donnieglasgow
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Hi,
Thanks for your messages. Gavin it is The Royal Infirmary in Glasgow that was treating Donnie not the new hospital. Thankfully, Donnie will now be under the care of Edinburgh except if he gets an infection and then we would have to go to Glasgow.
Lorraine xxHi,
Lorraine here. Really good news. Professor Wigmore arranged for Donnie to be admitted into The Royal Infirmary in Edinburgh. He was admitted last Monday, had CT scan on Tuesday and got his drain replaced on Thursday. He got the great news that the tumour has not progressed. The drain is now working wonderfully. Such a relief! It was blocked and it urgently needed replaced given the fact that it had been fitted 9 months ago.The main thing is that all this has now be done and we are so grateful to this forum that spurred us on to contact Edinburgh. However, we are left with questions. Why did Glasgow say a CT scan was too risky when Edinburgh did not? Is it a question of money? Why did they say It was too dangerous to replace the drain when Edinburgh said it was relatively straight forward? Do Glasgow lack the knowledge and expertise to treat patients with CC ? How could all the doctors at a multidisciplinary team meeting agree that nothing could be done for Donnie when clearly it could? Is it that they just agree with what ever the main consultant says. If so, what is the point of this meeting? Don’t worry I do not expect answers to all these questions but wanted you to know our train of thought. We were told in the past that there was nothing Edinburgh could do that Glasgow could not do. This is clearly not the case.
We are not sure the best way to express our concerns. If Donnie were to get an infection he would need to be treated by Glasgow. An hour and a half journey through to Edinburgh would not be an option especially if it was cholangitis which he has had in the past. However, we have no faith or trust in Glasgow anymore. They let my brother down big time. However, I feel we have a duty to protect future CC patients who may be put in Glasgow’s hands.
Thanks again for your support. It has been invaluable.
Lorraine xx
Hi,
We emailed Professor Wigmore this afternoon telling him of Glasgow’s decision. Donnie told Glasgow what Professor Wigmore had said and they dismissed it saying he did not have all the facts. We do not know anything about the tumour progression as Donnie has not had a scan in 6 months despite asking for one on several occasions. This alone has caused Donnie a lot of anxiety as he is left in the dark not knowing what is happening inside him. He would prefer to know be it good or bad news. We have tried to argue that not knowing is bad for his mental health but they pay no heed. Regarding the drain they tell us it is too risky to replace. Again Donnie is left with questions bouncing about in his head. Is it not working because the tumour has grown or is it that the drain needs replaced? 9 months ago we were told his stents were not working and it was not possible to put any more in. At that point we asked if the external drain was possible. We were told by Glasgow and our GP that it was not a possibility. We asked for a second opinion and that is when Professor Wigmore and said that it was possible. Eventually, after a change in consultant it went ahead in Glasgow and this has kept Donnie alive. This is another reason why we question Glasgow’s decisions. Up until a month ago the drain seemed to be keeping Donnie’s bilirubin levels manageable but this is no longer the case. Very little liquid is coming out. Donnie no longer gets appointments with a consultant. He has contact with the Marie Curie doctor but his input is limited. We are keeping our fingers crossed that Professor Wigmore can help.Thanks for your support.
Lorraine xx
Hi,
Glasgow Royal Infirmary finally got back to my brother today. They said they would not consider doing a MRI or replacing the drain. They seem to think it will not make a difference. So my brother is left not knowing if the tumour is growing or if the drain is blocked and needs replaced. They have given up on my Donnie. I have emailed the Professor in Edinburgh again and we are waiting to hear what our next step should be to get a second opinion.
Lorraine
Hi,
I emailed Professor Wigmore from Edinburgh who was helpful in the past. He kindly emailed back even though he was not in the country. He said Donnie could have a MRI scan as this would not damage his kidneys. This would show whether the drain is blocked which is highly likely given the amount of time it has been in. A decision could then be taken about whether it could be replaced. He said that it could be relatively straight forward to do this. An MRI has not ever been mentioned by the consultants at the Royal Infirmary in Glasgow just that a scan was not possible. In addition, they said that replacing the drain would not be an option. So tomorrow we are going to phone the clinical nurse at the Royal in Glasgow to ask for a MRI urgently. Donnie is no longer seen by any consultant there as they have said there is nothing else they can do.
Fingers crossed. At least now we have a glimmer of hope that something else can be done. Donnie has been OK over the weekend just very tired. It has cheered him up realising that there are people out there who care. Thanks very much.
Lorraine xxHi,
Lorraine here. Thanks very much for all your kind replies. Your advice is very much appreciated. We are desperate with worry. Marion I would really appreciate if you could speak to Helen. I think you are all right that we have to contact our GP to access a second opinion. Thanks so much.
Lorraine xxHi. Lorraine here.
Just to give you an update. We are quite worried just now. Donnie’s bilirubin has gone up to 451 and the drain seems to be not working. Only a little liquid coming out and the drain is uncomfortable at the bit that comes out of the body. Donnie does not know if the tumour has grown. He has asked for a scan but the doctors have said that it is too risky and that the iodine could cause renal failure due to the jaundice. They can not tell us the percentage of risk involved. It has been about 6 months since he had a scan.In addition, the doctors are saying they can not do anything else. They will not consider replacing the drain or do not even seem prepared to check if the catheter is ok. Donnie has had this drain for about 9 months. Do catheters not need replaced after a while? Does anybody know anything else about scans and how risky they are with a bilirubin level so high. We just feel we have reached a brick wall and Donnie feels that the hospital has rubbed their hands of him. He gets support from Marie Curie and the district nurses who come twice a week to flush the drain. He still has a certain quality of life but as the jaundice gets worst he feels more tired and lethargic. One good thing is he is on constant antibiotics and this is helping to fight off infections and he has not been admitted to hospital in 6 months. Any advice would be most welcome. Regards to you all from Donnie and I.
LorraineA Liittle update on how things are doing . On the positive side the tumour hasn’t grown or spread but still problems with my digestive system , I now have the biliary bag which is helping to keep the bilirubin down , now currently at 244 , still too high but gives me some quality of life. No more can be done surgically, it’s up to my body now! The white blood cell jailers are keeping the cancer in check ! Currently on permanent antibiotics to avoid infection , to be changed next week . If you go by the internet I shouldn’t be here now but says a lot for my body and quality of care . Keep up the good work and strong ear Gavin and I’ll be in touch in regular intervals should there be developments Thoughts Donnie
Hi, Gavin, how are u doing? just contacting u on latest update . The tumour is still the same ,hasnt grown or spread, that’s 15 months now, stats say only 5 per cent survive after 1 year! . Had constant stent blockages , in and out of hospital so a different approach . After a lot of discussion we decided on the PTC procedure to bring bilirubin levels down which has been a success,now at 166 . Had a few issues with the drainage bag but hopefully will settle down and not give me too much discomfort . At first when I heard drainage bag mentioned, I didn’t want to know but now I’ve come round and if it gives me reasonable quality of life I’ll be quite happy! So now back to keeping an eye on the bilirubin level and hopefully it will stay at a manageable level. Probably I’m going to stay partially jaundiced for the rest of my life with associated side effects as I can’t imagine my bilirubin coming down to a level were I can get therapy . Hopefully my body will keep the tumour in jail and no escapes will be attempted! keep up the great work Gavin and team and I’ll be in touch Donnie PS treated myself to Fleetwood Mac tickets in July really looking forward to it
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
Hi Donnie here , how are u ?. It’s been a while , I know .Nothings changed really , the stents at both sides of my liver seem to be working , my bilirubin has come down to 137 but still have associated conditions with high bilirubin mainly annoying itching! . Attended the Glasgow Beatson Hospital on Wed but there is nothing they can do while my bilirubin is high , on positive side tumour hasn’t grown or spread . Through my GP have joined Marie Curie Hospice , been attending the last 3 weeks for physiotherapy , relaxation classes and talks with Drs , nurses and experts. maybe I shouldn’t moan but at least I have some quality of life at the moment , able to do things . I’ll keep in touch Donnie
Hi Gavin , How are u doing , sorry I’ve been a little quiet lately . At the moment I have some quality of life , bilirubin is coming down slowly 146 but still have the associated conditions,the worst being the extreme itching .on Wednesday I’m going to the G lasgow Beatson hospital for my 2 months update , probably nothing’s changed and I’ll be told to come back in 2months. , just as well telling me through the phone ! And save the travelling ! Dr Murdoch has referred me to the Glasgow Marie Curie. hospice where I have attended 3 times.i have joined the physiotherapy.class , the relaxation classes and the general talk classes . I’ll. be in touch to tell u how things have got on. donnie
Hi Donnie here , Just had unexpected good. news my bilirubin has come down to 152 , a fall of 62 points so looks as if the stents are working . Dr Murdoch was pleasantly surprised too as he felt I looked more yellow than normal . Let’s live in the positive and enjoy the good news ! Hopefully it’ll continue into the following weeks. Donnie
Hi Gavin,went to see my GP this afternoon Dr Murdoch , he talked to Mr Harrison but Mr Harrison did not know too much and said he would have to talk to the Profs . As I dealt with Prof Parks in the past I would have to deal with him again . SO Dr Murdoch is going to arrange a second opinion with Ediinburgh . So I’m waiting for word but D r Murdoch said not to have hopes too high but it’s something anyway ! Be in touch Donnie
