Hospital stay where I baffled my doctors and consultants: part 2:

Week 3: day 15: monday 13th october 19:

Saw the doctor who said that my blood count has come up slightly again today, and that my infection marker in my bloods have come down slightly which is good. The nurse ordered me a air mattress as I have a open sore on my bottom.

Week 3: day 16: Tuesday 14th October 19:

Today I feel slightly better than I felt yesterday, the doctors have said that my bloods have slightly improved again. I'm still having temperatures and riggors though, and today I managed to take some of my tablets unlike yesterday where I couldn't.

Week 3: day 17: Wednesday 15th october 19:

Last night I had a small riggor and then I spiked another temperature early hours of this morning. At 0910am I i've just had another riggor as my tempeture spiked so I was shaking loads again, so I was given pethadine which makes me stop shaking and calms it all down which is a improvement. I am feeling a bit more better today which is a step in the right direction. I was that thirsty that I drank my whole jug of juice I got at 8am by 10am it was all gone so I had to get the nurse to fill it up again. They said my neutrophils have come up again and the infection marker is going down dramatically since my bloods have been coming up. I'm really happy that I'm starting to feel better in myself again rather than someone just laying in bed poorly, shaking and riggoring and being starving hungry (as my appetite has been rubbish) and being sick, all of this and more.

The doctors said they might do a lumbar puncture on me over the next couple of days.

Week 3: day 18: thursday 16th october 19:

Last night I had a horrible night, I was having a riggor so I rang my bell, a nurse told me that my temperature was only spiked a little bit at this point. Then the nurse came in and said "I'm giving you oramorph and diazepam and we will see how things go". I said I need something stronger as it won't work as I'm shaking/riggoring so I need something to stop that and then pain from me riggoring is too much. The nurse said "well we don't want you to get addicted to pethadine so I'm refusing to give it to you as what I have gave you should be enough". 

All night i was crying as i was in so much pain and riggoring constantly. Eventually my body must of crashed with all the pain, I rolled onto my side and my right hip pinged like a elastic band. When I got woke up for breakfast my body was still shaking/riggoring constantly like the night before and my pain was excruciating. I rang my call bell and the nurses were all in handover. After handover a male nurse came un and gave me some oramorph, I was crying as I was in so much pain, as the riggors made the pains worst. He toke one look at me and said "tiffany I'm getting you your pethadine as I can see you need it right now". I said to him "thank you", then I said to him "I understand all about controlled drugs etc and normal medication as I am medication trained at work, I'm telling you now that I wouldn't take something if I didn't need it or feel I need it". He said "I know", he then gave me my pethadine and now I'm starting to feel a bit better.

Week 3: day 19: Friday 17th october 19:

Saw a lady consultant today and some of her junior doctors, they said they happy with me and they are trying not to use the pethadine now unless I have a really bad riggor fitted as they said that they won't let me go home on it. So the nurses have got to try and use other things/methods to stop me shaking/riggoring and it can be done the doctors reckon. Last night I noticed my eyes focus is a bit funny, so I told my consultant etc. And she said they will keep a eye on it as it could he something my riggors are doing when I'm having one.

Week 3: day 20: Saturday 18th October 19:

The doctors descided that they might not do my lumbar puncture till monday now. There was a very strong loud thunder storm which was extremly scary (I don't like them) and I couldn't close the blind as the blind is broke so I couldn't shut it out.

Week 3: day 21: sunday 19th october 19:

Saw 2 consultants this morning, they have descided that on monday they want me to have a MRI scan which will be having a look at my whole body but mostly at my head and sinuses, as apparently people who have stem cell transplants can produce as different type of fungal/fungas in their sinuses that can cause a few problems/infections so they are looking to see if I have that and then thet said depending on what the results come back with will depend/descide whether I'll be having the lumbar puncture on monday.

Week 4: day 22: monday 20th october 19:

Today not alot happened, I didn't have the MRI scan or the lumber puncture today not sure why, but the MRI scan is definitely booked for tomorrow.

Week 4: day 23: tuesday 21st october 19: 

I saw a consultant today who I havent seen in ages. He said my MRI scan is booked for today and it's of my head and sinuses, he also said that I've got to see someone who is going to put some drops in my eyes and look behind my eyes (as sometimes my eyes struggle to focus on things). He also informed me that I've got to have a ECHO of my heart done to see what's happening as I seem to have a fast heart rhythm and he said that could he from the infection I had in my hickman line before they removed it, and if it is keeping a infection in my heart for a long term period it's not healthy for anyone. He also told me that I may have to have a bone marrow and lumbar puncture next week as potentially my leukemia could be the thing making me poorly or I could have a infection in my bone marrow. At 12:51noon I was told by the nurses that I'll soon be going down for my MRI scan. And after that taken to have my eyes looked at. After my MRI scan has finished I came out and then I was told that I won't be seeing the eye doctors today

Week 4: day 24: Wednesday 22nd october 19:

0936am I just had another riggor fitted but I haven't spiked a temperature yet. Yesterday I only have 2 high temperatures the rest of the time my temperatures was in normal range. Then last night I spiked a tempeture at 2am. Doctors came and saw me at 11:10am and said that the MRI scan results show that I have sinusitis so I may have to see a doctor from ENT (ears,nose and throat), but the doctors are going to speak to them and  see what they say first about my MRI scan results. The doctors also says potentially I'm to have a bone marrow today on pethadine and potentially I won't have to have a lumbar puncture due to the MRI scan results. 

ENT doctors descided they want me to have a CT scan of my sinuses and then they will descide from there.

Week 4: day 25: Thursday 23rd october 19:

0730am I had a CT scan, I then later saw the doctors who have said they are happy with me. This morning I've got lower back and leg pains so they upped my oramorph, 

I went to the eye clinic which was heaving down there. So a eye assistant took me to a side room on my own as she could see I had to be careful (as was wearing my mask) and as people were coughing and spluttering she made sure I was separated from it all, the the eye assistant spoke with the eye doctors and they decided that they should take me back to the ward as I'm at high risk of catching a infection or something. The eye doctors said that they would come see me on the ward at some point but my consultants need to arrange for it to happen. My picc line is blocked so I had to have a blue canula put in and the only place they could insert it was in my hand. The doctors said they will get the people who inserted my picc line to come and have a look and if its definitely blocked/unusable then I will be having this one removed and a new one will be inserted.

Week 4: day 26: friday 24th October 19:

The male consultant I saw this morning is not happy today as he said that I should of be prioritized when I went to have the back of my eyes looked at  as he recon that I should have been took down there and then be seen and then brought straight back up to the ward afterwards. He said that my bone marrow could potentially happen today as didn't happen the other day, hopefully it will be this morning but it depends when the doctor who is doing it is available. The people who put my picc line in came and had a look at why/how it was blocked/unusable. The man put a flush down one lemin and it would squirt out the other lemin, same when he put a flush down the other lemin the same happened. He said considering the line is 2 separate lines that never connect/meets/joins together and he said he cannot work out how its squirting the opposite lemin when its pushed in the other. 

1051am I was taken to cardiology for my ECHO cardiagram the doctors mentioned the other day, when I was having my ECHO the cardiologist was telling me that they werent going to do a ECHO but then they thought they better in case it showed anything. Also during the ECHO I was told by the cardiologist that my heart rate was going fast but I was laying in my bed relaxed so unsure why my heart was going fast. 1134am I was back on the ward again. 

1551pm I have pethadine ready for my bone marrow biopsy to happen, I had my bone marrow aspirate bit done (blood taken from my hip bone) but not had any bone taken as I could deal with them taking aspirate (blood) on just pethadine but for them the take bone I would need something stronger than pethadine. Later on they came and removed my picc line from my arm as it wasn't usable as it was blocked, when they removed it they looked at the end and there was a little tiny blood clot at the end of the line,  that tiny blood clot is why the line was blocked and unusable and needed to he removed.

Week 4: day 27: Saturday 25th october 19: 

Doctors said they are happy with me and said that they are taking me off one of my antibodics and see what happens, they are waiting/holding on to whether I'm going to have another picc line as they are undecided yet. The consultant said that they going to look at my bome marrow I had done yesterday and descide whether it not they want me to have another picc line in. He also informed me that he is getting physiotherapy to see me in hospital before I go home as he said he can see the fact I can't walk very far. So whether that will be soon or not I don't know. He told me again that they are happy with me and that things are improving for me and he told me that himself or another doctors will come and see me later.

Week 4: day 28: sunday 26th October 19:

Because I kept asking for a pear at breakfast (because I had cravings for them at the minuite), and there wasn't any avalible for me to have this morning for breakfast the kitchen staff brought me a whole 5 pack of pears for me. I saw the doctors and I told them again that when my eyes try to focus I can see little wiggley lines like worms in eyes (this bit started last night), they said they going to get the eye doctor to see me in the ward. The doctor said my infection marker in my bloods is staying the same so they have descided to put me back on IV antibodics that they toke me off yesterday as I spiked a few more temperatures when I come off it. The nurse checked my obs just as the doctors came in to see me and then I started riggoring, the consultant who was speaking to me sent the junior doctor he had with him to get pethadine, he was saying really loud "pethadine now, we need pethadine now", as he could see I needed it and obviously this is the 1st time a doctor or consultant has seen me like it. So I'm glad they saw me like it as then they now understand what I'm like more when I'm having a riggor. ENT have said that there is nothing they can do about my chronic sinusitis but when it come to me having a cold/head cold or hay fever etc. I will proberly be in more pain then someone who doesn't have it.