Saturday 2 August 2014

A Family Wedding

I went to a wedding recently - a nephew, Tom, was getting married.  Tom is Tim's son and that made it a bit special.  What made it a bit more special is that they were having the reception at the same hotel in London that Jane and I had our reception in 1974.  In fact, it was almost exactly 40 years ago - all bar 8 days - so we decided to stay the night and really enjoy the event.

You can imagine the conversation when I booked:
"Shall I send you the details of how to get here?"
"No thanks, I've been there before."
"When was that?"
"For my own wedding reception, almost exactly 40 years ago."
"Oh wow, how lovely - we'll see if we can do something for you!"
And they upgraded us to a lovely room - our thanks to the Richmond Hill Hotel.

It was also a lovely occasion for Tim's family especially.  Last September his eldest son had got married in Cornwall, and Tim could hardly make the journey. He had no energy and would probably have stayed at home if he could.  All his family were so aware of his condition last year, and saw how he was looking (and behaving!) this year; one would not have known that this was the same person as last year.  It certainly struck me that he was looking so happy and healthy with those lovely sparkling blue eyes and lots of energy; if I had not known, I would never have guessed that he had been so ill so recently.

Then Tom mentioned me in his speech and I am afraid I once again demonstrated how emotional I have become since the operation. I would like to have stayed nonchalant whilst smilingly acknowledging the prolonged applause from the assembled gathering, but I just collapsed in tears.  Tears of joy, I think, but I just see myself as a very small part of this whole miracle.  There's the many hospital staff who did all my tests, the surgeon and her staff who actually did the operations and who looked after me post-op; then there's my wife and family, who supported me through the process without ever questioning my decision or commitment, and my brother Duncan and his wife Diana who looked after me for a few days when I was discharged.  Then there's Tim's family who have all been so lovely in thanking me.  Finally there's the fact that the whole thing is a miracle of science, a genuine miracle from God who gave me the faith and used me to show His love for Tim and his family.  I just feel so grateful and small. And happy.

Saturday 14 June 2014

Routine Check-up

I was meant to have my routine check-up recently - six months after my last hospital check (at the Churchill) which was seven weeks after the operation.  This check was to be done at my GP's surgery by the practice nurse.  I have been absolutely fine since leaving hospital, so was not expecting any surprises.

I duly arrived at the surgery early on a Friday and was quickly called in by the health care assistant (HCA) - a good start which didn't last! She asked me what she could do for me? I said it was a check as per the letter on my file - I hadn't seen this letter but knew it simply said "please check his renal function" as I had checked that they had the letter when I made my appointment. So she took my blood pressure and then produced a needle, put it in my left elbow and took precisely one blood sample.  I said "just one?" and she said "yes that's all. All finished". Hmmm.  On the way home I realised that she hadn't even taken a urine sample.  Something wrong here.

The next Monday I had an appointment to see the doctor on a small unrelated matter.  As I was about to go I told him about Friday.  He took a look at my file and quickly admitted that she had wasted my time - the one sample had been sent for a report on my liver function!  "Let's start again" he said.  So it was back to reception for more appointments;  they said "how about ten minutes time?" which really surprised me.  So, ten minutes later, I was sat in the same seat as Friday with the same HCA who then seemed to have a much better idea of what was required, but failed to acknowledge that she has seen me very recently!

She then proceeded to do the worst job I have ever known of putting a needle in the crook of my left elbow.  As she put it in, I had what seemed to me to be an electric shock in my thumb; I've had at least three mains electric shocks in my time so I know what it feels like.  She had clearly stuffed the needle into a nerve!  I exclaimed that it felt like an electric shock, but she made no apology and added insult to injury by just saying "you moved - I'll have to do it again!!" As a result I now have a bruise measuring 5cm x 3cm in the crook of my left arm.

It got worse.  The doctor had also specified that I should also have a test for cholesterol, which necessitates fasting beforehand, so this was arranged for the Wednesday.  So, first thing Wednesday, I was seated there again with the same HCA and she asked for my left arm.  "I don't think so" I said, offering my arm with its worsening bruise.  She failed to acknowledge her part in this, and proceeded to insert a needle in my right arm; I now have a bruise in the same place on BOTH arms, and I had bruised only once in 12 or 15 blood tests in the last two years.

To my surprise my results appeared on PatientView by Thursday night: the important one is my creatinine which was 126 (eGFR 53), which I'm quite happy with.  I don't understand why they did that test on bloods on both days as it's always going to give a misleading result when I've been fasting (144/45 for the record).  Yes, my cholesterol was a bit high as well...

I have spoken to the practice manager about the failure of a doctor to specify the required tests, and also on the poor skills and lack of sympathy demonstrated by the HCA. This does NOT bode well for the future.





Tuesday 10 June 2014

My Brother is Boring!

I had been waiting for my own 6 month check (since last hospital check) in order to do a single update about both of us, but I've been messed around by my GP's surgery and I'll update that one when it all becomes clear!

My brother Tim is doing very well.  He had a routine biopsy in early May, followed by an appointment with his consultant. The result of the biopsy was wonderful - "totally clear", no signs of rejection, everything as good as could be expected.  Tim's dose of MMF has been stopped entirely, leaving him on a reduced dose of Tacrolimus only.  The consultant has discharged him back to local care, saying "you're boring!".  What more could you possibly want to hear? 

We saw Tim in late April and he looked back to his usual self, with a sparkle in his eyes and lots of energy.  He has told me a few details of the change in his life

"On Saturday we cleared out the garage, took photos, put some stuff on Ebay, went to the dump in the rain, went out to a party in the evening. I probably haven’t even been into our garage for 4 or 5 years – could never have done all that before."
  
And another: "The trailer tent is now gone, several trips have been made to the dump – I can put a car in the garage! Seems like a strange space to have. Vegetable patch is planted with runner beans, French beans, two types of tomatoes, swiss chard and potatoes all on the way. Grass is cut, hanging baskets planted – everything grown from seed. Cleared out the spare room – more trips to the dump. Can’t remember when I could last do all this sort of stuff in one weekend."

And another one: "Kidney function is pretty much back to where it was when I was first diagnosed (50% - 9 years ago??) and I was unaware then of anything being wrong."

Certainly sounds to me that he really has got his life back!  

Tuesday 25 February 2014

Kidney Donor Day

I went to an event entitled "Kidney Donor Day" recently. This was held at St George's and they invited all of the 2013 donors; it wasn't the whole day of course, just an hour in the morning with presentation of a certificate each, some photos, lots of chat and some food.

There were about 15 or 18 donors there; it was noticeable that we were mostly older people, presumably because the younger ones were at work!  Sarah the surgeon thanked us all ("you can only do this once"!), made the presentations and gave us some figures. She said that this had been a record year for them: there were 45 live donors last year at St George's, and 140 transplants in total; there were five non-directed donors so I presume that these are not included in the 145 as they would have been to recipients elsewhere. (I hope I have remembered those figures correctly.)

It was a pleasant way of spending a day, and seeing the staff again.  However, I left with a funny feeling inside: this was completely over.  I can indeed only do it once and I've done it.  It does rather raise the question: what can you ever do only once (when alive), as opposed to doing something for the first time? There are a few similar medical things like having your appendix or gall bladder out but these seem entirely medical as opposed to altruistic.

I am very well and so is Tim; he wrote in a recent e-mail that "I feel better than I have felt for I do not know how many years". We now compare creatinine levels - it seems that the two kidneys are both performing even better now they are apart!  I am now getting my old energy back, and it does seem a bit harder than it used to but there again, I am now old enough for a Bus Pass.

I will possibly post a photo of the event when they are received, and then I'll come back here for the year anniversary in October.  I hope that my regular readers have found my story interesting, and that reading these experiences will benefit anyone thinking of donating a kidney. DO IT! There's nothing to be frightened of, it's a great experience and it's a wonderful gift to give.

Friday 31 January 2014

100 Day Update on Transplant

Following my last angry post a couple of weeks ago (see here), I feel I should update the situation on Tim.  He had a good recovery once he was out of the hospital's "care" and after being seen as an out-patient by the right (senior) consultant.  His infection has gone entirely and he has now had over ten days of low readings for everything critical (creatinine and Tacrolimus).

Last week he sent me one of those "really nice to get" e-mails in which he said that "I am feeling much better than I have since the op and for I don't know how long before that" and then another this week where he added "I just feel like doing more than I have been doing and thoroughly enjoying it!"  I think it's fair to say that my brother is well and almost back to his old self; that makes me very happy indeed.

As for me, I am just very thankful that I have been able to help him; our prayers (and those of several hundred others) have been answered in a quiet but dramatic sort of way, and we praise the Lord for his many blessings to us.   I am still amazed at how my own recovery was free from pain and I had no real issue at all in the entire process.  It was a surprise to realise that the 100 day mark was reached a week ago, which sounds as though it should be a call for celebration.  I have started to lift things and generally be far more energetic, so I have started work on some of the outstanding tasks around the house - all the things that were put on hold just before the op last October.  Now I just need the weather to improve!

Friday 17 January 2014

Treatment of Transplant Patients

It was pretty clear to me as soon as we arrived at St George's for the operation (now three months ago!) that transplant patients, both donor and recipient, seemed to be very well treated. In the course of my stay in hospital (10am Tuesday to 1pm Friday) there were very few members of staff who didn't look and act as though they really were concerned for me.

Overall, I felt that there was a genuine concern for my health, and that people understood what I was going through. Moreover, it seemed as though they were getting real job satisfaction from my rapid recovery and early discharge. Two or three poor incidents stick in my mind, but I won't let these over-rule the good ones, like lovely little Olga who brought the meals, who was so sweet and caring (and was a contractor!). Then, when I went back to Churchill Hospital for my six week check, they remembered me (from 15 months earlier) and seemed genuinely delighted to hear the news and see me looking so well. I am very happy with this relationship as it bodes well for my future healthcare.

In the same way Tim seemed to be treated very well at St George's, and his initial post-operative recovery seemed to go fairly well. Both of us made the deduction that transplant patients are almost the only ones who leave a renal ward with a prognosis of long-term improvement, and so are a very visible source of real job satisfaction to the staff who care for them. We saw so many poor people who are on dialysis or suffering because they cannot be dialysed, and we appreciated how blessed we are: I have a normal healthy live to look forward to, and Tim's life has already improved immeasurably since the operation. As I've said before, I don't really think that any of us realised just how ill he was; he was in fact so ill that he himself hardly realised how ill he was! (I think that makes sense.)

However, since the surgical team handed his care back to his own hospital (i.e. NOT St George's), I have so say that they have not been consistently as good. As an interested but distant observer it is very hard for me to say precisely what they have done wrong. Things seemed to be going OK-ish with just a few ups and downs with his immunosuppressants, but then before Christmas he got an infection in his throat and had trouble eating or even drinking.  Antibiotics failed (twice) to fix this, probably because he was still taking the full dose of immunosuppressants (Tacrolimus), so the senior consultant decided to admit him early in January, with the intention of carefully reducing his immunosuppressants to allow the antibiotics to work. Sadly this senior consultant then took a week off and the ward consultant (plus team) was ABSOLUTELY USELESS. In six days they managed to get him back to a very high creatinine level (peaking at over 200), his blood Tacrolimus was 50% higher than their maximum target, and his C-Reactive Protein (CRP) was sky-high as well, at over 40. They failed to identify what the infection was and, at one stage, the (new) consultant looked in his throat and said "I can't see anything wrong", so Tim (using a mirror and pointing to his inflamed tonsils inside) said "what's that then? It didn't used to be there!"

In addition to these woes, the rest of the treatment wasn't the best. Everyone else in the ward was on low fluid intake, and the ancillary staff couldn't understand that he was exactly the opposite; he would ask for a cup of tea (not being allowed to make it himself) and 30 minutes later they would bring him a small half cup of tea. Also, the nurses were too busy to follow the senior consultant's care plan; antibiotics every SIX hours seems pretty simple but when they found at MIDDAY that his cannula wasn't working it took them EIGHT hours to fit a new one, and another two hours to give the next dose of antibiotic.

I just hope that the senior consultant gets to hear of all this - I'm sure Tim will tell him if he gets a chance - and kicks a few butts.  It just makes me so angry. The NHS (quite apart from me!) has made a pretty big investment in his health by doing the operation, and then a bunch of disinterested doctors and nurses risk throwing it away by just not caring for the individual's specific needs. If his new kidney fails in the near future we will never really know if all this has caused it, but it damn sure doesn't help, does it?

Thursday 19 December 2013

Keeping Patients Informed

At my six week check, the consultant suggested that I could get access to "PatientView". This is an on-line IT system which does what it says - it lets patients view things about themselves, like their results.  My brother Tim has been using it for some time, but I hadn't appreciated that I would be allowed to use it as well.  It used to be called RenalPatientView but is now getting rolled out to include other specializations.  So I filled in the form as suggested and, after a very short wait and an exchange of e-mails, I now have access to this nice little system which allows me to see what their records have about me, from two different hospitals. This will be useful and interesting as I shall be going back for an annual check up for the rest of my life, and it will save me trying to keep track of things like the change in my eGFR.

Knowing that I was to get this access, I did not call to find out my results from Dec 3rd, but waited to see them on-line. The good thing was that my eGFR has gone up to 50, having been 44 a week after the op.  So my remaining kidney is manfully responding to the new demand placed on it.  I shall be following that figure avidly over the coming years; it will of course never again reach the giddy heights of 80 which was the sort of figure I had pre-op, as you can't expect that much of one kidney.  I'm quite happy with anything over 50, and it will be interesting to see where it settles.

In actual fact, this system is potentially so useful that I'm sure everyone will one day have access to something like it. One benefit is that you don't have to telephone for your blood test results - you just check the system a day or two later and there they are. This will save the staff time as well as saving the patient's phone bill. There's obviously a cost but the overall benefit to patients must be considerable, if only to take away that feeling of "there's something they are not telling me"!