Sharing from my blog of a recent hospital experience, (https//:fightingms.uk) Too close for comfort Comfort, it’s not really the best word, yes I would love to be content and comfortable, but that certainly hasn’t been the case lately, far from it! Living with Primary Progressive MS, is not easy at the best of times, even with DMTs (Disease Modifying Treatments), in my case a drug call Ocrevus, which slows the progression of the MS, it’s a drug that I have been on since December 2020, getting infused at hospital every 6 months. One of the draw backs is that this drug makes me immunosuppressive, so open to attacks. Last June I went down un-expectantly with pneumonia and pleurisy, which flattened me despite a reasonably quick recovery it was a warning that infections could cause me problems. Add to this the run of regular UTI’s (Urinary Tract Infections) as a result of the SPC (Super Pubic Catheter) that was inserted in December 2022, again puts me at risk to a degree, but generally treated with Anti-Biotics, so not normally too much of an issue other than feeling rough for a day or two, till the medication hits the spot. Back to a couple of weeks ago and I was getting some pain in my kidneys and starting to feel a little rough and spent most of the day in bed and a restless night followed with pain and discomfort, this started to progress more throughout the Tuesday, so I managed to get in contact with the Doctors and 111. That eventually lead to an a evening appointment with the doctor who took the usual urine sample and said yes you have a UTI (well I knew that, but this was more, I knew it as wasn’t the normal type of UTI that I suffer with), anyway, I was sent packing with some pain relief and more Anti-Biotics… By this time I was struggling to eat and drinking was hard work too as sickness started to kick in too… Another bad night followed, so in to the Wednesday, the pain killers weren’t touching nothing, neither were the Anti-Biotics, I was going down, yeah, full on “Man Down”. My wife got concerned again, so a call through to the doctors again, who suggested that she should ring 999…. Oh not again, we had this with the Pneumonia! So after a short wait the ambulance arrived. The guys were great, but really worried about my immunosuppressive state. So they spoke with one of the specialist doctors for advice, at this point they did not want to risk me going into hospital, so it was decided to change the Anti-Biotics and increase the pain relief to a higher dose. They left after about 90 minutes, leaving strict instructions to my wife on various thresholds, that if I breach them, she is to ring 999 again. By this time, the prayer calls were being sent out by my wife and messages and prayers of support coming in, believe me it was needed, I was in still going down, nothing was working, temperature was rising, food intake was non-existent, sickness returned, thresholds being broken, so it was 999 again…. Thursday morning now, at this point I just wanted to curl up and die. I was in so much pain, so much discomfort, I couldn’t take it anymore, Lord, please take me home, I’ve had enough, get me out of here (I didn’t realise that at that point I wasn’t too far away from that point….) The paramedics were concerned, It wasn’t long before I was loaded up into the ambulance, lines put in me and then the offer of pain relief in the form of IV morphine, for the first time in nearly 3 days the pain subsided a little. There was a further top up on route to the RUH, when we arrived just before the morning rush hour to a queue of waiting ambulances. By this stage I was pretty much in a daze, one from being so tired, but also the effects of the morphine taking full hold. After a while, I was called into “Pit-stop” so the guys rolled me in on the stretcher trolley, so bloods etc. could be done, before going back to the ambulance… not long after I was taken into majors, hooked up to more IV anti- biotics, saline for rehydration, still no food, and various tests and doctors. There was some real concern about my infection markers from my bloods, and they were trying desperately to get whatever the infection was under control, still I was going down. After getting to A&E at about 0800, I was moved to a ward (Medical Assessment Unit) about 1700-1800 (ish) as really cannot remember. So I had been admitted, this was to be the longest single stay in hospital that I have ever had. The following morning (Friday), I tried a bit of breakfast… I managed two bites of a piece of toast…. (Those that know me, know I like my food….) Then it was the doctors round, so what’s Up Doc (Duck)!!! Well, she said, an infection marker in the blood count is considered as anything above 10 in the CRP, well my CRP had hit 500 (501), she said that I was lucky to be here and somehow hadn’t gone in to sepsis… Wow that was too much to be told, how serious is it? Very was the reply. Yet another change to my anti-biotics to target the kidneys, as basically the UTI, had backfired into my kidneys and that was causing all the issues… I was out it, the weekend passed, with more drugs, pain relief and sleep, sleep and sleep, plus some visitors. On the Sunday night I was moved again onto a main ward within the hospital, to continue with treatment to bring the infection down, more bloods done and thankfully by Monday morning there was progress as the infection markers in the blood count were down to 250, so halved, but I was still so unwell. My phone had all but packed up too so communications with the outside world was limited as well. But I did manage to get a message to my MS specialist and MS Nurse, as I had a pre-booked appointment for the Tuesday, which I obviously wasn’t going to make, but seeing as it was the same hospital, would they be able to come to my bedside. So in an unusual twist, my MS specialist and MS nurse came to my hospital bedside, but not with the news I wanted. Due to this infection and the pneumonia last June, they stated that I could no longer be on my DMT, so they would be stopping the Ocrevus infusions, so that I can get my immune system back up and running, but that is now against the deterioration of the MS, for which was being prolonged by the Ocrevus. I was also told that there are no other suitable drugs that I can take either, so a bit of a kick in the guts, but is the lesser of two evils according to the specialist. Some good news, did come when the Doctor came round, following more tests and ultra sounds, saying that if my blood markers came down I could move to oral anti-biotics and then potentially go home on Wednesday afternoon. So new bloods taken, and yes the blood count infection marker had now reduced to 75, so the switch was on to oral meds rather than IV and the potential to go home after 6 long days in hospital, where I was too close for comfort to going home to meet my maker. I’m now at home recovering and trying to gain strength, this has been one long and hard battle, and a few things put in to perspective regarding my mental health and self-harm as well. I am thankful that I am still here and don’t particularly want to go to those depths of illness again. I now have the bruises too from over twenty needle stabbings, as my veins collapsed too and getting a line or taking blood from me was nigh on impossible… at one point they had to use ultra sound to find a good vein to lance….. I do not want to go through that again… I’m still here and I’m still #fightingms PS… Thanks to all the paramedics, nurses, doctors and health care assistants, you are all fantastic xx