Update after Discharge

Well, the headline news is that all has gone extremely well ("textbook" operation) and both Tim and I are fine. I knew that things had gone OK when he was wheeled into Recovery beside me with this enormous bag full of urine attached to his bed.  His creatinine was measured at less than 200 immediately after the op and he told me that he had NEVER known it that low before - it was above 200 when he was first diagnosed six years ago and was about 400 before the op.  It was down at 140 at the last count which was, apparently, less than mine which was 154!

I was mobile by Thursday afternoon and then was discharged on Friday at around 1pm, exactly 48 hours after being taken from the operating theatre to the recovery area; I don't think this could have happened more speedily - even the most optimistic guess beforehand was for a Friday late afternoon discharge, with Saturday being more likely. I have had a couple of bad night's sleep but there has been remarkably little pain or discomfort, and a lot of mobility has already been restored (but I AM still being careful).

We are now spending a few days with Duncan (next elder brother) and Diana. They live less than 30 minutes from the hospital and he happens to be a retired GP, so the hospital knew that I would be in good hands with Jane and Duncan around.  Nevertheless the Renal Team emphasised that I should contact them or even just turn up AT ANY TIME if I had any issues at all.  I am scheduled to see the surgeon and have a few tests on Tuesday; if all is fine then I will return to home in the countryside, and be in the care of my local transplant centre.

In the next few days I intend to tell a more detailed story of my time in hospital but right now I would just like to express my thanks for the care I received in hospital; from the surgeon Sarah to the lovely Olga who served our meals, everyone was absolutely wonderful and I thank them from the bottom of my heart. 

Both Tim and I have been amazed at the support given from friends all over the place. It is truly humbling to know that so many people are supporting you in prayer, and that support includes lots of people who I don't even know. We are so grateful for this and I am sure it has eased my path through this process.

Cross-Matching Explanation

Further to the previous post, I've now had a sensible explanation for the need for cross-matching blood immediately before the operation: it's to identify suitable blood for possible use during the operation as a transfusion.  If they don't do this beforehand then, in an emergency, they would have to use blood which was "probably" the right match but may not be the best match; the analysis takes a few hours and in an emergency they don't have that time to spare! Obvious really, innit? Why can't people tell you the simple answer in a simple fashion?

Possibly there might also be a cross-match with Tim's blood but, as was explained to me, this is more of a formality as there is no likely reason for either of us to have suddenly produced antibodies, both being blood group O (universal donor).

Anyway, we're off in a couple of hours to London to avoid the morning traffic tomorrow - I wouldn't want to be late for admission at 10am due to the feared London rush hour (which seems to last all day these days), and neither would I want to leave here at 6am.

See you Tuesday, Brother!

"I'll see you next Tuesday then, don't be late."  I think that was the moment yesterday when it hit home to both of us that we are almost there.  It's 20 months since I volunteered and at times things have moved slowly but the last few weeks have rushed past.

We were at the hospital yesterday, and it was the last time for me as the operation will be performed at a larger (and better known) hospital nearby. The purpose of the visit was, as ever, for some more blood samples; these were the ones for the last minute cross-match.  This had puzzled me a lot as no cross-match was done at the start of the process, which seems odd for such an important thing.  This has been explained to me and I think it is something to do with the fact that we are both blood group O, so there are no antibodies present, neither has Tim had any introduced by any treatment. (You can tell I am still a bit puzzled by this.)

Anyway, asuming that is still clear (and there's no reason why not) then we are all systems go to turn up on Tuesday for admission starting with a set of very last minute tests and various interviews/meetings.  They often operate on two pairs on the same day but we are the only pair being done next Wednesday.  This is good because it means there's no issue of being second and having to wait around until noon, so I'll be going down between 8 and 9am with Tim following at some suitable point during my operation.

Life has been a bit hectic as I have been finishing and handing over lots of jobs.  I think I'm finished outside but inside the house still has a few little tasks, and my churchwarden duties (of which there are a lot) are getting dumped on anyone I can!

It now seems that I am expected to hang around near the hospital for a few days until I see the surgeon again; this should now happen on the following Tuesday and, if all is well, I will come home that day. I'm grateful to another of my brothers for looking after both of us for that time - apart from accommodation I think he is also providing a taxi service for Jane to come and visit me (but we'll know more about that on Tuesday).  After I come home, I think they intend to transfer my care to my local transplant centre. I am very happy with this as I was treated really well by them when they did all my initial tests, and it will be good that they have the interest in my long-term care.

HTA Interview

Getting really close now - less than three weeks.  Yesterday was the HTA (Human Tissue Authority) interview.  They have a legal duty to be satisfied that I am under no duress or coercion, and not being rewarded in any way for donating. As part of this, you have to prove your relationship to the recipient, which we did with full birth certificates (NB not the abbreviated one as you need parents' names on it) and lots of old wedding photos for ourselves and some of our siblings.  We have often had a photo taken at these events showing the seven brothers in order, with the new bride in the middle - never thought these would come in handy!  The only worry I had was that I don't look as young as I was, so I also took an old passport to prove that it was me in the pictures.

The HTA also want to be assured that the donor understands the risks of donation and the possible things that could go wrong, so a decent read of the four page HTA document is required, as well as listening carefully to the things that the surgeon said in our earlier interview. It all went well and the interviewer said that she was satisfied, so that's a done deal unless there was something fundamental that she forgot to ask.  I also had a few pre-op things done - some MRSA swabs, some more bloods (as always!) and a fasting abdominal ultrasound, which was done by a doctor and he pronounced that there were no issues seen.  NB I don't know why this was needed - did they think my insides might have changed since the last one in August last year?

The next step is the final cross-match check which will be done six days before the op - another visit to London - and then everything else will be done the day before the op.

Starting to feel a bit nervous or apprehensive - the same sort of feeling as the imminent arrival of a long-awaited exam day.  As I've said before, this is all the sort of thing that I had expected as a natural consequence of making the donation decision last year, so it's no surprise really, just a realization that the summit seen from afar is actually getting quite near!

Less Than Six Weeks Now

It's funny how things change.  Last year, I was expecting to have the operation quite quickly and time seemed to pass quite slowly as eventually it dawned on me that actually it wasn't going to be that quick.  Then we had the false start back in March when we agreed a date in May only to be over-ruled by the team meeting.  Now it seems an age ago (i.e. early July) that we agreed the operation date (Oct 16th) but suddenly I realise that it is just six weeks away. That's the sort of thought that makes your stomach flip a bit as you appreciate that it really is going to happen.  Soon. Voluntarily.

Back in June I made an analogy of this experience to a parachute jump which I did 20 years ago (see this entry).  As time passes I am even more convinced that it is a very good analogy for kidney donation.  I volunteered for that jump, and it never crossed my mind, once that decision was made, to opt out.  The following through with actions was a natural consequence of the decision; I didn't keep asking myself "why am I doing this?", I just got on and focussed on what needed to be done, the next task.   

I think that is exactly how I feel now.  Right down to the idea of going into a hospital as a very well person and coming out as a not so well person who needs time and attention to recover. The decision is made; my brother needs some help which I can provide.  I just focussed on the next test, the next visit, and kept on doing it.  At every test I was surprised that I kept on passing them! How would I feel later in life if either I had not volunteered, or else I had got cold feet and opted out after a few tests?

I am not really surprised to be a form of answer to prayer.  It was said a long time ago that you shouldn't pray for something unless you were prepared to be part of the answer!  I really feel that I was called to volunteer, that this task "had my name on it", and that this is one of the things that my life is all about.

Anyway, it's the HTA interview in less than three weeks, plus another abdominal ultrasound for good measure.  I really found the last one a bit odd - two young women (one was a trainee) staring intently at my abdomen and the picture that appeared on the screen.  My age is more than the two of them together. That really makes me feel old - they probably think of me as almost geriatric!

Cholesterol Postscript

There was one rather nice thing recently - I was told the results of my blood test early in July.  The result was VERY good - my cholesterol has gone down from 6.8 in March, to 4.7 which is on the right side of 5!  Now, considering that I have given up just a few things and taken only a little bit more care with what I cook and eat, I think that's a remarkable result.  I have to thank my other half for that, really, as she is the one who knows how much saturated fat there is in everything.

I've not taken any more of that Atorvastatin stuff (which caused me sleeplessness) and so I feel quite justified in that decision.

Meanwhile, the HTA interview is now fixed for September.  That was more difficult than it sounds, as the interviewer only gave the hospital one date and time rather than a choice, which is normal.  Since I have to travel from the wilds of Oxfordshire to a London suburb, a 9.00am start was not really on and, in any case, I had asked for a time of 12.00 or later to allow for me to travel by train at the cheaper rate (and I'm paying!!). So the transplant nurse requested some alternatives for me and the reply was 11.00am on the same day!  So we went round the houses again, and at last had a choice of three dates and times.

I'm now expecting the letter with all the details of that; I think I have to demonstrate something about my close ties with my brother, like a family photo album.  Now given that I have lots of brothers and there are four who are closer to me in age than Tim (who is seven years younger than me), it is hardly surprising that there are relatively few photos that show us together. I just hope that the interviewer is more understanding at the job than in arranging appointments.  After all, if you were told to find the two related people in a crowd of a hundred, you would pick the two of us out without difficulty!

The Date is Set - Again

Positive progress at last.  Tim and I met the surgeon again a week ago, and confirmed that we were still fit and healthy.  Then yesterday the transplant nurse confirmed that a date has been set (again - see last time) for the operations, namely October 16th.  This is the date we agreed tentatively at our meeting, but this time (unlike last time - see here) they waited until the team meeting every Friday had confirmed the decision before telling us it was set.  We did have options to ask for a September date but this is out due to family events like a wedding.

Since Tim's eGFR is still just above 15%, what has changed?  I think basically they have accepted Tim's evidence of being less physically fit this year than the same time last year, and therefore on the basis of his reduced quality of life, they have accepted that the operation should go ahead.  I suppose that eGFR is not the only symptom but is used as a convenient measure which covers most cases, but not this one!

Now, I still need to have the HTA interview, and this will be booked for September.  I also need to have another ultrasound - I think they like to have this one really up to date and my previous one was in August last year, so will be 14 months old. Hopefully this will be fixed for the same date to save me too much travelling.  Then we're ready to roll!