I went to my local A&E as requested by Papworth last Thursday, after getting some pain in my lung, very similar to the pain I'd experienced the week before when my lung collapsed, although not quite as severe, I also was extremely breathless and I was using my oxygen 24 hours a day again.
They x-rayed me and said there was no collapse, but I wasn't convinced. I wasn't going to argue with the doctor, but I went home anyway knowing I was attending clinic at Papworth the next day. I had phoned my CF team in the day telling them what happened and they wanted me to go up there to be x-rayed and potentially stay in, so they were goingt to get me a bed ready on another ward (to then move onto CF ward the next day) but I called them back and said I'd rather not make a 3-hour round trip just in case my lung wasn't collapsed and it be a complete waste of time, so they suggested I went to A&E, then contact them afterwards.
So after my trip to A&E, I called the CF ward and told them it wasn't collapsed but I wasn't convinced so I decided I'd take the bed on CF ward the next day regardless, hoping I would be able to stay in for a good rest over the weekend, then leave on the Monday ready for my busy week planning my 21st birthday (17th March.)
I was put back into room 3 which was the large room I'd been in before when my lung had collapsed the last week. Obviously Josh was going to be staying with me again as my mental health was not in the best shape and staying in hospital for the weekend would have really messed with my head. I also was seeing the dental team at Addenbrookes on the Tuesday and I know if I'd have been alone, my fear and anxiety of the dentist would have been bad enough!!
Anyway, I had an x-ray done at Papworth almost immediately and was greeted with the fantastic news that my lung was slightly collapsed, only just over 1cm so it wasn't enough to need a chest drain but we would keep an eye on it, keep on with the IV's and hope it improved. Well that night, it collapsed. I just remember having the same stabbing, severe, sharp pains around my left shoulder, I felt extremely breathless and just cried and cried, I was pretty much 'ow' screaming, lol. The nurse heard and came running in, I was then sent off for an emergency x-ray and what do you know, it had collapsed further. So from being told on Thursday night by my A&E I had no collapse, to the Friday night/early hours of Saturday, having another proper collapse wasn't how I wanted the weekend to go, lol - I was then given lots of pain-relief and was able to get some sleep ready to have another chest drain put in the next morning.
Me with the CT scanner, potentially crying saying nooooo I don't want another drain!!! Lol |
As it was a Saturday, the on-call team were going to fit the drain which made me more nervous as the time before, it was put in by the same guy who does all the Port-a-caths and PICC lines at Papworth, so it was a familiar face and someone I felt I could trust. I'm a very nervous person so I was given 1.5mg of Lorazepam which was supposed to take the edge off my anxiety and sedate me a little, as my chest drain was being put in under a CT scan I had to be awake, as you have to hold your breath, then breathe out etc. so I wasn't able to be fully sedated. One of the CF consultants came along with me so she could give permission for me to have extra Morphine/Lorazepam during the procedure. I had another 0.5mg just before the procedure and I did feel a bit sleepy and I wanted to be in la-la land but my silly anxiety wouldn't let me! I did have a lot of Morphine (Oramorph) before, during and after the procedure but nothing could completely take the pain away.
I will say, the worst bit is having the local anaesthetic put in, it stings and they seem to push the second lot in quite deeply, the first numbs the skin and surrounding area, the second injection I think, goes into the lung, but I can't be sure as I would never watch, lol! After that though, all you feel is pressure and the odd weird sensation, once the drain was in my lung started inflating immediately so it hurt a lot, well it was more uncomfortable than actual pain but it meant it was in the right place and doing it's job properly!
By the Sunday, my lung was pretty much back to normal and my drain 'pot' hadn't done anything for a while, to begin with the water was bubbling as the air that was trapped in the collapsed area was coming out of the lung, along with any other gunk/blood lingering around in the area. The area that collapsed was almost exactly the same area as the week before, so that made us think perhaps we didn't leave the drain in long enough and I had itchy feet and really, really wanted to go home, so although all the signs pointed to the fact the lung was back to normal, 3 days just wasn't enough. So the plan this time was to put the drain in on the Saturday and leave it until Thursday (today) where it was clamped off, they did this to check the lung still stayed inflated throughout the day, I then had another x-ray this evening and nothing had changed so the clamp was removed a couple of hours ago, so I'm ready to have it out in the morning :) ...It's been in 6 days this time, double the amount the last drain was, so I really hope it stays inflated this time.
It's my 21st birthday on Saturday so the plan is, drain out very early in the morning and shoot off home as soon as possible!! I was going to be going home on IV's, but I've decided to have a few days off as I have been on them just over 1 month now, I'm having my tooth out at Addenbrookes on Tuesday then I will probably come back to clinic on Wednesday providing no further collapses happen and I don't overdo it at my party!! I may then restart IV's but I'm hoping to get a nice break from them for now if my lungs will behave!
During my stay my kidney function figures went a bit mental, one of the IV's I was on had caused my kidneys to stop working properly. I had to have magnesium tablets for 3 days and I was very dehydrated. But after stopping this particular IV completely, thankfully within 2 days my kidneys had returned back to the normal range!
So it's now Thursday night and I'm all packed ready to go home as soon as the drain is out! I can't wait to be reunited (again) with my puppy babies tomorrow, then begin my birthday celebrations. I'm having a poker night with my Dad's family Friday night, then a big house party at my Mum's on Saturday.
My cousin Ashton dyed my hair last week to match some extensions that I bought a while ago, so I'm having them put in on Saturday afternoon, my hair colour is lovely and she did a fabulous job :) my hair is the lightest it's ever been, but it's exactly what I wanted! I also have a lovely lipsy dress and I'm sooooo excited for the whole thing, I will hopefully have some photos to upload for you guys from the party but I intend to be off my face, so I will depend on others to take photos for me;)!!
There were plans in place so I could attend my party even if my lung hadn't gone back to normal, there were talks of hidden chest drains which would hide under my clothing, then return straight back to hospital but thankfully it's all worked out okay :)
I'll leave you with a photo of me in hospital, I woke up with curly hair which is odd for me so my suspicion is that Josh curled my hair during the night, hmmmmm. Either way, it's the last photo of me being 20 on this blog, hooray :)
Oh and, my weight is still increasing, I took a bit of a knock the other day when I was sick 3 days running, but now I'm a little healthier again, the weight is going up again (today I was 43.1kgs)
Thank you for reading.. Hopefully my next blog will not have any mention of anymore lung collapses but instead be a party-filled-21st-birthday-fun-happy-blog, yay :) - can you tell I'm slightly excited???
xxx
7 comments:
YAY! I am so glad for you that you are feeling better and so excited for your birthday! I hope you have the most fantastic time on Saturday and the next blog will be fun-filled! Good Luck tomorrow and keep eating :) xxx
Aw, that picture of you is just heartbreaking. :(
I wish you the happiest of birthdays this weekend, and I know you will be surrounded by your family and friends, and pups, and your devoted Josh.
I am sure you will have a wonderful birthday kid. we are all with you to support you. You are a great kid and keep your fight continued.
Have a wonderful birthday.
Wow! All I can say is I hope you get your lungs and continue to write!! I have no doubt that you could be (are) a very talented writer! With that being said I have learned a great deal from you. You see I am a registered nurse that has worked about 13 years on a transplant unit in the US that is ranked in the top 5 in our country. However we do only abdominal transplants, kidney, liver, pancreas small intestines and multiviseral (stomach, pancreas, small intestine and liver..... And sometimes we throw in a kidney)! The Cardiothorasic transplants are done in another hospital about a mile away that is a part of our joint hospital system. Before we were joined we had lungs and hearts on our unit, but that seems forever ago! Because we are a Magnet hospital our manager wants as many as nurses as possible to take the certification exam which is an international exam to become CCTN (or certified clinical transplant nurse). However, the exam is over all the organs. So the ones we take care of we know but when it comes to heart and lungs we are clueless except for the post transplant medicines which are basically the same for all the organs. So without trying to I am learning things from what you have written! Why do the antibiotic make you sick?? Is that true of all who have CF? I was also surprised that the wait was so long. Our longest wait time is for kidneys which can be 2-3 years or longer, but they also have the option of a living donor. Our wait for livers is about 2-3 months plus or minus, depending on how sick the patient is. Our multiviseral transplants wait just days to weeks. We have one patient that spends a lot of time with us that has CF and has had a liver and pancreas transplant and is waiting on lungs, and another that had a lung + pancreas transplant. We do between 5-600 transplants a year. I love my job so naturally I have enjoyed your blog. As a nurse who has taken care many patients I think you will make it! Having a good attitude and zest for life, I think make up about 50-60% on how the patient does! So Good Luck to you! I have a really good feeling that you will make it! :)
Keep up the good work and keep us all posted!!!!
I recommend you to open a facebook page dear. Wish you good health.
Hi love!
I stumbled across your blog and wanted to say hi. I feel your pain (literally). Currently in hospital also and had two chest tubes from collapsed lungs. Such a pain. I hope your feeling better. Happy Birthday!
<3 Sarah
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