Wed 17th Oct
I woke up 6am and left at 7am with my mum and dad. I decided not to drive as i know a 3hour journey then tests i would be to tired. We arrived in Newcastle around 11am and headed to ward 29. A nurse greeted us and said my ward was busy so i went to ward 27 downstairs. I got a room with no toilet and was told it was maybe best not to share toilet for cross infection but to use commode (toilet on wheels ) . Nurse asked some questions, put onw rist band, swabbed me for MRSA, asked for urine and sputum (mucus) sample and took some bloods. She also weighed me. I used the commode to give urine sample but after that i decided i felt to uncomfortable using it haha especially if i ended up needing a number 2 hahahaha! So said i would take the risk using shared toilet.My transplant co-ordinator (special nurse) came to chat for a bit asking how i had been over 3months, what results i was hoping for. Sometimes people feel they have detoriated and say i feel i need to be listed to get these lungs where other patients may feel they have improved /stayed the same and say no im still ok as i am. She said i wont need all tests as my last 3days visit but just some. I was glad to hear that. To cram 3 days worth of test into 1 was quite daunting. She also said the team would be round to give their verdict tomorrow around 12pm.It was now 12.30pm my mum and dad went to canteen for lunch and i waited in room. A porter came and took me down to lung function, i waited 10mins to be seen, i said to guy i was told iv only to get one test here, he looked through notes and said no you've got 5 different ones. I was gutted as by this point my eyes were starting to close and i knew they are hard work doing each one 3 times. This guy was different from my last trip- if u had read it i said i ended up having fits of giggles then. Well onto my third test this time where u have to do a sharp blast out, i made a funny snorting noise and the giggles came. The next bit i have to do a sharp suck in. To just as i was about to breathe in the guy goes "SUCK IN" and yes i did laugh but didnt tell him why.... Then a member of staff comes through the curtain and says "Oh hello i remember you from before" and he looked at the guy and said "the last time she was here she was giggly, has she been giggling today and he replied yes! he said "The last time she was here i had never seen someone enjoy these tests so much before" Got a little beamer but wanted to laugh even more bad had to concentrate wanting to get the best results!. So i then had to take an inhaler sit in waiting room for further 20mins then go back in and do one of the tests again! Falling asleeeep! I then got wheeled to ECG which is sticky things on your body measuring your hearts activity. Then off to xray. I txt my dad saying if the physios come to do my 6minute walking test can you ask them if i can do it tomorrow morning as i am so tired. I returned to my room and my dad had told them for me. My constant came in and asked how i had been any change in medication,if i had any questions. I then had some dinner in my room and my mum and dad left as they still had to check in at hotel and have their dinner plus they were tired too. I done one nebuliser, watched some tv then took my other nebuliser (drugs to breathe in to help break up mucus) put my pjs on and then took my tablets. It was approaching 9.30pm and i thought about putting my light off and try go to sleep doubting i would it being so early and me being a night owl. But by 10pm i was asleep, a few distrubances in room next door due to an ill man and noises at nurses desk. But that was me till 7am!
Thurs 18th
Got woken up with a nurse asking if i wanted breakfast. I decided rice crispies and cup of tea. Rice crispies didnt have sugar on and u cant eat them with no sugar lol and the tea wasnt pleasant. I watched a movie on tv "Wnderlust" with jennifer aniston is real funny!! I went and got dressed at 8.30am, packed some of my case,put make-up on and waited on my mum and dad. Just after 9am the physios came to do walk test. Around 5th minute i started to feel dizzy and asked to stop oxygen level around 80% dizziness lack of oxygen to body. I stood for bout 20seconds then finished rest, Lowest oxygen level was 79% they said last time im sure it was 74%. When i got back i thought to myself i dont think im gonna get my blood gases test. Which is when they take blood from your artery. It measures the level of oxygen/carbon dioxide coming from your heart which is fresh unused blood going to feed your organs/body. If the oxygen is low it tells doctors that my organs are under strain starving themselves of oxygen. The last time i was at the hospital was my first time getting it. My blog before explains my experience saying i got really upset scared and it turned out to be ok. People say it feels like its on your bone/you feel it pulsate because its right above nerves. So i thought this time i wouldnt be so lucky to feel nothing. So i was hoping they wouldnt forget i needed it or not need to do it lol. But doctor came in "Hi lisa, here to do blood gases unfortunetly" So i started rambling on saying last time i worked myself up and it made my artery be more easy to find, so im going to get worked up i told her on purpose and before i could stop talking i said....IM WORKED UP! haha! She said it will be ok we used to practice on each other as students, but i used to get drunk before it. I asked if that was to help thin her blood and that would make it easier to find a vein? and she said "No, it was so it was less painful :O" Aww great i said thanks, that makes me not worry as much haha! So she went in for the blood lol and got it straight away the syringe filled up and it was done. Holding swab over it i could feel pain kinda like a dead arm pain shooting pain going all the way up, bare able but just because of the nerves underneath. Soon after my mum and dad arrived i filled them in on my night and morning as did they. Now it was just time to sit and wait for Team to arrive. The arrived and said Lisa we have good news we would like to see in 3months as you have good results they are slightly better than before. They explained why they want to see me so often, so that they can paint a graph of how i am over a period and try to predict when i will get in the "window of opportunity to be listed" plus it is best the keep a close eye on me so they dont miss anything and can be best prepared for transplant as possible knowing my body inside out. So with a smile on our faces we left, i must be doing something right!! Looking after myself the best i can and doing as i am told deffinetly helps! And having good support!
Until the next time!!
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