Hospital stay where I baffled my doctors and consultants: part 3:

Week 5: day 29: Monday 27th october 19:

Saw doctors and consultants they said they happy with me. The consultant said "tomorrow physiotherapy needs to see me and start and the eye doctors need to look behind my eyes to see what is going on with my focus". He told me the aim for this week is to get my temperatures down and potentially I could be going home by the end of the week but that's all being well and depending how things go. He said "he won't send me home having tempetures or riggor fits". So that is reassuring me.

Week 5: day 30: Tuesday 28th october 19:

I saw the consultant and doctors this morning and they once again said they happy with me, and they want me to have a pet scan, when they said that I thought what is it going to show a elephant?? 🤣..

They said they want me to have the test as it may show where my infection is hiding as they haven't managed to find a infection or whatever is making me poorly yet with all the scans and tests they have done so far. They then informed me that the eye doctors should be coming to see me today and they physiotherapy too. I mentioned to them that the canula in my arm is stinging (which normally means that it's starting to stop working as my veins give up after so long), they said "they are going to get me another picc line fitted at some point down in IRU/xray" as they know how hard it is to get any canulas in my veins as they don't last in my arms. 1540pm I saw the physiotherapist and they said "the frame is mine for when I go home but to only use inside/indoors, and if I go outside or out anywhere out and about i must use my wheelchair and then things will hopefully improve over time", So they happy for me to go home on them rules. Later in I went down to IRU/xray and had my picc line fitted.

Week 5: day 31: wednesday 29th october 19:

Last night I managed to sleep quite well but before I managed to sleep quite well I was riggoring for like 30 minutes plus. I rang my bell and asked for some pethadine, I then got told by a nurse that my nurse was coming to me next. 30 minutes later I was still shaking so I rang my bell again and I get told the nurse is on her way so I said "I hope so as I would like this shaking to stop" I then get told by a nurse that "the nurse is coming and can I stop making that stupid noise", ( when I riggor I make different strange noises which I cannot help they just happen). I said " the shaking is causing me extreme pain", so I continued waiting and waiting, shaking and being in pain the whole time. 30 minutes later I rang my bell again and got told the nurse is busy, I said crossley "I'm a poorly patient and I've now been waiting and riggoring over a hour now, I'm in alot of pain but obviously that don't bloody matter". The nurse didn't like it so they told me off. 

At 10:09am I saw a junior doctor and 2 other student doctors, he said "dr lawes came up to see me yesterday but I was down in xray/IRU having my picc line done so apparently he's going to pop up at some point today". The junior doctor agrees that a pet scan does need to happen and he said that he doesn't know why it hasn't been done before now. I said "I don't know you will need to ask that question yourself". He said that he is happy with me and how my progress is going and he told me that we now have got to wait for the pet scan to happen and then once we have the results of the pet scan we can go from there. He said that the doctors want the nurses to do more blood cultures done to see if anything grows - they said they doubt anything will grow as my other ones havent but they still want new ones done. I've still got to see the eye people. 

At 11:28am I saw doctor lawes and another consultant, he said that sinusitis sometimes produces some horrible fungal stuff that could be hiding in my sinuses and could be what is making me so poorly, and that my pet scan is potentially on Thursday.

Week 5: day 32: Thursday 30th october 19: 

1130pm last night I had a slight temperature where they gave me paracetamol to bring it down then I finally got to sleep about 0019am and slept all the way to 0600am. So I felt last night was a improvement as it's the first night in a long time where I have had uninterrupted sleep where I didn't constantly spike a temperature. 

 This morning I woke up from a very deep sleep needing a wee, so I got up to go to the toilet but couldn't get there in time and so it ended up me having a accident. Once all cleaned up and dry I then went back to bed and had another riggor fit, when I saw the doctors they said they need to find out a few things ready for my pet scan tomorrow like can they use my picc line or will I have to have a canular inserted,etc. I asked them about my medication as I was worrying about it as I struggle taking them with juice let alone a small amount of clear fluid while I'm nil by mouth. The doctors said that 1 day not taking them will not hurt so I can just refuse them if a nurse offers me them. The doctors have agreed to up my oramorph temporary as my arm is hurting where the picc line is inserted in my arm, but unfortunately the pain relief isn't touching the pain at the moment. The doctors told me that it would be a good idea for me to eat a sandwich or pasty for breakfast aswell as eating proper breakfast tomorrow as otherwise I may be extremly hungry as my appointment for my pet scan is book for 5pm and the appointment takes 2 hours.

Week 5: day 33: Friday 31st october 19: 

I saw a doctor and she said I'm only spiking 4 tempetures in 24 hours (which is a good thing), they told me that they taking me of my pethadine but if I need it when I have big riggors they will let the nurses give it to me but the nurses would have to apply to the doctors for them to re-prescibe it. The doctors upped my oramorph last night, as I saw a night doctor about my hands and feet which is helping the pain but for how long for I don't know. The doctor said they going to look at my pain relief medication that I'm prescribed and see if they can change me onto something that will stop my pain and something that will work good for me also.

 Once I got to sleep last night I slept till about 6am where I went for a wee and then spiked a tempeture. The rest of the night I slept right through which was the 2nd night where there was a improvement in my sleeping. Last night when I was shaking I got a few awful pains up my nose which I told the doctors about and they didn't seem to worried about, they said that is anything comes out of my nose when I get the pains the nurses have to get a sample for it to be sent off to be have a look at. At 5pm I went down for my pet scan in a wheelchair by a porter and a nurse had a come as an escort. We went pretty much right to the other end of the hospital. Before I left the ward I had to have a canular inserted in my arm as they dont use picc lines. 

*please read about my pet scan on another section in my blog named 'when I had my pet scan- 31st october 19' *

I got back onto the ward about 19:54pm and I started to eat and drink but because it was so long me being NIL by mouth the feeling of feeling hungry was hardly there so I ate little bits and drank little bits untill I felt more hungry and thirsty.

Week 5: day 34: Saturday 1st november 19: 

Last night I had a rubbish sleep even though after my pet scan I was knackered. All through the night i was drinking lots so it was making me wee lots too. This morning I ate a small breakfast (as I don't really like breakfast) I then had some pain relief for my hands and feet and picc line as they all hurt. The scan yesterday I thought wasn't too bad, but I was in so much pain because I wasn't allowed my oramorph while being NIL by mouth so the pain was excruciating. Yesterday at the pet scan I couldn't physically walk to the point I nearly fell on the floor because my legs and feet wouldn't hold me up. The scan was basically a CT scan just strapped in with soft straps rather than pinned down like in a MRI scan. Today I saw the doctors and consultant who looked at my hands and feet and noticed that my knuckles, hands, ankles and feet etc, are all swallon and are also a bit red and hot. The consultant said "it possibly could be a immunity thing called 'gout' but they are getting the rheumatologist to come and see me to have a look", the pet scan results havebt came back yet. 1815pm I've got to have a blood transfusion as my haemoglobin is 65.

Week 6: day 36: monday 3rd November 19: 

I had breakfast and then had a nap, then when I woke up I had my obs done, had a slight temperature of 38.2°c but I didn't feel cold or shaken for a change and I'm not riggoring either which is a good thing. My hands have a little rash like one of the doctors asked me about previously, so I toke a picture but the picture didn't show the rash very well. I then went to the toilet and when i came back i had a very big drink as i was really thirsty and now i feel like a have a sore tounge. I told the nurse as i have never had a sore tounge before so it's a new symptom and they said that they are going to keep a eye on it but they don't think it's anything serious. I said to one nurse "its needs to be documented as with me that is strange to have a sore tounge and same as having sore swollen hands and feet it's not normal for me". I told the nurse that if I feel my tounge start to swell or hurting more I'll ring as I don't want it to swell up to be honest. My pet scan results are back and they say that its shows a sepsis type infection in my belly button, and that my liver is glowing (they said it could be to do with a drug reaction or something else), and that my sigmoid colon looks as though it could have polyps there so the doctors are arranging for me to have a camera test up my bottom to have a look. 

Week 6: day 37: tuesday 4th november 19:  

0955am I am going for the camera up my bottom soon to have a look to see if I have polyps in my sigmoid colon. The nurse did the enema (liquid stuff that gets squirted up your bottom to make the faeces come out so all is clear for them to see inside your bowel). A consultant and junior doctor came to see me and they have said that they believe that I could have a auto-immunity disease so they said the rheumatologist needs to see me, the doctors also said that they are also putting me on naproxen one tablet twice a day (breakfast and teatime) for the swelling to hopefully go down on my hands and feet etc. As naproxen is a anti-inflammatory medication and it also should help my pain too. Also they are putting me on 4 steroids once a day for a little while. So I'm now wondering what autoimmune illness I'm now going to be diagnosed with now. The nurses told me I have got to keep laying  on my left hand side while the enema working and got to stay like that untill I've had the camera test done. Once I had the camera test done the doctor came and told me that they found no polyps where there could see but as they couldn't totally see all they wanted and needed too, that means at some point in the future (11th december 19- see when I had a flexi-sigmoidoscopy blog entry) I'll have to have the test done again. Later in the day all I kept doing was pooping 🤣.

Week 6: day 39: Thursday 6th November 19: 

At 6am i woke up from a good nights sleep which i had no temperatures during it. When I woke up I had extrenly painful hands and feet so I rang my call bell and got the nurse to get me some oramorph, breakfast came and u was eating it I could feel a draft keep going down the back of my neck, so I asked the nurse if I can stick a bandana on my head but leave my ears out. She said yes but if i get a temperature it will have to come off. At 12:23noon I still hadn't seen a doctor and I have a feeling I may have missed them as I would of normally seen them by now. At 14:15pm I finally saw a junior doctor and he said that he feels we definitely on the home straight to get me home , he said that I've got to have a blood transfusion today as my haemoglobin is still low and he said that this should be the last blood transfusion I need to get me up to where they like my haemagolbin to be. He is happy because I haven't spiked any tempetures and they are happy in general with me. I said to him that my naproxen and oramorph i think are working well together and he agreed and he said that also the steroids I'm on will also help my hands and feet also. He told me that the swab on my belly button has come back as a yeast infection so he has prescribed me some creams to put on it. 

Week 6: day 40: friday 7th november 19: 

10:14am I saw the doctors and they have said that I can go home today!!