Introduction My brother’s fight with Cholangiocarcinoma
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Hi, Gavin , been a while , going to Edinburgh tomorrow for a sort of second opinion, see if there if there is anything else they can do ! Spent week in hospital over Easter, bilirubin sky high at 300 to 400. Coming down now , one of stents had actually moved out of position and wasn’t serving any purpose ,up against bowel wall but didn’t cause any problems I believe there could be an alternative , perhaps a drainage bag , something I was never really keen on but if it brings down my bilirubin so that if the tumor grows or spreads it can be treated with therapy . That’s a year now and still battling this horrible thing , thanks to support of my magnificent family and sites like yours . I’ll be in touch Donnie P S With the yellow tinge people think I’ve been on some exotic holiday
I like the word berserk too Lainy and it best sums things up sometimes. Sometimes we all need to go berserk to get things done and moving!
Patients here can get admitted direct to hospital if they go to A&E and the A&E team think they need treatment urgently etc. When my ulcer burst on holiday I went to A&E and was admitted there and then without them contacting my gp. Mum’s been taken into hosp many times via A&E with everything she has had too.
I guess in Donnies case the A&E team don’t think a CT is urgent in their eyes hence they want to get him referred for a CT by the GP or someone else. Major GRRR all round to this situation!
Stay strong Donnie and Lorraine, we’we with you on this!
Gavin
Thanks, Gavin for that. I do like your beserk word! Hard to find words to fit the situation. See, here we can go to an ER and if they feel we should be admitted to the hospital, they call our Primary or ONC and get us admitted. I have done it and it worked. It just has to be a hospital under the Insurance plan.
Edinburgh will have an A&E Lainy and if any patient turns up there needing urgent treatment then they would have to treat them just like they would any patient, but they may not be keen on admitting someone for a CT. They might want to know why that patient did not just go to their local A&E in Glasgow if they felt they needed urgent treatment.
It is an option Lorraine but I feel it is risky as they could turn Donnie away giving the reasons I mentioned above. But good thinking Lainy, I love that!!
Frustration all round though with this situation to say the least and the berserk card may need to come out!
Gavin
Gavin and Lorraine….just thinking here, might be a bad sign….
Does the Edinburgh have an ER department? I would think so. What would happen if Lorraine took her brother to the ER there and then they might admit him? Well, I guess a referral is still needed. Frustration, frustration!!
I would definitely for to that office and speak to the office manager!Forgot to say as well, if it does come down to it and you think Donnie needs to be seen asap then I would bite the bullet and go to A&E and demand something happen now.
The berserk card may have to be played I think Lorraine!
Gavin
Hi Lorraine,
More GRRRR and gnashing of teeth!! Getting referred to A&E, never heard of that one before! A&E is walk in as you know Lorraine so no wonder you are so angry, I am too! I agree that Donnie shoud be referred by his GP for the CT as an out patient as you say, that was the way it was always done by my dads team when he got his CT’s.
Did you go back to the GP today with this new info from the hosp re the referral and if so what did the GP say? A&E anywhere near the weekend is a nightmare as you probably know, Dundee much the same as Glasgow on that front so I feel your pain with that one.
You must be getting more and more stressed out about everything, no wonder!
Take a big hug from me and keep us updated on everything.
Gavin
Hi,
Thanks Darla, Gavin and Lainy for your support. GP said that a referral to Edinburgh has been made. Edinburgh says that it has not been made. Where the truth lies I do not know. GP has said he will phone Edinburgh tomorrow.In the meantime, my brother phoned his consultant’s secretary in Glasgow today as he was previously advised to do if his bilirubin kept on rising. At the previous consultation they said that, if this was the case, they would arrange a CT scan and endoscopy if required. Today the secretary said that the consultant was on holiday for 3 weeks and, after speaking to one of the other doctors in the team, told Donnie that he would need to go to his GP to get referred to Accident and Emergency. I feel really angry about this. Going to Glasgow Royal Infirmary’s A&E is soul destroying. There is usually a wait of about 5 hours sitting on hard uncomfortable chairs surrounded by drunks and a mishmash of people with broken bones and injuries. Eventually, you get admitted to a ward where you sit in a bed for days waiting for something to be done. Anyway, Donnie, thank the Lord, does not have an infection. He should not have to go through. A&e. His consultant’s team should arrange a CT scan which he could attend as an outpatient appointment and then arrange for a day when he could go in for the endoscopy to unblock the stent perhaps with one overnight stay. It happened once before like this and it was a much more sensitive and humane way to be treated. It also avoids the unnecessary use of a hospital bed that could be used for someone else.
Anyway, we have asked the GP to ask Glasgow Royal Infirmary if this would be possible. it makes much more sense. If this does not work, I think we will play the beserk card!
Lorraine xx
Sorry to hear this news Lorraine, major GRRRRR to Donnie’s GP and his surgery! Did you hear back from a gp at the surgery today and if so what did they say? I know that Edinburgh will not be able to do anything about this at all unless they get the referral from Donnie’s gp referring Donnie through to them, but I guess that you already knew that.
If it was me and you have not heard from them today, I would go down to the gp’s office tomorrow in person first thing and demand that something is done now! Sometimes we have to go berserk to get things done, especially when things were promised to us and have not been done when they were meant to be done. Well maybe not go berserk but kick up a major major fuss, you know what I mean.
Go to them in person, stress the urgency of the situation and demand that the gp office deal with this tomorrow as the delay in the referral is their problem and not yours! I know that this is such a stressful time for you and Donnie and this nonsense is the last thing that you need right now. But stay strong, don’t take no for answer and go kick some butts!
My best to you and Donnie,
Gavin
Dear Lorraine, we all understand the frustration and you are right in feeling upset. I get upset if a Doctor’s assistant is lazy in calling in a RX refill. Is this Doctor’s office, who needs to send the referral, near you at all so that you could go in there and talk to an office manager? Not sure how the system works there but that would be great if another Doctor could get the referral moving! GRR, as if patients and caregivers don’t have enough to worry about! I sincerely hope your next post tells us that the referral is on the way!!!!
Lorraine, Sorry to hear about this. How frustrating it must be. Maybe Gavin can suggest something you can do to move this along.
Hi,
Feeling really frustrated and angry. Donnie’s bilirubin is now 227. Still no news from Edinburgh. When we phoned they said that they had not received a referral from the GP and asked us to phone the GP. GP on holiday until end of next week. Waiting for one of the other GPs to phone. It feels like nobody cares. Would they be so lackadaisical if it were their brother or sister? This is just not good enough! I don’t understand what is going on.
Lorraine
Hi Lorraine,
Sorry to hear about the spike in Donnies numbers. Hopefully you will get somewhere and some answers today from Edinburgh about that second opinion and you are right to keep pushing for it. Please let us know how Donnie gets on today and my fingers are crossed for you as well.
My best to you and Donnie,
Gavin
Lorraine,
Fingers are crossed on the other side of the Pond for you and Donnie, I hope for encouraging results.
Catherine
Hi,
Donnie had 2 or 3 good weeks when his bilirubin was drifting down slowly. However, this week it suddenly surged upwards by over 50. It is now nearly 200. Our GP has requested a second opinion from a Edinburgh Royal Infirmary but so far nothing…….Unfortunately, this has been our experience of Edinburgh. Nothing seems to happen very qiuickly. I hate to be negative but this is the reality. When Helen from AMMF said that Professor Wigmore suggested that our GP refer Donnie to Edinburgh this is what we asked for but his colleague Mr Ewan Harrison seemed reluctant to do so saying that there was nothing they could do that Glasgow could not offer. We said that we still like to proceed with the second opinion. I don’t know whether the fact that the stent seemed to be working for a couple of weeks seems to have slowed everything down. We will try to phone Edinburgh tomorrow . Fingers crossed!
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