Organ Opt Out Donation Scheme - where every person is automatically made an Organ Donor
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Organ Donation Week... The Day I Decided Never To Do What I Was Told... Ever Again... #pulmonaryhypertensionawareness
I went to a routine outpatient appointment on a Monday a couple weeks ago in St Vincent's Hospital in Dublin to see my Respiratory team... I was sure it would be simple enough a quick chat see how things were and I'd be home again in no time. "Anything changed since the last time we've seen you Claire?" "No, not really, just been having anxiety attacks out of nowhere, I feel fine and then all of a sudden my heart starts racing and I feel all panicky but I wouldn't have been thinking about anything for it to happen." "Ok can you explain what these attacks feel like and how often they're occurring?" "They don't happen every day really, the odd time I've had two or three in a day, sometimes I can get weeks apart without anything happening. If I run they seem to happen. If I walk up the stairs too fast. If I bend over to pick something up. But as I said it's not always every day and sometimes I'm just sitting down watching a movie with the kids and my heart start racing but it doesn't last any longer than a few seconds to a minute and then it's gone so it's not too bad really." "I'm sorry Claire but we need to bring you in straight away, there's a few tests we'd like to run to get to the bottom of this" "It's anxiety, I'm fine." "But it might not be anxiety, we need to be sure"
So annoyed and telling them I needed to arrange childcare for my boys that I couldn't come in straight away, I was told to present myself back for admission at 11am on Wednesday but had to return on Tuesday for outpatients appointment with my surgeon.
Lots of phone calls to health nurse, social workers, school and friends later I made my way to Dublin on Wednesday courtesy of an epic friend. Straight away I was asked to hand over my list of medications of which I had none. Instead I showed them the syringe of cannabis oil that I used in place of my medicine. They were baffled and I got fired lots of questions about the oil but on physical examination and breathing tests they noted a marked improvement and noted I had not been taking pharma for lung disease for 16 months. A heart monitor was slapped on me for telemetry to monitor from downstairs and then I was told that it wasn't possible to take the oil in the hospital and that I needed to take my prescribed drugs. I argued and explained my vomiting was not managed on the pharma. To prove the point I ceased the oils and allowed the nurse to administer one of the four anti-nausea drugs as I had been throwing up into a bowl beside my bed for a good half hour with the careers changing the bowl every ten minutes. My stomach was empty but my body kept trying to wretch and vomit. 15 seconds or so after administration of the IV drug my arm was red raw, swollen, my heart was racging and I was soaked in sweat and the dry wretching became worse with blood starting to come up as my stomach lining was tearing.
The phone rang and the nurse ran out, it was telemetry telling her my heart was going erratic on the monitor and she needed to check on me, she ran back in and slapped the blood pressure monitor on me. Oxygen 98, Heart Rate 155 at rest and blood pressure 153/115 it was too high. My heart seemed to be going so fast i thought it would just stop. The phone rang again, it was telemetry for he nurse to tell her my heart was off the charts and she needed to get an ECG done and take bloods for troponin levels as they thought I was going or in caridac arrest. The monitor was put on again and the heart was 172 BPM. At this stage the pain in my chest my bad. It wasn't there before but now it felt like someone was standing on my heart my head was splitting worse than any migraine I ever had, I had to close my eyes the light was piercing. They made me lie flat on the bed while telemetry rang again to say the levels were unsafe. Finally the doctor arrived and I was given something to counteract the medicine and all levelled out after a few minutes. I felt fine again but asked not to be given the medicine again. I was assured that it normally doesn't cause reactions like this but they could see clearly what had happened... but they couldn't understand why.
I finally got my answer after batteries of tests... the consultant arrived at the bed, team in tow. "Hi Claire, how're you feeling?" "Like I really want to go home" "I hear ya, but unfortunately a few things have pinged up this time and it's important we have a chat about them." "Ok, take a seat"
He sat next to me sand paused for a moment as if he was thinking what to at next. My stomach began to churn with nerves. "Ok, he said, firstly we've found a liiiiitle defect in your heart, you would've been born with it but it went undetected, it's a tiny hole but don't worry, that can be closed" feeling relief flooding through me I thought that's not so bad! Then came the "BUT..." "We've noted through our various investigations that the pressure in your blood from your artery goi from your heart to your remaining lung is elevated." "What does that mean? Is not all blood pressure the same around our bodies? Can I not sort that through diet I eat healthy anyway so maybe I should exercise more...?" They all began to share looks between each other and I began to feel a mixture of nervous and angry. "So what can I do to fix it?!" "You can't Claire, we have two blood pressures one that we can measure through the blood pressure monitor on the arm and a second pressure that feeds blood from your heart to your lung. Normal pressures are below 25 in a healthy person, to go above that is an elevation and it means that the pressure is too high putting your heart under pressure" "I don't understand, can this not be fixed?" "Claire your pressure is registering as 40. This is extremely dangerous in your case as you've only one lung. It's called pulmonary hypertension. There are 4 stages on this, you are in the second stage of it. It will eventually mean that the blood will find it harder to be pumped through the artery, this means it will back up in our heart causing enlargement leading to heart failure." "Ok..."I said feeling ill, "I don't want to know all the details I want to know what my life expectancy is with this..." silence...
"I want to know..." part of me wanted to and part of me didn't. And with that I got a look of pure empathy from my doctors and a gentle touch on the shoulder and told "five years expectancy would be typical of this."
I vomited everywhere. I started shaking violently. I got so angry I asked them to "stop fucking talking I can't listen to this I can't take in anything else I need you to leave" I got offered valium, diazepam something to relax me and I got more angry, I don't want your damn medicine just leave me alone!" I didn't hear anything after that, everyone was talking and all I could think about were my children... I asked them again to leave and they did. I cried and cried O much until I heaved with sobs, I literally didn't know how to process this new information or who to even begin to talk to it about. So I turned to my friend Anne, who was in the bed next to me, stage 4 lung cancer cancer and tough as a nut. "Fuck them" she said "they don't know you and what you're capable of! I felt the same when they told me I had cancer, I didn't hear anything after that, and believe me when I say I cried I roared. But you know what, you're a fighter and you'll have your cry and you'll dust yourself off and you'll prove them wrong, because you've got that in you. Look at the state of you last night after the medicine and all the panicking they were doing and you were there cool as a cucumber with "my chest is sore now" like it was a cut knee, she said you've very little fear girl, channel that into this now and god yeah, they've said five years, but I said twenty." We spoke for a couple of hours about everything in our life p, our illnesses and our fears for our loved ones left behind, the burdens we felt we were and what we hoped for and what we didn't want to experience. For those few hours I felt like I could truly talk to someone who understood and didn't care about me talking about it because she needed the same. And as tough as we both pretended to be, we let the masks slip for that time and I'll be forever grateful to this fabulous lady for that. And her amazing daughter... Which reminds me I must give her a ring this evening to check in!
I returned to me bed and did the worst thing you can do... I googled it. Doctors weren't lying! Life expectancy is short, no cure, progressive disease, symptoms, worsening of symptoms... and then I stopped, rang my bell and when the nurse came in asked to speak to my team. Two of them were up shortly after. I firmed every question I wanted answered at them. I gained all the knowledge I could from their understanding of this illness. We discussed medications that help slow it down but cannot cure it. We discussed the possibility of nutrition being able to manage it but most importantly I wanted to know if now I would get a transplant in the future. I was told that I don't need it right now but I will in the future. How soon a year or three or five they didn't know. Then they explained because I was born missing a right pulmonary artery they were unsure if they could connect a second lung. What I would eventually need is a double lung and heart. I am still waiting on an answer as to whether of not I can get that. Vincent's think it may not be a possibility but they have also said that part of my care needs to be transferred now to the Mater Hospital as they have a specialised unit there. Once I see the doctors there I should get the answer to the transplant question.... until then, I just have to remain positive. After speaking with my team and discovering why PH can develop I began researching again. I came across an interesting Stanford University study where they managed to completely reverse pulmonary hypertension in rats in the later stages. This hasn't yet moved onto humans. But it came down to replacing the unhealthy cells in the rats pulmonary artery with healthy cells from a rat that wasn't ill. Within 24 PH effects were halved and within 72 completely reversed. So who knows maybe I'll be as lucky as those rats someday!
But it was that day I decided that what I've been told, is a guideline, I'm on a quest to fix myself, so far I have discovered nitrates are key in this so lots of leafy greens and plant base. I've to be monitored every 6-8 weeks for pressure levels for the time being so I'm hoping that one day they'll discover they've miraculously declined in pressure to the normal range... until then I will have to take medications and use my oxygen as required. My quality of life isn't fabulous but I'm luckier than most.
The day I was handed a death sentence was the day I decided to abandon ship for a more positive route. I'll leave no stone unturned in my mystical magical adventure to find a way to cure this. Not just for me but for countless others who ar struggling to balance life with this. I'm adamant I will see my children grow up. So I say five years...?
I call BULLSHIT, I'll see you five and raise you fifteen...
There are so many children and adults in desperate need of new organs. And usually time runs out because a viable organ cannot be sourced in time. Let's ensure that everyone is given a fair chance. I know when I die I want whatever is viable in me to be passed to someone who can benefit.
Please leave a legacy and save lives. Sign up to be an Organ Donor, you've no idea how much joy you can bring to someone else's life. Be a hero this Organ Donor Awareness Week, I'd be forever grateful to be given a second chance when my time comes if I am fit enough to withstand it. I think it's important for everyone to automatically be made a donor at birth, to prevent the massive loss of life we have in Ireland due to those not getting organs in time. This is something that needs to be introduced quickly. I have had friends be called up for 4th and 5th times being told they have a new heart, new lungs to be told when they get there that the organs aren't suitable and to be turned home waiting another year to be called again and let down again. This is unnecessary cruelty and can be prevented. Please before you decide to bury what you can no longer use. Think of all the lives you could save. Be a hero... sign this petition and give everyone in need of transplant a second chance at life!
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