Please rise you hand if you have any idea what PEG feeding is…..
Because I had no idea! But I’ve come up with a new idea, when someone in your family gets diagnosed with Huntington’s Disease, someone, anyone should sit you down and tell you what the fuck to expect.
**Warning there will be swearing in this post because I can’t tell if I’m upset or angry**
Let me paint a we picture for you, I’m at our annual conference, being all professional as usual (Yes, you can laugh here) and after a conversation with a few friends and colleagues I decide to ring dads doctor to get some answers to questions. I had questions because the week leading up to this I visited dad in his nursing home and saw that his collar bone was about to burst out of his skin. I spoke to the nurse and expressed my concerns for his weight, she reassured me that they were weighing him weekly and could see that he was losing weight. There were discussions about getting in contact with his Neurologist and a few others. I called the social worker during the week and asked her what was going on, she filled me in and I asked her could she drop me an email with any new developments.
Since dad went into the nursing home, I feel like I know nothing about what is going on with his care and wellbeing. I know he is well looked after, clean and happy but it would be nice to know what the OT or dietician is saying.
There was confusion about his wheel chair also, but we managed to get that sorted out.
Loosing track here, so I called the Dr, who has been dads Dr for years and knows the family. Typical small Northern Ireland where everyone knows everyone, I asked him what was discussed or done on his recent visit to dad.
He explains that dad has lost 20kg of weight this year alone, question 1 guys, why the hell was this not red flagged before now?
He said that they made some changes to his diet and how he is getting food (thinker, yummmmy and high calorie drinks) and in two weeks they would review him again.
Question 2 if we can’t get the liquid and food into him how is this going to help?
So here we are waiting for two weeks to see what happens; now this is where the fun begins….
If this little plan doesn’t work, we have to discuss PEG feeding. Who raised their hand to know what that was? Right well aren’t you full of brains I had little to no clue.
Here’s what Google told me…
“Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient’s stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate.”
The wonderful people at the NHS have this to say,
“A PEG tube bypasses the throat and gullet and can therefore be used for people who have difficulty with swallowing or if there is a risk of the food going ‘the wrong way’ into the lungs. PEG feeding will not alter the outcome of your underlying disease or conditions.”
Risks and complications –
Major complication rate of about 3% (pretty rare…but so is HD)
Breathing problems either during or after the procedure
Inflammation/infection in the abdomen
There are minor complications in about 20% of cases and are mostly related to infection around the site of the tube and leakage from the site of the tube. (In other words where they pop that we tube into you, it might get infected or leak)
Just so I don’t get in trouble, there a we link to where I got that info…https://www.uhb.nhs.uk/pdf/PiHavingPegInserted.pdf
I’ll even insert a we picture from our good friends at Cancer Research UK
The good Dr chatted me about PEG feeding and explained it to me, I asked him to be straight with me, if we didn’t PEG feed daddy what would happen and his answer was, with the weight loss dad has at the minute, if that was to continue he would have about 6-12 months, with no calorie intake 3-4 months and with no liquid intake 7-10 days. Now, what’s those figures like?
So, in other words if dad isn’t PEG fed he won’t survive. Honestly I thanked the Dr for being so honest with me.
The problem we face here is dad never told us his last wishes, he didn’t tell us what to do when the end was coming. So we have the pleasure of guessing.
Thankfully it’s out of our hands, well they ask Ryan and I what we think dad would have wanted etc. but ultimately the decision rests with the medical team. They will decide if it is in dads best interest medically to PEG feed him and then they will look at it morally.
Well to save all that hassle if anything ever happens me, weather its HD or not, please don’t PEG feed me. I don’t think I like the idea of it!
Aside from the procedure and complications, because my dad never said what he would want the medical team to have a tough situation on their hands. From talking to the Dr, they will take into account dad’s current situation, whether it will improve his quality of life, if he is strong enough to go through the procedure and other questions which might arise.
I suppose everyone is different, with dads movements will be pulling the tube out? He is already weak, with a weak immune system, will this be an issue?
Here’s why, I sit and look at my daddy and it breaks my heart. He was such a big strong man, working hard and enjoying life. Now he sits on a chair weighing 9 stone, 3 stone less than me! And doesn’t know what’s happening around him, there are days he doesn’t know his own kids.
Yes, there are days he can make noises and interact with me, I do believe he understands what I’m saying and in his own way he talks bac. These days are coming few and far between.
This may be a controversial topic, and I am not afraid to voice my opinion on it, and welcome others to do so.
I don’t think at this stage PEG feeding is the right decision, there are too many risks and one of the questions the DR said they would ask themselves when making the decision was ‘Would it improve his quality of life’ well the answer to that is No.
I know people are probably reading this thinking, but wont that mean you dad will starve. Yes that’s exactly what it means, but my choices are limited here, let him starve or let his body suffer for another ten years!
Anyway, me nor Ryan can make the decision and I will support the doctors in whatever they decide, they went to school for long enough to make this decision. I don’t think my degree in Leisure and Event Management is the same as being a Dr.
So, it has been a hard week, I wish I knew this was coming, I wish someone had said to us when dad was able to talk and make decisions about making these decisions himself. It would be half the battle. But no one prepared us for this.
Being a smart 26 year old (Yes, you can laugh again) this is defiantly something I am going to do, weather I develop HD or not, we never know what might happen. I want to take the pressure off my ole doll aka mummy and make sure she knows my wishes.
Some people don’t like talking about death, or if I die, or even if I am in an accident, but I personally think it is the smart thing to do. Have your wishes noted somewhere and then your loved ones will know what to do when difficult decisions need to be made.
I know not everyone will agree with me saying that I don’t think I want to PEG feed daddy, to be honest I don’t think I want it to happen, but then again, I don’t really know. I feel so confused and for this reason I’m going to leave it up to the Dr!!
Every country is different but let me know if you have experience PEG feeding with you loved one.