Wednesday, 29 June 2016

Monitors and Bloods

Life post transplant can have its ups and downs. It's all part and parcel of what to expect when you have a permanent medical condition and need a serious amount of drugs to control it and those things have to be carefully managed and monitored for life.   

During the last month or so I've had a few things happening that have required a little closer monitoring than usual. 

Since Christmas when I had the CMV virus I've been back at hospital quite regularly both for clinic and extra blood tests. The problem being that although the intravenous medication I had during my time in hospital shifted the virus, I still needed to be medicated with oral tablets to ensure the virus was kept under control and I needed regular blood tests to check that it was. 

It can become complicated when your medication is altered as being on a whole range of medication means that it can throw the whole balance out. The valganciclivir drug used to control CMV can have  an impact on white cell counts and this in turn can affect the impact of the immunosuppression drugs. 

In my case, I had to have one of my immunosuppression drugs reduced so I could cope, as the drug was making my white cell count too low and causing side effects, so I had frequent blood tests to keep ensuring I was on the correct doses of drugs to stay safe. 

After six months of treatment for CMV to try and ensure it doesn't reactivate, I then needed to come off it. The problem with CMV treatment is that the virus can become resistant to it and that may be a dangerous thing too. So now we've reached June, I've been taken off the drug. When you come of the CMV drug, there is a chance it may reactivate itself again, so again I have to have a series of blood tests to ensure that the levels of CMV in my body is low enough and then at the end of these another MOT at clinic. Following all that and if there is no reactivation of the CMV,  then the immunosuppression  may need adjusting. It is therefore a complex juggling act for my doctors to keep on eye on. 

It's not as easy as just getting better, every blip takes a lot of managing to get through and over properly. I'm in the middle of all this process at the moment and this week I found out that the CMV virus had reactivated itself once more, so things aren't quite going according to plan. I wasn't so surprised as I'd been having some 'off' days and suspected something wasn't quite right. Next up is more blood tests to see how the CMV levels are and then a decision what to do next. 

I'm also wearing a heart monitor this week too, following a blip I had a few weeks ago when I had to be rushed into hospital. It's just to be double sure that nothing untoward is happening with my transplanted heart and fingers all crossed, hopefully it won't show up anything. 

On a positive note none of this has stopped me getting out and about and enjoying life. I've been working hard at keeping well and walking every day with Ted. We've found a few new walks this week out in the countryside and I've been out and about with my camera as you can see. We also had a great afternoon on Saturday helping with the Papworth Transplant Support and Social Group and I've been thrilled that Papworth hospital has been supporting my book on social media too. The book is also available in the hospital shop - it was quite a nice feeling to actually see it on sale in there! 

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