I wanted to explain a little more about cytomegalovirus (CMV virus) after my recent experience with it, purely to raise awareness and especially for other transplant patients. Obviously I'm not a medic and can only give my own experience and events that happened to me and I know others may have had similar experiences or experiences that are very different as these things can affect us in different ways.
I'd had a busy weekend and then a late night out on the Monday. On the Tuesday I felt extremely tired, so much so I fell asleep on the settee just after breakfast, which was very unusual for me. I don't ever sleep in the day anymore, so at first I thought I was just shattered and really tired from the weekend. I decided to rest and have a lazy day to catch myself up. The following day I was much the same - totally wiped out - so I rested again. As the days went on this didn't improve and as a transplant patient I have to keep a diary and record my temperature daily and I noticed my temperature was raised.
I phoned the transplant team like we are advised and as I was going into clinic that week for blood tests, the transplant nurse said she would arrange for one of the doctors to check me over. Friday came and I was feeling really unwell - extremely tired and spiking temperatures on and off all day long. The doctor checked me over, but my lungs sounded clear and a chest X-ray was clear so he wasn't too worried and thought it looked like it was probably a virus. I was advised to stay in, keep warm and drink plenty of fluids and then go to my GP should it continue and update the team should I need to do so.
The symptoms carried on and the tiredness felt more extreme and so I went to see the GP. He increased my Azithromycin, a strong antibiotic which I take three times every week anyway to protect my lungs. I was advised to take it every day for the next ten days and see how things went. He thought it better to get these strong antibiotics underway as my temperature indicated infection. I advised my transplant team and they were happy with this, it was their next plan of action and they advised me to phone them after a week if things weren't any better.
A few more days passed and I felt no different and at times when my temperature was high, I felt dreadful, I was weary and I had very little appetite. I had a few stomach upsets, but nothing that made me think it could be something I'd eaten causing it all. It almost felt like I was being poisoned or something. I even started to Google carbon monoxide poisoning although we have alarms to detect it as I just couldn't place how I felt. I knew it wasn't the usual cold or flu though and I made my mind up that I'd phone the transplant team first thing in the morning although a week hadn't quite passed. I'd recently had one of my immunesuppressant drugs reduced so I'd started worrying about rejection although I'd only had my blood levels checked about ten days beforehand.
When I woke in the morning though I could barely move, my temperature had hit near forty degrees and I felt extremely unwell. Rob phoned the transplant team and the nurse said I probably need intravenous antibiotics and to phone the GP so I could be taken into hospital. The GP was brilliant and came out more or less straight away after speaking to Rob and when she arrived I had deteriorated even more, the high temperature actually making me sick. She did a quick check and then phoned straight for an ambulance to blue light me to hospital and within minutes we could hear the sirens screeching down our road. I was so relieved the doctor had come out to me, she was very concerned it may be sepsis with my temperature.
So my main symptoms during the lead up to this had been extreme fatigue - an unusual tiredness; high temperatures - spiking over 39 and 40 at times; irregular and sparse stomach upsets and loss of appetite. Other symptoms of CMV can be joint and muscle pain, swollen glands and a sore throat, but I didn't experience these.
CMV can go virtually unnoticed in many people, but for those with weakened immune systems it can cause more serious symptoms: visual problems, pneumonia, retinitis and hepatitis. In a person with a weak immune system the virus can spread rapidly throughout the body damaging organs particularly the digestive system, lungs and eyes. It is a common virus belonging to the herpes family of viruses such as chickenpox and glandular fever and is primarily spread through bodily fluids, most people contracting it in early childhood, but then the virus will lie dormant in the body's cells forever.
After transplantation if the recipient or donor or both are carriers of the virus then patients are treated with an oral medication called Valganciclovir to prevent re-activation of the virus due to their weakened immune system. This treatment usually continues for at least six months. The virus is at most risk from re-activation in these first months post transplant. I had this course of medication for the first eight months after my transplant as CMV had been detected following my transplant.
At my local hospital I was admitted and treated with intravenous antibiotics for several days as we still didn't know what was wrong with me, but my symptoms did not improve and the doctors were quite flummoxed with me. I saw quite a few consultants over the five days I was there and they worked with my transplant team, but were most concerned that my temperature still kept running high and that something was still amiss. They were also quite bothered that they didn't have the expertise to deal with a heart and lung transplant patient. It was agreed between the teams to transfer me by ambulance to Papworth so they could investigate matters further.
I was very relieved once I arrived at Papworth and my consultant was by this stage thinking it could be CMV virus, although it's unusual for it to re-activate this far down the line. He decided we should start the treatment straight away before we had the blood test result back and while they did more investigations to get to the bottom of things. I started on an intravenous drug called Ganciclovir, but was warned that it may be damaging to my kidneys so treatment may have to be slowed depending on my kidney function (I already have some renal
failure). The results of the CMV blood test take several days to come through and when they did it was confirmed that I had CMV and that the levels of it were extremely high. There is a complex measuring system for CMV, and I don't pretend to understand it, but I was told in simple terms that the level should be in the low hundreds and advised that my levels were currently at circa seventeen million, so things had become quite serious and my liver function tests had also revealed inflammation caused by the virus.
We then had to wait a week before another test could be done to see how the virus was doing and if the levels were lowering or not. During this period the team had expected to see some improvement in my symptoms, but I wasn't improving much at all. The team began to worry the treatment wasn't working or that the virus was a strain that's become resistant to the anti- viral drug they were using or that I may even have another problem as well as CMV. I therefore had more tests to try and rule out if I had another problem or not and samples were sent off to check if my virus was one of the resistant strains to the anti-viral drugs. It all felt very worrying and scary. I couldn't help but wonder about rejection again and worrying about what would happen if the drugs weren't working.
I was warned that I would be in hospital for quite a few weeks even if the drug was working and that they had an alternative drug lined up to try called Foscarnet, which they would have to use. My team weren't keen on this option as it is a very toxic drug on the kidneys and therefore it was going to be quite damaging on them. I knew I would have the test results back on Christmas Eve, so as we headed towards it, I was becoming quite worried. I'd been told I'd be able to go home on Christmas day for a few hours if they found the drug had lowered the virus levels, but at the same time, as it was the christmas period the team were organising the alternative drug in readiness. My consultant, however, did keep saying it may be because the virus levels are so high that it's taking so long to see improvement in my symptoms, so I hoped against hope that this would be the case and tried hard not to worry.
Christmas eve morning came around and I found out that my test results showed that the virus levels were lowering, still much too high but now a few million compared to the seventeen million of a week ago. Luckily my team were happy that things were now going in the right direction and it was decided that everything was just taking time as the virus levels were so high and that they would continue on the treatment I had been started on. I was so relieved and pleased this was the case and it was the good news that I'd hoped for. I was allowed to go home for a few hours on Christmas day and have lunch with my family and this all made my Christmas so special.
As the week went on my symptoms began to improve and my temperature lowered and I began to feel better than I had. The biggest problem I had though by this point was with my veins. By then I was on my third week in hospital and on IVs and having regular blood tests. My veins are only small and thin and the drug is very toxic, so every time I had a cannula put in, it would only last for half a day before it needed changing again, because not only was it sore at the entry point, but the drug caused bruising, swelling and blistering up my arms as my veins couldn't cope. It was decided to change to using long lines, as they are supposed to last much longer, but I was only managing a day or two using these, as my arms were so pianful. It was a struggle for the doctors and nurses to find any veins for the next line each time and they were actually having to undertake ultrasound scans on my arms to try and locate any decent veins. I had been booked to have a Pic line put in my arm at Addenbrookes to ease things, but as it was Christmas there wasn't any availability to have this done until after the New Year.
Luckily on New Year's eve, my test results came through showing that my CMV levels had lowered again and although they were still in the thousands, they were low enough for me to switch to the oral medication Valganciclovir. It was a huge relief as it meant no more IVs or pain in my arms and also that I could go home and start my New Year waking up at home in my own bed!
Now I need to go to clinic each week to ensure the virus levels are still decreasing and check my blood levels as my immunesuppressant drugs had to be altered quite drastically so I could fight the virus and to stop it going out of control. It's going to take some time to get this all back in balance once more and probably at least six months on the oral medication for the CMV. I also had to be taken off some of my more routine medication, which helps to protect my heart because of the damage to my liver. Hopefully these will be reinstated soon as things become more settled.
So that is my experience of CMV virus, not an easy one, but it could have been much worse and I'm getting myself back on track now. I wanted to share it and just say if you're a transplant patient and are experiencing symptoms that you're not quite sure about then it's worth asking for a CMV test at the outset just to rule it out if anything. Everything is easier on hindsight and after the experience, but obviously if I come down with any more unexplained viruses then it's the first thing I will be asking!
I'm grateful to all the staff who were involved in my care and who played a part in helping me through all this from my GP, the kind and caring paramedics who ambulanced me to both hospitals, the staff at the Lister Hospital and the transplant team, physiotherapists and all the staff on Baron ward at Papworth. Thanks to all my family and friends too for all the lovely encouraging messages, cards, pressies and popping in to see me. It really does make a massive difference when things are feeling difficult.
I have taken some information on CMV in this blog from the NHS website below.
NHS CMV
I would also be interested in hearing about others' experiences of CMV and especially when it may have activated, as it appears to be more common in the first year rather than a few years down the line.
