Thursday… t+28 and PET scan results
Aug 3rd 2006PeterGetting My Life Back!
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!
3 Responses to “Thursday… t+28 and PET scan results”
Dawn on 03 Aug 2006 at 5:16 pm #
Hi Peter
FANTASIC NEWS! I’ll miss the blog though.
Hope to see you soon in your training role.
Love & Stuff
Dx
Andrew Everitt on 03 Aug 2006 at 7:54 pm #
Hi Peter
I was the guy who came and said hello to you today in outpatients at Guy’s. Apologies for such a random introduction, but it was a total coincidence to bump into you. I came across your blog last night whilest looking up Dr.Kazmi. I found myself reading the diary of your treatment as it had relevance to what could be in store for myself. As I mentioned I have Crohn’s Disease that has become difficult to treat and I was referred to Guy’s as they have transplanted two Crohn’s patients. The use of stem cell tranplantation in Crohn’s is new and slightly controversial. However, the potential if that not only could it control my disease activity but possibly cure the Crohn’s. They think that the transplant (autologous) effectively ‘resets’ your immune system and corrects the immunological defect that manifests itself as Crohn’s. The followup of patients who have had this treatment is promising but limited. The first transplants which were done in the US were only about 2 years ago.
My appointment with Dr.Kazmi was very good. He explained the treatment and mechanisms as to why it should be of benefit to me. The irony is that I have actually improved recently as I had a PEG fitted (for elemental feeding) so my nutrition, weight and energy levels have greatly improved. Dr.Kazmi commented that it would be best to do the transplant when I was at my best as this would make things much easier in terms of coping with the chemo and the overall success of the treatment. Obviously in my mind if I’m feeling better I’m more relunctant to consider what is pretty radical treatment. I have to weigh up the last three years that I have been quite poorly and the fact that all standard treatments have now been exhausted. As I’m sure your aware there no guarantees in medicine and basically I’ve been left with the decision. It’s a tough call but all the doctors I’ve seen at Guy’s agree I’m a good candidate. It’s a decision I have to make taking into consideration not only myself, but my family too. I have a two year old daughter and the timing of my illness has been bad. The good thing is I don’t have to make that decision right now. I have time to see how my Crohn’s pans out over the next couple of months.
It’s great to hear about your results and I wish you all the very best for the future. Hope you get back in the water soon and I look foward to getting back on it (though my standard of windsurfing is such that I still spend a large amount of time below the surface!)
Best Regards,
Andrew
Peter on 03 Aug 2006 at 8:39 pm #
Andrew,
Delighted to meet you – as you say it is a tough call. It was easier for me, I really had no options left, but I seem to have come through it OK. Being fit(ish!) helped withstand the rigours (and this was my third transplant – the other two were self donated).
Do let me know how you get on, whatever your decision might be,