David Bowie Tribute Gig

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Thanks to John Steele and all involved for organising this years David Bowie Tribute Gig as a fundraising gig for both myself and Zondra Meaney (She is also from Limerick and also has Dysautonomia, EDS, and many serious secondary conditions) with all proceeds going towards each of our respectful Medical Funds.

It is on Friday the 10th of February in Dolans Wearhouse Limerick. Tickets are only €10 and can be purchased HERE, Last year this Bowie Gig sold out fast so be sure to get your Tickets early!

It has an excellent line up of local talent including: Falldogs, Shardbourne, Eammon Hehir, Parliament Square, Theme Tune Boy, Siobhan O’Brien, Ronan Mitchell (Foxjaw) The Alvin Purple Experience and The Brad Pitt Light Orchestra, to name just a few!

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To raise extra funds there are also beautiful posters designed by Ken Coleman especially for this night, They are size A3 on a matt card finish at a price of €20 each, there are only 50 made and a lot of them have been taken already so to be in with a chance to get yours put your name down HERE asap.

If you cant make the night but would perhaps like to find out more or donate to the funds separately you can do so at the links below:

Lette Moloney’s Go Fund Me

Zondra Meaney’s Go Fund Me

Alternatively, sharing this blog post to your friends would be hugely appreciated.

Thank you all and again to all involved,

Lette 🙂

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Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

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We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.
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After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

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Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

A Year Today!

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Can you believe it is a year today since I took my first trip over to London to meet with Prof. Rodney Grahame at the Hospital of St. John and St. Elizabeth?

While I was there, I had some tests and I received a confirmed diagnosis of EDS (Ehlers Danlos Syndrome) Hypermobility type with Gastro issues. You can read the full blog post I did about that experience Here.

The diagnosis and treatment plan I got there proved invaluable to me here in Ireland to help my Doctors treat me and even still, I am still waiting for my Harolds Cross appointment to help me get back walking!

I was due to go back over to London for further tests and much needed treatment but I have been too unwell and practically housbound when I am not in hospital over the past year to plan anything. I have been admitted to hospital 5 times since my visit over and I also have been diagnosed with Gastroparesis in that time.

However, things are getting worse especially in the Gastroparesis area of things and I still need to get back for the treatment as soon as I am well enough to travel and make plans.

The Medical fund is always open if anyone would still like to contribute or even just to share the link, I would greatly appreciate it, because without it, it would be impossible for me to pursue the correct course of treatment as there are no EDS specialists anywhere in Ireland and traveling abroad is not fully supported at all under the HSE travel abroad scheme.

I would just like to take this opportunity to say Thank you to everyone who has helped so far, to my family and friends and especially my amazing husband Keith. You have all been so supportive and helpful and I couldn’t have done it without you 🙂

Thank you,
Fainting Goat (Lette)

Lette’s Medical Treatment Fund

Hey all, I have decided to bite the bullet and go for treatment abroad in London, there is just no way I am getting all the care I need here in Ireland. If you can spare anything, even just a few minutes to share this link, I would greatly appreciate it, Please click on the image below to donate or find out more. Thank you ❤

At the age of 28, Lette was diagnosed with POTS and NCS (with Respiratory Arrest). In the past 3 years she was also diagnosed with EDS, and a Seizure Disorder.

In 2013 Lette’s hips failed. She now uses a wheelchair. In May 2014 after a syncope and respiratory arrest, where she needed rescue-breathing for 17 minutes, she started to experience recurring seizures. The health system’s slow pace means Lette must wait months to begin investigations to rule out a brain adenoma.

We decided to ask for your help because, over the past 3 years Lette’s health has deteriorated. These conditions are very rare, and treatment is complicated by a lack of understanding by healthcare professionals. Specialist treatment is simply unavailable in Ireland.

Your assistance will allow Lette to travel for initial, and follow-up sessions with 3 specialist consultants in London. It will provide for diagnostic and clinical examinations, treatments, scans, and associated expenses to discover a course of treatment for her condition, allow her to promptly rule out any high-risk complications, and most importantly to hopefully improve her quality of life.

We deeply appreciate any contribution that you can make, or awareness you can spread, to help Lette get access to the treatment that she needs.

Thank you.

 

 

Featured in The Cork Independent This Week

You may find the full article here, but I will copy pasta the article for you to read anyhow.
A massive thank you to Yvonne Evans for doing the interview with both Deirdre O’Grady and myself. Much appreciated 🙂

Pots and pain

May is Ehlers Danlos Syndrome (EDS) awareness month. Most people who have heard of the condition, and there are a few, see EDS as a condition whereby the skin is stretchy and joints tend to dislocate easily. However, there is more to EDS then these symptoms. Many patients with EDS suffer from Postural Orthostatic Tachycardia Syndrome (POTS). This condition is one of the most difficult sub-conditions to manage and with no specialists in Ireland, many people go undiagnosed. Although POTS is associated with EDS, many people suffer from the condition separately. Yvonne Evans spoke to two women this week about POTS, the effects and how difficult it is to get adequate treatment in Ireland.
imagePOTS is a form of dysautonomia. The autonomic system is responsible for a host of bodily functions that we do not have to think about, such as sweating, breathing, digestive function, blood pressure and heart rate. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more, or over 120 bpm, within the first 10 minutes of standing. POTS is often diagnosed using a tilt table test (TTT). Symptoms of the condition include dizziness, fatigue, fainting , difficulty exercising and palpitations, to name but a few.31 year old Lette Moloney was diagnosed with POTS in 2011 after 14 years of recurring symptoms including syncope (fainting). After collapsing at home and not regaining consciousness, she was admitted to hospital for one month. A TTT confirmed that Lette had the syndrome and was advised to increase her salt intake and exercise more.

Lette currently takes 18 pills a day and even still, she continues to faint. At the time of this interview, she is on day 10 of her latest hospital visit after suffering seizures which are also associated with POTS. She has yet to receive any tests to find out why she has started having seizures.

“I have a good team of medical professionals now, but I had to find them myself. There are no specialists in Ireland that I can find,” she said.

“The cocktails of drugs had been working. Last year I saw a big improvement in my health and I was feeling well enough to look for work. I then landed a job and it was perfect. I could work from home. But then my POTS started acting up again. I would have to put people on hold and be sick,” says Lette.

Last summer after an 11 day hospital visit, Lette’s consultant recommended that the 31 year old should stop working altogether.

Deirdre O’Grady from Macroom is the mother of two children, Kerri (14) and Aaron (8). Both of her children suffer greatly from POTS and are often hospitalised much to their mother’s frustration.

“I have been often told by doctors that fainting and low blood pressure are normal for children.Two years ago Aaron was diagnosed with EDS and POTS by Professor Grahame in London. I knew when he started walking that there was something wrong but no one listened. We have to travel to the UK to access treatment, the next trip will cost us around €2,000,” says the mother of two.

14 year old Kerri who is sitting her Junior Cert exams this year, often passes out and has been seen by four different hospitals here in Ireland.

“On a trip to Canada, Kerri began complaining about headaches and feeling nauseous. That never went away and after Aaron being diagnosed, I knew in my heart it was EDS and POTS too. She passes out very often, one day she didn’t regain consciousness so she was brought to hospital via ambulance,” explains Deirdre.

Both Lette and Deirdre have expressed their disappointment with the Irish health system. The treatment abroad scheme is available here in Ireland if patients can not access treatment in Ireland. However very few patients are granted the scheme and often spend thousands on each each visit to the UK. Lette has started an online Facebook support group for those who suffer from POTS and other forms of dysautonomia.

Lette is now confined to a wheelchair and Deirdre’s son often needs a wheelchair too.

“It is an invisible illness but it is there, there needs to be a better understanding of both conditions here in Ireland. Kerri’s school have been very accommodating to her condition but I still have to fight for Aaron in school,” says Deirdre.

For more information about POTS, see ‘Irish Dysautonomia Awareness’ on Facebook. Lette also writes a blog about life with POTS and EDS. See irishdysautonomia.wordpress.com.