Decisions, decisions!!!!!!

Hi folks, I haven't blogged for a while as i've been busy with work and other personal things to.

But I have good news!!! My sister got engaged back in July and I am going to be maid of honour at the wedding. The date is set for next September 2017. So that's one good thing to look forward to, i'm so excited.

As the title says "Decisions, decisions!!", well yes I had to make a big one last weekend 10/9/2016!!!!

As most of you know I am on the active transplant list for double lungs. Well I got a phone call from the transplant co-ordinators last Saturday evening saying they had a potential pair of lungs for me. Unfortunately they where ex-smokers lungs and I have opted to not have smokers lungs at the moment whilst i'm still so reasonably well. This was a huge decision for me to decline as yes I do want new lungs but i'm not willing to put my health at risk by accepting smokers lungs in case I get say like 4/5 years down the line after transplant to be told that I have something like COPD or lung cancer. Not to say this will happen. I've never been a smoker in my life and why should I have somebody else's lungs when they have smoked!! How do you know they have stopped smoking to!! 

At least now i've had a practice phone call and will know what happens when I get my next call. It has taken me just a little over 12 months to get a call!!! I'm sure I can wait another 12 months to!!!

I'm sure the transplant team at Wythenshawe will grill me next time i'm in clinic and ask if I still want to be on the transplant list.  

Well the summer is over with and i'm now back at work after having 6 weeks off for the hols. I work in a nursery and get school holidays off!!! It's ok for some!!! I've started on new hours as well. Going down from 14 hours to 12 1/2. I was struggling a bit on 14hours so decided to drop my hours. So far so good!! Counting down to half term in October which is very late this year. I'm off the first week in November!! Some schools where I live near are off the week before!!! It's very strange!!! 

Anyway that's all for this blog. As always thanks for reading. 

Hope you are all as well as can be. 

 

A weighty issue!!!

As we all know PH limits how much exercise we can do. I'm trying my best to keep-fit and have joined a local gym, with the healthy lifestyles team at my local council. My gym programme is tailored to my needs and activeness and I just do what I can manage. Last week I couldn't manage to go to the gym as I was absolutely exhausted from getting up at 4 in the morning with the silly dog!!!! So I decided to go swimming, but this is one thing where I have to be supervised doing so I asked one of my friends to come with me. She is a qualified swim instructor and life guard. Well I managed about 10 lengths and felt so much better after doing a bit of exercise. 

Another issue is what it says in the title "A weighty issue!!". I'm really struggling to loose weight at the moment. I joined weight watchers 8 years ago and the programme has changed so much. I seem to be struggling with the new programme and it's getting me so annoyed. I loose weight one week and be really good then i'm putting it on again the week after!!! It just does not make much sense to me. So i'm going to ask at my next specialist appointment which is tomorrow 16th March. Should I just quit weight watchers and try another different weight group eg slimming world??? It may be worth it for me. I have lots of nice clothes in my wardrobe to wear and just can't fit into them!!! How annoying as I used to be quite a slim person before I got PH!!!!!!  

Anyway this is just a short blog this time round. 

As always thanks for reading my blog.

It's true what they say-"Having a chronic illness is tiring"

Well I know this is late but happy new year everybody.

As the title says, it's true living with a chronic illness is tiring, especially when your not feeling 100% yourself. Since the new year I have been a busy person living my life to the fullest, as much as I can without PH defeating me.

I had a routine appointment with the transplant consultant at the beginning of January. All was well apart from the fact that I have put a bit of weight on. Who doesn't over Christmas and New Year!!!! He basically said I need to keep as active as possible, which as we all know is very hard work when you have PH. But I joined the gym back in November and try and go twice a week. That sometimes doesn't happen especially if i'm meeting up with friends during the day or if i'm really tired. I also try and go for a walk with my mum/dad and Jasper doggie. Weather permitting, as always I struggle when it's very windy, like it has been at the weekend. 

The last few weeks have been somewhat busy. I've been staying at work an hour longer than I should so I can help out with the lunch club. And i've started to feel the effects it has on my body. Today (Monday) my body just did not want to play. I got up as usual ready for work, had breakfast and my tablets. Then just as I was about to set off for work I was sick all over the kitchen floor and sink!!! Now this got me very upset and worried as this was how I was just before diagnosis with PH. I thought to myself that it couldn't be PH as I would have been like that for a while if things where deteriorating. I think it's because i'm feeling rather exhausted and had had a busy weekend to. It also doesn't help when i'm smothered in a cold!!!

Anyway as i'm writing this I am feeling better but just absolutely worn out. But I will carry on none the less. It's only 1 and a half weeks of half term. I can make it and I will!!!!! 

This weekend coming 6/7th Feb is my brothers birthday. So I will be busy celebrating that with him and my family. The weekend after that will be celebrating his birthday to. We are all going to the casino in southport. Should be fun, as i'm a "lucky" person as my family keep saying.

I will let you all know how we get on. 

As always thanks for reading. 

Here's to a fab 2016. 

Life is full of up's and down's

Hello everyone, hope you have all had a good Christmas, sorry I haven't posted on here for a while. Been a little busy with work and other things to. Well i've enjoyed this year, made lots of happy memories by going on hen-do's, weddings, holidays and meeting lots of new friends at the PHA UK Conference. 

I really enjoyed meeting lots of you people at the conference and it gives me hope that there is a lot of work and research going on to eventually find the cure for PAH. It was a joy to finally meet Stacie- you are such an inspirational person. Also Tess you were lovely to talk too. As where many others who filled me with hope to battle this horrible condition.

As it says at the top "Life is full of up's and down's",  i've had a few wobbles over the last few months. Basically because I have been tired or because I just really hate having to battle this condition on a daily basis. I hate that I can't go for a really long walk with our beagle anymore, it really stabs me in the heart as I loved going walking. I also hate the fact that I struggle to go out with my friends drinking till the early hours of the morning as it makes me feel so tired and ill, as I found out when I was on a hen-do in n Manchester back in June. I long to be able to be free from PAH and do normal things- yes I know I can still enjoy myself. 

Well Christmas at our house this year has been quiet and fun. We all went round to my sisters (Caroline) house on Christmas Eve and had to wear our Christmas jumpers, we had turkey baguettes with Brie and cranberrIes, it was a fun evening. Then on Christmas Day we celebrated Alex's 30th birthday-my sisters boyfriend. Caroline invited us all round to her house  for birthday drinks, and she and Alex stayed at their house and had a birthday meal together. At our house it was just a lovely family Christmas meal-mum, dad and brother. Boxing Day again was a fun day. Caroline and Alex came over for there Christmas Day. So basically i've eaten and drunk lots and it's been fun. 

So here is to a very happy new year to you all. Let's hope it brings joy and good times. I'm already looking forward to 2016 as i've got a hen-do in Marbella in April and a wedding in August. Let's see how many more things I can do and make happy memories. 

All the very best to you all. 

As always thanks for reading. 

A positive PH specialist hospital visit

Well we are already at the the of October. As I'm currently writing this i'm on my half-term hols from work. Not done a great deal apart from having my INR's checked, meeting up with friends and generally sleeping. Being back at work has real took it out of me this term. I have already had a week off with being ill!!!! It wasn't PH related thank goodness, but it made me feel awful. I had a virus/cold/chest infection and felt miserable the whole time. I had to get myself better as I was going to Zoe's PH Phighters party. It was lovely to finally meet with Zoe and know that there is someone else with PH who lives not to far from me. The party was fantastic and the total amount of money raised was well over two grand. Well done to all of Zoe's friends, family and colleagues. 

Me and Zoe.

Last week 19/10, I had a clinic appointment with my PH specialist. All is well and i'm stable on my meds. They have taken me off my amolodipine tablet as it's doing exactly the same thing as the sildenafil and macitentan. The specialist said it shouldn't make much of a difference to me but if my symptoms flare up I have to ring Sheffield and they will put me back on them. I also asked about a "fit to fly" certificate as i'm going to Marbella next April on a hen do!! The specialist said I would need oxygen as my oxygen levels dip up and down. So now I have to ring my specialist centre and speak to the nurses to arrange oxygen for myself. I also got to meet two other PH patients whilst at Sheffield, Judith and Steph. Was lovely to meet them both, i've never actually met anyone from the Facebook group at my specialist centre before. Was good to have a chat about how we manage our PH and how we where feeling. Steph I hope your feeling better. 

 I'm also looking forward to meeting lots of other PH friends at the conference this weekend. 

Never forget.....hmmm easier said than done.

Most of you will now know that i am now on the active transplant list waiting for double lungs. On the 6th August i started doing to pulmonary rehab classes. This is where we do a series of exercises to build my strength up for when I have my transplant. The exercises are fairly easy to do and consist of lunges, sit to stand, wall presses, biceps curls using weights, step up's, bike and something else which I can't quite remember what it is. After the hours exercise there is usually an education lesson, sometimes I stay for these but the majority of people have COPD. I'm enjoying going to the classes even though it's more aimed at COPD patients, but i've met some lovely people. There is a lady in my class that has IPAH, she uses oxygen which I don't at the moment. 

Anyway back to my tale and the reason why I have put the title as it is. I went on holiday to Cornwall lwith my mum in August. We stayed in a static caravan on the lovely Mother Ivey's campsite. My brother has bought a plot on there to put an adapted static on for his use as he is a wheelchair user, I won't go into to much detail about it though. Anyway me and mum set of on the Sunday 23/8, I had packed all my clothes and just before we set of my mum said to me have you got everything?? My reply was yes. We got down to Strensham services on the M5 and I suddenly realised I had forgotten to pack all my tablets except my sildenafil!!!! How very silly of me!!! I was so annoyed with myself!!! My mum was not best pleased and said "I'm not turning around now for them, you will have to ring your dad and be very nice to him to see if he can post them out to you!!!" So I rang my dad and asked him to post my tablets to me on Monday morning using special delivery so that they would be there on Tuesday morning. We got to Cornwall on Sunday evening and it was lovely, we watched the sun go down from the headland of the campsite and then went back to the caravan. On Monday we decided to have an easy day as I didn't know how I would feel from not having all my tablets. I managed fine but felt a bit more breathless than usual. Tuesday arrived and I went upto the caravan site shop and there was my name on the board "Makin" hahaha!!!! I went into reception and said I have a delivery today my name is Catherine Makin. The receptionist said oh yes I think it's here, and pointed to a pile of brown paper bags/parcels on the floor. Finally my tablets had arrived!!! I quickly took them and we went out for the day. The campsite has its own private beach so on Wednesday we decided to go down and have a little walk along the sand. Now to get down to the beach is a very big slope, I can get down but can't get back up again as I don't do well with inclines as they make me breathless really easily. 

This is Mother Ivey's beach.

Anyway I decided I would go down and have a wander along the beach with my mum in tow. It was a lovely sunny day, the wind was a bit cool but I had my shorts on!!! We walked along the beach and sat down on the rocks for about an hour watching the waves crashing onto the rocks. It was pure bliss!!! Eventually we set off back up the beach to make our way up the big slope. I'm thinking yeah I can do this, I will just take my time. We approached the slope and I was a little out of breath, I then spied a little golf buggy just at the end of the slope but there was nobody in it. Then my mum spotted one of the staff from the campsite and asked if I could jump in the golf buggy to take me back to the top of the path. The gentleman was lovely and said I could jump on the buggy and he would take me back to the caravan. I said I would be fine walking back upto the caravan so he dropped me off on the campsite road very near to the caravan. We also had a wander up to the lighthouse at Trevose Head on the headland but it was very windy and I couldn't walk far as the wind really takes my breath away. That night we went to watch the sunset at Trebarwith Strand, such a beautiful place and it's good for watching the sunset. We found a pub to have our tea in and then dove down to the car park. Bearing in mind the car park is on a bit of an incline, and as I mentioned earlier on I don't do very well walking up inclines. So we sat and waited for the sunset but it kept going cloudy so we didn't get that good of a sunset. Never mind there is always next year to watch it. 

This is a picture of the sunset at Trebarwith Strand.

On Thursday we went to a vineyard- can't actually remember the name. But the wine was gorgeous!!! Unfortunately they didn't have any red wine in as it all depends on the produce if the grapes. The grapes that where being grown this year won't be used for another year to produce wine. That's how they make wine apparently!!! We then decided to go to Polzeath beach. One of my mums favourite places. We found a parking space and decided to go and get a Cornish pasty for our dinner. We wandered along the beach and sat down on the sand. It was so busy as it was the school holidays. We sat on the beach for about 2 hours then mum said come on we have to get going now, need to pack our stuff and go home 😞. The journey home was horrendous!!! They had shut part of the M5 at Birmingham so it took longer to get home than it did to get to Cornwall. 

Anyway that's my tale of my holiday, I managed fine without my tablets for 2 days and had fab tIme in Cornwall. 

Wedding day and a trip to London

Well it's been a busy few weekends for me this July/August. Firstly i went to my friend Heathers wedding to her partner Laura on the 25th July. It was over in the Peak District at a hotel called The Maynard. Just 20 minutes away from Sheffield!!! I had such a brilliant time at the wedding but was so tired the day after. Let's give you an insight into that day. I had to set off at 10:45/11am to get to the venue. And my brilliant brother volunteered to take me and pick me up. I was up at 7:30am to have my hair done by the hairdresser. Then i had to go and collect my flower from the florist. By this time it was 9:00am and i thought before i get dressed into my outfit i will have a bacon butty and a rest so I don't get to over-tired. So there i am sitting on my bed with my feet up and resting, then my mum comes to me and says "it's nearly 10:00am are you not getting dressed??". So i shot up off my bed and got washed and dressed and into my new dress. Being careful not to reck my lovely hair-do. I applied my make-up and spritzed myself with perfume and all ready for 10:45am. Not forgetting all my tablets that I would need for that day. Gosh so many things to remember when we are living with PH. Anyway we had a good run out through the Peak District to get to the venue this consisted of going on all the motorways, along the Snake Pass and into the little village called Grindleford, which was were the wedding venue was. It was a beautiful hotel and also the weather was good to. A little cool when the sun went behind the clouds. The wedding began at 1:30pm and i sat with two of my friends Paul and Leigh. My other two friends Carolyne and Chris where Heathers bridesmaids. They walked down the aisle and looked beautiful. Then in came Heather and Laura and they both looked gorgeous. It was a lovely ceremony and i very nearly cried!!!! I'm a bit of a softie!! After the ceremony we went into the hotel gardens and waited around for photographs and we had pimms and canapes. There was some lovely food-to many to mention. It was about 3:30/4pm when the wedding breakfast was served and i was getting a little tired and my feet where starting to hurt-after all i did have heels on!!! So I quickly changed into my flip-flops for comfort. The wedding breakfast was lovely and i was stuffed afterwards. We had champagne for the speeches which where done by Carolyne and Chris for Heather. And then it was Laura's bridesmaids-can't remember their names. I thought Carolyne and Chris's speech was better!!! Then after the meal we all went back down into the bar whilst the ceremony room was transformed into the evening do. By this time i was beginning for feel tired and just wanted to fall asleep. I waited till the cake was cut and the first dance was over and then i phoned my brother for a lift back home. I left the wedding about 10pm I couldn't go on anymore i was that tired. But all in all i had such a fantastic time. 

The second of my weekends was spent in London with my mum and dad. They treated me to a show- my all time favourite The Phantom of The Opera. The whole weekend was for me having to put up with everything i have been through in the last 12 months. Anyway it was another early start to one of my weekends. We set off from Preston train station on the 8th August, down to Euston. We stayed in a lovely hotel-Double Tree by Hilton which was a 5 minute walk away from Euston station. In my terms it would have been half an hour!!!! We arrived at the hotel and went straight to the room for a rest. I thought i will just have half an hours sleep to recuperate. Next thing i came to and my dad was saying "are you alright, you have been asleep for at least an hour". Gosh i must have needed that rest as it didn't feel like an hour. I got up and refreshed myself then we went out and caught one of the hop on hop off buses to do a bit of sight seeing. We got caught up in and ISIS demonstration on Regent St, which made us a bit late for getting back to the hotel for tea and getting changed ready for the theatre. We had a lovely meal in the hotel, i had butternut squash ravioli. It was delicious, I couldn't finish it as it was huge!!! We then set of to find a taxi that would take us to Her Majesty's Theatre in theatre land. Well what a performance of Phantom, it was excellent. I could go and see it again and not get bored with it. If you haven't already seen it I would highly recommend going to see it. We got back to the hotel about 11:30 and decided to have a drink in the bar. Then we made our way back up to the room for a good nights sleep. We got up the next morning about 9:00/9:15am to have breakfast. The breakfast was just as good as the meal we had. You could choose to have continental style or have a full English breakfast. I choose to have some fruit first then had a cooked breakfast. Theory being I wouldn't get hungry during the morning. We went back to the room, packed our bags and left our bags with the hotel until we needed to come back for the train. We set off out again into London. We got on another hop on hop off bus to go to the Tower of London. My dad went in search of a wheelchair for me as it would have been to much walking for me to manage. The only downside to that was I couldn't see all of the tower. When i've had my transplant i am going back!!! It was a fab day out and i got to see the crown jewels. They are stunning and so sparkly. After we had been in the tower we went to the gift shop. My brother wanted a beefeater bear!!! We then went on a river boat cruise along the Thames and again got to see some of the lovely historical places in London. It was a very hot day and i was getting tired and started feeling sick after the boat cruise. So we got back on the bus and stopped off at Harrods where we used the toilets and bought a drink to refresh ourselves. That's another place i will be going to once i've had my transplant. So i can walk around all the departments. It took us a long time to get back to the hotel as the bus went all the way round London nearly. We decided to get off at Oxford Circus and get a taxi back to the hotel to collect our bags, as we were running out of time to get to the train station on time for the train. We had about 30/45 minutes to wait at the hotel so we had a brew whilst we waited to catch the train. We got to Euston train station and had to wait in the departure lounge as my dad had booked assistance for me as the platforms at Euston are very long and I would have struggled walking along them. We got on the train and said our goodbyes to London. I had a fantastic time and will be back in the near future for another weekend of fun. Thanks to my mum and dad for the weekend.