So what happened to me?

I had obviously spoken far to soon as within hours my January 1 post my entire world came crashing down around me faster than you could say blog. I remember tidying up around the room and began to feel a tad cold so put on my hoody jumper and then BANG!!!

I began to shake and shiver uncontrollably just as a nurse was walking in the door. I managed to get on the bed as the coldness and shaking got worse. I was curled up in a ball, teeth chattering away not knowing what was going on and that all I wanted was it to stop.

“Mark your having a spike and your temperature is 38.something, try to breath and calm down” was what I remember followed by “Mark we are going to give you something to make the shaking stop and it works quickly”. I felt this cold sensation travelling up and around my picc line and within a matter of minutes could feel the shaking begin to ease off. I think I had been given a large dose of Pethidine, other than that they had found my secret stash of JD. Once my body had relaxed full bloods and cultures were taken and off to the lab they went.

Iv paracetamol and antibiotics followed to help reduce the temperature that it did to begin with before a few hours later and it was off again, same uncontrollable shivering and shaking and this time my temperature was over 39 degrees. Much of the same treatment happened to reduce my body temperature before it happened again and again.

Throughout the night and into the following day, my body continued to spike and reached temperatures in the high 40 degrees area. I remember one nurse just continually bathing my head and body through the night to help reduce the temperature. Most of the time I was either hallucinating or totally out of it as my body was shutting down to deal with an infection.

Infection yes! Infections are common in transplant patients so it wasn’t anything the staff hand not experienced or dealt with before. However, when your name is Mark and you have what is called a Gram Negative Bacilli also known as Klebsiella pneumoniae then things look a little less rosy. A Gram Negative bug is harder to treat as it species is not known and it takes time for the culture to really grow before they have a better idea plus, of the 11 antibiotics used for treating this ‘type’ of bug, 4 were Sensitive to a response, 5 were Resistant to a response, which left two that’s responses were Intermediate. Things aren’t looking good here unless a new antibiotic is created to target the exact bug species. Anyway, I was put on one the antibiotics which showed a vast improvement with 48 hours but then had to come off of it as I was still spiking (not as badly) and ran the risk of it damaging my kidneys. I was quickly moved onto the last option antibiotic where I can say I began to improve rapidly.

So I spent the next few days recovering having beaten myself half to death. I had no energy, was continually tired, my body hurt and just wanted it all to stop. I have never been so scared in my life, I thought it was over for me!

As I improved over the coming days I was kept well informed with the progress of the cultures and my spikes were reducing in frequency. One of the Drs came into me and said “Mark you are doing so well and we think we have hold of it, however, just to be sure we are going to remove your picc line to check for infection and to reduce the risk of a possible infection.” “Not a problem” I said “lets do it”. So out came the picc line and the end was snipped off and sent straight to the lab for testing. In return I was given a cannula in the back of hand that is even more of a pain to keep dry?

The hours pass by with only minimal spiking which I could deal with then the Dr returned and said “We have you on the right antibiotic and your bloods are showing an improvement however” I then began to feel my stomach drop “due to the seriousness of this bug you are going to have to stay in hospital for two weeks so that we can continue your iv antibiotics three times a day and monitor you closely. I’m so sorry Mark.” All I could say is… your kidding me? After we had discussed the whys and wherefores the Dr left me to take it and allow me to accept it as it is and phone Olivia to let her know the news. Sometimes things just couldn’t get any worse.

But hey, things always come in threes!

On the first day I really felt well and even strong enough think about blog updates, I was out on my morning ward corridor walk but a very slow and short walk as one of the nurses stopped me and said “do you find you are sniffing a lot at the moment and have you a runny nosey” why “yes I replied but it has only really started this morning, why?” “I will be in to your room in five minutes if that’s ok?” so back to my room I went feeling like a naught boy. In came the nurse and took a mouth and nose swab along with the rest of the ward and had them sent off to the lab.

Less than 24 hours pass when I was told by a nurse to stay in the room as the results have come back positive for a flu virus (I wasn’t the only one on the ward). Then a team of Drs and executives cam in to tell me that I have picked up a flu strain which in my neutropenic stage is dangerous so we will have to start some tablet medication and move you out of this room into a more pressurised room to contain me. I just laughed and said bring it on lets do it. Im not sure some of them could understand my positive sense of humor. So came the repack again. I put everything on the bed and let them wheel the bed into my new abode. Here I had to stay for the rest of my time in hospital and not allowed out onto the ward (unless I was going straight out the building once out of the neutropenic stage). This wont break me!

The flu virus got a little worse and aggravated my already tired body and just spent the next two days sleeping until today… Im back on track.

Where I am today Day +10

Both the infection and virus are under control and I continue with the various medications.

Since Day +4 the ms symptom changes that I have experienced are: vision loss/blurring, tremors in the head and hands got really bad, temporary total mobility loss to hands and feet, loss of bladder control, pains and spiders through the legs and extreme fatigue and tiredness. All not surprisingly really as my body has being battered by infection and fevers. All are beginning to get back to a level of normality but it has taken a lot of strength out of me.

The main reason I am here, the transplant...

My body is showing positive results with my white cell count slowly increasing to 0.7 OH YEAHHHHHHHH. Over the last 6 days I have had 5 platelet transfusions which is not uncommon in any transplant procedure and 4 G-CSF injections to help stimulate the marrow in now producing its own white cell. Yes my body is now beginning to build its new immune system (slowly) on its own. What a feeling this is? This is what it has all been about and although the last 5 days have been life threatening I am getting through it a stronger more committed person than ever before. The results don’t lie they are on the up and that is not just down to me but the amazingly dedicated team of medical staff here at Hammersmith hospital. Without them, I would not be here writing this blog today. My heart thanks you.

And on that bomb shell… Thank you for bearing with me on this one and will update you as soon as I hit the magic 1.0 marker on my white blood cell count.

Big love

Mark x