I'm now 25 and I think my body or shall I say my lungs are making it pretty clear that they are old now! I use to say growing up as a teen that if I knew anyone over the age of 20 that they are basically in their 40s in the cf world! However my lungs are starting feel like an 80 year old that's smoked 40 a day!!
Soooo take it back to a few weeks.
Chris (my consultant) told me that I wouldn't be able to get the port and stent done that week, it was looking like I would just be added to the list each day until they could fit me in and because of possible complications with the anaesthetic, well hopefully not fingers crossed but he wanted to make sure everyone was comfortable and it wasn't rushed.
So I have now been added onto the list for the 20th July for the stent to be put in and then the port placed at the same time!
I was a bit gutted as I kinda just wanted to get it all out of the way so I can get out of this place and enjoy the sunshine and summer, but these things happen.
He asked if I could stay until the 6th July to see the surgeon, or at a push Tuesday but I had a brow appointment booked which I have been trying to get for over a week and they could only fit me in day before my birthday and Chris being Chris laughed at me but he knows what I'm like haha
So Monday came and I was itching to get out, was begging the surgeon to come around, I had all my pics at the ready to show him exactly how I DIDNT want it placed! Lol and I was itching to see the Drs because I was meant to have had my home ivs delivered on the Saturday but they weren't ordered Friday so had to be ordered that Monday, was all a bit confusing and there was 2 other patients being let home so was a bit manic on the ward!
The surgeon turns up, this lovely Chinese guy mr chong. Came in with his big clogs on and all chirpy, shook my hand, pulled the chair closer to the bed... Then the portable oxygen tank fell off the chair he was half sitting on..(awkward) lol and he started chatting away explaining it all. He was different to other surgeons I had met before, didn't have this high mighty demand respect thing going on, he was just so lovely and very normal!
He so got me and I didn't even need to show him my obsessive pics, he said I like to hide it in the bra area for his lady patients (that's me I'm a lady haha) and he said about the stent and how the port line would sit inside that vein etc.
5 mins all done and dusted and he was off!
Made me feel very happy about it all then Chris poped in with everyone after. All plan to go home and now I wouldn't miss my brow appointment the next day, just had to get ivs sorted and I went off to Camberly shopping with mum whilst it was all being ordered and tonight and tomorrow mornings dose was being done by pharmacy and my anti sickness iv too.
Came back about 5.30-6 ish hoping it was ready still nothing, so went to canteen for dinner and I said to mum on way back to ward, maybe we should pop in to pharmacy to check and see if it's ready saves them bringing it to ward, she said no will all be fine don't rush them.
Well night staff come on as we come back I asked if it had come down yet.
Then my lovely night nurse Hannah comes in, she had that look on her face that she wanted to tell us bad news but had a feeling I was going to flip! I said oh no what lol I just knew, so pharmacy don't process iv drugs pass 4.30. Instead of telling us that they just didn't say anything. Been there hours waiting for nothing ha. Was only because Hannah had rung that we found this out!
Anyways we had my night dose earlier and took some for morning and said we would be back for anti sickness but other drugs would be delivered. Frustrating but wasn't Hannah's fault.
So got home around 9ish just in time for big brother!!
When I got home I felt a bit tight, I thought it was probably the heat. I hadn't felt well on the Sunday, but girly time of month always makes my chest worse, my crp was 50 from Sunday bloods, so not too high. And I told Chris I'd rather feel rubbish at home and make my brow appointment on Tuesday haha 😉
So I thought it was the heat because I was use to air con in hospital. Had a restless night.
I woke up the next morning after mum had done my ivs and gone back upstairs and I just felt like I was suffocating, the oxygen just wasn't getting into me and helping, I text her saying come down and told her. I was already on 4 litres of oxygen but we changed it to my portable tank as I get more relief sometimes, still didn't help, so whacked up to 6 litres and nothing was helping, mum put my sats machine on
On 6 litres no way it should be like that! Mum checked hers and it was normal, she went and called the unit, she didn't tell them about my heart rate, they said do a ventolin incase stuff was moving and stuck and blocking my airways, I did, but didn't help.
But I was exhausted I fell asleep. I told mum to stay near me, keep an eye on me. I was a bit worried but my body wanted to sleep.
She woke me up and said my sats aren't improving and said I need to go back to frimley!
I looked at her and said I really want my brows done! Lol I was determined to get to the salon in my head and then I moved and was in so much pain, I started to think maybe my lung had collapsed. And was sensible and realistic, I thought there's no way, if I can't sit in This bed il be able to get ready, dressed, get in and out of car and get in that salon chair. I just said take me to frimley.
Got my dressing gown on, with mums dog beau hanging from it humping me (he's taken a shine to the dressing gown weird dog) and got into the car!
I remember talking to mum on the way about Harefield and saying I need to email them about taking photos after I've had my transplant, it was something I hadn't done yet.
Basically now you have to give consent for family members to take photos whilst your out of it etc when you come back from the operation.
The reason I brought this up on the way to frimley was in case something happened to me and I had to be rushed to Harefield and wasn't able to give consent, with everything that COULD have happened that would be last thing they would remember.
I had so much going thru my head, I was pretty scared, I didn't know what was happening and why I couldn't breathe, so worse case scenario came into my head and my priority was photos! Haha
Anyways we got to the hospital and mum got me in my wheels and they had the doors open ready for us to come in and they got me into my room I had left literally about 16 hours ago, room 5 it's my fav room! Onto there obs machine, it read 79 and heart rate 150! I think I had a slight temp too, they got me onto a mask of oxygen and some water with tubing and put me on 13 litres of oxygen!
Done bloods results came back that my crp was 235, all a bit of a blur thinking back now that afternoon, just remember a lot of people leaning over one and another and each person doing different things.
They were doing my obs every 15 mins.
They wanted my sats to come up and then get me on my bipap asap, my respirorty rate was also very fast so I needed to try calm down.
I had iv paracetamol to help the pain, x Ray came to my room and thankfully no collapse lung!!
Finally sats came up to 90 after an hour and then I had some food so switched over to nasal oxygen tube but my breathing began to go very fast again, so ate quick and got on my bipap on for the rest of the afternoon!
That evening I felt a lot better, hours on the bipap On a high level of oxygen had really helped, I was much more relaxed and felt safe!
I even managed a bath, how looking back I have no idea but I had t washed the day before and bat day and I knew it was boarder line trampy lol and was my birthday the next day so wanted to wake up fresh and clean!
After I had a bath and was chilled mum left before lee came up, there must of literally been an hour on my own if not less!
I was in my room on my bed, phone charging but I was on it. I remember randomly becoming very sleepy and felt weird, I put my phone down and lay in the bed with legs straight out and arms by my side and within seconds my body went paralysed in a way, it's the only way to describe it, I couldn't move my arms or legs to lift them, my eyes felt like they were rolling in the back of my head, and couldn't talk, my buzzer was up on the wall and couldn't do anything to contact anyone. I knew lee would be walking in any minute as he was on his way, and the night staff would be doing my obs.
She came in about 5-10 mins later and tried talking to me, I could understand and hear perfectly what she was saying but I couldn't respond!
Obs were all normal, she got my nurse and they kept trying to talk to me but I couldn't answer I tried but couldn't then the on call Dr came and was tried to get me to lift my legs and arms and the only thing I could do was wiggle toes and move fingers, it was so weird, sugars were fine and then lee arrived, calm as a cucumber, which defo helped keep me calm! They done a blood gas but all was fine, they said it could have been a late reaction to tramadol which I had taken at 4pm
But it was gone 9pm so I was convinced! eventually I started coming around and could move gradually and then talk.
Have no idea what it was! And still don't!
Was fine after that, lee stayed for a few hours tucked me in for the night and went home!
The next day it was my birthday! Old girl! Mum arrived with big pink 2 and 5 balloons! I was very spoilt and loved that day, I had to keep my bipap on all day as I was struggling a lot but it helped so much, my lovely friend holly arrived with more 2 and 5 balloons so I became 2,525! Haha and then lee arrived, mum went home.
Opened all my pressys and then after a few hours lee and holly went and got lunch and I was exhausted so had a sleep, recharge my battery's!
Later in the afternoon after holly had left was just lee and I, i said to him I feel really hot and tired and a bit weird and he said right lets sit u up incase you have a funny turn again and whilst he was sitting the bed up I went! Same thing as night before!! Was so weird, he ran it and got the nurse, she tried talking to me and again I could hear her I just couldn't respond, she started pushing on my chest on a pressure point and lee quickly managed to get me to communicate thru me squeezing his finger for yes and no. He made me feel so safe and relaxed and handle the whole situation so well!! Explained to everyone what happened night before and said it can't have been tramadol because I hadn't had it that day! My nurse got my consultant and he was trying to ask me stuff and lee explained my little finger squeezing answering way! Haha no1 could think what it was, suggested fluids.
I came back to normally around 40 mins later in total and was fine, it was so weird, it's like my body just went into shut down mode, maybe because my heart rate had been so high for so long, I dunno that's they only thing we could think of.
Was fine for rest of the evening my mum arrived mid weird moment and then once I was ok, Siobhan and my dad and little sister came up to see me, with cake and I blew out my candle George style with my bipap!
The days after my birthday I really picked up, staying on the bipap all day on my birthday really helped get my lungs back into gear!
End of last week was very chilled, I had a lovely visit from my auntie and my cousin little one and we went and sat in the time garden which is a special garden for terminally ill patients or patients who have spent a lot of time in hospital. I also took advantage of the hidden garden to catch some rays!
This week has been a slow start, my sats have been lower. I had a lovely reiki massage done by two lovely ladies who came to my hospital and I felt very relaxed afterwards! Was a birthday treat from my mum!
I had a friends birthday meal Wednesday and through sheer determination I got through the day! Pre meal I also managed to get nails done at my usual place and then finally my brows done at the lovely SunStyle UK salon in Cobham by the lovely Steph!
By the time I got to my parents house and getting ready I was exhausted and was ready for a sleep but it takes so long to get ready and had no time to rest! Because the amount of oxygen I need at the moment has increased it means the portable tanks do not last very long, and there was no way I would be able to carry more than one tank myself and I didn't want to put that on my friends to turn up with loads of tanks. I wouldn't to keep things as normal as possible. 1 tank last an hour and half and I left the house at 6.30! By the time I got to my friends and to the restaurant I was already getting near to the end of the first tank.
Luckily my mum and sister had agreed to go to a restaurant near by the lots of oxygen on stand by to swap me over.
We had a lovely meal the service was quite slow and I had to be back for evening ivs, I was really struggling by the end of the meal and just need to get back on my bipap, so had to leave a bit earlier, but my mum was hiding around the corner of the restaurant with my wheelchair and more oxygen ready to get me back to the ward!
I'd left the hospital at 12pm in the afternoon and got back at 11.30pm, my chest was so painful, I hadn't worn a bra in ages and my god are those things tight and restricting! Haha my feet were swollen, but it was all worth it!!
Monday is my op day for stent and port, my crp is finally coming down and is 110 today so hoping comes down a lot more before Monday and then it will shoot back up again no doubt! Not sure what time I'm going down Monday but anything from 9am onwards! Really starting to get nervous now and I know my mum is worrying about me going under, but I'm so glad my sats have picked up a bit now! So all in the right direction! :) and hey have agreed to keep picc line in so I have access after the operation and not a cannula, they are going to pull the picc line back a bit so it's not in the way of the portacath line. They can't use to portacath for he first week. And il need something more reliable than a poxy cannula!
I need to try blog more often so there not this long!
Wanted to say Thank you so much to my amazing family and friends and esp my lee and mum your my rocks and truely a lucky girl to have you both! It's been a demanding few months but you go above and beyond for me to make my life so great! I'm the luckiest girl in the world to have you both, and everyone else around me! 😘😘😘 xxxx