Goodbye 2018 & Hello 2019

Dear Readers,

It’s my final post of 2018... I’d like to thank everyone for supporting me and following my life with Pulmonary Hypertension over the year.



As we come to the end of 2018, I’ve been reflecting on my year and it hasn’t been a very good one for us. I’m glad to see the end of it to be honest. It’s definitely had its ups and downs and where as PH has never stopped me from doing a lot of things in life, I believe this year has shown what it can stop me from doing and it’s been bloody difficult and frustrating. Mentally I've struggled due to personal PH reasons and when you get yourself feeling low which I did at the beginning of the year, it's hard to get out of it. Living with PH is such a struggle at times and even though I share a lot on social media, there are things that I don't show and mention and behind closed doors things have been different this year. I am very lucky the Brompton have supported me so, so much and helped me to turn to people who can help me and it thanks to them, my Mum and Terry that I have come this far.

This year has also been difficult as I’ve lost people close to me, some due to PH, but they will always be remembered. It makes me even more determined and hopeful for a cure one day.

There has been some great times intermingled, such as, Selexipag is now approved in the UK, we’ve had days out with with our close friends and my PH Twinnie and Terry and I attended a conference in Italy to speak about living with PH. Terry is very excited to start his new job next year too! Plus I’ve always got my Mum and Terry (and Izzy) by my side.

I will always be thankful to my Mum and Terry for their unconditional love and support through the dark times this year and the Royal Brompton Hospital have got me through another year yet again. Anyway I will remain positive and I hope 2019 will be a better year for us. Onwards and upwards into a new year!

Please continue to follow all my social media, FacebookTwitter & Instagram as I will continue to raise awareness for PH next year and subscribe to my YouTube channel as my PH videos will resume again next month.
I hope 2018 has been a good one for you and 2019 will be even better. A huge thank you to all of you once again and I will see you again in 2019! Enjoy your NYE whether it’s a quiet cosy one or you’re out with friends and family! We're out celebrating with our friends tonight!
#NoCureAlwaysHope

Thanks for reading! 💜

Proud of my Scars

Dear Readers,

Ever since Princess Eugenie proudly showed off her scar whilst wearing her beautiful Wedding Dress, it has been spoken about ever since her Wedding day.

I thought I would share my photos of myself showing off my scars that saved my life, in my Wedding dress...



At 6 months old my right lung collapsed and I had to have a right lower lobectomy, which was a rather major operation for a baby of that age. I was strong enough and I am here to tell the tale! This means I have had the lower two loves of my right lung removed. If this wasn't removed, I wouldn't be here today. It means I will forever be prone to chest infections and have to keep my left lung as healthy as possible, but I will be forever thankful for the hospital in the Philippines for saving my life!



As you all know, thanks to this blog and my other social media awarenesses, after that operation, it sadly wasn't the end of my health battles. I will continue to fight the incurable heart and lung condition Pulmonary Hypertension and hope that one day a cure will be found.





Thanks for reading!

Grief Stricken

Dear Readers,

Sorry I’ve been quiet lately. 


It's suppose to be a time of looking forward to Christmas and festive cheer but, sadly it’s a time of grief for my family. Not only is it the anniversary of my father's death, but we’ve also had to come to terms with the sudden loss of my eldest brother.

My Mum and I have been in Spain for the past few days, so we can walk round the village he used to live and attend his funeral.

Siblings with their Dad

It was good to return to the place where we have many fond memories with him and also where we know he loved waking up to everyday.

Steve was a very happy guy and always up for a laugh. He moved out to Spain with his partner for a better life over a decade ago and he was very happy there.

His sudden death has been a real shock for all who knew him. He will be sorely missed, but in this time of grief we will remember the good times we have had with him.


Despite the devastating reason for our time out in Spain, my Mum and I stayed at a super hotel on top of the mountains with amazing views and it was lovely to just chill out and think about life whilst staying in a remote area of Spain. We hired a car and for the first time ever I drove on the other side of the road... very daunting!! And also spending a few days with my Mum is always wonderful.


The life of families never run smoothly, but the three of us will always be siblings. I will always be grateful to have had Steve as one of my big brothers in my life, and even though I don’t see my other brother, JP often, we know we love each other and are only only a phone call away.

As I mentioned, it has also been 4 years to this day in which our Dad passed away. It never gets easier, but I will never stop talking about him and keeping his memory alive. Steve is reunited with our Dad and I’m sure they will both look down on their family and keep a watchful eye on us as we continue through our lives.

With all the shock and grief, it's obviously taking it's toll on my health and it's all been very stressful. I'm not doing too well at the moment, but I'm sure with lots of rest and taking it day by day, I'll start to feel myself again to hopefully be okay to enjoy christmas, as best as I can.


Rest in Peace together now, Steve and Dad. Until we meet again.

Thank you for reading!

Iron Time

Dear Readers,

For the last couple of weeks I've mentioned my PH symptoms have been very prominent, this is usually because my iron levels are low. When my iron levels are low, my PH comes out at it's worst! I get very breathless, meaning I struggle to walk from my bed to the bathroom, I look like a 'ghost', I'm extremely tired every day and my body pain becomes chronic - so yeah, I feel pretty rough!

On the 5th November I went to my local hospital, Broomfield and went had my bloods taken to check my iron levels. I hate having my blood taken, even though it's something I have to do quite often, but my veins are some of the worst collapsing veins ever and so I panic and get myself stressed EVERY time... just for a blood test!



Anyway, I got through it okay and a few weeks later, my results were through and low and behold my iron levels were severely low. My results showed 9 - I should be 15.....!!

I am really thankful to the Royal Brompton hospital, because with their help, they have arranged for me to now have iron infusions at Broomfield hospital, instead of trekking to and from London every 6 months. So on Friday 23rd I went and had my iron infusion. As I said earlier, my veins and needles do not go together, so yes I was an absolute wreck by the time I had to have a cannula inserted in my arm.


Every time I go anywhere where needles are needed, I tell the nurse/doctor that my veins are pretty rubbish and majority of the time they are sympathetic and with blood tests they use the 'baby needle' known as the butterfly needle.However there isn't any smaller needle when it comes to a cannula, so I have to grin and bear the pain! I think because I have scars from cut downs when I was little because they couldn't get to the veins, it's scarred me for life and being used as a pin cushion at times, doesn't help my confidence either!

Anyway, back to hospital, my nurse that day was lovely and because she wasn't sure if she'd find my vein first time she went and found the Vein Finder!!! A machine I've never seen or had used on me before, but my goodness it's a life saver for me. The nurse found a big, juicy vein in my right arm and went straight to it with the needle. The cannula went in straight away and all stress was gone! The iron infusion began and I chilled out and waited for the iron to be pumped around my body. 



Terry took me to the hospital that day. I think I squeezed his hand a little too tightly when the cannula went in 😁 but other than that all went smoothly. He took my mind off the infusion and after waiting another 30 minutes after the infusion had finished, he drove me back home. After suffering migraines after previous infusions, I always have someone with me, incase I'm not able to travel home. 



So the infusion is all over! I haven't got a bruise, unlike other infusions, and now it's time to allow it to get into my system properly and for my symptoms of PH to subside. It'll take around 6 weeks to be taken in fully, but I am feeling more energised already! My next hospital visit is in January at the Royal Brompton, for my usual PH clinic... until then, onwards and upwards! 👍

Thanks for reading!

Another Birthday Milestone

Dear Readers,

On 13th November, I turned 28. It also means it's been 10 years since I fought my biggest battle of staying alive!! Sounds dramatic, but I literally was trying to stay alive, as I was so so poorly when I was diagnosed with Pulmonary Hypertension.



I don't know whether the last 10 years have flown by, or not, but one thing is that I am full of gratitude to all those that have supported me over the 10 years and got me to where I am today.

A lot of support and help has been from the Royal Brompton Hospital, and yes it was a difficult beginning, emotions were everywhere when I first got diagnosed, but to be honest, I can't fault them because ever since they have been fantastic. They've always been on the end of the phone and they get me in quick if I'm feeling really ill and they have supported me through many parts of my life in the last 10 years! So for that I am every so grateful!

My parents have been amazing and have always supported my decisions over the last 10 years. I am sure my Dad would be very proud of where I have got to today and I know he will be watching over me throughout my life. 

My friends have been wonderful too and as you know friendships change as you grow up and you lose friends, but gain new ones and the friendships I have now are the best and I love them all very much. They have been great with me and have seen me through the ups and downs and have always understood if I've had to cancel last minute due to ill health. I couldn't ask for better friendships and they sure know who they are! I have also gained friendships through fighting Pulmonary Hypertension and meeting others with PH and these friendships are just as important to me too.

And finally, the man who became my husband, Terry. Ever since we met in 2014, he has been my rock. He's really helped me through some very difficult PH times and he knows I appreciate everything he does for me. We help and support each other and have a wonderful relationship, we're very lucky to have each other... Thank you Tinder! 😁 And of course I must mention Izzy, our little poodle!



When you have a chronic illness, you realise who will stay and who will leave you, but the most important people are those who have stayed, but it is for those people you continue to fight everyday and make sure that you make the most your life. 

As life goes on and whether or not you are fighting a chronic illness, relationships will change, you will lose friendships/relationships along the way. If people don't want to be in your life, then so be it, you'll probably have a much better life without them! I know that's the case with me, because life is too short to mess around and try and have a relationship with those who don't want one,  especially when fighting PH! So enjoy the friendships and relationships you have and make lots of happy memories with those people. They're the people that matter!

PH doesn't have a cure, but I will make sure that my raising awareness will never cease and I hope this new birth year will bring strength, positivity and determination to continue my fight with Pulmonary Hypertension.

 


I had a wonderful birthday, received some lovely gifts and consumed A LOT of food!!! I went for a yummy lunch with my Mum, Aunt and Cousins and then out again in the evening at Loch Fyne with Terry. The food there was amazing, definitely recommend that place! 





Terry and I went to Cadbury World on the Saturday and we had a great time! It was a first experience for both of us. As my health isn't that great at the moment, I spent the whole day in a wheelchair, but we were incredibly surprised at how accessible friendly the whole place was, even going on the little car ride, I could stay in my wheelchair! The staff were very helpful and we couldn't fault our experience. A fab day out and lots of chocolate was eaten.. by Terry! I'm not a chocoholic at all, I like it when I fancy it, but give me an Easter egg and it'll still be sitting there 6 months later...!



Thanks for reading!

COPD Conference

Hello Readers,

I had the privilege and honour to represent my amazing Pulmonary Hypertension charity, the PHA UK at a COPD conference in Rome!

Our flight was with Ryanair, and for the first time I chose the special assistance service when we booked our flights. I was extremely grateful for this service and it made our flying experience much better and less stressful. I was in a wheelchair as soon as I got to the airport to onto the plane and also  the same in Italy too. Both flights there and back were excellent and it is definitely a service well worth using. We would highly recommend it. Thank you Ryanair!



I had to speak in front of many doctors and researchers from around the world and it was great fun.. once the nerves settled! I spoke about living with Pulmonary Hypertension and giving the doctors a patient's prospective of what it is like to live with a condition like PH. The reason I gave this speech was because, as much as we, the patients, love hearing about the medical advances etc that are happening and "out there" for us, I felt it was important for the doctors to hear how we felt about it all and get them to understand how we feel.

       




My talk went down very well, ending with a rapturous applause and great feedback, so I was extremely happy. Terry and I wore our matching PHA UK tops, and I also mentioned the PHA UK and the amazing work that they do for us here in the UK. 

I also want to say a huge thank you to those who sent me good luck wishes and for all of their support for my talk! I received so much, and for that I was very grateful, and help it me for when I was giving my talk. I was doing it for you guys, you PH'ers!!



The conference was a 2-day event, but Terry and I decided to stay on for the week and sight-see Rome, as we were there. We had a wonderful time looking at the main attractions, such as The Coliseum, Trevi Fountain and Vatican City. 

ADVICE - TAKE YOUR BLUE BADGE!!!

We were very lucky seeing the main attractions, because I took my Blue Badge with me. This proved I had a disability, which meant we skipped the 1-2 hour queues for each attraction and also got free entry as well. Fortunately, as the UK are still part of the EU, it was accepted, but once we leave the EU, I fear it won't be accepted, as they were only allowing free entry to those with Blue Badges from EU countries. I really hope this isn't the case, as this would be such a burden for those with disabilities and we won't be able to see the places we also deserve to see, despite our disabilities.


We did a sight-seeing tour on Segways, which was extremely fun and we also took a day trip to Pompeii. It was such a wonderful sight and so interesting, full of history. Unfortunately it's not very accessible-friendly, which meant I had to walk around the park, but Terry piggy-backed me round some of it when I got tired, especially the hilly parts, but it is definitely worth the trip!


           




We had a super time in Rome and we loved it all! I can't thank the PHA UK enough for this amazing opportunity and for all those who followed my trip on my social media and sent me good luck wishes for my talk.

            




Unfortunately I am REALLY paying for the good time I had and at home feeling very sorry for myself. I'm resting in bed every day and having O2 when needed. Sadly, it is something that always happens - we always pay for having a good time - which sucks! However with lots of bed rest this week, I am sure that I'll  be back up and running next week, as I have important events, such as playing at my friend's Wedding and of course reaching another milestone... my birthday!

Thank you for reading!

PH Awareness Week 2018

Dear Readers,

The week of 21st - 27th October was PH Awareness Week. 




It was a really successful week with lots of people getting involved in sharing their stories and raising lots of awareness. Unfortunately I couldn't raise as much awareness as I usually do, as I was in Rome. 


 

However, Terry wrote his first blog called "The Positive Carer" - you can read it here.

I released 3 videos to encourage people to talk about Pulmonary Hypertension and also about Organ Donation and even though we were in Rome, we joined in with the #PHWeekChat on the Friday!

Here are my vlogs...


PH Awareness Week 1 - Raising Awareness for PH


PH Awareness Week 2 - Help To Raise Awareness for PH

PH Awareness Week 3 - Organ Donation

September Update

Dear Readers,

Sorry it's been a while since I've written a blog post, so I thought I'd give an update on my life in September.

My legs are still agony as after starting the aspirin, I immediately found out I was severely allergic to it, in a way that my breathing was absolutely terrible! I could hardly breathe and so I was taken off it straight away! The allergic reaction means the Bisphosphonates for my legs has been put on hold! I have had to wait on these tablets, as due to this I've been feeling under the weather. I want to be feeling strong and good, so if I were to have any side effects or any positive reaction to these tablets, then at least I will know the difference.

Other than that blip, I've had a good month as in meeting up with friends and days out in London, so I've been very lucky with that. The bank holiday before September, Terry and I met up with my mates. It had been quite a while since we had all met up, due cancellations of illness etc but we finally got together and had a round of mini golf and went for lunch. I know I can always count on my friends and I couldn't ask for a better group of friends who are always there to support me and my challenges of PH.



My Mum and I went to London for the day and had Tea on the Thames. It was my Mum's birthday gift and she decided to take me.. a really enjoyable mother-daughter day. I really do love spending any amount of time with my Mum!



The next day I was very excited to meet Roshni. Roshni lives in India, but we met in London as she was over here for a holiday. It was so good to finally meet her after I first chatting online through our PH blogging. Roshni and I both have the same kind of PH and it was good for both of us to chat everything PH and understand what each other have gone through and are going through. It truly was a lovely lunch and meet up and I'm so glad that the world of blogging and raising awareness had brought us together, as without the internet we wouldn't have met and been able to support each other through our lives of living with PH.




This month means it's back to school. Unfortunately I won't be returning to my job, which I absolutely loved as I had to leave due to the strain on my health, but I've decided to open up my own music teaching. I am now teaching a few hours from home and choosing my own times and the amount of people I want to teach is much easier for me.

Since giving up work, I have felt such. huge amount of guilt that I'm not able to work a full time job to help with the income. I am very fortunate to have my music skills and to be able to teach people the piano, cello or trumpet and I'm very lucky that Terry is so amazing and supportive through out this. Even though it's only a few hours a week, due to my PH, it makes me feel a little better knowing I'm helping out a little. As they say, every little helps!

Sadly the PH community has lost another PHriend to PH. Serena was loved by so many around the world and she campaigned so much to raise as much awareness as possible for PH. It is with her encouragement that I've done a lot of my own online campaigns. She will be sorely missed, but always remembered and a true inspiration to many. You can read about her amazing work and efforts for the PH community here.

So overall this month, I've had my great days and some rubbish days, but that's life right? I've ended this month on catching the dreaded cough and cold going around at the moment! I'm currently on antibiotics, so another reason for not starting the Bisphosphonates! Hopefully I'll shrug it off quickly and get my mind focussed on my trip to Rome!! I am so excited for this conference in a few weeks and I can't wait to raise awareness for PH and represent the PHA UK and speak in front of over 180 heart and lung specialists from around the world. What an honour!!




So as we go into a new month, I hope it'll be a good one and with lots of great events happening for me, I know I have a lot to look forward to and be positive for. I have to remember blips are obviously going to happen, but I will get through them and move forward in the right direction.

October is also the month for PH Awareness Week UK, (22nd-28th October) so I hope many people will join me in that week to raise lots of awareness for PH. I will actually be in Rome in that week, but I have prepared 3 videos for this week which will be released Monday 22nd, #PHWednesday 24th and Friday 26th. I will try and join in as much as possible, but I hope I will have done my bit by sharing the videos that will be released during that week! 




Also as part of this awareness, I have started a new online raising awareness campaign called, We Are PHighters - I know it'll take some time to build but my hopes and aims for this project is that many PH'ers will get involved and share their PH story. This website/blog is dedicated to PH stories only and I hope that people will read and be inspired by the stories people tell of their PH journey. So please if you have PH and are happy share your story, then contact me on any of my social media or email phighters@hotmail.com



Now to enjoy a new month...




Thank you for reading!


We Are PHighters Campaign

Dear Readers,

I have been working on a new online raising awareness for Pulmonary Hypertension campaign. This went live today on World Heart Day 2018.

I love raising awareness through my social media platforms and want to do a little bit more. I am hoping this campaign will be a success and many PH'ers join me to fulfil this new quest for our fight against Pulmonary Hypertension.

The aim of the website is to share stories of people with PH from around the world. It is dedicated to them, so they can share their thoughts and feelings of living with Pulmonary Hypertension. The PH community is vast across the world and to get stories from everywhere and bring them together will help the fight and raising awareness for PH even more.

I know this is new and like my other campaigns will take time to build up, but once I get more stories coming, my aim is that a new PH story will be released every Monday.

So, please visit my sister website We Are PHighters and send your story to the email stated or contact me through any of my social media platforms so you can join the other PH'ers! 

Thanks for reading!



New Diagnosis of Periostosis

Dear Readers,

The day I've been counting down to finally arrived! 




As you all know I've been suffering from severe chronic pain in my legs. Now I've always had painful legs ever since I was a child. I've had a few diagnoses.. First of all it was growing pains, but I stopped growing (too early! 😁) but the pain continued, then it was restless legs, then it was migraines of the legs, but none of these made sense! I’ve always taken para-codeine, the strongest dosage for my body weight, but only at night, as it makes me sooo sleepy! There’s only so many painkillers I can take to stop this pain and I’ve had enough!!

I've always had low oxygen saturations in my feet, and something always mentioned was that I had a high lack of oxygen reaching my lower limbs, causing the pain. Of course with a hole in my heart and my oxygenated blood not being able to pump around my body easily due to the PH, it made sense. Anyway the pain has continued and it has recently gotten worse and worse. On bad days I can't even stand up due to the pain and some days my husband has to carry me from our bed, to the bathroom or to the sofa. If Terry isn't around, I hobble around in the house on crutches, so I don't put all of my body weight upon my legs. If need to go out, I use my wheelchair. It's all been a bloody nightmare and it's made me so miserable!!

A few months ago I watched a video (link) on Pulmonary Hypertension with Eisenmenger's Syndrome. This video covered "Musculoskeletal Complications". It stated that it could possibly be the Endothelial Vascular Growth Factor bypassing the lungs. Now, from having that explained to me today, I understand this being a factor that is supposed to stimulate the formation of blood cells to oxygenate the bone tissue in all our limbs. Obviously with our legs furthest away from our heart and having PH, it's even worse for the factor to do this. The bone tissue isn't getting enough oxygen to form the tissue properly leading to bone pain, causing inflammation of the muscles around the bone.

This has a name: PERIOSTOSIS - I finally have a diagnosis for my leg pain!!!!! I am so glad I have pushed this as even though it is another diagnosis to add to my list, it is good to know what the problem is, meaning consultants can start prescribing the best medication for this condition.

What is Periostosis...
Pachydermoperiostosis (PDP) is a primary hypertrophic osteoarthropathy, characterized by various clinical expressions with the involvement of digital clubbing, pachydermia, seborrhoea, periostosis and arthritis or arthralgiaabnormal. Periostosis is the deposition of periosteal bone, manifested by the growth of periosteoma... (long bone pain)




The treatment...
I am now under an Endocrinologist and he has helped me with a 3 month plan. I have started a tablet called Salicylate, aka Aspirin, 300mg. I can take up to 4g a day, which equals to 13 tablets a day. I will be taking this for 1 month. However if the Aspirin doesn't work after a month, I can change to Bisphosphonates in tablet form (dosage not confirmed yet). I will try these for 2 months and then I will be returning to my consultant to discuss how I'm getting on and if I need to move on to the final solution. This solution is having Bisphosphonates intravenously as a yearly injection. So there we have it, my plan for the next 3 months!

Final Words...
As everyone knows, trials are the only way we and medics can find out more about our own conditions. There isn't much evidence to show that Bisphosphonates are beneficial for patients, especially for those with Pulmonary Hypertension with Eisenmenger's Syndrome, but I can only try and it is a step forward! I've targeted PH with ES because Periostosis is more common in people with this type of PH. So please keep your fingers crossed that this is something positive for us. It is very exciting for not just myself as a patient, but for those with PH & Eisenmenger's Syndrome and my PH specialists. The Royal Brompton are keeping well informed with this trial. I will keep you all updated over the next 3 months. 


Let's hope I won't be in severe pain in a few months time and my pain will be a lot less. I hope one day I will be to control pain flares that happen in the future! I know I will always have chronic pain as its part of my Pulmonary Hypertension, but being able to control it will be wonderful! 🤞

NB: If you have PH and you're already on any of the tablets for this condition, please get in touch with me on any of my social media or email me tessandph@hotmail.com - thank you!

Anxiety & Fears


Dear Readers,

Despite my painful legs, yes they're still continuing, but my appointment is on Tuesday and then I can hopefully trial new meds for my legs. I'm really hoping my body takes to them. My hopes are high, so fingers crossed!

For those who know me well, will probably be shocked at this blog, as I am usually quite a confident girl and won't let PH stop me! Anyway, I went out with friends and had a super time. However when we went for a meal, I needed the toilet, but I had a sudden fear of asking the restaurant manager for the radar key to the accessible toilet. I've never been like this before, but I think as I wasn't feeling very well that day, the thought of rejection was too much for me to cope with at that moment. I do have my own radar key, but some days when I've swapped handbags it's not with me and this was one of those days.



So I asked my husband to come with me to ask for this key, as I knew he wouldn't have any whys? what for? or any weird looks and therefore I felt "safe" that I would get the key. So guess what, yes I got the key and no questions were asked, no second looks, just the key handed over to me! Success! 

Pulmonary Hypertension is invisible for me and I feel I've had my fair share of ignorance and abuse and that day, I knew I couldn't handle it. I was very lucky to have Terry with me that day, but sometimes it is just me and the fear of asking can sometimes get too much that I have made myself struggle to the nearest toilet. 



I know this all seems I'm making a mountain out of a mole hill, but I really didn't want to turn a simple situation into a big deal. In past situations, I've had restaurant managers say, "no, they're only up the stairs" and sometimes I don't have the energy to argue. Some days I do and explain that I can't walk up stairs, and I've had to get the friend I'm dining with to support me. It's so horrible to be in a situation like that and getting the reluctant look from restaurant managers when they finally hand over the key. I can't wait for the sign, 'not every disability is visible' nailed on most accessible toilets. 

These fears don't just stick with going to the toilet, but when I park in a disability bay. When I am not up for any confrontation, due to feeling so unwell on the inside, I now sit and wait in my car. I wait until there aren't many people around me and then I get out sheepishly and sometimes pretend I'm texting, so I don't lock eyes with anyone, even though I know I deserve my badge!

I feel, I really shouldn't have to be made to feel this way! It's a shame that it has come to this, but what else can I do when I feel so ill inside but look so well on the outside. As many people with invisible illnesses know, it's very difficult to live a normal life at times.



Living with Pulmonary Hypertension isn’t easy! One day I can be visible and another day I can be invisible! The chronic pain, the migraines, the fatigue and severe breathlessness makes everyday life difficult. Despite having PH I am all of the words around me! I may have PH, but I won’t let it define me! I am foremost a wife, a daughter and a fur Mummy! I am a PHighter and always will be until I have my double lung transplant or a CURE is found! PH lives with me, not the other way round!!

PHighters

Hello Readers,

It's been a bit of a difficult time both healthwise and in the PH world, but there's also been good times!

My legs have been on one lately and I've been struggling with the pain. Goodness it's been unbearable and I've been hobbling due to not being able to put pressure on my legs. I've got 2 weeks until I will try a new med that will hopefully tackle this problem. I've got a lot of hopes for this, so keeping everything crossed it will work! I will trial any drug that will help me and hopefully other PH'ers in my situation!



On Monday we were told that we had lost one of our PHriends. Rebecca was 28 and a lovely, lovely girl. Even though we met a few months ago, we instantly clicked and we chatted nearly every day. Sadly she became very poorly and gained her wings. I will miss talking to her, but her hope, strength and love for life will be remembered by all that knew her. In Rebecca's memory, her family are raising money for the PHA UK, please click here to donate. 



It never gets easier when we lose someone in our PH community, no matter what age they were, it will always rock all of us. However we have our community where we will support each other in this sad time. 💜

Despite my pain, I was determined that I was going to have a great weekend with my Twinnie. It had been booked for such a long time and nothing was going to stop me enjoying myself! 

Terry and I had a great time when Tina and Kev came down to Essex. I can't believe it was a year ago, we went to their hometown. Time flies!! We really enjoyed ourselves and we made lots of lovely memories. On the Saturday, the men went off to play golf together and Tina and I had a good ol' catch up and she met my Mum. 

Now, Tina was with us a year ago when we met our Izzy, so that was the last time they had both seen her - Yes, as an 8 week old puppy!! It was great for them to see Izzy all grown up now and she loved seeing them both and reallllllly loved her new hamburger toy!! 



The following day, we all went to play more golf... this time crazy golf! A very golf-orientated weekend!!!! 🏌 It was a great laugh and we played couple vs couple. Sadly Terry and I lost, haha, but I was the only one who got a hole-in-one!! (had to get that in, didn't I?! 😂😂) 

Overall a super weekend with Tina and Kev and we can't wait to see them again! The next time probably at the PHA UK conference. 

Our weekend together shows that despite having Pulmonary Hypertension and the negativity that comes with it, we will meet people who will become friends for life. These friendships are very special as having someone there to talk to, who does understand PH and knows what you're going through, is a comforting feeling. I am very thankful for my friendship with Tina. Her support and friendship has been invaluable and I know she will always be there for me, as I am for her. 

Together, the PH community will continue to raise awareness for this condition and continue to live life to the full!


"PH lives with us, not the other way round"