Saturday, 5 November 2016
The 'R' Word
The 'R' word reared a few weeks ago now, when I was diagnosed as being in 'acute rejection' and just to complicate matters another diagnosis, that I had pseudomas colonising in both my lungs. It's believed that this has probably led from all the complications that followed the bout of CMV virus I had last Xmas.
Last Xmas seems a long time ago now, well it's nearly a year this month that the CMV reared itself. The problem with a transplant patient is that with an infection or virus then a careful balance needs to be struck with the immunosupressant medication. If you are too over immunosuppressed then it's difficult to control the infection; if you become under immunosuppressed then there is the strong possibility that your body may reject the transplanted organs.
When I had the CMV it was very severe, so my immunosuppression needed lowering to help combat it. After my CMV levels were back under control, it has since been a very delicate balance of controlling it so it would not reactivate and keeping the immunosuppression at the right level too in order to prevent rejection. I'd been having regular clinics and blood tests every month since, to keep a close eye on things, so I was lucky I happened to be at clinic and the rejection was found promptly. I shouldn't have been that shocked really that a rejection had happened, as that's one of the reasons they'd been monitoring me so closely. I thought I'd got away with it being nearly a year on from the infection.
The rejection was treated with high doses of IV methylpred steroids for three days and then with further oral steroids at reducing doses until I reached a suitable maintainance dose. To give you an idea of the increase I used to be on 5mg a day and the methylpred dose was 600mg. I also had to have another immunosuppression tablet doubled in dose. Pseudomas are a common thing in both pre and post lung transplant patients and can be without symptoms but when an infection or rejection episode occurs they can begin to colonise, start to inflame and even become infectious as they react, which is what had happened in my case and it was named as organising pneumonia. So I needed to be treated with a strong course of antibiotics too. And with all this happening, there was a fear of the CMV virus occurring again, so I had to be put back on the treatment for CMV too. All in all, a bit of a drug overload which in turn give their side effects on top of whatever else is happening, so some extra treatments for those too. Then it was a case of waiting a couple of weeks to see if the medication helped and whether the problems had been sorted, so add in a little anxiety on top and a lot of hope that this could all be turned around.
I arrived back at clinic and had all the routine tests done and my X-rays looked like the organised pneumonia was improving, which was a big positive. However, there was no improvement in my lung function, which the consultants had expected looking at the x-ray. There was even a slight decline, so they acted swiftly again and squeezed in an emergency CT scan before going ahead with another bronchoscopy and biopsy. I was admitted back in hospital again and unfortunately the biopsy came back with the disappointing result that another type of 'rejection' was now occuring. This time a rarer thing with an acute rejection, which the consultant described to me as cells localising in a stream of rejection in the airways of my lungs. So it was back to square one again - back with the routine steroids treatment again, although I've just had it and been through all that. It was another three days of the high dose methylpredisolone in hospital to zap this second rejection and home again now on high oral doses to keep up the treatment. They will reduce down a little over the next few days, but they are going to be maintained at a higher level to help my lungs recover if possible or hopefully at least help them remain where they are at.
It's a matter of waiting to see if this does the trick. There will be more biopsy results to come yet on the organised pneumonia front and discussion on the CT results amongst the team and I'm back at clinic in less than two weeks for another MOT, biopsy and bronchoscopy to see where we are at. I'm truly hoping and positive we can either turn this around at this point or hold things where they are at least. I'm also trying to be ready and prepared for whatever else may happen.
In the meantime we have lots of very positive things happening too and this keeps me motivated to grab life and every moment it offers. It is Rose's graduation ceremony on Thursday. We are working on a plan A, plan B and plan C on enabling me to either attend or at least be part of it all somehow. It will depend on how well I am, but we will find a way or a compromise that will work and it's something to really look forward to.
Rob also attended the Papworth Annual Patients' Event while I was in hospital and did a talk about what it's like to be a carer. Carers are often overlooked and they play such a vital role in all that we go through. I think it was a moving speech from what I've heard and I'm proud of him. He also did what was supposed to be my speech about our Transplant Patients' Representative Group that I chair and about the Transplant Support Group that our group have set up and got underway this year at Papworth. I was also supposed to be signing and selling my books there in aid of the support group and he successfully managed to sell quite a good few books for us too. It helped after the Director of Transplant Services and my transplant surgeon gave my book a big plug in his video. He's a person I'm forever grateful to for saving my life, but he continually supports us patients through our journeys, together with his marvellous team.
After all that, Rob was back by my bedside just in time for my biopsy results. All in all, he's been a star and a rock not only supporting me, but ensuring all the comittments I'd taken on were organised and worked smoothly without me. I can't thank him enough, but I know the causes are as dear to him as they are to me.
We've more activities planned with the John Henry Newman School in Stevenage and hope that these can still go ahead, as we hope to raise funds for the Papworth Hospital Charity, who are being very supportive and helping us with this. I'm looking forward to the Christmas concert there in December, where we will also be signing and selling books and giving talks with Papworth Hospital Charity about their work and raising awareness about Pulmonary Hypertension and organ donation through my book. The Papworth Hospital Charity are also supporting 'Life is for the Living' on their new and updated website, which is great news for us to help raise awareness and funds.
There is also our Christmas Transplant Support Group meeting on the 26th November, which is all organised with books on sale there again. If you are a Papworth patient, please let me know if you'd like to come. The Papworth Ely Cathedral carol service is on December 17th, where the charity will have a stall with 'Life is for the Living' on sale too. The Papworth PH group have their Christmas party on Saturday, 12th November. I can't make this one as it clashes with returning from Rose's graduation, but they will have my book on sale there too, helping to raise much needed funds for their very special group.
If you're going to any of these lovely events and fancy buying a copy of the book or picking up a copy or two for a Christmas pressie then there's your chance and you will be helping us to raise more awareness and funds for fantastic causes. Thanks to everyone who has already purchased it, we are hoping to pass selling a thousand copies by Christmas!
It's also November and a busy month for promoting awareness of PH - watch out for another blog post soon about all this coming up next... there's a lot happening!
We also have our lovely friends, Bernice and Scott's wedding evening reception next weekend. Now this is a truly special wedding, as like myself, Bernice received her gift of new life and transplant three years ago. We shared our journeys together and she's gone on to have the most wonderful new life and is living her dreams. Her journey has been an amazing one to watch and it's all thanks to our donors and their families that we can celebrate these special moments. I'm so looking forward to it and meeting up with everyone.
And then there is Sarah's Baby Shower party and Christmas... so there isn't really much time for dwelling on 'what ifs', just so much to enjoy and be busy with and for living in the moment. The rest will unfold and slot in with whatever we are doing. We will just have to squeeze it in and whatever happens will fit in with us somehow.
Thanks for reading if you made it this far and haven't fallen asleep, I know it was a long one with so much happening!