Showing posts with label CMV. Show all posts
Showing posts with label CMV. Show all posts

Tuesday, 20 June 2017

The Fitbit

I can't remember the whole context of the conversation, but someone recently made a comment to me about Fitbits and personal fitness trackers. It was something along the lines of 'and these people who wear these wrist band things and are constantly checking on their fitness all the time...' The person wasn't so impressed with the idea of fitness trackers and disapproved of them. I found my eyes casting down towards my wrist and staring at the Fitbit I was wearing. Should I be embarassed I'm a Fitbit wearer and admiit that I'm actually quite a big fan of the fitness tracker? I'm not totally obsessed with my Fitbit, but my fitness is important to me, however limited I become and I've found my Fitbit a very useful tool to measure what I'm up to. 

I bought my Fitbit at the airport a couple of years after my heart and double lung transplant, we were en route to Rome. We were about to embark on a three week trip around Europe. Rob and I enjoy visiting cities and I'd always been curious about how far we actually walk when we are exploring - I always thought it may be much further than I imagined. That was my main motivation for buying it, together with the fact I'd just returned from taking part in the British Transplant Games and keen to build up my fitness even more, was trying to aim to walk the NHS recommended 10K steps per day to help me. I thought the Fitbit would help me to track this target. 



On the holiday, I found that yes, we did walk far more than I might have guessed, exploring museums, galleries, parks, shops and ambling around streets and I had a great headstart on my new 10K per day target. Way exceeding this target most days, I returned from holiday feeling fit and well and quite pleased with myself and determined to try and keep up my 10K steps using my Fitbit to track my progress. 

Recently there's been research and press reports suggesting that 10K steps per day may be too many steps for some and may be dangerous to their health and fitness. Well that's just common sense surely? If you you've been unwell and recovering from an illness or an operation then it may not be sensible thing - things need to be taken more slowly. Having been chronically and terminally ill before my transplant I know that the 10K steps wouldn't ever have been achievable for me then. It was still important to walk, move around and keep as fit as possible in order to withstand the ongoing challenges of poor physical health though.

After my holiday, wanting to maintain that healthy holiday feel, I continued with my 10K steps target and using my Fitbit tracker to keep a measure of how I was doing. I tried to motivate myself with new ways to achieve it and even decided to have a dog, so I had no excuses to stop me walking every day. Before Ted, my cocker spaniel arrived though, my health took a dip and my 10K step target dwindled away while I was poorly for a few months with CMV virus and then recovering afterwards.  

The Fitbit became really useful in helping me gauge how far I could manage to walk, it helped me readjust targets and aim for more as I recovered and started to get back on my feet again. It helped motivate me in recovery, as I could see a difference in how much I was walking each week and over each month. 


I was lucky to find myself back to full fitness, with Ted my cocker spaniel in tow, smashing the 10K steps together and becoming the strongest I'd been for years. My lung function on my regular clinic visits had always been pretty good, at 90%, but suddenly my tests were showing 100% lung function, which was totally amazing after what had been a big setback and for someone who'd undergone a lung transplant. 

Although I managed to achieve this, there were to be more trials and tribulations with my health unfortunately due to the virus that originally set me back. It reactivated and led to a period of acute rejections with pseudonoma infections. With my new lungs now damaged and working at 75% it was back to the drawing board once again. I used my Fitbit to challenge myself with new adjusted and lowered targets aiming to build myself up slowly but surely. I hadn't managed to improve on this when I caught a bad bout of flu alongside a form of infectious pneumonia.

This time recovery has been a long slow road - there had been too much strain on my lungs this time coming on top of the previous acute rejections and organising pneumonia, which my lungs are still and were at this time being treated for on top of the new problems.  My lungs were completely struggling and the doctors didn't either bother to measure my lung function while I was in hospital, as I couldn't even breathe properly let alone do blows for tests. There were no steps happening, but the Fitbit was actually useful as a watch as time ticked away in the room I'd been isolated in. I was even surprised when I realised how much I'd actually been using it purely as a watch all this time. 

During these periods of illness and dependance on higher doses of steroids, my sleep was poor, often interupted and I was suffering from insomnia. The Fitbit helped me gauge my sleep patterns and see that as I improved, my sleeping although not perfect was improving. Again, this was reassuring and encouraging. 

A few months on and it's felt a slow progress, but using the Fitbit, I can see in black and white how far I've come. After about a month at home, I was managing around 1K steps a day and 7K steps a week, only a fraction of what I'd been used to, but it was something and a good start. I figured the more I could move, the more I could help clear my lungs of infection and help them to work again. Weeks on and I could see this improve more and more - another month and I was managing 2K to 3K steps a day, around 17K steps a week, undertaking small walks and activities over the day. 

This helped me confirm in my mind that things were improving, that I was actually making some progress - sometimes it's hard to see how you are doing because of the frustration of not being able to do what you could once manage. It can feel one step forward and ten steps back on a bad day. A few months on and I'd built my lung function up to 40%, which was still very limiting with breathlessness, but I was walking again and managing to be out and about with family and friends and I was so grateful for that and encouraged and motivated by the fact that there was some improvement. 


Following some further additions and tweaks in medications I was back in clinic this week to see how I'm getting on. Fortunately following a few medication changes I'd been feeling better still and able to do more and using my Fitbit data I was able to say I'd gone from only being able to do a thousand steps or so each day to now being able to do 4K steps on most days and had done 28K over the last week. I was delighted when my lung function results reflected an improvement too and showed my lung function had increased and is at 50% function now. 

There is still a way to go yet back to fitness yet, my consultant has explained that it's unlikely I will be able to reach the high lung function I once had, but we are all encouraged there's a significant improvement and I'm going to carry on using my Fitbit to help me increase my walking further if I can and hopefully in turn push my lungs further and squeeze that extra bit more from them. For me, I've found that using a Fitbit has been a very positive thing. 

What are your thoughts on Fitbits? 


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! 



Thursday, 24 March 2016

Easter

It's very nearly Easter and time for a restful few days I hope. Lots of things have been happening during March and since my book launch for 'Life is for the Living'.



I've had a few clinic visits for tests and monitoring this month following my episode with CMV virus at Christmas. It's taken time to get over it and I'm still having my immunosuppression increased and being closely monitored as my doctors want to keep a balance of no rejection levels and no return of the CMV. I'm also being kept on the Valganciclovir drug to stop the CMV returning. My blood pressure has been rising again too - a side effect of the immunosuppression drugs. I've had a new drug Ramipril intoduced - as well as the Amlodipine which I'm already on- to help lower it and so far it seems to be doing the trick. I'm still waiting for blood test results, but if they are ok I'm due back at clinic next month again. It feels reassuring to be checked regularly at the moment and I've just decided to let the doctors do the worrying.





I've been feeling really well despite all this, and the only symptom I'm still experiencing is tiredness. The problem is I don't know if it is a symptom or not, as since Christmas I've been really busy with editing, publishing and launching my book. Mostly though, I've been running around with Ted, our puppy. I think I'd forgotten how much hard work having a puppy is - I was only 21 when I last had a puppy so it's a very long time ago! 


I'm usually up and about with Ted just after 6 in the morning, so it's early starts to the day - sometimes we are out and about in the park very early and I try and walk him twice a day. I think it may be the early starts that make me feel extra tired by the evening, as since I fell ill and even after my transplant I hadn't been getting up much before 7.30am. I'd always seen the  extra lie in as a bonus for not working anymore. So I think the extra tiredness may have come with one very cute cocker spaniel pup. On the plus side Ted is keeping me active and has helped me build my strength back up again since Christmas.



I'm planning a quiet Easter with lots  of fresh air, walking, reading and rest. And talking of reading - fancy a good book to read this Easter? I know a good one - Life is for the Living - look it up on Amazon  - £8.99 for a paperback and £3.99 on Kindle! The link is on the side bar.



Have a very happy and peaceful Easter everyone.