Wednesday, 29 April 2009

Drain Removal -One Step Closer

My Pair Of Drains

Had left (pigtail) drain removed today - (Sunday) and it didnt hurt at all. But this means I am one step closer to coming home on Tuesday like the doctor had told me last wednesday. However each time I have been given a discharge date it has been postponed. but I am so determined that this time will be for real, as I feel so different since having these two drains put in. The pain is non existant with the pain killers and I am not dopey from them either, so as long as the drains are doing thier job I dont mind them being in, as I am mobile - by going to the canteen with them in and walking up and down the stairs, so I am happy, I just would like them both out before Monday so I can go home Tuesday. :-)
Had right drain removed Sunday - YAY!!!!! FINALLY I am TUBE FREE!!!!! It feels weird. The nurse put an opsite dressing over the mepore dressing so I can go and have my first shower of the week / month!!! (PHORGH, whADDDA STENCH!) :-) And it felt good. No MUM to keep an eye on me either - just be and my toiletries and RAZOR!! Took my time and enjoyed the freedom of the water and stream and just being me!
I sent my mum home you see on Friday and usually my dad stays with me at the weekend but I asked him not to bother coming down this weekend as I was fine. I was abit lonely as for the first time since my transplant it was just me. But I enjoyed the ME time. Gave me time to contemplate about things, and that was heaven to be honest. I needed MY own SPACE, as I knew when I got home I wouldnt have that. I should have updated my blog then when I was on my own, so I do appologise, but I needed that time for just me. Now I feel stronger for it and know where I am going in my life, well the direction that id like to go anyhow. These are all my stitches and staples which DID NOT HURT to come out. I was really dreading it, but in all honesty I did not feel a thing.
My sister got married on Tuesday in Gretna Green (SCOTLAND) and I have seen photo's and she looked beautiful. I will post pics when I get a decent one from my dad. I was bit disappointed that I couldnt go but getting better at the hospital was much more important and she knew I was thinking of her as I kept texting her. She had a lovely day and evening too.
Monday: After Shower and getting my dressings re done I get dressed in normal outside clothes and make myself up, showing the docs that I am ready for the home!!!!! So all is planned providing that night nothing serious happens to go home Tuesday!!!!
I cannot sleep, I am so excited, but exhaustion finally catches up with me and I fall asleep, and I sleep WELL . . . . Probably the best I have ever slept since the transplant.

I keep calling my mum and being as excited as a primary school girl on christmas eve - no tell a lie, I still get that excited on christmas eve anyhow, even last year when I was really poorly, I was just as excited!!

My Bronchoscopy:

Firstly A Bronchoscopy is a technique of visualising the inside of the airways.

I wasn't getting better, just slowly worse and I knew this before the medical team would listen, and it took me loosing what lung fucntion I had gained via this transplant to be halved my 50% before they would listen.
Anyway, it all started last Saturday afternoon when my I had me dinner . . . . . . . . .

I had a cooked breakfast which I have most mornings and then at lunch decided to go to the canteen as their MASH is much nicer, and had sausage, which I dont usually eat. Then I decided lets go for a drive in the car as I needed some freedom and then we eneded up at a pub called the coi carp, which had quacking ducks (yeah really) and a pond well a canal and was most beautiful the surroundings were anyway and whilst dad was getting drinks I couldnt help but look at the food menu and I spotted a duck salad, so i ordered that aswell. Was really nice. (I had my o2 with me, that didnt bother me, after what was left, why bothering to hide me being poorly when soon id be running around so to speak) anyway, we ate and drank and had a good time. When we got back to the hospital after going AWOL, I had supper, and then dad went and got me more food from canteen to top me up. I was happy and full.
However, due to my lack of digestive skills, this is where the problems came thick and fast. The next day my breathing was harsh and fast, and when i went to go on the bike I was weaker than before and I knew in myself I felt different again, and I tried to tell docs, but they said it an off day, so Monday was an off day too, again trying to convince them with my blows going down and becuase I walked back from xray myself the docs deemed me okay, even though again I tell them otherwise. Tuesday my saviour, they listen!!!! They arrange a CT and see I have lots of fluid, but nothning conclusive of infection or rejection - so they finally say BRONCHOSCOPY! Which I think should have been done sooner, but I know they were just trying to save an anaesthetic as being ventilated they said would be hard for me to come off, but enough putting it off, I finally was going to have one.

So 8am Wednesday morning the hunky poter man came to fetch me, (and I was having a poo) i'd just had a bottle of gastro graffin - (for those who do not know this, its a bottle of heavy anisead smelling laxative that is very potent in both ways smelling and how it works)!!!!

Here is a pic of us before my trip to theatre for the proceedure:

Got down to theatre where my mum said bye and I said bye to Ed (is what I named the porter (as when he has his hat on he looks a lil bit like EDWARD from TWILIGHT)! He wont thank me for this I know!! - Mind you it could be all the morphine im given, but hey, he made me smile, what else matters. They left me and then I was in the hands of some lovely docs and and an anaesthetist. My heart rate before falling asleep was 140, and sats not great either, needing 4-5 literes to maintain sats of 94-96%. Anyway, before falling asleeping after having the fennyl injection the doc said to me, you will be on the ventilator when you wake up and will be for a few days as you are really tired. I didnt believe him, but agreed to what he said and sure enough, I woke up on the ventilator, but remember the recovery not sure which as I was whipped into theatre twice, but remember writing down things on paper for the recovery staff to read as I was awake and wanted ventilator out!!!!!!! It wasn't long before I got what I wished for. I did see Ed again. he came in and I pretty much jumped on him, well if I could I think I would have. They wouldnt let my mum in recorvery and so when I saw him, I grabbed him literally and squeezed his hand and bless he did it back, then I remmeber falling asleep. He gave me peace which is what I needed as I was become quite frought I remember, but out of all the other people I remember him clear as day was quite weird really cos I was really spaced out so he told me later, though I havnt properly apologised for practically jumping on him in rocovery!!! hehe

And here is another pic of me ventilated but this time with my favourite lady anesthetist who did my CVP line once too. Mona Her name is, and she is lovely...

What had happened well you guys know from my mum, I ate too much, which pushed up fluid into my lungs higher up, causing breathing obstruction, needed 2 drains to drain off fluid, which today from last wednesday is still draining, but slowing down now, which now I can breathe. And its really a FANSTASTIC FEELING!!!!!!
Hopefully drains to come out in the next few days.

My little walk and rest for my WKD SIDE!


(really sorry about side view again) Need a dummies guide to this!!!!

Anyway - My Walk up Killer Mount Stairs!

Okay, I have oxygen on here, but this is the first time really out of my room since my last stint in ITU which I was itching to do. My room had become very boring. Since this (yesterday) I have been up the stairs and have lost all oxygen tubing which is the BEST FEELING IN THE WORLD! I have two drains in (which again not painful at all) I tell you, its wonders what pain relief can do for you!

After my hard work of doing the stairs I sat down in my room and rested - and I did this ->

Which was heaven. Painting them, (one of the first times I have used nail varnish as I really didnt have the energy or time to pamper myself with toe painting, and that really did my head in, not having time or energy before, as I used to have them painted nicely all the time. Anyway, I had a relax and whilst I was doing that, I noticed my drain - which okay is hard to miss, but something funny, so I recorded it for you all to see, turn away, or then again, dont press play :-)


Today, My Nan and her husband Roy came for visit, they got mega lost, and a 2 hour journey took them over 3 hours. Bless, but thankfully I got to see my nan, been dying to see her for ages now, but unfortunately Roy's Son Kevin passed away just under two weeks ago. He had MND.

Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. He has been battling on with this disease for a long time, and he fought with every bit of courage and dignity I could have imagined, and wish that he be in peace now. I remember he had this computer thing, and when I went to see him, I of course got him to say out a swear word via the robot computer to which we giggled at.

To find out more about MND click here.

And had lunch at the hare - I had RoAST Beef and Yorkshire PUD!! Ouh Argh, it was tasty!!!

Thursday, 23 April 2009

Hi again mother reporting on this weeks events

Sal hadn't been too well since saturday, she has been eating enough for a regiment and got a bit blocked up. she was finding it hard to breathe and she had to increase the oxygen from about 1 litre to 3-4 litres, her spirometry was decreasing too. she could only manage about about half of what she was doing. By tuesday she was feeling really unwell and she saw the doc and her sent her straight away for an xray then a CT scan. These did not show much except there were some changes but nothing darastic. they decided to do a broncoscopy, so the next morning thats wednesday she went off to theatre to have the proceedure. I was told that she should be back by 11am so I waited in her room, 11am came and went and no sign of Sal, the doctor came into the room and told me that she was having a little problem breathing so they had to put her back onto the ventilator and she was in HDU just off the theatre and i couldn't see her just yet and she should be back at around 2pm. At around 1.30pm a nurse came into Sals room and told me that she would be going into ITU, she thought I knew that but I didn't. She went and the doc came in about 10mins later and told me that she would be going to ITU, he did say he had been up to check on her just to make sure that nothing had gone wrong with the proceedure, which he assured me that nothing was amiss. I wasn't allowed to see her until she was in ITU. I cleared her room out and packed it all into bags not knowing what was happening, I didn't even know where she was, during this time the nurse came back into the room to ask if i was ok. Room cleared now to find where my daughter had got to. i went to ITU and they told me she was in theatre and was expected down soon and to wait in the waiting room until she was in and settled. i didn't quite understand what they were telling me, i spotted one of the docs off the ward so I grabbed him to find out what was going on, He took me back to her now empty room and explained that the prelimary results of the biopsy showed no infection or any rejection, so what was the reason why her breathing had got so bad? he didn't know at this stage. He told me to come back at 4.30 for the final results, I still didn't know where she was or really what was going on. He was told me due to the blockage, as her stomach was distended, she looked pregnant, lol it had pushed her diaphram up which in turn pushed the fluid further up her lungs which was causing her difficulty in breathing. They inserted 2 chest drains and drained off quite a lot of fluid, which in turn gave more room when i eventually saw her she was on a ventilator, but she was awake and she was writng notes on paper telling me she was in pain. They gave her some morphine and she reacted badly from it, It was scary I can tell you. They sorted out another type of pain relief, when that started working, she was asking how long before they took the ventilator out. It was about 4am when they took it out.

even though she was in discomfort (with the ventilator down her throat), she just wanted everyone to know she is still in good spirits and fighting everything bad that comes her way. Sal was taken back to the ward this afternoon (thursday) and has been improving ever since. She says she feels good now even tho she has the drains in and its a bit painful, thank god for the do it yourself pain relief. she has control over her own relief and only has to click a button to have some.

I expect that Sal will be writing her blog again in the next few days.

Mum signing off.

Monday, 13 April 2009

Hi - I'm Back!!!!

This is another pic of Me Before The BIG OP!

And a very good morning to you too!!!

My 1st Stay in ITU -

I remember being woken up to the sound of my daughter telling me how much she loved me and holding my hand. I heard my mum say to her, talk to mummy she can hear you, and then with that I SQUEEZED her hand and that made Kelsey's day!!! I remember my sister coming to see me and talk to me, and to which I squeezed her hand too, and all this made me feel so safe. By now I wanted the tube out and tried to pull it out and I was gagging on it. It was like having an NG tube down my throat but only bigger... I was told to calm down or id not beable to have it out. the nurses went to talk to the doc to see if I could have it out and they said yes but I needed to breathe on my own first. so I tried, least I thought I was trying and I was but i thought i wasnt and wanted a pen and paper to tell them that I couldnt breathe. they finally realised what I was trying to say and they said you are breathing by yourself. Oh I thought, well I will carry on with what i am doing if they say im breathing, I must be. I choked out some phlegm which Kelsey noticed so they suctioned that away and then my family were asked to leave whilst they took the ventilator off me. And then I was on 2 litres of masked oxygen which is what I was on when I went to theatre. . . . .. .

Kelsey and Mum came back and I just slept which upset Kelsey as she thought after the tube was out id be sitting up and talking but I wasnt. The time now must have been about 4pm. My next visit was about 5 i think and i was sitting up in bed and kelsey came to see me and I opened my eyes and said Hello BABY!!!! And that was it, she was BEAMING!!!!!!!!!!

This is me sat up!

This is my newly required scar, looks like a boob job to me! lol

These are my drains

And this is me RAW! i wanted to post these pics to show how it is in real life and not through rose tinted glass!! I was NOT in any pain here due to epidural, how ever I must have been off my head to allow a camera near me and to pose in such a modest way!!!!!!!!!!!!!!!
here is not a good day. I WAS in pain. Epidural didnt work as well and I was being given lots of DIAMORPH which was dropping my respiritory rate to 8 per min which is low, and then I told the nurses i couldnt take codine, so what did they give me .. . . . codine! I told them tramadol doesnt agree with me, so what did they give me. .. . . . TRAMADOL! MUCH to my annoyance that no-one belived I was in pain. So I had NO epidural working and NO background pain relief, and I was crippled in pain, so eventually when I was beleieved (needed 100% of oxygen) an anetheatist came to insert a new epidural. And within seconds of him putting it in, my heart rate went from 140 to 111 and my sats went to 100% so I was then on 75% of o2 which took ages to ween me off. I am still on O2 now and I will fill in the rest next time I come on here with less graphic pictures or not (hehehe)

Thursday, 9 April 2009

Mum reporting......

It's about time that I updated the blog

Sal has had a fairly good week. She is gaining strength daily although a little tired. On saturday her nurse for the day was someone that she knew as they used to be a transplant co-ordinator at the hospital so she really enjoyed the day chatting non stop and found out lots of information for future reference. One big suprise was that the nurse suggested that she went outside as it was a lovely sunny warm spring day. There is a little video, but please excuse the fingers as the video-er was required to help.

I think Sal enjoyed her time outdoors the first time in over 2 weeks. Thats not all she was up to over the weekend, it wasn't all sunbathing and lazing around as the next video clip will prove.

The seat was a bit on the low side but give her her due she did her best on that bike.

On sunday she was moved out of ITU and back to the ward. She has been working hard walking up and down the long corridor and using the bird. she has one problem that is holding her back and that is swelling she is carrying lots of excess fluid which doesn't seem to be shifting very easily, she is taking some duretics but has to be careful that it doesn't damage the kidneys. She says that walking etc is like walking with blisters and it is very uncomfortable but she battles on.

Sal is on less oxygen and it is reduced from being on 70% oxygen to having only 2.5 litres in a short space of time, I think is good going

The infection that she got is responding well to treatment and all the signs are that it is clearing up. We were told that it is not uncommon for cystic fibrosis suffers who have transplants, to get an infection they are lucky if they don't.

whilst she didn't have the central line Sal took the advantage and went and had a shower, the first one in almost 3 weeks, I washed her hair and she had a good wash all over, I had to go and change my clothes afterwards as I was soaking wet, next time if she can't manage herself I will have to remember to take my shoes, socks and trousers off.

Sal has had to have another central line as the one she had blocked up that makes 3 in total now, when she went down to theatre to have it done she was chatting up the porter who was a young male, typical Sal. lol. Well its nice to be friendly.

The physio who has been treating Sal is leaving on wednesday to go to another hospital, he has left her a plan to follow, which is quite busy, I guess its down to me to make sure that she does it. Where's my whip lol.

Sal had some visitors today some friends of hers came down to see her Clare and Nathan. They brought some easter eggs for the kids and a book for Sal, having read the blurb, it sounds like a good read, her nurse said that she had read that one and it was worth reading it.

Sal had another visitor earlier on, i think it was last week before she went into ITU, Justine whom she had never met before but talked to alot on the net. As for the smarties Justine your outta luck, some one ate them all including the orange ones hehehe!!!

Justine and Sal. She has had a double lung transplant some time ago, she looks the picture of health don't ya think.

The kids are coming down to see their mum she hasn't seen them for 2 weeks they are both dead excited to see her and Sal is real excited to see them she has missed them terribly, but she will have a future with them now.

I think I am all blogged out for this evening, I hope to be able to write more next week.

Take care everybody.

Sal's mum signing off,

Roger over and out.

Saturday, 4 April 2009

Sal's mum reporting....

Friday in ITU.... we had a txt off Sally at 8am to say could we get her some breakfast, 3 rashers bacon, beans and toast, her dad went off and got it for her and took it over to ITU, we are not allowed to go to ITU until 10am, the nurse took it off him and 10mins later she sent a pic to show us that she had eaten it all. Thats a good start. We went back to ITU at 10am and she was fast asleep in the chair, sleeping off breakfast no doubt. we just sat there until she woke up. The docs came round and said she was so much better and she could go back on the ward. Sally asked why they had stopped some meds and they said they wanted her own body to fight off the infection which seemed to have worked. She did 5 mins on an exercise bike without even getting out of breath, her comment was "I love my new lungs"

I think she got fed up with the hospital gowns and asked for some pj's. Sally is on 5 litres of oxygen with sats of 96-100% which is pretty good as she has a chest infection. She also tells me that she has some pain, which is muscle pain which doesn't suprise me as her chest muscles probably hasn't been used for years. We left ITU at lunch time. We are not allowed back in till 3pm so we made use of the time by going down to the pub for a bit of relaxation time. when we went back to see her she was sleeping off lunch. she woke up later and did some more on the exercise bike and did some blowing on the bird, which is a machine that was designed by a Dr Bird. pic of the bird below.

Sal is bright and chirpy and seems happy. She is still in ITU, as they decided to keep her for another night. If they have a room on the ward later I expect they will move her if not she will stay for another night, not that Sallys minds as you have a one to one nursing. I gave Sal another foot massage and a bit of pampering, no noe can have enough pampering and she deserves it.

here is a pic of Sally and her mum and dad taken yesterday in ITU
write more later

Thursday, 2 April 2009

Sally's Mum Reporting....

What a couple of days we have had, I felt so helpless all I could do is watch Sally struggle and get really exhausted. Her legs and feet are really swollen and a bit painful. The medics didn't know what was wrong but they knew something was. She had a spiking temperature her heart rate was really high around 150BPM she felt really unwell, her sats were dippping and was on lots of oxygen, but bless her she still soldiered on and did her physio exersizes, blowing the bird and using the pedals. The medics came to see her and sent her off for a CT scan, this showed that there were some changes in the lung but what it is, is unknown at this time. At 10 o'clock her consultant was contacted, he advised that Sally went back into ITU. They were going to put her on Cpap? but when she got to ITU she stabilised so they didn't use it.

Today i go in to see her and there she was sat up in bed chirpy as anything, and had eaten breakfast. I only stayed a short while as they wanted to wash her and do some things.

I went back to see her in the afternoon and she was sat in a chair fast asleep her sats were 100% and her heart rate was around 98 to 110, I sat there and waited for her to wake up, when she did she was chirpy and smiling. She had eaten lunch too. I brushed her hair and put it up into a pony tail, massaged her back with some strawberry body butter, then did her feet too. Her sats stayed at a constant 100% on 4 litres of oxygen and she was wearing the nasal specs not a mask, blood gasses were fine too.

Teatime came and the little darling must of been hungry as the meal man had to go back to the kitchen to get Sal some more food, three times. I think she has got her appetite back as she had hardly eaten anything for a few days. I took a pic before i left which you can see below.

Hope to write more soon.