Big day

Yesterday was a big day.
Do you recall me mentioning a photographer from the national transplant services wanting to take photos? Well he came yesterday morning.
It went well and I am excited to see the results, well as excited as I can be at photos of me.
I should probably mention that after feeling crappy for a few days I decided I needed a change, which resulted in some hair dye and a haircut. That in itself is a big step.I loved my red hair, but right now, I just dont have the energy to maintain it to keep it looking good. Not to mention that my hair is in poor condition from crappy breathing. So first the colour went. And then I braved the hairdressers. I hate going the hairdressers. I have to take out my hearing aids and off with my glasses, which makes things difficult and conversation pretty much impossible. Then I have to protect my neck and can only move to certain points. so yeh, but I did it and, I feel much better for it. I just kinda wish i had had it done before I went away.

But yeh, the photographer, is also a transplant patient, having had a donated kidney off his brother. He has done some amazing stuff and is super fit, I give him all his credit for that. However, he was a little tiring. in that he liked to not just tell you about his achievements but kinda emphasised them at one point telling me how much harder it is for a kidney transplant patient to get back to fitness than a lung transplant patient, which seems odd given lung patients have the whole unstable rib cage to deal with. Blah, I shouldnt judge, but it did make me wish I had been able to do some of the fitness stuff he had done.

watch out for an update on photos once i get them and know fully what they are getting used for?

After that I had a med trial for my new nebs. They have put me on a trial of antibiotic nebulisers. Sounds easy huh. Not so much. First off, to minimise the risk of reactions with them, you have to have a quick acting bronchodilating medication first. The problem with this med, is that, it makes me extremely shaky. Most nebs come in little plastic bottles that you tip into the machine and the machine turns the liquid into smoke you inhale, once done you put the plastic in the bin. Not these ones. They, come in little glass vials that you have to snap the top off, then you have to open another bottle of saline and using a syringe, draw up the right amounts and mix it. Then put it in the nebuliser.

So this one simple new med, in fact involves 2 plastic bottles, 1 glass bottle, a syringe, a needle and a new nebuliser piece. Oh not forgetting an nice sharps disposal box to put the syringe and glass in. Times that twice a day, you have a hefty lump of new stuff to store.

Oh and I have now learnt that i have to mix the stuff before I do any of the meds, as snapping glass and using needles, when your hands wont stop shaking, is not a good idea.

So, right now, I am feeling a little overwhelmed and still trying to figure out who supplies what. You see, the medication will come from my GP, but the needles and syringes come from somewhere else and I am not sure who deals with my sharp box. Its all very puzzling.

But, after only a couple of doses, I am feeling better for it, still coughing, but the stuff isnt quite as crappy as it once was.

so yay at last, things seem to be heading in the right direction, lets hope it carries on that way. And, I am also looking into replacing my nebuliser, with one that will run much quicker and quieter. Right now, my neb time, if I do all my nebs fully, is about 2 hours, twice a day, to get my essential ones done, but I avoid extras and try to get away without some on days when I dont have the time, like when I have a 2 hour drive ahead of me at 8am. With the newer nebs, I can get that down to 30 mins twice a day, which is much better. I do have some money put to one side, so I just need to figure out which one will work for me.

Today was liver clinic in Leeds and so that was another early morning. I used to love the drive across to Leeds, its such a pretty view and this time of year, its usually sunny. Nothing better than driving across some of the highest motorways in the UK, windows down, music on. Alas, it was heavy rain, flooding and fog, in July, welcome to Britain.

But everything looks good from the Liver perspective, which is great news. Over 9 years and no real problems with my transplant. I am a very lucky girl

And now, I ache from driving, so im going to go shake myself to sleep hehe.

Stop playing

So, last week, I was beginning to get a little tiny bit hopeful. Once I started the long term anti biotics, I was coughing less and my peak flows remained steady for a few days, and then began to rise. The only change was the meds and so I began to feel a little bit hopeful thinking at last my body is playing along.

But, less than two weeks after starting them, I am once again coughing and my peak flows have nose dived once again.

I think numbers on peak flow dont really mean much in terms of how things effect me, so this kinda makes more sense. I should have a peak flow of about 450. I have no idea what that is like, my best is about 300 (right after surgery)

At 300, I am amazed, I can walk any speed and even on a mild incline without getting breathless. I can get to the top of a flight of steps and carry on walking at the top.

At 250 I notice only a tiny amount of breathlessness, usually when on an incline so I slow, or I notice at the top of a flight of steps that I am panting.

At 200, I have to slow a lot for an incline and still get breathless, I begin to slow down my pace and I have to stop to catch my breath at the top of a flight of stairs.

At 150, any walking has to be slow and I still pant. I generally stop half way up a flight of stairs and again at the top, where it takes about 4 minutes for my breathing to settle. I also generally switch to mainly whispering when I talk as it is not as exhausting. At this point, coughing fits become a lot harder as I struggle to get the air in after a cough. I can often be seen, standing with my legs crossed and an arm over my abdo to support it whilst leaning over to cough. This supports the area where my hernias are,to try to prevent reputure, but also means, I can generally catch myself.

At 120, All of the above, but with the added joy of headaches kicking in. If I ignore the headaches and keep pushing on, My limbs generally start to feel heavy and I have difficulty moving.

Right now, I am averaging between 130 and 160. But today, I had a major coughing fit whilst out. I leaned over the shopping trolley for support, but I could feel myself gasping to get the air in inbetween. I honestly thought I was going to black out.

My lungs are sore, well not really, I have pains in my chest, but I know the lungs have no nerves so its not the lungs,yet it dosnt feel muscular. There is still good air entry, it just feels kinda heavy and sore.

I think, I may build up the courage for a GP appointment soonish. Im going to ask about trying the inhaler form of one of my nebs, to see if it will help during a coughing fit. I dont know what else to do and I am not due in London till the end of January. I can probably make it till then, but it will mean a lot of sitting around and not much doing anything. You see the bad side of having a doctor so far away, is that I never actually get to talk to him. In the two years I have been under him, I have only been to 3 clinics and theaters are not the ideal place to set up plans.

This too shall pass, just wish my body would react normally, isntead of playing along for two weeks.

still going

ah I havnt managed to get on here much this week.
Things are ok, but it has been a long week.

The antiobiotics the docs put me on, did exactly as we thought and increased my anti rejection levels. Many phone calls,more bloods and a few appointments later, I had to stop my meds for a couple of days and then rebegin them. Things have settled now, but I am still coughing a lot. We dont want to have to keep guessing with meds, so more cultures have been sent for and the results should hopefully show more.

My mood has not been in the best place this week and I do fear that things are begining to slip, but we shall see on that one.

Exhaustion is my main problem. And a couple of nights, I have woke up really gasping for breathe. My issues, as usual is that I dont want to worry anyone.I dont want to make a fuss. What if it turns out to be nothing and just me over reacting. I wish there was some test I could do at home that would instantly tell me either your fine, or you need treatment.

Going to try moving more tomorrow, so we shall see on that one.

And on that nore, im going to go sleep as I am exhausted. Though I did get some pretty pics yesterday that I still need to transfer off my camera.

Good while it lasted.

I have a strange feeling of dejavu
Its dark outside, after midnight and I am quietly creeping in through the front door.
The house is quiet is in darkness and quiet.
I lock up and put the alarm on, before creeping up the stairs and into bed.
There is something missing that is in my memories though.

Alcohol.

When I used to come in, it was from a night out partying.
I used to go up the stairs on my hands and knees to prevent falling over or because my feet were sore from dancing.
Tonight, it was out of exhaustion.

I have just gotten back from A&E.
Mum has had a bad recation to the chemo again and thrown a temperature.
I took her in at 4 this afternoon and have just gotten home.
Although all her results look clear, as she is feeling rough and has a temp, they want to keep her in over night.
She has just had a cry on my shoulder. I wish so much Icould take this pain away from her.
To perhaps deal with it instead for her.

You know, I always thought that I has a low pain tolerance.
Sure there has been the self inflicted shit, but her, that differnce.
But medical stuff has just kinda been accepted.
I bearly notice them putting canulas in these days and flushing them when they tissue, is just something that goes with them.
But, watching my mum in tears with it, every time the drip is moved.
I wish so much I could take this away from her.

But then, I guess you know its going to be a bad day, when you wake up and can bearly move one side of your face.
This morning, I was virtually stuck to the pillow (I know so attractive)
Upon a prod and a poke and making it to the mirror, I discovered that I somewhat resembled a hamster.

So, off to the on call docs it was for me. 

They think its a sinus/tooth infection.

So much for me being proud of making 5 weeks without antibiotics.

Hello Amoxicillin. 

Lets just hope it clears up quick.

Its starting to bug me as it goes right up to my eye and when I blink, it rubs on my glasses.

Not to mention, that I cant put any weight on it.

Which is awkward for sleeping and means its painful to wear my humdifier.

So yeh, my plan of spending the day running treatments, has gone out the window.

Tomorrow will be a better day.

Thoracic surgeons in the morning.

Its a close by clinic and I do like my surgeon.

hospitals and more hospitals

What an exhausting few days. So much has happened in a short time and right now, I feel totally spaced out.

So Sunday, I still felt rough, but managed to get going. Took all my meds, managed to eat and got the train to London. I dont usually sleep on the train, but within 10 minutes of sitting down, I was dead to the world, and didnt wake at any of the stops, until people started getting off Euston.

The sleep must have done me good as by the time I got to the hospital I felt a million times better. I must not have sounded it though as the nurse attacked me with nebulisers within 2 minutes of getting through the door. Perhaps it was the heart rate of 135 that sent him a little anxious. Either way, I slept all night, changed wards once the staff changed over,got ready for theatre and then slept all morning till about 1pm.

Went down to theatre about 2pm. Nothing special really, had a natter with my surgeon as we discussed the uselessness of the hospital and such, exchanged the usually banter with the irish male nurse dude who is to easy to wind up and then off to sleep.

Upon waking, things didnt feel right. I knew it wasnt right, everything was aching and I was using my accessory muscles to breathe. I tried telling them what was wrong, but I was to spaced out to coordinate talking. Time plays tricks on you in there, but I know I saw a series of people. From the recovery room doc, to my anesthetist, to my surgeon to another anesthetist, xray and a few more besides. We think that my upper airway had swelled more than normal,which was making breathing hard. After an extra hour or so in recovery,lots of yummy meds and some extra painkillers as my muscles were so sore I thought I had run a marathon, I was finally sent back to the ward, to be closely monitored.

I needed the loo, so my nurses said, i know you dont like to be hassled so i wont get you a commode as we are supposed to, just let me know if you feel ill. haha. and that was the end of my monitoring.

Everything passed uneventful. My surgeon said things are looking good, but we are still going to keep treating it aggressively with monthly admissions. And I got the train home the next morning.

And that is where the fun began.

I had had my painkillers increased but when I got off the train, I was not due any for at least an hour, so decided it would be good to run some nebs and have a nap. When I awoke, I felt really hot and sick. Took some anti nausea medication and then ran the loo as it wouldnt stay down. Over the next 4 hours I spent the most of it throwing up. My mouth was so dry, I couldnt even use medication that dissolves in your mouth. I was so dehydrated, but I couldnt do anything about it.

So, once my dad got home from work, it was off to A&E. Mum couldnt take me for obvious reasons and so poor dad got stuck with it after working a 12 hour shift. Sat in A&E for 4 hours before seeing a doc, again i spent most of it in the loo. Finally got an IV going and sent off bloods and got some IV anti sickness stuff. At this point the stuff made me go a little loopy and I kept talking absolute crap and losing my thoughts mid sentence.

I sent my dad home as he had to be up at 5am and it was already 1am. So more xrays, more fluids and more tests. by 4:30, they decided it was my chest playing up and the stuff off my chest upsetting my stomach. Pushed through some more IVs, let me sleep a little and then made me drink loads. As what I drank stayed down for a few hours, they declared me fit and discharged me.

I got home at 8am this morning. and yeh. Exhausted still shaky and sick, but tryin to keep fluids up. Apprently the doc could see a lot of scaring on my xray, but that will all be dealt with by my chest consultant. And right now, I am trying to run a load of nebs as my chest i think has more fluid in it right now than my blood stream heh.

And that was my night. Watching and laughing at some of the dramatics in A&E. Such as one lady screaming in pain in her abdo, and over dosing on her inhaler to get rid of said pain. Not sure how that one works as the inhalers only go to the lungs, but I guess it would shove her pulse rate up enough to get some attention. Plus she only seemed to scream when there was a nurse about. And the guy walking around clutching his chest, looking like he had heart burn or indigestion, but all the while, drinking an acidic fruit juice. on my and these people actually go and sit in A&E.

I look like a scruff as I have not washed, and have tape marks up my arms from bloods and gases and lines and what not. but its all good as I dont plan on seeing anyone today and may just push to having a bath later.

coughy cough

Last night and again tonight, I find myself reaching for the painkillers. Its not throat pain this time though. My back, shoulders and abdomen, ache so much. I can ignore it for the most part, but then, I go into a coughing fit and find myself clutching my sides, trying to suppress the cough as it hurts to much. Feels like I have spent a couple of hours in the gym.

I am very productive and very cough ridden at present. I have been making sure that I am active so that things dont settle, but I have a feeling there is still some sort of infection in there. The main problem with this? I am still on antibiotics and in fact finish the course tomorrow. Although, I have had no temperature, I dont think that I have been infection free for at least 6 weeks. Antibiotics dont seem to be shifting it and I am worried about the damage that it is doing to my lungs.

I should make a GP appointment, but my regular GP is off at present and after the whole emergency appointment with the other doc and then canceling the follow up due to sneaking off to London, I would really like to avoid seeing her with this. Maybe, I just dread getting an I told you so off the doctor and her saying something like, quicker treatment might have prevented this. blah.

I dont want this to still be in my chest on the next London surgical trip. That could be disastrous. Perhaps a course of IVs would help, but that would mean being in the Royal, and who knows what I will end up with in there. And home IVs wouldnt be an option, I dont think, due to infection and lousy veins.

Lets see how tonight goes. Hearing test in the morning and hopefully, my chest will have stopped playing up.

Escape

I have had a wonderful, exhausting, fun few days.

I took my youngest niece and nephew to London for a couple of days.

And even met my new man (he just dosnt know it yet) on the subway. From the side he looked like the Vampire Eric from true blood *swoons*

Oh and that is my hat, but my niece stole it!

We had bubble milk and Banana soup. The soup was ok, but the bubble bits are semolina ick.

It was fun and very exhausting. Though, we could have spent much much longer there. I love spending time with the kids, especially when I get to play the adult, dealing with bed times, bath times and food. I like the way things are at the moment, I am at the age now, where I can kinda whisk in and play the cool Auntie role that I have always wanted. They listen to me and do as they are told, so I dont have to do any of the horrible shout at them bits, just the fun stuff.

Its great in a way, as I have said before, the kids know that I am sick all the time and the youngest, Bethany, wont remember a time when I wasnt sick. But if anything should happen to me, I dont want them to think of me as sick, I want their memories to be of fun times and lots of love. I think I have achieved that.

Though, it is kind of bitter sweet. By building nice memories with them, I am in fact getting closer to them and should anything happen, it will be more upsetting. Bethany confessed to me the other day, that there is one song that reminds her of me and every time she hears it she cries. Apparently she listened to it lots when I spent last Christmas in hospital.



This makes me sad, but the lyrics do fit. Especially the bit about hearing your voice. We do have a very close relationship and she is the one I would miss the most, that kind of unconditional love and having her come to me for advice and such.

In other news, I got in trouble for canceling my doctors appointment last week (oops) They apprently rang ours to get in touch and spoke to my mum. My Tacrolimus levels where messed up and through the roof (Hence why I was feeling so rough) and I had grown an infection in my sputum off my chest again and so needed antibiotics.

So I started the anti biotics as soon as I got home on Monday, but I had a follow up appointment today. She told me to stop the antioboitcs and gave me a new set, as my chest had then gone on to grow a second further infection that needed different anti biotics, fun fun fun. One of them was Staphylococcus aureus, again and I forget what she said the second one was, I think it was Haemophilus influenzae. But at this rate, I am going to end up getting medication resistant to the staph. Thats at least 8 times in less than a year and I am doing everything I can to keep my chest clear.

So more antibiotics, this time with the ones that mess horribly with my stomach, oh joy of joys. And more bloods at the end of next week to check kidneys and medication levels. My doctors just love me, can you tell hehe.

Oh and where I have the sore nose off my humdiferie, is also the same infection as on my chest, so I need to stop using my humdifier until everything has cleared up. Oh well. sleep time now.

The Royal

SoI vanished for over a week, and what a week it has been.
Last time I posted, I had started some anti biotics as I was feeling unwell. I went to bed and slept well, though did wake up early to mum shouting at me to do my nebs as I was coughing a lot. I felt even worse when I woke up so I checked my temp, and sure enough it was high again at 39.2. I was starting to worry, as the temperature was so high and I felt so rough with it. Of course, me being stuborn, was doing the whole, I have meds, I am fine and not getting any further help. So I tried to sleep it off.

By 5pm, I literally felt like I was dying. Everything ached so much, I was shivering despite having many layers on and although I felt the need to cough, I wasnt, partly due to hurting so much, but more so because my chest was backing up. I checked my temperature again, and it seemed to be going up and was at 39.8, despite having taken painkillers an hour before.

I knew at that point that I needed more meds and I really didnt want to go through the night incase my temp rose anymore. From training I remember that 37.5 is a temp, but once you get to 40, you run the risk of brain damage and seizures. So off I went to the Royal Liverpool Hospital. Now anyone who has known me for a while, knows how much I hate that hospital. To be fair, its about 3 years since I was last in there. But generally its unclean and the staff dont know what they are doing. I had no choice at this point and so off I trundled to A&E.

As soon as I stepped foot in A&E, I was moved straight to resus as my breathing was very noisy. After sometime, I saw the doctor who ran a load of tests. I had a fast pulse and high blood pressure, but my oxygen sats were remaining stable at 96%. Although they were not low, the doctor decided he wanted to check my arterial gases anyway. Ouch!! My artieries are well battered and deep, it took him a couple of tries and he hit a nerve a few time, but eventually got it. Well, all my gases were out of the normal range, meaning I was storing Carbon Dioxide. This along with the temperature was why I was in so much pain. I was started on a couple of differnt IV anti biotics a load of new nebs and some painkillers. I was moved to an assessment ward.

They expected the meds to kick in pretty fast but 24 hours later, my temperature was still jumping every 2 hours. There was also difficulty keeping an IV in as my veins were shutting down within an hour of stopping the IV. I was changed to oral anti biotics and given tons of chest physio and nebulizers every hour.

I dont deal well with small amounts of sleep so being woken constantly as well as feeling crap, began to wind me up. The nurses were busy and so when I started to feel rough, I was unable to do much. I told them my temp was going up and that I needed painkillers and a drink, all of which I kept getting told, in a minute. I curled up in agony but then began to panic. My throat was dry and felt like it was closing not to mention my muscles were begining to ache more.

In the end, I burst out crying at one of the nurses. She was a little shocked, but then told me that I didnt need oxygen as my levels were fine according to the machine. At this point, I wanted to scream that my levels where fine last time and in A&E, but that wasnt why I was on oxygen. In the end, I demanded to speak to a doctor, as I was getting scared my airway was about to shut down again.

The doctor didnt really listen and in the end turned around to me and said, well there is no mircle cure to fix your throat, you should just learn to get on with it. At this point, I truly wanted to scream. I was not looking for a miracle cure, I was looking for the correct meds, and for someone to keep an eye out and keep me breathing should my throat go on me.

Anyway, long story short, they wanted rid of me and so moved me to a respiratory high dependancy ward. This was much better, it was clean, the staff knew what they were doing and I was able to get some sleep.

It took about 5 days, for my temperature to settle down, but then my cells in my body began to play up. The CRP which shows if you have an infection, should be about 5 or below, mine was reading at just over 80. Then, my immune system took a hit too. As I began to get better, my infection fighting cells, dropped right down to almost zero. I was immediately put in isolation and everyone who came in had to be gowned and such.

I was not allowed to leave my room, until the cell count came back up to closer than normal. I had bloods drawn daily and a load of tests done to ensure that there is no underlying reason why my count dropped so low.

I still feel pretty crappy and keep getting stabbing pains in the bottom of my lung that has had surgery. But now, I just need to work on getting better again. Its amazing how much fitness I have lost on this admission. Usually, I work hard to keep moving, but feeling so rotten and being in isolation, meant that I didnt really. Simple things, like tying my hair up today, left my arms aching like mad. So thats my next thing to work on.

Not to mention that I now need to rearrange my admission to London as I missed it this week.

So that was my exciting week, spent in the hospital, again, bored out of my mind. I also missed my mums 60th brthday. I was discharged yesterday, and now I am going to enjoy curling up in my own bed and sleeping right through. No sill early morning breakfast wake up calls.

Fun!!

I have had an amazing couple of days, so much so, I have hardly spoken to any of my online friends, sorry about that. I had fun, I forgot most things and I felt my age!

Friday morning, it was up bright and early to go to the first showing of Harry Potter. As we were out so early, we went for breakfast. I has pnacakes and bacon and I must say, it is one of the nicest pancakes I have ever had yum yum. I planned the route to the cinema, in such a way, that hills and stairs were swapped for escalators and lifts and I did not exhaust myself.

The film itself was wonderful, I wasnt as excited as I could have been as I didnt really get into the book for one reason or other, but the film was edited wonderfully. And a big section of it was shot in Liverpool, where they are in the tunnel near the start. Apparently there were other bits too.

Driving through the city centre to get home, and some bus driver stopped in the middle of the road, the car behind kept beeping at us to go on the pavement to get around, but my friend shouted, just wait. Next thing we know, we are at the lights and she gets out the car and tried to get in our car to shout at us. Total loon, good job we had the doors locked.

So came home and slept for a couple of hours then got ready to go out clubbing. I wish I had more pictures, but my web cam was playing up and I have not got any off anyone else yet. But I curled my hair and wore a strapless top.

It was for a hen night so they had hired a party bus. Again, I suck with pictures, but it had a dance floor and laser lights and a bar, so yeah pretty fun. We did get kicked out of the docks though as a load of the girls went for a wee behind the bus, but oh well.

It was a good night, from people dancing on the chairs, drinking through socks and raising money with a cowbot hat to get then hen drunk. Actully made £83 in about 30 mins. It was a good night. Got in around 3 am. The good thing about clubbing, is that the music is that loud, I can actully make out the lyrics. I enjoy the music so much more when I can hear it. It also kinda helped me to regain some faith in my friend. She is one of those people, who dosnt really deal well with sick friends, she kinda vanished when I got ill. Now I am getting better, she seems to be back. I dont know, I in a way, dont hold this against her. At that age, not many people want to be spending all their time visiting a friend in hospital.

So Saturday, I did my usual and helped my mum with shopping then came home for a nap. I was exhausted. We had a neighbours part to go to that night, so it was off out again. I lacked energy to do anything with my hair, so I just kinda clipped it up. It looked kinda elegant if I do say so myself.

Though this was the end of the night so it had fell down a little.

Sunday, I literally blitzed the living room. Sorting out paper work, putting stuff away and general cleaning.

I think I may have overdone it this week though. I went to bed last night and could not stop coughing. Today, my temp has spiked so its back on anti biotcs. Just hope they kick in before the next weekend. I shall post more tomorrow. Right now, I am drained and ache all over from coughing, even my knees. But it was worth. :)