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

Inspiration ♡

So recently I've been a bit distant on the whole social media front, mainly Blogger and Facebook and it's really hard to explain why but I'll try my best. 
So a few weeks ago, my very good friend (and ex PH sufferer, ooooo there is so much joy when I say that yay) Stacie Pridden who I think I've mentioned in a previous post a while back, got her call. Now 'the call' or 'her call' if you're not in the transplant world means that they've found a match for organs. And in this case they found a match for Stacie's organs (her heart and lungs). Stacie has been on the transplant list for 3 years and she's also had her fair share of false alarms so everyone had their toes and fingers crossed and were praying that this would be it for Stacie, that she would finally get her transplant. 
And she did, SHE GOT HER FRIGGING TRANSPLANT GUYS. AND SHE WAS OUT OF HOSPITAL QUICKER THAN YOU CAN SAY 1 2 3 AND NOW SHE'S AT HOME AND RECOVERING AND SHE CAN WALK AND GET UP THE STAIRS WITHOUT STRUGGLING TO BREATH AND AND AND SHE DOESN'T HAVE TO WEAR AN OXYGEN TUBE ANYMORE AND WOW.
It's absolutely incredible, the day she got the call I cried, with happiness but also because I was scared. Honestly the first thing I said was "Shit, I spoke to her half an hour ago, what if I don't get too speak too her again because it's such a delicate operation and what if something goes wrong". Goodness knows how her family were feeling, I was an absolute mess. I was genuinely scared for Stacie when I saw that note on Facebook from Candice and it wasn't even me!!!
Unless you've had a transplant or have been asked to consider a transplant you don't know actually know as much as you think, and I must say, sometimes I meet people and I tell them about transplant and they say "Oh well if you were my daughter you wouldn't have a choice". And that's because it's portrayed to be a simple thing having your organ's replaced, people see it as a quick fix sometimes and don't actually know what happens after. They think 'Oh as soon as you've had your transplant you can do all these amazing things that you couldn't do before'. Yeah part of that is true but what people don't know is that you have too teach yourself how too breath again, how too cough and you've got strict medication rules to stop rejection. For the first month after being home you have to have weekly visits too the hospital; there is so much more to having a transplant of this kind.
I was worried for the operation and for all the recovery and steps that happened after. But she proved me wrong that I had nothing to worry about, the women got her chest drains taken out with NO pain relief for goodness sake!!! And now less than a month after transplant she's home and going on walks and she's already getting ready too go to Wimbledon. There is nothing stopping her at all and it's absolutely inspiring and I'm so lucky too know this incredible lady. I cannot thank the donor and their family enough for quite frankly saving one of my best friends and for giving her a second chance at life and allowing her too inspire so many people, including me. 
Transplant is something that I've been asked too consider, and I've had a lung transplant assessment about a 2 years ago now so that they could get all the figures and facts in case I want to be put on the list. I don't. But something happened when Stacie had her transplant, it made me feel different and funny. I don't know how too explain the funny feeling, so you either get it or you don't and if you don't that's okay, you're really not missing out on much. Anyway it hasn't made me go GET ME ON THE LIST NOW I WANNA DO IT. Because it certainly hasn't done that. Lots of things creep me out and scare me with having a transplant and some things absolutely petrify me because I'm not very good with pain at all. Obviously there are so many benefits to me having a transplant but one thing that really get's me is that, there's no guarantee that your body will accept the new organs (in my case lungs) and it could be rejected straight away, which means I wouldn't have long too live (days or weeks) before I passed away because of it when I could of had a few more months without it.   However it has got me thinking about the possibilities, the negatives and positives. The things I could potentially do after I've made a full recovery and the places I could see. But there is a lot to think about but maybe this is a start and this is all down to Stacie and her amazing donor and donor family. And I honestly can't thank Stacie enough for being who she is and for being such a huge inspiration too me and the donor and their family for giving her the chance to continue being the amazing person she is and for giving her a second chance at life. 
Bring on the bucket list Stace. 

As always, thank you for reading 

Love, Erika