Appeal for the Pulmonary Hypertension Association UK following the untimely death on 9 November 2020 of 

                        Alero Etete Smith

from Idiopathic Pulmonary Arterial Hypertension (IPAH)

Pulmonary Hypertension is more common in women and affects 2 to 4 people in every million each year

A serious and life-shortening medical condition of which there is no cure. Diagnosis is difficult and too much time can be wasted which delays treatment and then limits opportunities for transplant. Alero died awaiting a transplant and was not correctly diagnosed for 4 months

Update 15/12/2020 - I am overwhelmed that the Target of £1,000 has been achieved so quickly through a combination of both Alero's friends and my friends, work colleagues, ex-work colleagues, Alero's family, extraordinarily generous support from Nigeria and even complete strangers, some of whom have lost their own loved ones in similar tragic circumstances

Alero if she had the opportunity she would say - and  I hear this quite clearly....so I will say it for her...

"Thank you! Thank you! Thank you!"

It is so important to get additional funding for this worthy cause so please do not hesitate to still donate, I would feel a bit underhand to change the Target showing. I did not cater for the generosity of people most I have known for over 25 years and some I have never even met

Clive Smith (Husband)

Please continue to read, God Bless You.......

I hope that you can take time to read below, my late wife Alero and I were aspiring writers... she had more style (not just with writing - see the photos!) Alero liked to write short stories whereas when you read my words below you will conclude in my case Alero's husband, why use 100 words when 1,000s are available....

However I have found in my saddest of sad times that a lot of people that know me well are caring, supportive and just simply great

Thank you if you do read all of below this is so important to me, in that I want to highlight the plight of people struggling with and dying from the symptoms of Pulmonary Hypertension. This condition seems to have gone under the radar and it is about time this is corrected.

I believe it is possible to find the root cause and prevent and or cure Pulmonary Hypertension. If this is done, the positive change in the lives of those suffering will be enormous as well as their loved ones. This would then release funding on research and the NHS to concentrate on other conditions. Specialist units and the treatment of Pulmonary Hypertension are very expensive and burden on the NHS. We were told the cost to the NHS per year of the drug that didn't really work for Alero - this is astronomical.

Warning

If you are easily distressed you may find below a bit raw and lucid, so please do not read I do not want to offend, just donate if you feel like it to PHA UK:

https://www.phauk.org

Twitter @PHA_UK

If you have your own health concerns or similarly if you have a loved one with ill-health, I do not want to add to your own worries

I would like though to honour the beautiful Alero's life so through the brilliant JustGiving website this would be my preferred option via Alero's new page

(Get on with it Clive)

Alero's Story

Alero was diagnosed with Idiopathic Pulmonary Arterial Hypertension in 2018. She felt peculiar one day when at the Bluewater shopping centre and went to A&E. After many tests she was diagnosed by the Royal Free Hospital in London. Alero had a CADD pump to allow Veletri Epoprostenol to be administered directly into her heart, this sadly only worked effectively for two days and her condition gradually worsened throughout 2019. This made us very concerned in addition to both being told she had a 33% chance a year of cardiac arrest. Alero collapsed three times in this period but thankfully swiftly recovered

Pulmonary Hypertension is a condition in which high blood pressure affects arteries of the lungs, and right side of the heart. It is often dangerous and urgent medical attention is recommended

               The condition cannot be cured........               

                             c u r r e n t l y   !!!!!!!!

With Alero's version -  Idiopathic Pulmonary Arterial Hypertension it is worse than this..........

If left untreated, the prognosis of Idiopathic Pulmonary Arterial Hypertension is poor and the disease is often fatal within a few years, emphasizing the need for a quick and accurate diagnosis. The survival of patients with pulmonary hypertension used to be around three to five years, and it could take two or more years to correctly diagnose

This is why we were both in denial in the early months, I wish I was stronger then as the initial gradual deterioration in Alero's health masked what was to come

Alero suffered:

Shortness of breath

Tiredness

A racing heartbeat

Swelling in her legs, ankles and tummy

Sickness and diarrhoea

Loss of appetite 

Pain in her upper arm

Blackouts

These are common symptoms of Pulmonary Hypertension and Alero had all of them I am afraid

Add depression to this and worry, difficulty walking up the stairs and sometimes not being able to get out of bed

However....We were lucky to have a two-week Mediterranean cruise in September 2019 but this was a struggle for Alero however she tried to do as much as possible and loved Barcelona, Florence and Rome in particular

In 2020 throughout the first lockdown Alero got more incapacitated, lost her appetite and more health issues arose especially with her kidney function

Alero signed up to the Lung Transplant scheme at Royal Papworth in Cambridge (subsequently she was told it would have to be the rare Heart and Lungs Transplant) and she spent the last 3 and half months of her life mainly on her own in hospital due to Covid restrictions. This was particularly distressing for me, I love Alero with all my heart and soul and to be not by her side made me anxious, depressed and distraught. What Alero was going through would be worse I fear but she was stoic, strong of will and optimistic until the last week before her untimely death. Her transplant never came for a number of reasons that I do not yet fully understand. On my twitter account I now often ask people to not opt out of the NHS Organ Donor Scheme if I see a tweet about organ donation, yes I am boring and tedious but this is important for other families not to suffer like Alero, I and Alero's son Tobi have

I would like to take this opportunity to thank the PHA consultants at the Royal Free and their immediate PHA team (especially Dr Benjamin Schreiber, Alero's favourite). I also thank the 4th Floor nursing team at Royal Papworth for their unstinting care of Alero and their genuine concern for me. One poor young nurse (Erin) I subjected to floods of tears two nights running for hours I was inconsolable when I knew there was no chance of Alero living. Also Graham if you ever read this you were Alero's favourite - she told me - and having met you and listening to me for ages outside the hospital when you should be going home to your young daughter goes beyond the calling. Little gestures like that don't go forgotten. The young lady that cared for Alero in her final hours was so kind, it can't be an easy job but Graham told me she was one of the best and he was correct.

Valerie, like a lot of your colleagues if anyone deserves praise it is people like you. I won't say how I know Alero is in Heaven but I am so sure and it is due to more than one reason. You eased the way and I just hope I can join her when it is my turn and that Alero will be there to greet me so that we can be reunited. I do have a feeling though I have a lot more to do on this earth. (I have added this note later [16/12/20] and I am now going to go the cemetery again today before it closes). Thank you

I was with Alero for the last 5 days of her life, she was so uncomfortable and I would not wish the way she died on anyone, it was harrowing but she was so so brave, apparently insisting to minimise pain killers. I am sorry if this is upsetting but I feel the need to be honest, open and forthright - I have to do some good here

Alero's faith was strong and she prayed for a successful transplant but sadly she died early evening still waiting for a donor on 9 November 2020

Alero insisted I only visit once a week each Sunday (the Covid-oriented rules for those on a transplant list) but  occasionally as I was so concerned for her I turned up unannounced. She was always angry with me about this, but I wish I had been more of a pain - a totally different subject not to be covered here about hospital visiting rights of relatives. However Alero struggled to eat, I organised her favourite Nigerian food to be delivered from a local restaurant, we had a deliveroo each Sunday but eating for her became more and more of a struggle. Alero's last full meal was a favourite Thai King Prawn dish one Sunday, that gave me false hope that her appetite was returning. Alero lost her voice twice so my routine of ringing her each week day at 8.00 / 14.30 / 18.30 and our loving good nights at 22:30 became impossible. My anxiety peaked stratospherically and I thank also the Kent Mental Health teams and my Doctors from pulling me back from odd spiritual thoughts I had developed through sleep depravation immediately after she died. My poor children and Tobi saw me after Alero died in a place that no one should go or in their case see

Each night Alero and our usually silent (for superstitious reasons) but shared hope would be that the next time we communicated she had come through her transplant operation and we could start to live and plan again after two years of worry and inactivity. Her choice of words and her anxiety she tried to hide, her selfless approach was to minimise the effect on me but all I cared about was her well being

My own guilt would be for Alero to live someone had to die... it feels so selfish. But people do die unexpectedly in tragic circumstances....the will to live is so strong so every effort should be made to keep people alive but sometimes, sometimes there is no hope

But, please give potential hope to others, people you don't know, be selfless like my late wife... do not opt out....

However if you have not opted out of the NHS Organ Donor Scheme*, think about your family as well, Share Your Wishes**  with your family. If it was my or your sudden demise, why not give others the chance to have their lives positively changed? I have seen twitter videos of relatives listening to their loved-ones hearts in someone else, it is (non pun intended of course) heartbreaking but God (sorry Alero) is it uplifting at the same time

*  https://www.organdonation.nhs.uk

  twitter:  @NHSOrganDonor

** https://www.shareyourwishes.co.uk 

   twittter: @share_wishes

Back to Alero, she reluctantly agreed to have a feeding tube but was so uncomfortable

I tried to do everything I could to encourage and reassure Alero and I am now heartbroken. Alero never complained about her condition. She was simply wonderful!

I had 11 fantastic years with the most attractive, kind and selfless woman. Alero was beautiful inside and out. We were husband and wife, partners, best friends and soul mates. I am bereft with grief but comforted that I had over a decade with her, in that respect I have been lucky. Alero said numerous times that "God had sent me to her" and also for the dubious benefit to those who unfortunately know me! she always said that "She got me" - takes some doing this, I know that I am hard work!

Yes Alero, "you got me", and "I got you too", I would do anything for you, I love you so so much. I fell in love on sight the day we met 1 May 2009, at Bluewater of course, her third home after church and our house. When we were dating I used to fall in love with her all over again each time I picked her up. Sorry if you think this is all slushy nonsense given my age now 59, but sharing how I feel helps me with my considerable grieving

I have offered my experiences to PHA UK in 2021 (which they have suggested) in order to see if there can be some positives to be drawn from the above to help others and families who will in the future go through the same dark times as we did. Such as encouraging others that may be signing up to the Transplant Scheme a bit earlier may save more lives - we will see. I also aim though not just through social media to try to raise the awareness of Idiopathic Pulmonary Arterial Hypertension. That is the least I can do to honour Alero's life

Still there?

Donate please!

Thank you for reading all through the above, there is no known cure for Alero's condition but any small additional funding to PHA UK that you make I will be eternally grateful and perhaps this small gesture may be the catalyst that makes the breakthrough for a cure

Alero was just 53 when she died, lets see if together we all can make a small contribution to fund more research into this horrible and aggressive life-shortening condition

I never realised I could love someone as much as I love Alero and it will be impossible to find anyone who will come close but my own 3 children, family and my friends have supported me greatly as I have been an emotional wreck and for their help I am both blessed and extraordinarily grateful

Thank you again for reading (I kept adding and adding more words) and if you can please make a small donation so that Pulmonary Hypertension will end up with a cure

"I Love You Alero"  

Clive 💗


Clive Smith (Alero's Husband) 07/12/2020

twitter:     @CliveSmith3000 (for political garbage, Spurs ramblings but now some more serious stuff - especially anything concerning organ donation as well as trying to be generally but not always nice not forgetting some really poor witticisms from time to time that I only I find funny. However it makes one think, how unimportant an awful lot of things are if you don't have your health or in my case, the love of your life)

RIP Alero, you beautiful, wonderful, stunning and lovely woman, I miss you so so much, I love you so so much but its just au revoir to the the day we meet again

Until we do you will remain in my thoughts and my broken heart every day - Clive

💗

Footnote:

I decided to walk the 15 minutes from the Church to the Cemetery on the day of the funeral (Friday 11/12). As I have said above my humour leaves a little to be desired. But I would like to believe Alero ensured it was raining (which it did as soon as I started walking), she didn't like walking in the rain but it has never bothered me. Well if she did or didn't, I feel she 'Got Me' once again. If it was you Darling, very funny 

💗

As soon as everyone had driven to the Cemetery, a rainbow appeared - not the most spectacular one - but it is December and this swiftly disappeared once the ceremony was over. 

I have an open mind but I have added this to the photos.