Rhodes

I am well and truly home! Within an hour of getting back, I had swapped my tshirt and shorts for fleece pj's and even went as far today as to buy a new fluffy dressing gown to keep me warm. I have a feeling this winter I will be doing a lot of snuggling up in its warmth.

In contrast to while I was away, I didnt see a single drop of rain the whole time I was away. It was a wonderful holiday, even if it was a little aggravating.

The night before we left, I started with a migraine, that developed into the worst migraine I have ever experinced. I was dosed as high as i could on a variety of meds, but up until 30 mins before the taxis to the airport was due, I still had my head down the loo and could not open my eyes fully. I got some odd looks going through security wearing sunglasses and although I wasnt sure if I would be allowed to fly, I had managed to get most of the symptoms under control by the time I got to the airport.

The migrain continued off and on for the next 4 days unfortnley, but I still managed to get out do things, if a little slower than I would have liked. It was after all a relax type holiday rather than an active type holiday, which helped.

There were so many memories I wish I could bottle up and keep, to pause a moment in time and recall every detail of it for many years to come. Simple things, like lying on the beach, a slight breeze keeping the air comfortable and the sound of children playing. A dad wrapping his daughter in a warm towel, a mum moving a sleeping child to the shade, the sea reflecting the sky. Every part evoking its own memory deep within me and still keeping hold of the current memory.

It was such a pretty place. You could barley tell where the sea ended and the sky begun. We were lucky, the place we were staying was way out of the commercial area, it was quiet and most touristy type places had already shut. The beauty of the place was stunning.

 It helped that we were high up so the view from the balcony was breath taking. I sat out there at least twice a day, running my treatments, I was very proud, I didnt miss a single one. Of course, the downside to being so high up, was that the lift only went half way and as the week progressed and my air way detoriated, the remaining stairs took longer and longer each time I had to climb them. But on holiday, there is no shortage of time and so I was able to make my way at my own pace and collapse on to the bed as soon as I got into the room.

We had a wonderful meal, in a restaurant on top of a building. It seems the way there, to lead you up a narrow entry and you seem to go up and up and up, until eventually reaching a restaurant on the roof, with views across the whole city.

You can see from the doorway, all the way up to the roof.

And once seated, you get a great view on all the layers back down.

Not to mention across the entire city. We also managed to time it right to have greek musicians playing the whole time we were eating.

Even on the days were I was unable to leave the room, I felt a peace. I could lie on the bed and gaze out across the balacony. My parents seemed a little annoyed that I was unable to keep up with them, after all they are both in their 60's, but they under stood how much the heat wiped me out. They bought food and drinks to tempt me and did there best to keep me cool, even when I was so far asleep I could sleep through them talking to me.

 On the good days we made the most of the time and ventured into the towns. Everything was so colourful and bright. There were so many things to see and do and smell and just take in.

And, even after all these years (44 to be exact) it is nice to see them still so in love. I have to recall these moments sometimes, the laugh and smile of my parents when they seem care free. Some days, it is easy to lose sight of their comittment. Admit the stress of everyday life as well as medication side effects, they have a tendency to snap at each other, to shout or complain for no real reason. But I think I see them being the old couple in the nursing home that the staff still have to shout at for rowing over simple things like where to sit. Hopefully they have a very long while before they hit that point though.

And now I home, I feel rested, though not yet strong enough to make any plans. But that shall follow another day. For now, I am holding on to these memories tight, for they are strong and warm.

gotta give

Something has to give, something has to change. And it has to change soon.

My last post made little sense. And this post is even harder.

Everyday my breathing seems to be getting tighter. Where at one point, I used to feel breathless, now, I feel the trapped, I feel it trying to get out, i feel it stuck. My body crying, screaming for oxygen, my lungs pumping it and my throat unable to keep up. The pressure builds, the effort increases, things go fuzzy.

I know I complain lots about sleeping too much, but this is beyond anything I have had before. I can barley keep my eyes open. Long sleep, unable to wake. Inability to read anything as my eyes keep going crossed trying to stay open. Right now, I type with my eyes shut, jerking awake suddenly every sentence or so.

But sleep is not as easy as it seems either. Everytime I sleep, I drift off, begin to relax, begin to rest, before suddenly being ripped back into reality my lungs once again complaining, forcing the air through the smallest of gaps. Shift my tube, make the gap slightly bigger and I can sleep again. Sleep until the next time. Hourly on average. Right through the nights.

When moving my tube brings me to tears, then I no know it is time to top up the painkillers. I hate them too. Yes they make you more sleepy, but the pain is extrodanariy. Like somebody has a knife to my throat. The slightest movement.

A world of painkillers and sleep. But its not enough, its not comforting. What if's play through my mind.

So many symptoms. Shake head rapidly to force eyes to focus. Everything a struggle. Conversation, impossible, movement exhausting. I walked 15 steps earlier, from kitchen to living room. Over 5 minutes to get my breathe back and another 20 mins to get the energy. Cant be bothered with food, to much effort.

Sleep calls once again, only had 19 hours to day.

I need help. I know I need help. Beyond anything I have done before. Is this what dying feels like? Is this what the end will eventually be like? Pity from people. Doctors, giving you everything you ask for. Parents making you sit still. Looks of concern. Skin so pale.

I need that help and I need it soon. I need it tomorrow, not later. But off who.
Main surgeon says nothing he can do, says speak to home team. Home team say, nothing they can do, speak to main surgeon. Like a child, go ask your mum, go ask your dad. I dont have the energy to play, I dont have the ability to be elquont. I have reached out, I have asked for help. I have hanfef control over.

Time to drift off into nothingness. Tomorrow will see a change one way other. Tomorrow help will come.
I hope it does anyway, this is getting beyond my ability to handle small quantaties of fear.

Tomorrow or bust!
Something has to give.
Giving into inability to see.
Cant make out letters.
So good night.
And thank you.
some rest please now.

urgh

Well, I am still not breathing right, its getting kind of annoying now.
I am telling myself that it is nothing to worry about, I have been through this before and it does clear. I am happy enough with that.

The hard part is that, it has never been this server or this long lasting. Normally my peak flow drops to about 120 minimum for maybe 3 days. Right now, it has been about 5 days and my peak flow currently sits at a rather scary 80 l/m. Its frustrating as even the most simple tasks leave me panting and I am unable to finish my sentences in one breath. Its never been this low and I know I am only dealing with it, because my body has adjusted to crappy oxygen levels. All I seem to be doing is taking pain killers and either sleeping or struggling to stay awake.

I have to have a backup plan. My plan is, if things have not dramtically improved by Tuesday, then I will contact my surgeon and ask him for an emergency review on the wednesday.

I need something in my life other than illness and hospital. And I am still searching for something. But this latest flare up, is making my search that much harder.

Time, time is all I need at this point.

Fear

I havnt posted much recently. I guess I have been getting on with life.
Not to mention trying not to complain as much. I have things pretty good, I know I do and believe me I am thankful for that.

But then, there are times, when I know how lucky I am, but I also know something isnt right. But I worry about seeking help, incase I am wrong, that things are fine and I am over reacting. I know I have written about this feeling before, but at time like now, the feeling gets so overwhelming. I know its ridclous and that doctors trust me, but learning to trust myself is a whole differnt level.

Right now, I am on antibiotics again, as I have 2 sets of infection in my trachea/lungs. Staphylococcus aureus and Streptococcus. But right now, breathing is tough. It feels like I have something stuck in my throat, other than the obvious metal tube through which I am breathing. This means, my breathing is hard, restricted and noiesy. But here is where it confuses me, I can kinda breathe around it, as so to keep the noise down, but sometimes, I cant and thats when it gets scary.

The video, is more for my record, but you get the idea. Its just regular breathing.

So, I have clinic on wednesday. And one part of me says please let it be nothing as I dont want any anything else to go wrong, while the other part of me says, I hope I am not exagerating and that there is a genuine problem. While the other part of me that comes out when things get scary, says, please admit whilst I am down there and sort this out to stop it being scary.

I think in conclusion, that we can see that i get scared easy. Im scared of my own body and that sucks. But deep down, I dont want to show my fear, and so I only want to mention genuine problems.

So this is me, addmitting, that the world can be a scary place and that my mind is a bit of a mess at the minute, but I have not given up.

still breathing

Its strange, to be a couple of weeks out of surgery and still breathing.
Dont get me wrong, my breathing isnt fab, I still cant run up the upstairs, despite doing it a couple of times a day.
But, I can go up them at the same ok speed that i have been doing for the last week and what is more, I dont have to stop halfway. I try ti avoid running up stairs, but every so often, my mind forgets and I run to the top without thinking. At the top it hits me and i have to sit a few minutes. But that will come in time hopefully.

This is where I start to see the benefit. I am at the point now, where I would begin my downwards slope. But this time, the tube is there, so, I should stay the same. I should stay stead and allow my body to catch back up. The good times are coming.

My wound healing is getting there, albeit slowly. Its taking multiple dressings a day, still a little painful and its going to leave a huge scar, but I am healing is safely, from inside out. Looks like my nurse training wont go to waste after all.

Thinking about it I do have more energy. Its slow coming and I am not going to go out and run a marathon anytime soon. But once i am up and moving, I feel awake and ok. I dont feel as drowesy and I dont want to curl up and sleep every spare minute. Hopefully this will continue. Though addmittedly, I still dont get up till lunch time.

But this is where my current issue lies. To get out of my rough patch I had last, mentally speaking, it involved a lot of non thinking as I call it. I dont let my mind wander. and I know locking things in can make things worse, but for now it works. During the day, my mind is occupied. Of an evening, I keep it occupied, be it crafts, films, online junk. Its almost become habbit. I hate doing nothing, so even if just my hands are busy it is enough. Of course, to keep this up, it has always meant that I dont go to bed, till I am at the point where I know I will get to sleep very quickly. Usually within 30 mins as my ipod goes into sleep mode then. But lately my mind isnt going into the sleep mode. No matter how much I do during the day, no matter how early I take my pills, no matter what. If i go to bed before I hit that point, I end up in a bit of a mess making it harder to sleep. But I cant stay up all night and I am exhausted when I try to wake up. So sleep is one of those issues that still needs work. Its at a frustrating point, but I dont want to change to much too quick as I am still adjusting to sleeping with my new neckwear and things are not settled yet. soon though, I am going to make a big effort.

But for now, yay.

One day at a time.

Life is changing, evolving, growing.
I need to change my priortise.
I need to work out what is important.

I am still might against the trach, but perhaps if I give it a chance, it can work out.
I must admit, it would be nice to not spend so much time in and out of hospital and theatre.

I am also not in the same position that I was last time I got one.
It was a sharp wake up call when my surgeon close to home reminded me of that this week.
How last time, things were desperate. There were a lot of close calls.
As he put it, I was very ill and very weak.
I worried him a lot and scared the heck out of him when I would drive to college despite being to breathless to get a full sentence out.
As he said, we dont keep people in ICU for weeks at a time for fun.
And not many patients stay under ward care for 5 months.
And as we joked, not many patients would get the privalage of the hospital staff seeking his advise at a 3am.

I am strong and in so many ways. This is going to be the turn around.
It has to be.

I am still putting a plan B into place though, which may still back fire, but is a risk I think I need to take.

Right now, exhaustion is setting in. If i am active for more than say 30 mins, I get so exhausted that I just want to sleep. Im aching from coughing also. But I am not as restricted as I thought I would be. Although it is tiring, I am still able to do jobs without feeling like I am about to collapse. This is all positive. This is all great.

I am spring cleaning my room and sorting my wardrobe out, to make things easier to, so I hope to get that done soon. It would be nice to see my floor once again.

One day at a time.

Free

I still stand by my last post, but the last couple of days have really tested those feelings.

I awoke yesterday with the worst migraine I have ever had. I went from being fine to not being able to open my eyes within 5 minutes. Dark and quiet on a hospital ward is impossible. I took the painkillers, blocked my ears and burried my head under the pillow. Doctors came for ward rounds and I particpated with my hands over my eyes, only opening when I had to. After more meds and drifting in out of sleep, I was thankful that the docs had given me plenty of nausea meds, the thought of retching, while my neck was still held by staples terrfied me. 

By mid afternoon, I began to lose the pain yet still felt rough. I ventured out for tea as my parents were visiting, but I didnt cope very well with it and spent most of the time trying not to pass out. Both perantels noticed that my breathing was worsening, which says something, but I kept hoping to put it down to having not moved as much in the morning. I doubled up on all my nebs before snuggling up in bed.

I actully had a great night. There is something to be said for sharing a bay with 3 like minded people, all 3 of you wrapped in blankets, sipping hot chocolate and just having a good old joke. I laughed so hard. They were amazing people, same mind set, all been through hell, yet able to smile and yell whats next world.

So they decided today, I will be going back to surgery next week to get the stent out, so it was upto me, if I wanted to wait in the hospital or go home till then. I opted for home. I think that choice maybe harder than first thought.

So tired. I went up the stairs too quick when I got home without thinking. My sats dropped to the low 80's, but I found myself curled up in the fetal postion on my bed. It felt like I had a knife going through my heart. The pain was agony. I must remember to slow down.

Its so differnt getting my head around this. Usually after a big op, I have the whole adjustment of a trach to add in and it takes me about 2 weeks to begin to feel human again. This time I had a mini trach that was taken out after 24 hours. There was no adjustment and by 4 days post op, I was itching to get out and could not understand why I was still on the ward. I felt great and I felt more like I had had laser than a big op. It wasnt until I began to feel rough again, that the nurses kept reminding me that it was normal to feel rough, I had just had major surgery and a spell in ICU. I was taking to much for granted.

So I am home, and I need to keep reminding myself to slow down, to rest and to try not to let this fear get the better of me. Its ok for things to be hard now, it dosnt mean things have not worked, when the stent is out, things may get better. I am not going to have the same issues with this stent as I had with my last stent. Its less than a week, in less than a week, I will be safe again. I can do this. It is so worth it.

Just keep your head above.

I have said it before and I say it again, I love this time of night.
I love the quiet, the stillness and the chance to relax with nothing that needs doing.
I could easily put my headphones in right now and just space out for an hour or so.
Or swap my night and day completely.

Things are changing, I can feel it. Change is in the air so to speak, though I am not sure how yet.

I am readying a book at the moment, that has really bought a few things home to me, in terms of life and sustainability.
I do already make the most out of the time I have, when I can. I know that the future is unpredictable as is my breathing. I hope it improves, but I also know it can worsen. But more so, the book kinda highlights the problems associated with being transplanted young. Admittedly its a positive book and such ( I will give more details when I finish it but right now I am savoring it) but it does also bring up the subject of the longer term effects of the immunosuppression, which I have always thought comical that it includes both Liver and Kidney failure. Dont get me wrong, compared with the dying if not transplanted, its nothing to worry about. But a lot of people view transplant as a cure.

More so, it is swapping one set of problems for another. There are complications, you have to look after yourself. You avoid certain things and you have to become defensive of your health. Most health professionals know very little about transplant, so you have to guard yourself. Check every medication wont interfere with your rejection levels, make sure none will damage your live. Be on the look out for infection as it needs treating quick. Organ failure is only one effect of the medication. Last month in clinic in Leeds, I was talking to a lady who was being treated for skin cancer due to the medication. So, when your docs tell you to wear sun cream, even in the winter, do it! Especially when your med levels are high. But dont let any of that put you off, I reach 9 years next month!

I found my ICU book today, though I have not opened it yet.

I was reading back over my blog yesterday as I needed some dates for paperwork. Its amazing how much you forget over time. When I look back, at days when I crawled the stairs to bed as I was to tired to even have tea, I forgot about them days. They were back last April, when they missed me off the list for laser. I fear that is where I am heading now. I am just 4 weeks post surgery and done from 300 to 130 on my peak flow. I have no appointment till January. I am not sure what I do from here. Part of me wants to see how long I can last, so I dont have to keep traveling and going through the pain and energy required. But another part of me also dosnt want to be to exhausted that I dont see Christmas and that I cant help out during it. I also still play back the whole, I dont want to waste peoples time if I can go longer.

But this is also my life and I need to live it. I still havnt posted about the possible excitement, and I cant yet, as I have had to put it on pause, until I know if this downward bit is going to level off.

I have gone back to using my neb mask during the day. I run my regular nebs through the mouth piece as I get more, but then, when I am running a load back to back, I switch to my mask so I can tolerate it longer. Tonight I am experimenting. I have added some nebs to my humidifier. I am hoping it helps. Last night, for the first time in a very long time, I woke in the middle of the night needing to run a neb. I hope this is just a rough patch, as right now, it feels like it is taking a heck of a lot to just keep my head above water.



Here is to tomorrow. When things will hopefully look up. And when I should have some news on the front the next few months.

Memories

With my chest playing up at the minute, past memories have been haunting me this week, perhaps making me more nervous.

It was 2 years ago and I had been in and out of hospital with my breathing and had a string of respiratory arrests behind me. My surgeon was going out of town for a week and so the week before he took me in for yet another clear out. I had a stent in at the time as my airway would not hold open. He had been trying to talk me around to have a trachestomy in, but I was still filled with scary memories of ICU years previous and had refused.
Things were getting tougher, to the point that on college days, I would get up at 6, so I had time to get dressed and run treatmeants and leave by 8:30. Every 2 hours when lessons changed, I would spend 30 mins running nebs and an hour at lunch time. But I was getting through the day and that was all I cared about.

But my airway was still complaining. It got to the point, where I couldnt get around the house without near passing out.

I had emailed my surgeon and asked to talk to him as soon as he got back from his trip as as much as I didnt want them to, I knew things would need to change.

Wednesday, halfway through his week off and I was really struggling and so the ward admitted. The SHO was an arrogant twat who basically gave the impression that I was wasting peoples time, because I kept coming in. All they could do was run nebs and give me steroids, which I could be doing at home.

I had prebooked ticket to see the premier of New Moon with a friend for the midnight showing and I was desperate to go see it. So when they decided to discharge me on the Thursday, I just went with it.

I was exhausted and even borrowed a wheelchair as I couldnt make the 10 steps from car to cinema. The film was wonderful, but throughout, I was concentrating hard on my breathing, and not just at the topless scenes.

My friend took me home and saw me to bed where I slept a broken sleep. Mum was in work the next day till 12 and I was home alone. I awoke struggling, but managed to get my neb on and after about 20 minutes was settled a little. I was so exhausted that I fell back asleep, to do the same thing only 20 minutes later.

At one point, I knew mum was due home soon, so I bundled up my neb, and curled up on the floor in the living room, remembering to unlatch the front door on the way past. My reasoning? I could hardly stay awake and if my throat went again I didnt want an ambulance crew having to deal with stairs, as I am not exactly light.

Mum came home and imediatly told me off for not phoning her, but I didnt want anyone to worry. At that point, I was fairly ok and although still struggling I was managing. I explained that I didnt want to have to face that annoying SHO again and so I didnt want to go to hospital. I soon fell asleep again and mum must have dozed off next to me. Next thing I know she is shaking me awake and running the neb for me, apparently, I sounded like I was dying.

The ward said to come straight over and within minutes, I was on oxygen and sat in the bed closest to the nursing station. The on call doc had been called, but it was a busy day and it took a while for him to come. He increased all my meds and asked for an ICU doctor to review as he was unsure about leaving me on the ward. At this point, the SHO was on hand over and said it wont be nescary etc but the ICU doc had already been called.

He quizzed me on my history and took some blood gasses. At this point I was settled so I had sent mum and dad home as they were exhausted and there was nothing they could do.

Once the gases were done, the ICU doc decided he wasnt happy for me to stay on the ward as he would prefare more intensive monitoring and so I was shipped off to ICU. I had never been moved to ICU while awake, it was most odd and all I could think to do was apologize for all the fuss I was causing, and of course to run the loo before they shipped me down there. Of course, even moving down there was a job, as I had to be acompanied by a team of 2 docs and a load of equipment. It was very overwhelming.

That night may have started late, but it was a long one. My nurse was wonderful. She dimmed all the lights down for me and sat outside the door so she could still see the screens but so I had some personal space. But the night continue as the day had, in that every time I went to sleep, I would suddenly wake up unable to breathe.

By morning handover, we had gotten into a pattern of me being able to get 10 mins sleep and then topping up the nebs and so, I had avoided any scary situations. The new nurse coming on, was a little more relaxed and started talking to me about breakfast.

And then, while in mid conversation, I coughed. And thats when things got scary.

Suddenly, I couldnt breathe. I looked at the nurse, with fear in my eyes and tried to tell her, but the words would not come out.I tried coughing to clear it, but I could not get the air in to cough. I remember watching the nurses expresion suddenly change as she began shouting for help, about 6 seconds before the machine began to alarm.

The sudden movement on an otherwise peaceful sleepy ward was intense. within a minute, there were doctors everywhere and the crash trolley was being bought in. The ends where pulled off the bed and a doctor began to check my cannula was still working. Typically it wasnt, and the doctor swore loudly, before tipping a bottle of iodiene up my arm and bed to attempt to put another one in.

Every breath was fight. The anesthist was leaning over me from behind, ready to take my breathing over. The injections to paralse me where ready in another doctors hand on one side of me and another doctor was talking me through breathing. Everybody else was starting at the moniter was my oxygen sats dropped and dropped.

Slowly, the steroids they had pushed through began to work and my oxygen levels began to stablise and then slowly began to rise.

After about 40 minutes, the staff began to drizzle out and the crash trolley was wheeled back out into the hall.

Mum and dad had apprently been trying to phone, but had not got any answer (oops) so had just popped over to see how I was. They were allowed in to see me and I told them what had happened, well a watered down version.

That was one of the scariest moments of my life. The drugs and fighting and I knew that last time, it had been a close call, as they can not get a normal size tube down my throat, I have the have the same size tube that a toddler would have.

Mum had been with me about an hour and was asking if I wanted anything from the shops. It was Saturday and she usually went shopping. But for the second time that day, disastour struck. Exactly the same as in the morning, my throat suddenly shut down. This time the docs knew what to do,my parents however were not prepared and I am glad that I was not in the waiting room when they had to leave the ICU.

Things once again got under control, but by this point we knew something had to change and change fast. My surgeon, who was far away, was phoned several times that Saturday morning, whilst they tried to asses the situation. Another surgeon was called in as an emergency and although he did not know my case, he agreed to come in and see if he could help. The emergency theater team where put together and I said good bye to my parents, not really knowing what would happen next.

This time, I needed a bigger team and the transfer from ICU to theater, was done with at least 6 staff members and a lot of equipment.

The doc removed as much as he could out of my airway, knowing that he could not take to much as my whole airway would collapse.

I woke 2 hours later in the ICU aching more than I had ached in a long time. I needed high flow oxygen to keep my levels up, my blood gasses where everywhere, but that could be dealt with. Every time I breathed, you could hear a deep rattling noise. Tissue had been removed and I could breathe, but every time I did, it aggravated the area and so the area swelled.

I hadnt slept in two day and every muscle in my body felt like it were on fire. Every breathe felt like it would be my last. I hate bedpans and commodes, but I could not get out of bed and so the discussion began to insert a catherter. I hate those as well, but at that point, I felt so beaten that I was about to agree.

Mum and dad sat by my side, holding my hand and willing me to try and sleep. But I couldnt, I kept thinking, if I sleep, I will stop breathing again,my body will give up. The ICU docs came to see how I was doing and I literally begged them, with tears running down my face, to sedate me and put me back on the vent. I was to tired to keep breathing. They want me to keep going, but promised to review me every hour. They were afraid to knock me out and not know how my throat was. That the tube would further irritate my throat and cause more swelling that they could not get passed. If this happened, even a trachestomy would be out of the question due to its placement.

That was one of the longest evening I have ever experienced. I watched the second hand on the clock as sweat poured down my forehead from the effort. The tears eventually dried up and I resigned myself to what would be.

Slowly the seconds added to minutes and then to hours and I began to get some rest in short 10 minute bursts.

Again, the staff were wonderful. Encouraging me every step. Trying everything they could. I needed a more permanent IV line putting in, but even the best doctors could not get a PICC line in my arm as the viens were ruined.

That weekend lead to a lot of tears, from myself, my family and the staff. The theater nurses made jokes about what I was going to wear to the staff Christmas party as I spent as much time in there as the staff did. I had a few more close calls and several more trips to theater while my surgeon tried desperately to get hold of my ENT surgeon, who had just vanished.

In the end, I spent almost 3 weeks in the ICU, developed a very bad infection in my blood that was only picked up by chance before it did damage. I got my first trachestomy and learnt how to care for it myself. Developed an infected line that came pretty close to killing me once again and became a good teaching tool for the ward staff.

I was admitted in November and I was discharged in February.

That first weekend though, is one that haunts me most. The sound of all the docs, the pain of my ribs, the fear in that nurses eyes. I can see it all as clear as yesterday. At the start I needed my throat clearing every 4 weeks, that then dropped to every 2 weeks and in the end, I was needing it cleared every day. I think that is why I am so on edge now. I dont want to end up back in that position. I dont want to fight for every breathe, I just want to be able to breathe. But, I know I can cut myself some slack on the occasions that I do freak out, as they are founded on true ground.

London time

Since I did that speakers training the other day, something has changed. I dont know, its hard to describe. I think, I am finally accepting the whole transplant thing. However, my curiosity is spiked. I want to know more.  I think I need to look at what went on, how things ended up the way they did. Mum kept a dairy. Things like how the day had been, any developments and who visited and such. She showed me a few years ago, but I dont think I was ready then. I think I feel ready now. That is my plan for next week.


I had a gp appointment the other day and I went. But it was silly really as all my problems seemed to have cleared up. Today, one is back with vengeance. blah

Tomorrow, I begin the treck that comes with commuting to hospital. At a time when I realise how much I truly relay on my car. I dread the walk from station to hospital. I usually get a bus half way, but even the last half takes it out of me.

Today, I had a realization. I have not been out with mum moving about in a while, not properly. Today was shopping day and we had to do a good shop as I wont be around till Tuesday and then I will sleep for a few days. And it is her chemo week so she wont be up and about. Several times, mum had to stop and wait for me and visibly slow down. I couldnt speed up. The slightest attempt to felt like heavy exercise and my temperature soared. She always used to tell me to slow down walking and I hated it. But I have, without realizing it. Shows what happens when you dont keep up appearances I guess.

Its a mild annoyances, that I have worked hard not to lose muscle tone even on long admissions. Yet, I am losing it anyway, despite my best efforts. I know there is only so much you can do, but hopefully I will get some relief from this admission. I had to turn my humdifier down last night. It felt like it was chocking me, like it was flowing to fast.

Coughing fits at this stage are also getting more scary, where they leave me gasping in the middle and almost passing out at the end.

So, from here on in, the only way is up.

On that note, nope I aint showered, nor packed my stuff. I have however argued with mum over which back pack to take as she claims I need the one with wheels as I cant carry a bag. I have agreed to leave my beloved laptop at home. sob sob

Transplant

Yesterday was fun.

I had a speakers training course run by the wonderful charity Live life then Give life.
It was basically teaching us how to talk to people about organ donation and how to space out any talks we have to fit into time frames.

It was interesting. Not only to learn the things that were taught, but also to hear other peoples stories and even to speak to others who have had transplants.

There was a lady sitting next to me though, who had had a l liver transplant (same hospital and consultant as me) 15 years ago, she is now on the list for a second one. I guess that is kind of scary, but not as much as I feared. I think, having spent so many years feeling negative towards my liver, that perhaps this is why the thought of an organ expiring does not bother me so much.

Applying the whole expiernce to my situation now, what strikes me the most, is that, even when people were struggling or really ill, they were able to carry on. They had hope and a plan. I think that is where I am struggling now. I dont know where I stand, I dont know what the future plan is. I want to do some course, I want to travel, I want to work. But I dont know when, if ever will be a good time for this. Each month things are reviewed. Each month, I make the 3 day round trip to London. The journey adds on and makes it even harder to recover. I know its nesscary and I am not complaining, but each month, two weeks are taken up by hospital really. I need some long term plan putting in place.

This week has been hard,today has been draining.
Thursday night, my sisters car broke down and so my dad and I went to help her. That was fine, but we didnt get home till 11. It was to late for me to shower and gone midnight by the time I ran my treatments and got into bed. Again, no big problem. But the next morning, I had to shower, dry my hair, run treatments and be parked and in the hospital in town for 12:30. By the time I got there I was drained, by the time I got home, I was zombified and did not do much but stare into space.

This morning, I promised to take mum shopping, but every step felt like I was wadding through water. Every part of my body longed for sleep. I did end up napping for 3 hours in the afternoon, but waking was difficult once again.

I know I need to push myself and I dont mind doing that, but my body keeps complaining. The aches and pains are getting annoying, the difficulty in waking gets scary. To be trapped in limbo, awake, but unable to move. I find that I am pursed lip breathing more often. I sat on the floor with my niece earlier. When I stood, I got off the floor no probs, but it then took me another 5 minutes to catch my breath after it.

Things at home are difficult, this entry is long and boring enough so I wont say much, but it involves lots of crying from my mum, who, before this year, I hardly ever saw cry. It also involves lots of frustration and raised voices as well random objects being thrown across the room.

To sum it up, right now, there is a heck of a lot of frustration going on.
But, on the plus, my face has stopped hurting enough to wear my humidifier again tonight and I finish my antibiotics tomorrow.

clinic

Thoracic clinic, everything seems to be going ok and there is little input we can give. Lets lessen your clinic times and you know how to get in touch if you get stuck.

Liver Clinic, Liver, as usual is all doing great. You look and sound rough, but we havnt seen you in so long so perhaps that is your normal.

All good news right.
But my body is still complaining.
Its still not keeping up with what I want it to.

Mum was discharged last night. But being active and driving with visiting and making sure she had what she needed, left me exhausted. I drove to clinic today, biting my lip to keep tears at bay. The muscles in my arms were shouting at me, it was agony to keep them by the steering wheel.

I tried mentioning my stomach issues in clinic, but things were dismissed as under another persons care. We spoke about where I was up to now. About how I had my whole life to go after a rough few years. Then we spoke about lung stuff. About my anti biotic usage and how I seem to be colonized to certain infection. There is one in partic, that the chances are I will never get rid. That is the reason why I need antibiotics so much. We also talked about my lung function. She looked sad.

I have known her since my first clinic after transplant. She has helped a lot in the past. Often, my notes would be with other specialists and so not available for clinic. She knew my history and so used to take my case. She has been good. Sorted things when my bloods started going odd a few years back. Spoke to the psych ward and made sure I got into clinic without sitting in the waiting room when I messed up psych wise. I dont know, she knows me well, I think she can tell when I am struggling.

But the conversation and the realizations of it, left me reeling. I walked back to car, thumped my fists several times on the steering wheel, let out a scream, then put my head on the steering wheel and sobbed for several minutes.

I can live if there is hope, but right now, hope is minimal.

And on the flip side?
Friday I have a transplant speakers session and if I am honest, I am nervous as hell about it. I have never actually met anyone who has had a transplant before, which in its self is odd. Nervous, but hopefully, it will be of benefit. Something good has to come of this.

I have heard there are troubles to come..

I had forgotten what it felt like to have hot, steamy water massaging your back, while surrounded by the sweet smell of soap. Everything forgotten, tension loosened and mind free.

Today, for about the first time in 8 weeks, I had a proper shower, standing up un-aided and without exhaustion.
Before today, I have been showering by sitting on the shower floor. I didnt have the breathe to stand and use my arms together and I couldnt tip my head back far enough to wash my hair without my airway blocking before. But today I stood, it felt good, normal. I didnt get out and collapse on my bed for a few hours. I managed to get dried and dressed straight off and comb my hair. In total it took about 30 mins start to finish. So much better than the 3 hours of previous.

My mind is whirling. Oh, the hope of being able to breathe. To take the kids the beach again in the summer, to run and play with them in the water,to sit on the sand without fearing of filling my lungs with sand. To visit London properly, to take in the sights, without having to worry about resting in between. To lengthy conversations, late night phone calls, singing away and having fun. Ordering drinks at bar without resorting to sign language and pointing. To feeling tired after a long day instead of a day of doing nothing.

I know this is not likely to be straight forward or a clear road, but this road has to widen at some point, it has to reach a conclusion. For now, I need to keep a future in mind. To top up my stores of hope. To have thoughts that bring a smile to face when I think back.

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!

Dare to Dream

I know that hope is one of the main feelings that can get you through a bad day. But if you get your hopes up only to be let down, is it safer to play each day by ear?

Yesterday I began to get excited. I went for a walk with physio and my sats stayed stable and high at 97%.  It felt great to be moving, at a decent pace and yet breathing at the same time. I also began to talk yesterday. I dont want to do it to much as I know that area of my trachea still needs to rest and heal, but it makes a huge huge difference.

I was torn, do I get excited? or do I wait and see. Inside, I know that it wont make that much difference as the T tube is still in and I have to wait till it comes out. But the hope was there. One of my favorite nurses came in for a chat before the end of her shift and we had a nice conversation. She asked me about the future and I replied that until things settle I dont feel able to plan my future. She was full of hope that this was going to work and I should begin to make plans. But I cant bear the thought of making plans and then having to cancel again like the last 2 years of uni.

I am glad I took this stand, as today, my body seems to be fighting back once again.

I have literally sat on my neb all day, yet still felt blocked at the same time. I even let the nurse use suction, which is a rare thing for me as I find it gross and dont like the idea of someone else dealing with it. But I let her, not that it got very far as things were still pretty stuck up.

Whilist my breathing today has still been good, it is nowhere near what it was yesterday and I have spent a large amount of time coughing my head off. With random nurses sticking there head around the door to make sure I was ok. I feel exhausted, even after sleeping most of the day.

So, here is to hoping that things improve once again tomorrow.

I am however begining to like this ward more now. I have gotten to know the nurses and I think they mostly trust me. Most of them are not that much older than me, if not the same age and I guess that makes conversation easier, though it dosnt stop me in my head turning it round and round doing the whole, that could have been me. But for now I am in good spirits.

pain and purpose

I dont know, I have been wording this entry for a while, turning it over in my head and rewording. Coming up with the right words and forgetting them soon after, coming up with hundreds more words until it turns into a a jumble of letters that make no sense.

When I  started blogging, my whole purpose was in hopes of find people with similer stuff happening to them. I knew it would be a long shot as things seem to never go the simple way with me. Along the way, I have met many many people. Some I have related to so much it has been like reading my words, some have had smilier things in their life, some have annoyed me from the start, some I have liked their attitudes and wordings of things, but soon grown aggravated when they moan over about the same things or kick up a fuss at small procedures that are meant to help. Many I worry about. What the future holds for them and how will they deal with it. I mean, if they cant undergo a simple outpatients procedure how on earth will they deal with a transplant when the need arises. The funny thing, most of these people are complete strangers to me and always will be. But some of them, I will never forget. Those are the ones I admire most and the ones seem to be the ones who keep getting taken away.

Maybe I am naive, maybe its due to my transplant experience. I spent a long time being bitter about transplant. Mine was a little different to most, and while others grew sick beforehand and watched their lives slip away despite their best efforts to keep in control of it. Then they went through transplant and suddenly everything improve. With mine, the way my mind tried to rationale, was that I was perfectly fit and healthy.I was 16, never take any medications accept the very occasional antibiotic, hadnt see a doctor in about 4 years. The next thing I knew, I got out of hospital after transplant and suddenly, I was faced with so much change. Doctors every week, stacks of pills, endless lists of things to adjust to it. It was a big change and I hated it every step of the way asI fought many daemons off my back. I lost my friends,my independence, my energy, my personality everything, all in a few short weeks.

I didnt like the person I had become and I didnt want to know anymore. I wanted to burry everything under the carpet and pretend it hadnt happened, go back to my old life and forget everything.

When I started getting sick with my breathing, I began reading about,doing research, finding other people wanting to know as much as I could.

I never really considered the consequences of this. But as time goes on, I see these people conquering great things, getting better and my heart beats with joy seeing them do the things they alway wanted. But, then something clicks and they begin to go downhill. Before I know it, sad news is passed on that they are no longer restricted by anything, that they have left this world, this pain and gone on to somewhere else.

Everything begins to hurt, to feel heavy. I may not have been close to them, but it still hurts each time some one goes.

I mentioned in my last blog about Bree whose blog I read having gone from us.
This sadends me, but more so out of selfish act.
I came across Breesj ournal a long time ago, I think through a transplant forum. I immediately fell in love with her writing, her style and attitude never ceased to make me smile and her happiness came across in every post. I knew that she had hada lung transplant, but could not remember the reason for this.

After she hadnt posted for a couple of weeks, which was odd, I went to check her blog and something caught my eye. In her about me section, she mentioned having had a lung transplant due to Bronchiectasis. My heart skipped a beat and my breathe caught in my throat. This is what doctors had been queering with me, this is what I had been searching for answers to and the best answers I could ever get, were right under my nose.

I knew Bree wasnt well and so I hoped for a speedy recovery for her, checking in twice a day just incase she had posted. I had thousands of questions going through my head that I wanted to ask once she was better. I hoped she wouldnt mind answering me, but from what she wrote, I didnt think she would.    

But now, I cant ask those questions. Her time is up and not because of the lungs. Sadly, the lungs she got worked brilliantly, but some mystery disease was causing her body to attack itself, especially the brain.

Its sad losing people. I know how fragile life is, I have had a lot of very near misses. The experimental surgeries promise nothing. But I know I must continue to move forward no matter how slow the place or how steep the incline. But, right now I guess, it just leaves me questioning the balance of finding people to relate to against the risk of losing them.



http://bree-theblogblog.blogspot.com Bree, I hope you are having fun and kicking some butt wherever you are now.

One foot in front of the other.

Last night, I lost my temper on the ward, though it was more out of frustration than anger. When I get frustrated it wind me up and I find it hard to express my frustration at the best of times, but when lacking a voice its even harder. I feel like I am looking at people sometimes, praying with my eyes to them, to please understand what I am saying.

For the past 3 days, I had been asking the nurses nicely if they could clean and dress my neck dressing as it was hurting more than it should be at this stage and I was pretty sure it was infected. I had had my painkillers changed from ora morph to oxycontin but by the time i went to bed, even they were not cutting through the pain to allow me to get comfortable enough to sleep. I couldnt do my own neck dressing, as again it was to sore to lift my head high enough.

So at midnight, they came to put my night fed up. I dont need the night fed, I am eating and enough, but the rules are that it has to stay in use until a dietician says it can come out. So when they came to set it up, 3 hours after they were meant to, I told them were to stick it. I was kinda already tucked up in bed trying to get comfy, failing and instead crying. I said, I would rather the 10 mins setting up an 10 mins taking down, be used on something more important such as dressings as infection could compromise my surgery and get me sick real quick, where as the fed was just stupid.

She came back at 1:30am and offered to clean my neck.Oh how I could have screamed.But she did do a quick job on it and as a result, I managed to get some sleep.

It was handed over this morning that it NEEDED redoing. Felt like saying ner!
Anyway, docs came in, also said it looked abit 'mucky' but they were not sure of the plan till they spoke to the boss, but promised to have news by dinner time (yay)

Next thing, one of the nurses came in with my file and asked me to go down to clinic as the boss was doing out patients there and would see me.

The walk, although only a few paces, was hard work. I arrived literally gasping. Sat in the waiting room and then had to laugh, when a clinic full of people are sitting there waiting and the boss just comes out and calls me by my first name and strikes up convo with me heading into the clinic room.

He asked about the feed tube, I rolled my eyes and explained as I best i could. He asked if I wanted it out, then handed me a bowl and said, you want it out, take it out. I thought he was joking for a second but he sat there grining, as I removed my own ng. Its an easy task and i knew that, but I guess I just assumed someone would have to do it or have it cleared with them.

the next thing was the tube. He covered the trach and asked if i could breathe. I couldnt. Do he looked a little confussed, then said sod it, lets take it out anyway. There is a T tube underneath that should allow me to breathe. So he got a spare trach ready to shove in just incase, took the sutures out and took the trach out. It was a very nerve-wracking minute or so. He standing over me, with baited breath to see if I can breathe or he needs to act quick. I kinda took two slow breaths testing t at first then smiled at him and said yes, to which he grined back.

Cleaned the tube out and such, then had a look down with the camera.  Theoretically, I should be able to talk and direct breath through my mouth and nose. But, when he looked, there was too much swelling for me to use my upper airway.

The same below the tube, but more so, the arm of the T tube, would not stay outside my neck as it had gone to short. That was the next problem. He stood talking to me, with a clamp and other fun tools in my neck, holding on to this tube so it didnt vanish and get stuck or cut off my airway, whilst he issued out instructions everywhere of things he needed. He then got another surgeon to keep an eye on me as he wanted to find something. The other surgeon look petrified and warned me to behave and not go down haha.

Anyway, in the end, he put a ET tube (the more flexiable tubes used for intubating by mouth)inside the T tube and stitched  one to the other, bear in mind, this was all being done in my neck whilst I sat as still as I could. So yeah, a system was put into place to hold things together and he will review in a couple of days.

Do I think it will work? No. Well I guess it will, but it needs a little more tweaking and playing with.

I awoke from my nap, to find the end of the tube in my bed eek. So, with a little DIY work, I have used a set of trach ties and madea kinda holder for the tube, so I am hoping that it will hold it a little better. And the surgeons can review in the morning and decide if its safe enough.

But, coming out of the room with just the T tube in, was truly wonderful.
I was able to take a slow deep breath right down to the depths of my lungs, without gasping to get the breathe out quicker as I need my next breathe. It was wonderful and I found that I felt very dizzy for the first short while, due to my oxygen levels suddenly jumping. Wonderful wonderful feeling. I realize now, why things felt so wonderful last time I had this big op, as I would have had the same feeling when I got my trach out last time. And why it was so scary when it suddenly began to get bad again. But fingers crossed that this time it will work.


In other news, I have had some sad sad news about Bree. I dont know if anyone knows bree on this blog, but if you do, my thoughts are with you all. I will write more tomorrow.

Friday morning marked 6 months since my last trek to Leeds for Liver clinic, meaning that bright and early, we set off once again. Now the silly person who made my appointment made it for 9:15 am. There is no way, in peak hour traffic I could have made it for that time, as it would have meant leaving at something like 7am and as my dad was taking me and then having to go do a full day in work once we got home, it wasnt fair to make him get up at that time (not to mention me hehe)

Luckily, we know them in Leeds, and they always say, just leave your appointment as it is and get here when you can, as long as its before 12. So we left about 8:45, which is still early for me and so, I curled up as soon as we got in the car and slept, till we hit Leeds. Because it is early, and it is usually a long wait and such, we have a little tradition that we always stop for breakfast on the way in. About 10 mins from the centre of Leeds there is a big Ikea shop with a restaurant. They do a lovely little cheap breakfast (99p nom nom with free drinks) and so I woke once we pulled in there.

Once we were done we headed to the hospital. Clinic was cramped and I kept getting funny looks each time I had a coughing fit. Coughing + a room full of immunosuppressed patients = not a good idea. So instead, I waited in the corridor and mum came and got me when they called me. As a result, when I got into the doctors room, I was out of breathe (Yes it is only about 20 steps between the corridor and the room) The doctor asked me if I had gotten over my chest infection now, to which I asked which one he was referring to. He meant the pneumonia back in October and looked a little worried when I told him I had had several more since then. He took all the info about having been given the wrong antibiotics and such and reviewed the last bloods tests that the GP had sent them. Confirmed that everything was ok and that I was on the right level of meds but couldnt come back down a dose yet (to prevent infection and mind screw ups) but that hopefully, all things well I should be able to drop down back down at my next clinic. I am currently on 3mg twice a day of tacrolimus (prograf)

He then started questioning about my breathing. By this point, I had caught my breath once again, but still struggled to complete an sentence in one breath. He asked why I wasnt on home oxygen and we explained everything. He said that because I was getting reviewed in London on Monday, that he would leave it at that, but if it was delayed for any reason that I was to get a check up at home as he dosnt like the idea of me managing with low oxygen levels as my other organs are temperamental enough. (I have a history of kidney failure and midstage heart failure, that are pretty stable at the moment) He said, that he thinks my heart is already complaining (I currently have a resting pulse of about 115-120 (should be 60-80) and a blood pressure of 140/105) I am on meds to help it, but they seem to not be doing the trick right now. But once again, if London can review that when I see them after the weekend.

Blood tests followed, only two attempts to get blood, they are getting good! and then the journey home again, which I also slept through. So yup, everything is going fine from the liver perspective. Its strange isnt it, when I was very ill, it was always the liver side we thought would give the most problems, as transplant, i think kinda makes people think, oh gosh, end of the line stuff type thing.

Got home and helped sort my dads packed lunch out, played with the tortoises for a bit and then, you guessed it, fell asleep, for another 2 hours oops. Told you I dont do mornings.

Today, I had a few bits that I needed to get shopping wise ready for next week, which is always a nightmare, but managed around the shop with mum. The first part was easier, but the more walking I did, the hotter and dizzier I got and the more I coughed. Got a real snotty look off a woman walking past in a nurses uniform, as if to say, why are you spreading your germs, I was dying for her to say something, then I would have just said something back about her spreading more germs as she shouldnt be out in a work uniform, but meh.

Got home, skipped dinner due to effort, but mum made me have milkshake and then slept for 4 hours.

Although I still dread this surgery, I think I am looking forward to being able to breathe for a while, just to stay awake for more than a couple of hours a day. The last couple of days, I am averaging about 15 hours a day, which leaves me awake for 9 hours. I am probably only active for about 4 of of those hours, not to mention how odd it is for me to pass on food ha. I know I have lost a little weight off my hips, which is always a good thing! Yet my chest circumfrence seems to be getting bigger. Please dont let me end up with a huge barrel ugly barrel chest, I already have the habbit of pursed lip breathing, any day now, they will shove a copd label on me.

sleep

I dont think I portrayed myself very well last night.
I came across as a spoilt brat and thats not it. I dont hide away as a punishment or way to avoid things, well i a little I guess.
More so, my self esteem is very low and I am acutely aware of that. When I put a lot of effort into something only to be put down, it feels like a huge personal knock every time. I hide in my room as a form of protection. I just cant face any one out of fear of more knocks.

Today, I have paid for yesterday. I knew it would take it out of me, but I guess I didnt anticipate just how much.
I woke today, with a struggle at about 12:20. Nobody was home, so I made a piece of toast, while struggling to keep my eyes open. Ate my toast, checked my emails and such and by 1:30, I had fell asleep again, in the sun on my bed.

I was so comfortable, lying on my pillows with the warm sun on my body.

Next thing I know its 6:30 and the phone was ringing. Mum must have answered the phone, and with a struggle, I forced myself to wake up. I think I could easily have slept right through till tomorrow morning.

Scary dreams though. Trying to put stuff away in my dreams, but struggling to move them. Light things weighing a ton in my arms. Later on in the dream, I find myself in some freak accident. Going down a hill fast, shooting off the side, unable to stop myself. People looking for me but not able to find me. Unable to do anything about it. The search for me, lost within the clean up of the rest off the accident.

blah.
The bottom of my left lung is giving me pain again. Stuck between a rock and a hard place. To go to the doctors now, feeling unwell, would probably effect the surgery as I would need anti biotics. But to risk it getting worse is also a risk. I play a dangerous game. I am going to ignore things, hopefully they wont notice either. And after surgery, I will be on anti biotics anyway, so it should clear up. I know, not the best idea, but I will in the mean time work on keeping my chest clear. Now if I can just stay awake long enough to go through my treatments.

Approaching

Tomorrow is mums surgery day.
The whole thing is not going so well to be honest.
Mum is scared, understandably, but she has it in her head that she is going to die a slow painful death from now on. No matter how much you tell her positive thoughts and such, she gets mad that things are not how she wants. The problem is, this is driving a huge rift between my dad and her. My dad has issues showing emotion and stuff to these types of things. Even with me, if I want advice on or his view on a medical thing, I just have to wait it out and he will give me hints when he is ready. He dosnt deal well with bad news and has spent many a time flat out on the floor when he hears it. I think he is more like me, if he distances himself and ignores it, he hopes it will go away.

The problem is, mum expects him to be the supportive type you see in films. And she is good at holding grudges. I can already see it driving them apart and it hard to watch.

I am trying to fill in the roles inbetween, but not doing so well.

My body feels like it is constantly fighting even more so than normal at the moment. On Sunday, dad asked me for a hand with the car. We were cleaning it and he dosnt know how the seats work and such so I was helping him where I could. I didnt feel like I had done that much, but I sat in the garden for 5 minutes and then suddenly was shivering. I put a jumper on and it was still warm out, but I could not get warm. I snuggled down in my bed hoping to get warm, but I didnt even have the energy to take my shoes off. In the end mum kept shouting me and I couldnt shout loud enough for her to hear me, so I forced myself to go down to her. She was asking about tea. The thought of actully eating made me want to cry. Normally, i eat and eat, but just the thought of the effort of using my hands to eat was freaking me out. Mum was telling me that I need to eat else i will be tired, so we settled on a milkshake, and then I literally crawled up to bed, this was about 9:30 so super early for me.

This morning, I woke at about 5am with the worst headache. It was so so painful. I took strong painkillers, but it wasnt shifting so after a couple of hours of tossing and turning in my bed I got up. Went out with mum to get some essentials, but the headache got worse, so came home to bed for a few hours again.

I have always had a large appetite, but at the moment, one meal, seems to be the limit of the day. Its strange, complete opposite for me. Not that I am complaining, i could do with losing a bit, but I mean, its easter and I havnt even had chocolate ha.

Oh well, have to be up early in the morning, so that is all for now.

Happy Easter

Tonight, is the first night I have gone up the stairs walking and not feeling like I had just run a marathon. Lately I have taken to crawling up the stairs as it just easier. It amazes me how much my breathing effects my muscles. On bad days, every time I lift my leg or arm, it feels like I am lifting weights. Tonight, I dont feel so bad and I begun kidding myself that perhaps things were settling.

Today, I took a big step. I used the wheelchair to help my mum with shopping. It did make things easier, and I didnt feel so exhausted that I could cry at the end of shopping. The sad part? It is probably the last time I will be able to use the wheelchair with my mum for a while.

She goes for her surgery on Wednesday. They have decided on a lumpectomy and removal of a couple of lymph nodes. They will then test the lymph nodes and the surrounding tissue to see if she needs further surgery and from there set a schedule for treatment and such.

I often go through phases with music. I find an artist or song who I love, put them on repeat and listen to them continually till I get bored. I hate doing it as I kill the song, but at the same time I love it. Right now, I am spending a long time just resting and listening to Joshua Radin.



I have also been playing with some watercolor paper to make some images.

I wanted to experiment mainly, but I also wanted to make a special card for my elderly neighbor for easter. Ideally, I need to do a little bit more on it in the morning, as I think it needs a little bit of purple in the top right.

What do you think? I should have spent a bit more time on it, but overall I like it I think.



Happy Easter every one.
And as easter is all about new life and beginnings, I hope that it rings true for you all, especially those on the transplant list :)