Woke up stronger and full of life, saw my beautiful consultant and my life saving surgeon and the rest of the crew for ward round.
All was good and getting me ready for home, I was taken off tac but they still wanted to keep neckline in,, ahhhh was driving me mad! I wanted a proper shower and sounds rank but I'd not proper washed in a few days cause I knew neckline was coming out. They said home tomorrow as in Friday 18th I was buzzing!!
I managed to do so much more walking today, flight of stairs a lot quicker and steadier and walked the ward upstairs and back and down stairs and back to my ward and room again, with a little help from my gomey/pimp stick haha
It prob doesn't sound a lot to people but I'm weak I really struggling to walk at the moment, it's so annoying because my lungs aren't stopping me, I just have lost all muscle. So seriously advice to people waiting, it's so so important to keep your legs moving and strong even if you can't wait do leg exercises to keep them string cause post tx you don't know what hits you, everyone different you can sail through, if I hadn't had tummy problems I would may have been up on my feet so much quicker. Keep in mind!!
So Spent rest of the day wiped out but excited and nervous about the next day HOME!! Firstly I was worried something would happen to change there mind or some bloods come back weird etc
But then I was nervous about leaving the hospital bubble! No constant Monitoring, what happened if something went wrong, these aren't my lungs, what happens if they turn on me and no1 knows not even me! Sounds dramatic but this is so new!
Anyways I wanted to be fresh for leaving so I gave up with neckline and had planned a shower! Then at 6pm nurse comes in with big magnesium drip, she said my levels were really low so needed 2 hour infusion. Panic hit thinking this was going to stop me from going home. Nurse said should be ok. Obvs then shower was out the window cause I didn't want mum staying later cause she was going to be up earlier with lee to get me home. But typical mum didn't mind waiting. We watched you been framed and omg the animals had us in stitches which had me in pain/ laughing my head off. Laughing is a painful experience at the mo but worth it haha
The magnesium drip gave me hot flushes, I wasn't hot outside or swearing but it was like inside so weird, nurse said to slow down but I just wanted shower so I was nah it's ok, whacked the fan on to help which it did!
I was counting down the seconds till the infusion finished. Finally it did lucky just before hand over! She flushed me off and I raced to the shower!
Then we couldn't find my tangle teezer! So mum bless her to help my hair went off to tesco to get a brush for me. No where near sold one but a comb, actually wasn't that bad, got to be so careful with hair now, as thinning and not growing.
I had the best shower standing on my own, washing myself! It felt like heaven!!
Had lovely nurse Emma but I didn't need much care so didn't see her thru the night. Lovely Chris who does my obs we spent ages chatting that night and before mum went home he showed us the picture we had with the mayor of Hillingdon haha
Early start, has another magnesium infusion at 6am so that was me awake and excited at he thought of going home, mum and lee were coming together at 10! And couldn't wait. Had bloods done at 8.30 for my tac levels (anti rejection) and other bloods and was told they would be back in an hour. I was so nervous something was going to crop up! I was prepared to stay but mentally not really I wanted home ASAP!
So mum and lee arrived in perfect timing, I was due for an echo, which looks at your heart, my socks were under my chair and I couldn't get them, once I get on floor I literally can't get back up! Hahaha so they got my socks and porter turned up so lee came along with me, he asked what it was and I said well boobs are out so no questions asked he was coming with me hahaha
Had to wait a bit was quite busy as it was clinic time, finally got in and saw the lovely lady who has done my echo last few times in my room, I couldn't stop shaking, the drugs make me shake but that day I was like some crack head. Had to lay on my side and my leg was shaking so much ha
She showed me where my heart valve doesn't completely close now since stent was removed, it's kinda lodged open now, bit crap but hey ho I'm here so could be worse!! Then I got a little copy of my heart beat which was quite cool, I'd have copies of everything if I could! Haha
So that was done, didn't wait for porter lee brought me back in their wheelchairs, he was a terrible pusher, but il give him credit the wheelchairs are like awful and big!
So I was hoping they would have blood results when I got back to ward and to get that bloody neckline out of my neck, still no results but I was aloud my line out! Best feeling ever, although a stitch got stuck but weirdly felt good to have it come out! I use to panic about the idea of stitches coming out, but I love the feeling, I'm such a freak I know!
we waited and waited and I was getting nervous it was gone 1 and still no results, we asked a few times, then lee asked my nurse again and he was like OMG my tac levels were so high!
That's it I thought not going home, fuck sake I was gutted.
Dr came in and said basically levels have to be between 6-13 and mine were 39!! So way to high
First thing I said was, so I'm not going home she said no it's fine you can go home, just don't tac this weekend and when I go to clinic on Monday have bloods and take 0.5 after.
I'd spent most of the recovery being told my tac levels were too low and I wasn't absorbing it and now to the extreme there too high, Typical! I was a little panicked when she said no tac for weekend. I thought noooo what happens if my lungs reject over night, can't help but think theses things. Anyways I calmed down and was so happy I could go. Just had to wait for discharge letter.
Lee and I before leaving
Once I escaped I walked to carpark by the pavilion, was weird and I was so shaky but I did it! Then getting into car felt so weird and the thing actually moving omg felt like a rollercoaster, we were going about 30 and I was OMG slow down hahahahaha and every time the car in front braked I panicked. So unlike me, I need to stop being such a wimp, need to man up!
On the way home we went straight to get our nails done, I had to mine were awful, the staff were so lovely and gentle, I told them where we had been and why is not been in, and my hands were shaking so much I dunno how he's managed to do such a good job! Lol bless love that shop. Then a lady over heard and before she left she wished me well with my recovery!
Getting home (to my parents) and sitting on a sofa was one of the most amazing feelings, not a hard chair, not a bed a nice cosy sofa! I was also greeted by my family's dog beau who was running around in circles and beyond excited to see me! He loves me, and didn't stop following me, even joined me in the loo!
Had the best dinner mum prepped and I cooked it! Fajitas one of my fav!! And I are so much, soooo good! I felt exhausted that evening and lee stayed which was so lovely it's been months since we shared a bed!
Saturday I woke up ok but as the morning went on I felt so awful, my tummy was rubbish and I was so tired I could barely stay awake, was getting my hair done at 2-3ish by my hols so needed to rest but couldn't sleep. Dad and I had a good catch up and watched crap to together before hand then I went for a lay down and before I knew it everyone was home and ready for part two of girly pamper sesh!
Love love my hair feels so good had a mini cut because no hair on my body is growing so didn't want a big chop!
It was my one month since having my transplant so when lee turned up we all celebrates with a glass of bubbles then lee holly and I had a nice curry!
Sunday I woke up at like 6, seems to be what I do now, early riser! And decided I wanted to pimp up my gomey stick and wanted to go to hobby craft! I bought if I go mega early no one will be there!
So mum took me and Hannah joined well bit busier than I thought but so big I avoided every person I didn't touch stuff haha paranoid and went straight back to car!
Couldn't help but do a selfie
Pretty exhausted after and then I went home to rest before I went to my in laws for a lovely roast and to see my little baby mason (our dog)
We turned up and mason was so excited but couldn't have him jump up, would have knocked me down, everyone was quite protective over me with him, to be fair I smelt like mums dog so he just wanted to sniff me! But we did have a nice cuddle when he calmed down! I can't wait to have him home when I get home and back to normal! And can't wait to take him for a walk not in a wheelchair!!
Me and mason, he's such an awkward dog, and prob hates me now I've not had him for so long!
Evening didn't go as well as I hoped, I don't seem to be able to digest food in the afternoon, God knows what's going on with my tummy but it's not right, get to 4ish and I get the worst stomach cramps, and I feel sick! It's so frustrating cause it ruins the evening, it seems to happen every few days, belly still bloated but my weight is only 34.8kg so it's so hard!
Anyways so clinic today so will blog after that's done if there's much to report! X
Been following your blog for a little while now and I'm so happy to read that you're home with new lungs! Thank you for your honest blogging about all of this. I have CF myself, numbers are going down slowly and it's really good just to know some (honest!) examples of what to expect. Hope being home helps recover you faster, and that your tummy settles down soon so you can put on some kilos again! Xsarah
It is such a joy to read your updates! I had been checking several times a day during what turned out to be your recovery time. I was so hoping you'd been called and were simply too busy healing to blog. You had quite a recovery. I hope that tummy of yours settles down and let's you get busy strengthening those leg muscles of yours. Do they have you doing any sort of rehab? My oldest daughter had to do pulmonary rehab post transplant. It was done in a hospital setting, where they monitored your exercises and only allowed you to do certain things, making sure to stick to eternal precautions. She had a clamshell incision for hers. I hope your levels stabilize. I know they're high now and probably got to do with your tummy issues and absorption. My daughter had to take enzymes with her tacro. BTW, your nails look great! Did you know that the clubbing goes away for a lot of people? My daughters diminished a lot. Keep up the good work!ReplyDelete
That was supposed to say "Sternal" precautions not eternal! Darn iPad thinking it knows what I'm trying to say.ReplyDelete