs to facilitate kidney removal and think "that doesn't sound very nice"; then you discover that it was written in 1999 or 2001 which really is ancient history as far as kidney donation goes.  A major advance is that laparascopic (key hole) surgery now seems to be almost universal unless there are specific medical reasons for the older method, which is rare these days.  As a consequence of this and other changes, donors are now discharged from hospital far more quickly than in the past, which can only be a good thing in principle (so long as you actually are fit enough!).

The precise testing and the order seem to be very different wherever you go - there are lots of similarities but the differences could lead you to have some real confusion!  There are differences between the British and American approaches, and there are differences between hospitals so even if you find a recent experience on line, don't assume that what you read is what you will go through.  Absorb the information and balance it with other people's experiences, then store it as a question to ask when you finally meet a specialist.  I've already stored for later one big question about pain management; I hope this has improved as well because I have found some poor reports from 10-15 years ago.

I have to mention one particular blog which I found last night.  It's called "the kidney thing" and it is clever, informative and funny - see if you like it.