Friday, 20 April 2018

Speaking about PH

Dear Readers,

This screenshot says it all...



It is hard to open up about your feelings when you get diagnosed with an incurable condition. Your mind is all over the place and you just don’t know what to do. 

I have been there, I have hit rock bottom, it is very difficult! I had no one to turn to that had PH, at the time I was diagnosed and it can be a very lonely time. Thank goodness for the PHA UK, who put me in touch with other PH’ers and made me realise I wasn’t alone!

I now speak out everyday on Facebook, Twitter or Instagram about PH and I love raising awareness! We are rare, we are serious and I want people to try and understand what us PH’ers go through!


If it’s only a few that engage then great, but I am most proud that people are coming forward to speak to me personally and allowing themselves to open up about this cruel condition and know that I am there to chat for whenever they need someone to turn to who has experienced or experiencing their PH journey. Also being a trained Therapist I feel I can support them better too! I am not trying to be a counsellor or replace them or get paid for this, I am just another person that is there for them if they want someone to chat to. 

I enjoy people sharing their PH stories with me and then sharing mine, as we are all going through the same thing, and it isn't easy. For some of us it is invisible illness and it is hard to cope with. People tell their friends as much as some do try to understand and support you, it's sometimes easier to speak to someone who does know what you are feeling and going through.

So thank you for having the confidence of chatting to me and please anyone who needs someone to talk to about their PH, then I'm another person that will smile and say hello. You can contact me through Twitter DM or Facebook Messenger.

Thanks for reading!

Monday, 16 April 2018

Iron Infusion

Dear Readers,

Firstly, I've updated my blog! You can now follow me on Twitter and on my Facebook page without going elsewhere!! It took me a while to learn how to place these plugins into my blog, but I finally got there!! 😁

Today I've finally had my iron infusion! I was literally limping along until today arrived! I was so low on iron, every bone in my body ached, I was in severe pain not being able to walk and my breathing well, it was ridiculous.

Despite being on the Macitentan again, the low iron wasn't helping me at all. PH'ers tend to get a low iron count and have to get infusions regularly to keep it from falling dramatically. I am lucky to get my infusions done at my local hospital now, instead of trekking all the way to the Brompton and it makes the experience much better for me.

So far, so good with the Macitentan still and fortunately the side effects are minimal this time. Time will tell once the iron kicks in along with the Macitentan, but hopefully I'm fighting fit again and starting to feel good within and about myself!

I will keep you updated!!

Thanks for reading!





Friday, 13 April 2018

What is Eisenmenger Syndrome

Dear Readers,

As you know I have Pulmonary Hypertension, but I also have it with Eisenmenger Syndrome. This is due to my PDA (hole in the heart).

I have found an amazing video which describes what Eisenmengers Syndrome is. This is a 20 minute long video, but it explains the condition and it is explained very well. Eisenmenger Syndrome is a very complicated condition, but I am still determined to live and long and happy life despite it!

Click here for text explanation.

Enjoy the video!



Eisenmenger (I-sun-meng-uhr) syndrome is a complication of a heart defect that you're born with (congenital).

A heart defect that causes a hole (shunt) to develop between two chambers of your heart is the most common cause of Eisenmenger syndrome. This hole causes blood to circulate abnormally in your heart and lungs. Increased blood flow returns to your lungs instead of going to the rest of your body. The blood vessels in your lung arteries become stiff and narrow, increasing the pressure in your lungs' arteries. This permanently damages the blood vessels in your lungs.

Eisenmenger syndrome occurs when the increased pressure of the blood flow in the lung becomes so great that the direction of blood flow through the shunt reverses. Oxygen-poor (blue) blood from the right side of the heart flows into the left ventricle and is pumped to your body so you don't receive enough oxygen to all your organs and tissues.
Eisenmenger syndrome is a life-threatening condition requiring careful medical monitoring. Medications can improve symptoms and prognosis.



Tuesday, 27 March 2018

#NoCureAlwaysHope

Dear Readers,

On Friday my husband and I attended my quarterly clinic at the Royal Brompton Hospital.

I have been feeling very unwell in the last few months, but I am slowly getting better and back on the Macitentan. I had switched to a different drug, but it wasn't for me anymore. Now Macitentan gave me dire side effects of migraines and sickness, but hopefully this time round they won't be as bad and my body will get used to them quicker.

My 6 minute walk test went well and the results hadn't changed, so that's good. Also, my ECHO showed exactly the same without any deterioration, so again good news. Overall my appointment was very positive and I am stable!


On another positive note, I have been reissued my blue badge after failing to get it renewed after my first assessment!

As you know Pulmonary Hypertension can be seen as an invisible illness, where we have good days and bad days. Unfortunately for an assessment, we need to have a "bad day" to show how bad PH does affect our daily lives. When losing something so vital as a blue badge, it feels like we have lost our freedom to go out and about. That is why I will continue to raise awareness and get the condition of Pulmonary Hypertension known to the public.

Pulmonary Hypertension is a degenerative heart and lung condition. People don't understand how serious we actually are! One day I'll have my double lung & heart transplant as that is my only cure. Anyway, I am lucky to have the support from my husband, mum and close friends. They really do build me back up when life goes a bit rubbish! They will always be there for me to make sure I continue living life to the full, despite having this condition!

Please continue to follow my PH journey on my Twitter @maritess_mt, Facebook page Tess and PH or instagram @maritess_mt - or you can find me using #NoCureAlwaysHope

Thanks for reading!

Thursday, 15 March 2018

Article in emPHAsis

Dear Readers,

My 10th PH Anniversary story has been published in the award winning Pulmonary Hypertension magazine, emPHAsis! Thank you to the editors of this magazine for publishing a great looking article!

You can read it on p.22 http://www.phauk.org/content/uploads/2015/12/Emphasis_Spring18.pdf

Or click to enlarge pictures here  ⤸





Editor: Mary Ferguson on 01226 766900 or mary@capitalbmedia.co.uk

Wednesday, 21 February 2018

PHighting on...

Dear Readers,

Sorry I haven't posted recently. I have been rather unwell and haven't been able to concentrate on writing anything.



My previous medication where I had to stay in over night back in November were doing me very well health wise, but side effects wise they were draining me. I was suffering with chronic headaches and migraines and I was starting to suffer more and more each week. Even though my body was taking to them well for the PH, I wasn't going to struggle on any longer.

I stopped taking them at the beginning of January and soon as I came off of them I started to feel a lot better. I managed to get on with plans and work and in the half term, which was last week i was admitted back in the Royal Brompton Hospital to start the new medication.

This medication is known as Iloprost and I have to take it 6 times a day, every 3 hours. I have to inhale the medication for 3-5 minutes and make sure I wash and clean it after each use. All sounds very time consuming but it doesn't really take that long to sort out and it is so worth being on it. So far I am doing much better than Macitentan. I do get dull headaches after each dose, but these go quite quickly. I am sure my body will get used to this drug much quicker and I'll be able to stay on this for a very long time.

I am continuing to stay on Sildenafil 3 times a day, which luckily is only a tablet that I need to swallow and being on this dual therapy, I hope I will become a lot stronger again.

I will post again soon to keep you updated with how I am getting on!

Meanwhile my video I made for my 10th anniversary has been viewed and shared many times, so I am glad I am continuing to raise awareness for Pulmonary Hypertension. Don't forget to keep up to date and check out my Facebook page - Tess and PH - you will also see I try to post every Wednesday for a raising awareness campaign called PH Wednesdays. This is an update on myself, someone else's PH story or anything PH related!

Thanks for reading!

Wednesday, 3 January 2018

10 YEARS AGO....


Dear Readers,


10 years ago my life changed forever!

10 years ago I collapsed with chest pains at college!

10 years ago I was in critical care for months!

10 years ago I was diagnosed with Pulmonary Hypertension!

10 years ago I only had a few months to live….



I decided to fight back! Why?



Because... I am a fighter! I live by life, not my condition! I WILL live life to the full!

#nocurealwayshope  #BreathlessNotVoiceless  #Livingwith PH 


Here is my PH story..…