Reminiscing ☀

This weather is absolutely gorgeous don't you think? Well, it may be a little too hot at night but in the day, oh it's amazing. Having nice weather just puts me into a reallyyyyyyyyyyyy good mood and I love it. And it also makes me reminisce. Monday night me and my brother went on a walk with Fudge just to the local recreational park. When we got there we immediately started jumping on the trampoline which wasn't a very good idea but honestly it felt so good; even Fudge was on the trampoline. And then there was the swings, I remember when me and my friends would go to this same park when we were young and the swings would always be the first thing we went on. Swinging on the swing (LOL) didn't make me out of breath or feel funny which was really good, I felt like I was finally doing something that I used too do as a kid and enjoy it.  When I was younger I was quite an active child, I went out nearly  every day with my friends to the park, I played netball, I did horse riding and nearly every weekend I would go swimming. Till about year 8 when I really started to struggle most of it stopped and I just found myself doing less and less as time went on. PE became the hardest one of them all. When it came to the day of PE or Games as my school called it I would always ask my Mum for a letter; most days it would be a yes but sometimes she would say no and I would get so anxious and cry about the fact I had to do Games. Like most parents they just assumed it's because I was lazy and unfit but then it got worse. I ended up writing my own notes to get out of Games because I knew I just wouldn't be able to do it and I didn't want to be humiliated in front of everyone because I couldn't keep up and felt funny.  I remember when me and my Dad and Jackie went to the Lake District camping (before I got sick), and I was so excited for it but when we arrived I realized what was to come. LOTS AND LOTS OF UPHILL WALKING. It was a good holiday and it was a bad holiday; for the pure fact every single bludy day we were walking up hills and in the valleys. Yeah I didn't enjoy that bit at all. Sometimes me and Jackie speak about it, and just laugh because Jackie would stay behind with me as Dad walked on further and I'd complain about being tired or out of breath and Jackie would quite simply tell me to stop complaining and get on with it.

 I don't know why we find it so funny looking back, but we do and honestly laughter is the greatest medicine. It's just days like Monday when I do something that I used to do as a child that I haven't done in a long time where it kind of hits me how much everything has changed. I guess you don't really realize what you have until it's gone. Of course there were days when I was young that I would complain about going out and now I wish that I could just go back and to do it. Even stupid little things like going up the stairs, that shouldn't be hard work, that should be easy, something that every one should be able to do without being in pain. But it's not, it's one the hardest things I and many others do daily. I can't remember the last time I walked up the stairs without being breathless and in pain. Or the last time I went out and didn't have to go home early or didn't cry about the fact I was in so much pain.
 I miss a lot of things and I do have the odd day or sometimes the odd week where I just think 'shit'. But I wouldn't change it, well actually I would change one thing and that would be that there's a cure, but apart from that I don't think I would change anything. It's made me appreciate life a little bit more than your average teenager I think, and before I do anything I say to myself "If I don't do this, I'll regret it and I need to have no regrets with the time I've got". It is difficult being different but as time goes on I learn to accept it more, and yeah it does make me sad that I can't do half of what I used to do but it's made me who I am and it's a part of me, I can't get rid of it so all I can do is try my best to be happy with it and accept it; and with that comes change.
Love, Erika

2nd Hammersmith Clinic

Sunday 14th June 2015
Okay so for about a month I've been trying to budge this terrible cold somebody kindly gave me, last week it finally went completely and I've never been so happy!! Usually I can just deal with colds as I'm used to getting them regularly but I wouldn't class this as your every day cold. I couldn't hear properly, I couldn't sleep, I had the most awful throat and I could barely speak because every time I tried too speak I would end up having a coughing fit, it wasn't fun at all. I ended up having 2 different course of antibiotics; the first lot didn't touch it and I actually ended up getting worse and the second lot made it get worse but I new it was getting better as I could start too hear again (the second lot definitely did the 'it will get worse before it get's better' type of thing). I can tell you now, I will never take my hearing for granted again!!  (This was written on the 14th of June but as you can probably tell I never got round to finishing it, so I've inserted it here because it's relevant to the whole blog post today being 'general life update', however I did recover really well on the fourth week of having it and hopefully I won't be seeing a cold for a while).

Tuesday 30th June 2015

Today I had my 2nd Clinic appointment at Hammersmith and it was very interesting too say the least.

At Hammersmith they do everything back to front compared too Great Ormond Street. At Great Ormond Street the same thing would happen EVERY time; echo, ECG, 6 minute walk test, MRI or CT, and an exercise test every 6 months to a year and then after the tests your Doctors would review the results from the tests briefly. I would then have my consultation and leave with some sort of result and some information on how well I'm doing or on any deterioration they can see.

At Hammersmith there are two options with how you would like your outpatient's appointment too go. 1) have your consultation FIRST and then do the tests after which involves a lot of sitting and waiting around in waiting rooms or 2) go into the day care ward with tests first and then a consultation with the PH team

On my first appointment we had no idea about the 'day care' so we had the consultation first and then Echo and a 6 minute walk test and then that was it. Honestly it sounds easy but it's really not, it's emotionally and physically draining and we were up at 5am and didn't get back till 5/6pm with patient transport. I did write a post on my first trip which you can read here >First Hammersmith Appointment< but honestly there wasn't much to tell you so you've probably forgotten so I thought I'd recap it a little in this post. But at my very last GOSH clinic we were told they could see a little bit of deterioration. As  I had been transferred to adult care it's basically like starting ALL over again and as the consultation was first we got no information or results at all.

Today was so much better than my last appointment, everything was just so so so much easier and better. One thing that does help with Hammersmith is that they seem to be on time more than GOSH were with tests and actually book appointments where as GOSH would just send you to the particular place and you'd have to wait and wait until a space freed up.

Anyway so we got the 09:11am train too London Paddington and from there we got a taxi too Hammersmith. I'm not sure if I've mentioned this previously but the hospital is directly next too Wormwood Scrubs prison for men which puts me on edge but what can I do haha. Let's just call it a 'fun fact'. When we arrived we went straight to a ward for Kidney patients but the PH team in Hammersmith have a few beds there.

As soon as I sat down there was this lovely lady who spoke to me about taking part in a research study of people with PH. This involves looking at my blood and seeing if theirs any mutations or extra things that shouldn't be there which then all goes towards a case study to try and find out new information to further Doctors and Scientists and our knowledge on PH. And to hopefully find some new treatments and medications to cure or too slow the disease down. There was a lot of paperwork but I gave my consent and I'm so glad I did, well I was until she said she needed blood from me TODAY. I hate needles and cannulas especially, I have my bloods done monthly and it's only until recently I've stopped using the magic cream that numbs your skin. I let her do it, and it was so painful and it wasn't your average 30 second blood test, it was minutes which felt like hours but still that's besides the point. IT TOOK FOREVER.

After she had taken my blood I got changed into gym type clothes ready for the exercise test. If you've EVER had to do one you know exactly how I felt and how hard it is. But for those who don't you're bludy lucky but I'll explain. The exercise test involves sitting on a exercise bike (stationery bike) and basically peddle yourself, starting from going downhill, to biking on a flat surface, to going uphill by them increasing the incline. But really it's not that simple; you're covered in wires. So you have the ECG wires on you with those horrible gunky stickers, an oxygen sensor on my right hand middle finger, a mask on my face covering my nose and mouth and obviously Martin hanging at the side but that's nothing new. I'm not going to lie, it was really hard. I haven't done one in a while but I new what to expect but it still was really hard. I have no idea how long it took, I just kind of started, did it and then stopped. Gradually my legs started to give up, my hands were shaking and I was breathing too fast for me too even catch my breath so that's when I knew I had to stop or I probably would've collapsed. Lol, fun. I rested on all the machines for a few minutes, then came off the bike and had 5 minutes too myself. The two people taking my test were soooooooooo lovely and actually told me that I put so much effort in and too them the graph looks good but they don't know figures which I was super pleased about.  After the exercise test we went for an MRI which is the really long machine, NOT the one that looks like a donut (that's a CT scan). I was told too get into a gown and too wait for them to come back. When they did they told me they needed to give me a cannula and my face dropped and I just burst into tears, honestly out of everything cannulas and needles are the worst for me. Anyway, we had a conversation about it and during that I bought up my pump Martin and asked them if they had everything set up for me to go in. My CADD Legacy pump is not compatible with an MRI machine because it has magnetic components, so at GOSH when I had an MRI they would make up my Epo like I do in the evening and put it into a MRI compatible pump which in this case is a huge great big syringe driver put with an extra long line, it's huge but it works. I told the man this and I have never seen anyone so confused in my life, he told me he was going to get somebody else too see if they knew and they didn't so she said she'd get the department manager. Well he came and he was none the wiser. He had no idea what I was going on about just like the others and told me that they don't have a pump compatible for the MRI machine, just great. HOW DOES A HOSPITAL WHO IS SUPPOSED TO CARE FOR YOU NOT HAVE THE RIGHT MATERIALS TO DO SO. I just can't believe they didn't know and I'm more shocked that my consultant didn't know I couldn't go in with it!! I was so discouraged, I honestly couldn't believe my ears. But to be honest I was quite happy that it worked out this way because it meant I didn't have to have the MRI which means no cannula and no contrast dye (the contrast dye goes into the blood via a cannula in a vein which helps highlight certain parts of my heart and lungs too produce clearer images). Not much really happened after that, I didn't do as many of the tests as I expected because they alternate what I have done every time I go up. I had a consultation where we discussed a few things, treatment wise and the now. I don't really have any results because my consultant kindly told me that actually regardless of whether I'm getting sicker or better I'm still on all the treatment they can offer me so what's the point in worrying about figures when I'm doing all I can. But apart from that, we left at around 14:30pm and was home by 16:15pm. It was one of the most enjoyable outpatient clinic's I've ever gone too, it sounds ridiculous but I was in such a good mood considering everything I had too do. I think the weather has something to do with it, and maybe the fact I found a load of old tunes on my iPod so I listened too those pretty much all day! My next clinic is in Bristol so less travelling, a shorter day and much closer. Brilliant. Oh by the way, I've set up a Facebook page for my blog, I'll link it below so if you would like to follow me you can which will make sure you're up to date always with blog posts and what I'm doing, as some times writing about your life can get a bit much. I'm really sorry if there are any typos, I've done my best on such little sleep and a long day, but if there's anything that reads really bad feel free to let me know! Thank you for reading and speak soon guys!
Love, Erika
Facebook Page - https://www.facebook.com/erikacestlavie?ref=hl