NZPAH Trust and Support Group

Supporting, educating and promoting awareness of PAH

Memorial

 

Nicola Farland (nee McHugh) was the founder of the NZPAH website and support group. This is her story………as written by Husband Tim:

Life was all I had hoped for and was going well. I had just gotten married and bought my first house with my new husband, I had a challenging and exciting job as a high-school physical education teacher and was planning children in the near future…
But then I started to feel breathless, tired and dizzy. This continued to get worse over a period of a few months. I thought I was just a bit unfit at first but then I decided I needed a consultation. I went twice to two different GPs (not mine) and was told it was asthma and even panic attacks!

I ended up in hospital the day after my 30th birthday. I spent several weeks there and was diagnosed with Pulmonary Arterial Hypertension (PAH). This was a huge shock - I had never even heard of this disease and I couldn’t believe it could not be cured. I was still worrying about missing work; little did I know that would be the least of my concerns. I had no real idea how this diagnosis would change my life and that of those around me forever. The doctors told me that my life expectancy was not great. 
I’m now 34 and since that time I have spent many weeks in hospital, cried many tears, and had to re think not just my lifestyle but my actual life.
I tried for a couple of years to keep teaching any way I could. Eventually I had to accept that it was not going to work. This was a difficult decision to make and accept.

Two years on and I feel I have finally learnt to live with this. I do some volunteer work when I feel able to and have kept myself busy starting a support group for PAH in New Zealand.
Being an active person all my life, I have found my new lifestyle difficult to accept. I have, however, developed some hobbies that I would never have been interested in before, such as mosaics and gardening. I find them really enjoyable.


While PAH has been a challenging and devastating illness, it has made me aware of what is important in life. I have an amazing husband, parents, sister and extended family, whose lives have been changed forever but still they continue to love, help and support me. The friends that I have are truly supportive and wonderful people.
 My respiratory medical team and GP have been fantastic and continue to do all they can to give me the best quality of life possible. I take a fair amount of oral medication, am on oxygen 24/7 and take a nebuliser every three hours.

One of my worst lows came a year ago when I needed an atrial septostomy because I was having problems with fluid retention and had to frequently go to hospital. Life was looking pretty grim. However, things have improved since then.
Four years after my diagnosis I am feeling positive about my future and can even say that while some days are tough I genuinely feel happy.
I agree with Michael J. Fox when he writes: For everything PAH has taken, “something with greater value has been given – sometimes just a marker that points me in a new direction that I might not otherwise have travelled. So sure, it may be one step forward and two steps back, but after a time with this disease, I’ve learnt that what is important is making that one step count.”

My beautiful courageous wife passed away with family by her side on the 27th of September 2011 bringing to a close her battle with PAH almost 6 years to the day since she was diagnosed. 6 years was a lot longer than we ever believed we would have together and I speak on behalf of the family in saying that we were all so blessed to have this time with this inspirational, amazing woman which I am so proud to say was my wife. She will leave a big gap in our lives, imprints on our hearts that are firmly etched on us all.

Since writing her story in 2009 Nic’s life continued on in a fairly stable condition. Our life whilst very difficult was a life that we both adjusted too and took enjoyment in doing simple things like going out to dinner, buying things for the house and Nic instructing me on what to do in the garden!. Nic loved having her nieces Anna and Ruby visit during the day and built a bond with them that I believe she will always be part of their life in some way.

Nic was blessed with having a very close family and we both enjoyed spending many evenings and lunches together, celebrating the special times. It was nice to know that a helping hand, love and support was just around the corner. In mid 2010 we bought a mobility scooter which opened up a whole new world for Nic, I was still working full time and so coming into summer Nic was able to scooter into Howick during the day for a catch up with her Mum (Chris) Sister (Kate), Nieces (Anna & Ruby) or friends during the week and in the weekend and some evenings we enjoyed some lovely walks with our dog Mac. My most memorable walk with Nic and Mac was going along the path at Farm Cove, which winds itself along the coast. Nic loved being close to the sea so this was ideal and very special. I remember fondly also going round the Panmure basin with her Mum, Dad, Kate and Anna and with my Mum around Cornwall park.

In March 2011 our world came crashing down around us again. Nic was in hospital with an infection caused by a blocked saliva gland which was associated with another complication (Sjogren’s syndrome). This in itself was fairly minor but her heart didn’t think so and just when we were talking about when she could go home her heart rate dropped suddenly and she was taken to ICU. She was administered with a drug which helped her heart get over the strain and after a month in hospital was able to come home. This was a big wake up call for us all and reinforced the fact that her health was so fragile.

Nic now needed fulltime care as even little things like getting a drink or making breakfast was too much. I resigned from my fulltime position and continued to work part time and on my days at work Nic’s Mum Chris would look after her, assisted by her Dad, Peter who would be there every day lighting the fire and keeping her company. Looking back I am so glad I did this at it was a very special time and we were able to have this time together and created some lovely memories.

On the 21st of May 2011 Nic and I renewed our wedding vows at a ceremony held by Father Ezio at the Sancta Maria School Chapel where Nic was the first Head of Physical Education. This was followed by an afternoon tea at Duders in Devonport, the same place where we had our wedding reception in January 2005 which made it extra special. We were blessed to have so many family and friends join us on this day and it was a day that we both were so glad was possible. Nic by this time was really struggling, getting through the day took all her strength and courage but she was so determined she made it through. Afterwards in the evening I’ll always remember her saying how tired she was and it wasn’t just in the literal sense. Looking back I think she knew in her heart that she didn’t have long.

It broke my heart watching her through these last few months and something told me too that every day now was precious. Nic fought till the end and I am so thankful that she passed away without pain or prolonged suffering.

There were so many people that helped Nic during her illness and on behalf of Nic\'s immediate family Chris, Peter, Kate, Mark, Anna and Ruby I’d like to thank you all so very much for your emotional and financial support.

To Nic, you were an inspiration to so many, so sick yet you were able to continue to live with such a positive attitude and help others with PH through your founding of the NZPAH website and support meetings. You were brave beyond compare and had to endure so much throughout your illness with various medications, treatments and lengthy hospital stays. You are a true hero and I, your family and friends love you dearly, your memory will live on always……..


Philippa's Story

Philippa passed away in January 2016, very soon after being placed in full time medical care.  This is her story:

"In the summer of 2007 I noticed that I was starting to develop chest pain, I thought this was not normal for a 22 year old.  My parents were away at the time, so that evening of the first occasion of severe chest pain, I went to Ed. I had already been to see the G.P. Several times complaining that I could not get a full intake of air and being told that I had mild asthma. At Ed I had a chest x ray, blood test and an ECG they said all was fine and sent me home at 2 am.

Three days later I got a call from my G.P. saying he wanted to talk to me about my chest x ray because i had an enlarged heart. The G.P.Then said I might have mitral valve incompetence and he would book me in for an echo cardiogram. Meanwhile my parents went to Hamilton for a family birthday and meet up with a medical relative who told mum and dad to book it privately and to not wait around. When they came home they booked me in for an echo cardiogram.  The next day while I was at work mum got a call from the G. P. saying that I had pulmonary hypertension.

I was seen by a cardiologist that afternoon and was admitted to coronary care unit that evening, to further investigate and to consult with Auckland because I also had liver disease and sleep apnoea. I started on sildenafil straight away. There was talk that I would need one or more organ transplant. A few weeks later they started me on Iloprost which I had to inhale 5 times a day. I went to Auckland and the outcome was that a liver transplant would stop the progression on my PAH. Six months later I received a liver transplant and things were touch and go for the first week but over the three months to a year I got better. However my PAH did not stabilise. I stopped the Iloprost and started on Bosentan as my body reacted badly to the Iloprost.

My PAH is still up and down today I am on Sildenafil and Bosentan and try to stay as fit as I can. 18 months ago I went to visit my sister in London and travel Europe. I hope to go to the PH conference in 2012."


Jill's Story

Jill passed away in 2017. This is her story:

"I was 64 and experiencing extreme breathlessness. My doctor said, lose weight, and said it was my asthma. One of the nurses was talking about me to one of the other doctors. This doctor said she would check me out.  She listened to my heart and told me that one of my heart valves was leaking slightly and referred me on to a specialist at the Super Clinic.  It was all free, and after a heart scan, I was told I had Pulmonary Hypertension.

I was referred to Greenlane Respiratory Clinic. They were very helpful and I didn’t feel so alone with my condition. At present I go every three months for my six minute walk and checkup.  I am taking two expensive pills to help me. I do not have to pay for them.

The Support Group is a great help as it is a rare disease and the people who go, help one another.  I want to make the most of my life I have left."

 


Memorial for Sandra Edmonson

It is with a heavy heart, I put these words together........

Sandra was diagnosed with Pulmonary Arterial Hypertension (PAH) in September 2009 after being quite unwell for almost two years but it was her determination to push ahead to a point where something professionally had to be done.

After being in and out of Middlemore Hospital for a continuation of a respiratory problem, the Registrar and his many young Doctors in training visited her bedside one day and the Registrar was reading her notes, saying, we can’t quite get a handle of this repeated respiratory problem with this patient – when one young doctor within the group stated ‘have you considered PH?’ The reply to this was “No I haven’t, but it is certainly worth a try”

The Register spoke to the Nurse and a visit was organised to the Greenlane Hospital, the result being Sandra was put through a series of tests including a Right Heart Catheter and thereby diagnosed with PAH.

An array of medication was prescribed by Dr Ken Whyte. One was being, Sildenafil thereby introducing us to the Special Authority process etc but also introducing us to a bunch of wonderful PH patients at a Support Group meeting being led by a very sick young lady called Nicola in a room on the 1st floor of the old Greenlane Hospital. (Since demolished) It was a bit scary at first, seeing people on Oxygen but the information they were talking about was very interesting as we knew absolutely nothing about this disease Sandra was diagnosed with.

Both Sandra and I became enrolled online Members of PH America, Europe and England to learn about this incurable Chronic Disease.  This was a great help but at times also confusing in various areas. With the help of Nicola, we produced a submission to the Charities Commission to become a Registered Charity. New Zealand Pulmonary Arterial Hypertension (NZPAH) becoming a reality on 13th January 2011.

A website was developed (www.nzpah.org.nz) soon after to spread the information we received from overseas and helpful hints from the local NZPAH Support Group.

A visit to the PHA’s International PH Conference and Scientific Sessions 2014 in Indianapolis USA was unbelievable to say the least. Over 1900 people from all around the world attending a variety of sessions over three days concluding with a serious ‘Leadership Conference’ on the final day.

A lot of water has gone under the bridge since those days. We have learnt a lot over the years and we travelled extensively meeting so many people affected with PH, their families and friends. Everyone is a SPECIAL person in this situation. The stories PH people have spoken about have been real treasures that we continue to talk about today. Some have even written their story of their journey, subsequently these have been published on the NZPAH website.

Sandra was a real treasure, alert, inspirational not only to me but also to her family, friends and especially those involved with PH, Scleroderma and a heap of others with Chronic Diseases. She generated so many friends at the Pukekohe ‘Better Breathing’ programme. This course was only a six week course, one day per week for 90 minutes duration. All programmes were individually designed by a registered Physiotherapist to suit the patient’s condition with the exception of Sandra Edmondson. She was STILL attending 7 years later. She enjoyed the programme, the DHB staff running it and ALL the patients who went through the system. She did her thing there, having the unique ability to encourage participants to enjoy their time there. Plus, telephoning them, in a conversation that left very little non communication understanding if/why they failed to turn up to the programme. There were days when she was not the best but it didn’t stop her attending. One of the nurses would take her vitals and she was made to ‘sit out’ the programme under her watchful eye.

Sandra was a telephone person, making many calls a day, checking up on various people who were not feeling all that good or introducing a newly diagnosed patient to the support they could receive at the next Support Group meeting. If a particular person was not talking with a very strong voice, she would suggest to me, we could go for a drive to visit so and so, picking up something to take with us for a cuppa and a face to face chat. This happened so many times and on some occasions, we would stay overnight in a motel nearby the patient’s location.

When you had a conversation with Sandra, there was ‘no way’ you could not miss-interrupt the point she was trying to drive home. She had this unique way of delivering the context of her speech/chat to you. It was simple and to the point. You could say at times – quite blunt but in a nice way.

Sandra was a strong but gentle inspirational person to the many people she met. Most of them sick with a chronic disease of some sort. There was never any negativity within her discussions. People, who were down with pity or in a depressed state for themselves ended up with a smile on their face, lightning up, becoming enthused, empowered, motivated, happy and prepared to kick on with life after their chat with the smallest person in the room.

Conversely, Sandra had a sympathetic ear with a large caring heart, allowing a person to chat on with whatever was bothering him/her at the time but in no time, Sandra would have that person smiling. It was so pleasing and powerful to watch - time and time again.

I, along with many others will miss you Sandra who had the mind power of a giant, the touch of an angel, the understanding and compassion of a Mistress covering ALL fields but still remained the shortest person in the room.

We will miss you dearly Sandra. Your input to the quality of life for the masses over the years has been huge, unmistakeable and will never be forgotten.

Your loving Husband - Allan

 

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