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.

...With Many A Winding Turn...

I've just returned from another day at my (relatively) local transplant hospital, after the last tests as described in my last post.  These appointments were for a "CT Angiogram Renal/Abdominal", a Glomerular Filtration Rate (GFR) test and a Renal DMSA; as expected it was quite a long day, but I must compliment the hospital for making it a relatively stress-free experience, as all three appointments were conducted at the times specified and I was not kept waiting unnecessarily.  Sadly, the necessary bit of waiting involved two waits of 90 minutes and three waits of 60 minutes, but there was no getting around those.  The good side of this is that I have now finished reading "Pilgrim's Progress" (at last).

The abdominal CT ("Computerised Tomography", in case you wondered) scan in Radiology was first. You lie down and are moved feet-first into a large doughnut-like machine which is basically a rotating X-Ray with some clever software to build up a 3D picture of whatever part of you they are interested in.  Part of this 30 minute procedure is three timed injections of a surprisingly large quantity of an iodine solution; the radiographer fitted a cannula into my left arm to save me looking like a pin cushion after the whole day; I was surprised that radiographers could do this, and she was cautious as she got someone in to check it. I spent some time trying to calculate the quantity of iodine based on the size of the transparent container and eventually came up with 125ml ("almost an armful!").   I assume that the iodine goes to/through my kidneys and is picked up by the X-rays thus highlighting the interesting features like the number and position of arteries. You are warned that this iodine can have three effects: a hot flush, a metallic taste in your throat, or the feeling of sitting on a warm car seat (although I don't have such a device in my car so could only guess); this last one has also been described as a feeling that you are wetting the bed!  I had only a hot flush on my palms and a slightly warm feeling in my nether regions. 

The other two appointments were done in the adjacent "Nuclear Medicine Department".  The GFR test starts with an injection and then the four subsequent blood tests (using the same cannula) will give an accurate figure for how well my kidneys are working - I think this is for future reference, as the eGFR has already told them that they work OK.  For the Renal DMSA, you are injected with a small amount of radioactive fluid and after the 90 minute wait they do a scan which picks up the radioactivity and shows the distribution of arteries etc around your kidneys.  (I think this confirms the CT scan.)  Because of this radioactivity, you are shown to a different waiting area (with toilets marked "radioactive hazard"!) when you come back for the scan - this is to protect the staff like the receptionists who otherwise would suffer a particularly large unwanted dose over a long period from many patients like me hanging around near them.  In doing the scan you lie down and they move a large scanner down to your body; I wondered if it had some sort of safety stop on the maximum travel as otherwise it could be a new way for someone to try and kill James Bond!  Or perhaps by this time I was starting to fantasize.  NB For this scan of my abdomen, I had to remove my shoes (why?) and was moved under the scanner to a position where my feet stuck out the other end in a draught! Just a small point...

I mentioned the Renal DMSA in my last post.  Since then I have found out (from Wikipedia) that DMSA stands for dimercaptosuccinic acid, which makes me no wiser.  It has the chemical the formula HO₂CCH(SH)CH(SH)CO₂H if you're into that sort of thing.  Slightly worryingly, the Wikipedia articles on DMSA and dimercaptosuccinic acid do not mention its use for assessing kidney function, while the article on Renal Function does not mention DMSA at all.  More questions for the list!  [NB I also mentioned Di Franks' excellent website last time.  I have also found that in fact she has covered the same topic of eGFR and Renal DMSA in some useful detail - see this link.]

In one of my long waits, I visited the Transplant Co-Ordinator to ask a couple of questions.  Since this is my last visit to this hospital, I also wanted to thank her in particular for making my testing so painless (both literally and metaphorically).  They will send my results to London and my further participation (if any!) in this process will all be there, so I won't see her again but I will keep her informed.  As far as I am concerned, the Churchill Hospital in Oxford have been excellent throughout this process of tests, and I think they have all been wonderful to me - nurses, radiographers, phlebotomists and receptionists have all been happy, helpful, efficient, professional and just right in their approach to me. Well done, I say.

Finally, on being picked up by my wife, I kissed her after greeting her with the ultimate chat-up line: "Hiya.  I'm Radioactive Man!"

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.