boing...

After a fairly productive and stable week (have a look at the LLTGL Ambassador's blog I wrote last week by clicking here, my call in my own words) last week of course I couldn't have a straight forward weekend, they just aren't my thing anymore!
On Thursday morning I was woken at 6.30am with stabbing chest pain. I sat bolt upright and tried to work out what was going on. It felt like heartburn but far worse, I quickly reached down and turned off my PEG feed and text mum to come in and help me. I didn't know where to put myself, no position was easing it, I sent mum downstairs for Gaviscon incase it was 'just' heartburn whilst I started taking painkillers, oramorph and co-codamol. I was doubled over in tears by this point and we just didn't know what to do. I was so scared it was something heart related, my grandad has recently passed away from a heart attack, he thought he was having heart burn and left it 12hrs before getting help. After half an hour things had eased a bit, Thursdays are clinic days, my hospital are cardiac experts so I decided I wanted to wait it out until clinic at 9am. I really wasn't very well and don't quite know how I made the journey but I did. As soon as we got to reception we told them I was having chest pain and I was seen by a nurse and doctor straight away. They checked my obs, my heart rate and blood pressure were raised but that's normal for me right now. I also had an ECG which thankfully looked ok. I was told I was going to be admitted though so things could be monitored, I agreed, after how I felt earlier in the morning I was almost relieved! I was sent for a chest xray then sent straight upto the ward. I got onto the bed and just slept, I was so exhausted.
On Friday I was seen on the ward round and had a chat with my consultant, he said he felt it wasn't anything cardiac related despite my blood pressure and heart rate still being abnormally high and what I had experienced was an esophageal spasm from acid reflux from my PEG feed, basically heart burn had caused my esophagus to go into spasm. It's said to be a very painful condition and can be likened to that of a heart attack. He reviewed my reflux treatment, very important as I have a hiatus hernia too and also prescribed Gaviscon for after every meal and pre and post feed. I agreed seen as my blood pressure was still very high and they had been playing around with my cardiac medications to stay and be monitored for the day and go home Saturday. And that's exactly what I did! So I'm home again and looking forward to a slightly more organised week. On the subject of being organised, we saw my GP yesterday to sort through my medication. I'm going to leave you with a pic of what I take on a 'normal' day. Enjoy!

One days worth of medications, this doesn't include my IVs of which I have 7 (!) a day, my continuous Nozinan infusion and any other painkillers or antisickness medications I may need.Breakfast!

Transplant Choices...

I started this blog so I could be totally honest about my life and what goes on in it and damn it that’s what’s gonna happen in this blog.

So this afternoon I went a place I swore I would never go back to again. I'm not going to name names but it was my local transplant centre.

The last time I was at this hospital... Well let’s just say the consultant and I had a fatal fall out. He told me at 17 to go live my life because I could if I wanted to and I was just choosing not to and there’s nothing more he could do because there was nothing more to be done anyway.

I had the diagnosis of a lung disease which was serious and progressive but that didn't seem to matter and although I had originally gone to that hospital for a transplant assessment it was pretty clear I wasn't going to get one there.

I wasn't happy with what he said to me and without asking his permission I asked to be referred by my GP to a top London hospital I had been to before and knew well.

He didn't like this and after my referral he wrote a letter, a series of letters, to every physician I had ever met in my entire life stating quite clearly I had psychological issues and whatever was wrong with me lung and diaphragm wise was completely within my control and I would become ill at difficult times i.e. when he was on leave and not in the building just for more attention.

He made out I was completely none compliant with my medication. Which is very untrue, of course I'm gonna say that but taking tablets and nebulisers is something I've done for years and although I wouldn't say I enjoy doing them, they're a chore but they're something I can do to make/keep myself well and that gives me some piece of mind that what I'm doing is making that difference and I'm doing the best I can for myself because nobody else can do anything for me! There was one tablet which I had an issue with and those taking it will understand why, at that time I was on a hefty dose of Ferrous Sulphate that was the only tablet I hated taking and would try and avoid and that’s how my 'major none compliancy' came about. Ferrous Sulphate is an evil drug it left me hunched over a water bottle most of the day after taking it and dashing to the loo and from talking to a doctor friend of mine compliancy issues with Ferrous Sulphate are very, very common just purely due to its nasty side affects.

Since all this emerged my London team have read through the letters and were 'disgusted' with what had been written about me but knew they had to take at least some action on it. So I under went a full psychiatric profile and I'm pleased to say he said he was wasting his time because there was clearly nothing wrong with me.

So anyway I saw the transplant consultant this afternoon and he went over all the issues why transplant isn't an option for me here in the UK so here they are:

• I'm not physically fit, mobile or well enough, having just spent a month in bed in a hospice that doesn't surprise me much.
• My weight is unstable (I have lost 2 stone recently unintentionally).
• The psychological and compliancy issues have to be investigated and ruled out completely (post transplant drug none compliancy is very dangerous).
• Diaphragmatic issues need to be explored further.
  
• I also need a proper diagnosis for my lung disease at the moment its 'Idiopathic Interstitial Lung Disease' which basically means: An unknown lung disease which affects the lung tissue, my consultant believes its some sort of Interstitial Bronchiolitis or Obliterative Bronchiolitis but we don't know for sure. Knowing would mean we would know if it could strike again post transplant.
• I am currently on 30mg of Prednisolone a drug they also use alot of post transplant and they don't like you being on more than 10mg a day pre transplant due infection and wound healing issues.
• I have osteoporosis - That could cause problems with bone healing post transplant.
• Lastly the UK lung transplant list is just too long, you could wait upto 4yrs for a donor in the UK that is time I really don't have. It would be such a shame to work on the other issues when the list is just too long anyway.

You see how my rant above links in now?

The above list seems like a long one but they are or most are things that can or could be worked on if we had the time and really wanted to make it work in the UK. But we don't have the time, the transplant list is just too long but you see my predicament? My local transplant centre are now saying they need more information, but its a possibility so they have not said "NO you can't have a transplant here so go away" and Duke University haven't said yes yet. I've not been accepted at Duke yet, I'm fund raising because I need to be accepted there because the UK transplant list is too long but Duke could also say exactly the same as my transplant centre have today.
So what do I do now?!
Although the UK transplant list is too long I have not been officially turned down in the UK, yet, that’s pending more information from my London team. But I have not been accepted by Duke either; they’re also after more info on me.
I think having had some time to reflect this afternoon I need to carry on fund raising to get to Duke because I don't have the time to wait around for these lungs in the UK, my time is running out and my consultant who I had a chat to this afternoon agrees with this. But I should also let things run their course at the local transplant centre because I guess it can't hurt right?

Closer mag

So I had my lovely visitors this afternoon and we had our giggles, can't quite remember at what (I've had alot of Diazepam and slept since then) but they were funny at the time I'm sure.

Wasn't so well this afternoon but all the staff could think to do was drug me up with Dizepam and put me on my ventilator and leave me to 'sleep it off'. With me, probably not the best option but there was no harm done.

Mum is, in desperation, for some money for my funds, bag packing tomorrow at a local Morrisons. I so feel for her, shes absolutely desperate to get me the money and get me to America. I may ask for some leave from the hospice and go show my face. In the mean time I have been thinking of other ways to pull on people's heart strings. Talking, at the moment is somewhat of a challenge for me so a video appeal maybe the way to go. I recorded something on my laptop and if I can work out how to upload it in the right format I will.

A Journalist from Closer magaazine is coming on Monday to take my story so shes been on the phone to me on and off all day asking about stations/times etc. I will be in Closer Magazine on Oct 28th!

I am going to go now before Jamie completely empties my cupboards (post transplant readers you'll understand me) seen as I don't have a fridge well its cupboards instead...

Rach

A desperate plea

I was going to blog tonight about how horrible I have felt most of the day and the local newspaper coming to take my story, then Katie, my best friend sent me something she had been working on whilst in hospital so I'll leave this blog to her:

Over 20 different medications, nebulisers, inhalers and other numerous aggressive treatments, 24hr oxygen, and non-invasive ventilation, is a scary prospect for anyone let alone a young 20 year old girl. This is the norm in the life of Rachael Wakefield, battling to keep herself breathing, living and enough oxygen in her body. This was her (pictured) only a few months ago, enjoying life as best as she could, not letting things get in her way. But over the last few months things have got much worse for Rachael very quickly, and very dramatically.

My best friend Rachael Wakefield has a rare interstitial lung disease that has unfortunately left her so unwell that she desperately needs a lung transplant in order to continue living. Over the years her lung disease has progressively got worse and her lung function is now less than 15% of what it should be. This is not a great for anyone, let alone a young 20 year old woman who has her whole life in front of her. She has battled for many years doing everything that she can to try and improve her condition; in the mean time she has raised the awareness for others with rare lung conditions. Providing families with a friendly understanding ear, sympathy and often much needed advice. Her latest mile stone is setting up a website; www.breathingislife.com, which is helping to further share the stories of sufferers and explain to others the trials and tribulations of living with a rare lung disease.

Unfortunately all medical treatments available for the treatment of her lung disease have been tried and regrettably have not worked, the only way for her to continue living is through this much needed lung transplant. Sadly, all options within the UK have been exhausted and there is nothing left for the doctors to even suggest except being able to refer her for receive this lifesaving treatment, a lung transplant, in America. In order for her to get to America to receive this much needed transplant she needs to raise as much money as possible. This is where YOU can help...

Therefore I am asking you from the bottom of my heart to donate money or anything you can to this special person so that she can get the treatment she desperately needs. She is my best friend, and watching her deteriorate so quickly over the last few months has broken my heart. I can’t stand by see her struggle to live anymore knowing that there is a hope of dramatically changing her life, through this transplant. Unfortunately I, her family and friends can not cover the costs for this treatment, and I find it heart wrenching to think that it is only money that will stop her from dying and save her life.

Please visit www.breathingislife.com to donate and also for further information on this unique and truly special girl who deserves a chance at life.

Many Thanks from a desperate best friend,

Katie Mason

I think that pretty much sums up this blog

Rach

P.S Happy Birthday Katie x