Peter’s Hospital Diary

I have just returned from London for another check up. Yes, I know it wasn’t supposed to be for another 2 weeks, but about 2 weeks ago I felt a bit under the weather and a bit ‘achy’ and last week I felt a bit of a lump on my neck. Now normally that wouldn’t be much of a cause for concern, but as I have a bit of a medical history(!) I rang Guy’s on Tuesday and the Registrar (Rob) suggested that it might be a good idea to pop in to have it looked at.

So I set off nice and early on a well worn trail to Guy’s. The lump was given a severe staring at and there are three possibilities. The first is that I do (or did) have a low level infection, and it is the result of that. The second, and most likely, is that it is just a reaction to the transplant/GvHd that has flalred up, and the third is that the lymphoma really is having another go. Should that be the case, I can have donor lymphocytes to re-trigger GvHd, and/or local radiotherapy. However it was only 5 weeks ago that I had a clear PET scan, so no need to hit the panic button! I also had the results of the chimerism test that was done last visit, and I am still 100% donor - another good sign.

However, we need to discover exactly what is going on, so I had a needle biopsy and I should get the results next week.

It was good to see Mark (you will remember that he was a fellow transplant patient when I had my transplant) at the clinic this morning. He looked really well (well you would after 5 weeks in Menorca!) but his transplant has not taken, and it is possible that he will be going in again for another. Good luck Mark - we are thinking of you!

The needle biopsy was at St Thomas’s (and it seemed a long way on the shuttle bus - carrying my notes, which are about the size of a volume of Encyclopaedia Brittanica) so afterwards I called in to see my old friends at the City Hospital office. Lovely coffee, a sticky bun and a long chat with Nicky. (Nicky was the researcher on the first series in 2001, then moved up to become a producer.) We might do a live follow up interview for this series - I’ll let you know if and when.

So that was today - no cause to panic, but room for a little concern - but I haven’t got this far to let it get back, and I start my full time work on Monday, so as ever….

Onwards and Upwards!

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Just a couple - the first is is that it is 13 years ago today that we moved into this house. It was a lovely sunny day (like today) and we had lunch sitting on a blanket under a tree in the back garden while the removal van was unloaded and in between cleaning! I can remember it vividly! The house has been enlarged a bit since then - two extra bedrooms, study, two shower rooms and a garage for one building project, and the conservatory for the second!

The second is to wish Vicki (eldest daughter) and Tom a Happy First Wedding Anniversary. Hard to believe it is a year ago - so much has happened since then!

Other than that, a quietish day. The back lawn has been mown for the first time in 8 weeks, the grass is getting green again, and I have cemented in the wall chasing where the power cables go to the heating!

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The hours at work are slowly increasing in preparation for my full time return on September 4th! It is going to take a little adjustment to start getting to the office early!

The week has been uneventful for me - mostly in office, but a trip up to London yesterday. Nothing to report on the health front - the next appointment with Linny (or one of her cohorts) is on September 14th.

One other little bit of news is that the final touches to the conservatory (remember that building project?) should be completed in September when the furniture arrives. We have been using it quite a lot - the kitchen table is out there now, and as an interim solution, a futon to sit on. It was lovely having breakfast in there this morning with the sun streaming in! I’ll post a picture of it when the furniture arrives.

So onwards and upwards!

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Yes it really is 30 weeks since the transplant - over 6 months! There is not a lot to report on the health front since last week. The GvHd seems to be calming down and there is some indication that my sense of taste and smell is returning - in that it is more sensitive, but still not very discriminatory. Mothballs and most strong scents smell the same (although not the same as mothballs used to smell!) but my sense of taste is getting better. Curries and the like are fine, although what I used to regard as a mild curry now tastes very strong! Weird!

Meanwhile on the home front, the under floor heating in the conservatory has been commissioned. Not that it is really needed in this weather as the temperature rarely drops below about 21C during the day, but the floor does feel lovely and warm to bare feet! I’m glad I put in the thermal insulation under the heating mat. The furniture has also been ordered and should arrive in early September.

So things appear to continue to be going onwards and upwards!

Oh - and going out in the dive boat last week-end? Cancelled - bad weather

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And a much better result than last week - it must have been the beers and curry the night before!

The particular lung function test that had poor results is one that measures the efficiency of gas transfer across the lung lining. Prior to my first transplant, that figure was about 9.4 (I’m not sure what the units are) and that dropped after each transplant to about 7.9, gradually recovering. The best recovery figure was back at 9.5, but at about this time after transplants the figure has been about 8.3 to 8.5. Last week’s measurement dropped to about 7.4, which was over 20% less than the benchmark figure, but today’s reading was back up at 8.3. These figures do vary on a day-to-day basis, so the feeling is that last week’s was an anomaly, however I am having another one in 5 weeks when I go for the next haemotology check up. The important thing is that it isn’t a bar to my diving!

The tests themselves are pretty civilised - no running on a treadmill or anything, just sitting and blowing into a machine. At one point the seat is enclosed in an airtight box, so that the the lung volume can be measured, and the gas transfer function test uses a small amount of carbon monoxide to measure how effectively gasses transfer across the membranes. Only a very small amount because carbon monoxide is used because it is highly toxic, preferentially binding to haemoglobin, which is why it is so useful in this diagnostic test.

The tests themselves only took about 15 minutes, so it was pretty galling to take an hour longer than I expected to get to Guy’s! No, not because of the security measures at Heathrow today, but because the train I boarded at Waterloo East was one of the few that doesn’t stop at London Bridge (the next stop, 4 minutes away from Waterloo East). So it was 40 minutes later that I arrived at Tonbridge, to cross the platform and get the next train back again!

I took some time in Guy’s to go and see old friends in the transplant laboratory (Tammy and Justine) and the haemotology day unit (Claire and Rachel). They hadn’t heard all the details of the various PET scans, and they were pleased to hear the news!

Then it was back home - avoiding Tonbridge!

So the next planned medical event is the check up in 5 weeks.

I mentioned diving earlier - I am going out with the club this weekend. Not diving (I need a diving medical for that) but I will be driving the boat, so it will be good to get out and about again!

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Well, no use beating about the bush… the results were all that I had hoped for with no evidence of any active disease! There was a little bit of take up of the tracer round my neck, but that is considered to be normal metabolic activity and nothing to worry about. My blood results were good too, my haemaglobin is at 11.5 (slightly anaemic) but my liver function seems to back to normal. The creatinin levels are still slightly high, indicating that my kidney function still isn’t all that it was before the transplant, but is nothing to worry about, at least in the short term. Perhaps in a few decades time if it hasn’t return to normal by then!

After the hugely relieving PET scan results I went off to the lung function laboratory. Here results weren’t quite as good as the gas transfer function of my lungs (how well oxygen and other gases pass across the lung surface) is still not back up to the pre-transplant levels. Again nothing too serious, but I am going back next week for another test - just in case the three or four pints of HSB (Hampshire Strong Bitter) that preceded a curry while I was out last night on “a run ashore” had anything to do with it!

So apart from the repeat lung function test next week, I won’t be going back to Guy’s for another 6 weeks when I should get the results of a chimerism test, for which blood was taken today. Also at that time another PET scan will be booked 6 weeks after that (about mid-October). If that also proves negative, then the routine PET scans will stop.

You might wonder (as I did) why I had another chimerism test, when the last one showed that my blood was 100% donor. Well it is still possible for the old immune system to fight a rear guard action and attempt its own take-over bid, so there will be chimerism checks every 3 months until a year has passed, when the frequency of the checks decreases. Should there be evidence of a reverse take-over, I can have the stored lymphocytes that were taken from my donor at the time of the transplant to put a stop to the rebellious cells!

So where to with the blog? I did think this might be the last post, but with some test results still to come, I will probably leave it running for a while. I can continue to run it as a general diary (although that wasn’t my intention at the start) but once I start back to work full time (now confirmed as 1 September) life will be pretty routine, apart from the odd holiday/diving expedition etc. So it will stay for a while and I will continue to update it, although the frequency of the updates may decrease as time passes.

Meanwhile…. Onwards and Upwards!

And to the person who had stumbled across my blog (I’m afraid I didn’t catch your name) that I saw in the outpatients clinic today… Good luck!

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