Good News!

I'm cured! No, not really but I am feeling better! My new drug is definitely starting to work. 

A month ago I couldn't get to the bathroom from my hospital bed in Hammersmith and I had to stop twice going up the stairs in my house. Now I'm probably managing over double the distance that I was before. Although when you could only walk 15 steps in the first place that isn't much but it makes doing things a thousand times easier when you can walk 30 steps without getting breathless. To potter around the house you don't really need a great deal more than that. It's made a huge difference to me. 

More than simply walking further, I feel better in myself. I still feel tired. Actually I probably feel more tired because I'm doing more but I'm not in pain anymore. My tummy swelling has come down a little. Not enough to stop me looking pregnant but enough to ease the pain, which was the main problem. I feel like I can concentrate better now, probably because I'm actually getting oxygen to my brain. I feel safe enough to drive now and I've got my seatbelt exemption, which just makes things a thousand times easier because the belt hurts my pacemaker on one side, my line on the other and the strap across my stomach feels like I'm being squeezed to the point if explosion because of all the swelling. Obviously continuous flinching and rearranging my belt doesn't make me the safest driver so I've held off till I've got that. I still can't go wherever I want because I need someone at the other end to help me get around but I'll be able to see my gran whenever I want and take her out. It was brilliant for when my boyfriend came down because we were able to go out quite a lot. Bit of shopping, a trip to the cinema, lots of meals out and a day in the country village Painswick - can't get a much better week than that!

Even though the Flolan is helping in a huge way, I'm not massively keen on the side effects. My cheeks are swollen, I have rashes all over my arms, I'm permanently hot and I keep getting these weird hallucinations at night that my random body parts are growing and shrinking really fast. It's hard to explain, think of Alice in Wonderland and the "drink me" potion. I have to get up turn the light on and wait for it to pass. I keep forgetting to mention this to everyone because it only happens when I'm trying to get to sleep at 1am. It's only the rash that's a bit too much for me to cope with and I think that's mostly because it's so hot here in England. I've tried steroid creams and two different allergy drugs from the doctor but nothing is shifting it. I'm waiting on advice from Hammersmith but I think I'll have to lower my dose to get rid of it. I'm not sure if it's the Flolan but my hair is falling out like mad. I haven't got any bold patches or anything but the amount of hair that comes out when I wash my hair is scaring me. Everytime I run my fingers through my hair a good ten strands fall out and I notice it on my bed sheets and clothes too. Hopefully I still have some hair on my head a few months from now!

The fact that it's working is brilliant because it means that when the call comes it's going to be a lot safer than when I'm weak and sickly. So I think it's worth a few side effects for that! 

I've had a really nice week, itchy rash aside. It's been busy and I feel a bit wiped out now but it's refreshing to feel tired from actually doing something rather than spending all week resting and still feeling tired.

I've got a few blog posts in mind for the next few weeks so stay tuned!

At the Rococo Gardens in Painswick in the boiling sun! 

Proof there was sunshine in England this year! (My city managed to have a flood and a drought at the same time a few summers ago!)  

Transplant Awareness Week

I'm a bit behind with this post. Transplant awareness week was actually last week but it's all relevant information no matter what time of the year it is. This year I'm on the transplant list and have lots of information about donating and receiving organs that I'd like to share with you. I feel like general information about transplants is hard to find so here's some information about being a donor that might be interesting.

I obviously have a vested interest in you joining the donor list but of course it's okay to not want to. This isn't suppose to persuade you to donate but give you all the information on donating if you're thinking of joining the register or you already have. 

This year the big push is to talk to your family because being on the list isn't enough. Whether you've signed up or not your next of kin has the final say. If they decide they don't want your organs to leave your body there's nothing the doctors can do. If you haven't already done so, do sign up as well because your next of kin might well have changed by the time you are considered as a donor. When your done reading be sure to have a chat with any family member that's around and remember to ask them what they want too. 

Now, to all the parents out there. I hate to ask but I'm a petite person and it's likely I'll need a child or a teenage donor. So I'm asking you to take a minute to think about what you'd do with their organs if, heaven forbid, something happened to your child. In the shock and the grief your decision making isn't going to be on top form. As morbid as it is, it's good to have a think about it now. It's not a decision you want to regret, whatever way you're leaning towards. I'm not trying to persuade you to give away your child's organs, I'm just asking you to think about it. To start making a decision now rather than when you're blinded by grief because of course your protective side is going to be going into overdrive in that situation. 

I write now to all those who believe themselves too old or too unhealthy to donate. Whether your elderly, a smoker, a heavy drinker, a big eater, a heart-attack, stroke or cancer survivor, you could still save multiple lives. People as old as 80 have successfully donated even such vital organs as hearts. On the transplant consent form you are asked if you will accept organs from over 60s so it's far from a rare occurrence. Smokers too are on the consent form. In fact 50% of donors are smokers. Whatever kind of lifestyle you have they will always check your organs. Even though gay people can't give blood (is that still true?) you can still become a donor. I'm afraid to say that it is actually on the consent form but it's not as bad as you think. It's under the bracket of "high risk lifestyles", which also includes intravenous drug users and anyone who has a higher than average risk of catching HIV. Seriously, if a heroin addict can donate an organ I'm sure there's a chance you can. It's highly unlikely that you will have managed to destroy all of your organs by your lifestyle or past illnesses. Your ability to donate depends far more on the circumstances of your death than your body's health before you died. Even if they manage to get just a kidney from you that's still a life saved. And remember they're after your eyes, blood and tissue too, which could save a life or at least dramatically improve lives. If all else fails science might want your organs for research. You never know, they might start a study into the exact disease you die of and your organ might bring about a cure. It's always worth signing up and talking to your next of kin. If Keith Richards is somehow still alive with all his organs working at least enough to keep him going then anything is possible! My grandfather was told he had 5 days to live. That was about 8 months ago and he's still going. So you never know what's going on inside!

They do only use nice healthy organs for transplants but nice healthy organs aren't only found in nice healthy people. So don't rule yourself out. 

As a side note here are some extra little assurances: your body will look the same whether you've donated or not so if you have your heart set on an open coffin funeral or your religion dictates a certain type of funeral then donating doesn't mean you can't have that. Likewise if it's important to a family member to see your body before you're buried then donating doesn't mean that can't happen either. If you're American, donating doesn't mean you're family will have any extra medical bills. I don't know if anyone thinks this but being a donor definitely doesn't mean doctors will make any less effort to save your life and doesn't mean you have any less right to stay in a coma for as long as it takes for someone to decide it's the right time to turn you off. 

I'm sorry this post is rather morbid but it's important for you to know these things and to talk about organ donation. So please make sure you do! I think it's important for people to know that anyone can donate. I think the excuse, "no one would want my organs" gets thrown around a lot. Please, let the doctors decide. 

Lots of Thoughts

I had a Papworth appointment last week that went so smoothly and so quickly that I completely forgot to make a post about it. The traffic was pretty bad that day so we were in the car for about eight hours all in all and to be honest I think it was a bit much for me. I was really exhausted and we decided next time we'll probably have to stay overnight. I'm currently getting Employment and Support Allowance, which is really helpful for stuff like that because petrol and hotels and meals add up to quite a lot.

The appointment only took about an hour. I had a blood test to check that there's no changes in my blood that could affect the transplant and only waited half an hour to see the doctor. He was really happy with how I'm doing, so much so that I don't have to go up to see them again for three months instead of the six-weekly appointments we were having before. They said I should go and enjoy my summer and they can always see me early if there are any changes. They're still a bit concerned about my weight but I told them that I'd started to put some pounds on and am eating much better so I think they were satisfied. My doctor was really positive about my line. It seems he really wanted me to have it and thinks I'll really benefit from it. So fingers crossed! 

I've been feeling a lot calmer about the transplant recently. I feel like I can think about it more without feeling scared. I have these moments of blind panic where it's like I suddenly realise how huge this all is. It's like my life is a book that you'd read thinking, there's no way this would all happen to one person. I mean, I have heart failure and my lungs are under pressures of over 100, that's big! I'm on the transplant list. And eventually I'm going to be that person who had a heart and lung transplant. That scares me a bit. It just doesn't seem real. It's too scary to think about. I probably think more about things I can do after my transplant than I worry about the thing itself. I think that's probably good for me. Watching Glastonbury made me think about how that might be something fun to do after my transplant. Looking back at my freshers photos at uni made me excited to be able to go out and have fun again. If I can get uni to let me do freshers again, even though I'll be restarting as a second year, that would be brilliant. I won't be able to drink but I catch energy from other people so if everyone else is bouncing around that'll get me pumped up for a good party! I'm getting excited now just thinking about it. I stop myself sometimes because I don't want to get too excited incase it doesn't work out as well as I'm hoping. I think it's important to be positive but I don't want to be delusional because if things don't go right it'll make it that much harder to deal with. I think I'm doing okay mentally but I do have an appointment with some kind of mental health person at palliative care soon, which might turn out to be helpful. To be honest as long as I'm not feeling any anxiety and I'm sleeping well I'm happy but it'll probably be useful to have someone on hand if I do start freaking out. 

I've got plenty to enjoy at the moment though. I'm doing really well. I feel really tired but I feel good in myself at the same time, if that makes sense. I'm more keen to go out and do things but I don't have any more energy to do said things. I still like to do them because I sleep better if I'm more worn out. Otherwise I end up waking up at 3.00am and not getting back to sleep for hours. As long as I have one thing a week that I can look forward to, I'm happy. Even if it's just a nice pub meal out, a shopping trip or a visit to my Grans, or even something little like a parcel delivery and a trip to Sainsbury's. This weekend we're going to have a Fourth of July BBQ with my grandparents so that's what I'm looking forward to that now. My boyfriend was here this week, which was really nice. We went to the cinema to watch 22 Jump Street, which was really funny and had a nice meal at Zizzi's as well as some good chill out time. He'll be down again soon too so that's another thing to look forward to. I've actually done a lot more this week than usual. I did pay for it with a really tired out day but it's refreshing to be tired out for a good reason rather than after weeks of constant rest! 

I hope you all have a lovely weekend and I'll be back for a hopefully less deep chat soon! 

Living on the List

This has turned out to be the hardest post I've ever had to write. Which makes absolutely no sense whatsoever because I'm really happy at the moment. I think the problem is that I usually write down my thoughts but to be honest I don't really have any. The only times I really think about the transplant is when I'm having a bad day and just can't wait to feel better. I think I'm in a really good place at the moment because I'm ill enough that I really want that call to come but I'm level headed enough to not spend my nights tossing and turning, wishing and hoping. I know the call will come it's just a matter of waiting and keeping myself well enough for surgery.

So in view of the fact that I don't really have many feelings towards my transplant, other than a strange sense of calm, I've decided to write this post about what it's like being me at the moment. If I had taken the time to imagine what it might be like at this stage of my illness I probably would have imagined myself a lot sicker than I actually feel. Considering what's going on inside my body and how badly my heart and lungs are failing, day to day I feel okay (until I try and walk anywhere that is). Though it varies considerably. It's definitely a case of good days and bad days. It's mostly good but the bad days are really horrific and I do get quite down on those days. Everything just seems to get worse all on the same day and of course tiredness always makes everything harder to deal with so when I'm more tired I generally feel really rubbish. On bad days it's a case of trying to while away the day as fast as possible so I can get to bed and hope for a good day the next day. But the good days are okay. I can go out in my wheelchair, enjoy a bit of food, have a laugh and feel quite happy about everything. 

My main symptoms are tiredness, sickness, palpitations, painful swelling in the tummy and a lot of phlegm. But on a good day nothing is too much bother. The breathlessness however is horrible whatever day it is and I avoid it as much as possible because it feels so horrible, it can't possibly be doing my body much good. And I really hope to avoid an exploded lung or god knows whatever else could happen as my whole body feels like it's ready to throw the towel in. At the moment I can't walk much more than 5 steps without feeling out of breath and I physically couldn't do much more than 10 steps but that varies a lot too. My tummy pain has been under control up till now but it's been getting very painful recently, to the point where I can't sit still. I'm waiting for my water tablets to start making a difference because at the moment they don't seem to be doing much. I'm loosing weight like crazy too, which means my body shape is looking abit weird at the moment as I'm skinny as anything but my stomach and lower back is swollen so I'm looking slightly pregnant at the moment but hopefully everything will go back to normal after the transplant. 

In other news I'm off to get my central line fitted in two and a half weeks. It'll take months for the actual medication to start making a difference so I want to get the ball rolling as soon as possible. I'm not too worried about it as it's not under general anesthetic or anything so it's quite simple and then I have to learn how to mix the medication and hook everything up, keeping everything clean and stuff like that so that'll be quite interesting. 

Other than all that nothing much is happening. I've been out for the odd outing to stop me going crazy from being inside all the time. I've had lots of visitors, which has been nice. I like having something to look forward to like that. We're having a girls meal out this weekend for my Gran's birthday and the week after my boyfriend James is coming to visit so we'll probably do something nice then. I always think it makes a lot of difference getting out for an hour or two twice a week. 

A very inquisitive lamb I visited when I was at my Gran's last week! 

I'll update you all if something interesting happens but I'm really struggling to write anything at the moment. Perhaps watching constant reruns of Friends has frazzled my brain! 

Greetings!

Well, I've decided to start a blog. To be honest, I'm not sure why, other than, as a writer, I thought I ought to. I'm currently studying Creative Writing with Film Studies at university. "I enjoy writing" I thought to myself, "so why not start a blog?" So this is me, starting a blog.

As you may have gathered by the title of this blog, I have heart disease. And as a child I was, "the girl with heart disease." A generalisation that I will probably never escape. It's not only heart disease I suffer from, but a rare heart/lung disease, (it obviously couldn't decide which organ it wanted to destroy so went for both) which is called Pulmonary Hypertension. This is quite a difficult one to get your head around (unfortunately so are all my conditions). It is, in simple terms, the narrowing and tightening of the arteries in the lungs which makes it hard for blood to get through to be oxygenated, this creates pressure in the heart which has to work harder. My heart is rather strange. It has two left sides, two holes and a missing heart valve. I also have a condition where all of my organs, apart from my lungs, only have left sides and are located in odd places. I will be referring to the lung disease pulmonary hypertension as PH and my heart disease as CHD (congenital heart disease) from now on.

I have been assessed and possibly offered a double lung and heart transplant (assuming my tissue typing, which tells us what percentage of the population I am a match for, comes back okay). But I'm hoping this will be a long way off.

I'm currently doing well on a new medication called iloprost (I will do a full drug routine post soon) which has helped me be able to walk a little though I use a wheelchair a lot of the time. I'm currently struggling with severe chest pain and I'm off to the hospital on Friday to check there's nothing wrong other than the PH straining my lungs.

So this blog is going to be my thought on all the medical stuff so if you're interested stick around.

Have a lovely day!
Sara