Hi Chirley,
I'm not sure if I have the right advice to give you, but I have found in my professional life the only way to improve the way people communicate is to get them in the same room together and state what you need and what the problem is and hopefully a solution. I think sometimes we don't really listen to each other properly and may come to assumptions like " she's feeling unwell today, she doesn't really mean it." Carers, family and friends are wonderful, but their concerns and fears may make them unaccepting of their loved ones decisions. By the way if you can afford a health retreat thats sounds pretty good too!:) I hope you find a way to get some peace and quiet Chirley.

Cheers Rachael

Oh what a good idea...a health retreat! I hadn't thought of that, I'll start checking some out, I think there's one in the Gold Coast Hinterland.

I've had dramas here since yesterday. My new tube fell out in the shower last night. Minor panic set in. I rang the surgical ward who then contacted my surgeon who told me to present to my nearest hospital ED ASAP. So I roll up and the first Dr attempts to re insert the tube without success and with quite some pain may I add. So second more senior Dr rolls up and also fails at re inserting the tube. So they contact the gastroenterologist on call who says for me to re present at 8am this morning to the Endo Dept and he would sedate me and replace the tube using endoscopic guidance. I tell them that my tube was not inserted endoscopic ally it was inserted via open surgery but no one listens. Anyway I turn up this morning only to be told that they didn't have a Dr capable of doing it until this afternoon, so I wait at the hospital all day.

Then this afternoon three more Drs decide to try to reinsert the tube by just pushing it through the old hole and voila.....it worked. Then I get sent to radiology for contrast studies and finally get ready to come home when I get told that my surgeon wasn't happy that I had the tube replaced in the same hole so I basically ditched my surgeon then and there....he can get lost. If he can't be bothered being available when I needed him he can find himself another patient. Then to top off a great 24 hours I get told it looks like I've got Pseudomonas infection again. So the site gets swabbed and I have to return for results. If it is pseudomonas I have to decide to treat or not but I'll cross that bridge when I have to.

On a positive note...I've never had such excellent, friendly care with staff that went out of their way to help me. I was very impressed. They even had to cope with a man having a cardiac arrest right in front of me and they were jumping on his chest etc but still managed to keep every other patient cared for and calm. (The man survived)

What a dramatic night you had! Glad you survived it with your usual aplomb. Also pleased that the idea of a health retreat appeals. There are probably a few in the Gold Coast hinterland area since it's beautiful country. I love Mt Tamborine area.

Well I checked out the health retreats and none of them are any good for me. I can't even walk without two walking sticks and then only a few meters, so I don't think yoga classes and bush walks and gym sessions are going to be of any benefit and that's what they all offer. They do offer organic healthy meals...except I get fed through a tube....waste of time.

Talking about the tube. I haven't been able to use it to give myself a feed since it was reinserted. I was blaming the connection between the feed line and the tube being ill fitting because the liquid would just leak all over me and the bed no matter what I did. The Endo unit at the hospital didn't want to know about it. The dietitian sent three different kind of connection adapters....nothing helped. I dropped back to 47kgs. So yesterday I caught a taxi to a private emergency department and I had a jejeunostogram performed. It turns out that when they inserted the tube they pumped the balloon on the end up so much it caused a complete bowel blockage. All the feed I was trying to put in was coming back through the hole the tube goes in. That also explained why I kept leaking bile fluid all the time from the tube. Anyway the ED doc deflated the balloon a little and I was given a kind of enema down the tube and today, for the first time in about ten days, I'm trying to get some nutrition in. If it still leaks out every where I think I'll give up. It's very frustrating.

Oh Chirley - so sad to hear of your latest episode. That's miserable. I hope your tube starts working really well now so you can get some good nutrition.

Disappointing about the retreats - I thought there might be some which allow people just to be quiet and peaceful in a beautiful environment, with expert help available if needed. I can understand you wouldn't want to travel too far. Hmmm... back to the drawing board?

Has anyone ever heard of any hospital refusing supportive care to a patient if that patient is refusing active treatment?

I am refusing copper treatment and my HB is 70. I presented to the local hospital for a blood transfusion. They agreed to give me one unit of blood as a one off. They said that unless I agreed to active treatment I would not be offered any further blood transfusions.

I feel this undermines my right to determine my own treatment or refusal of treatment.

Also, I don't think I've ever had these tests before and I'm not sure why they were performed but the hospital gave me results for an INR, PT and ECHIS which were all high. I know they are clotting factors and I'm not on any Aspirin or blood thinners. Any thoughts?

How is it even up to the hospital to make that kind of decision? Isn't it a matter of what orders a doctor gives them, meaning something you and a doctor would have to work out?

On that subject, is there a doctor you've worked with who understands what you want and don't want?

Yes Neil, my GP knows my wishes and they clash with his beliefs. My Physician also knows my wishes but thinks I should continue having treatment. In my Physicians case, it isn't because he has his own agenda but because he is a genuinely caring man who thinks I have more life to live and should keep fighting.

The hospital rang my Physician who told them that giving me blood transfusions was just delaying my inevitable death and the hospital then decided they would no longer provide blood transfusions. I was told my Physician will ring me on Monday about reinstating my copper treatments. I feel as if my treatment options are being denied to me.

Chirley,

It is completely absurd that the hospital is refusing transfusions for you for not seeking "active" treatment. I do hope that you are able to get this worked out quickly. It is hard to believe that quality of life as defined by the patient isn't the priority.

I'm so sorry that you are having to fight this battle now, Chirley. What is happening seems quite unethical. It's just as well you are a very strong person.

Well Monday is almost over and I haven't heard from my Doctor so I have to assume that he has forgotten about me. As I really don't wish to resume active treatment at this time and I can't have blood transfusions, it seems as if I've run out of options.

I just hope that dying from extreme anaemia is not too horrible. I have no palliative care in place. It's just me going it alone. This is not what I wanted but it is what our wonderful medical system has foisted on me. I'm scared that I'm not strong enough.

Is it worth consulting a naturopath, Chirley, to see if they could give you some options which could help your iron stores?

Wow, Chirley. I don't know what to say... It just doesn't seem right and totally unbelievable that it has come to this! Have you heard anything further in the last two days? Thinking of you and hoping there is a solution out there for you. Stay strong!

No, I haven't heard anything and I haven't done anything proactive either. I'm just waiting it out. I've felt pretty ordinary the last few days...very breathless etc. I rummaged around my bathroom cupboard and found a bottle of beta blockers that I used to take and I restarted them last night. At least my heart doesn't feel like it's going to jump out of my chest today. I can't see any point in having my HB checked but I'm still curious.....stupid isn't it?

I did wonder if yesterday was.....IT....got chest pain about 3 in the afternoon and it lasted about 20-25 minutes...it was quite unpleasant but I'm still here.

Chirley - Your symptoms are certainly indicating low hb aren't they. Why not see a different GP and request a blood test? You are very much in my thoughts and prayers.

I'm still here :)

I have a card which lets me have a blood test whenever I want one for a six month period. That's not a problem. I just can't see the point because no matter what my Hb is the hospital says they won't transfuse again unless I agree to active treatment which I really don't want to do.

I wonder what they'd do if I turn up with a Hb of 50 and asked for a transfusion but still refused active treatment? Would they have the courage to refuse? It would be interesting to put them to the test.

This next week is my pivotal week, and crunch time. My Aunt and carer is leaving at the end of the week to spend some time with her sons and grandchildren and I'm barely able to look after myself let alone my house and pets. As well as that my mother is finally being discharged from hospital on Tuesday after her fall over a month ago and both my mother and father have misled the Discharge Nurse about the home situation. The Discharge Nurse is under the impression that the daughter (me) will be able to help care for her and so will my Aunt. So no services have been put in place to help my parents at home. My parents really do live in La La Land. I've spoken to my brother about the situation but as usual he's MIA. He was nice enough to phone my mother on her birthday! That was special of him, first time in about ten years.

It's funny what your brain does at times like this....I almost feel like I'm an observer watching this from outside with curiosity as to what's going to happen next but with no control over it and no real involvement.

Chirley - Does Qld have community nurses who could assist?

Well, high drama at my house today....

I went out and had a blood test and felt very unwell on the way home in the taxi. I just got home and that's really all I remember until I woke up in an Ambulance. Apparently I had a fit and stopped breathing (according to my aunt and father). I have hazy memories of little bits of things.

Basically I was told I had a transient stroke due to lack of blood to the brain. I don't have any residual deficits but I've been told if I don't restart copper treatments, I may well have a stroke and survive but with deficits so that I won't be able to speak or see etc. That's scarier than dying. Also my blood counts are now pretty bad. Hb 67, WCC 1.0 don't know the neuts but I have to assume <.5 I've been discharged but need to decide by tomorrow whether to resume treatment or not. I have to admit I hadn't factored in living with the after effects of a major stroke.

It's a no brainer.....I'd much rather have copper than live with the permanent after effects of a major stroke.

What a horrible damned disease.

I'm so pleased that you are going to have some treatment, Chirley. Your body has told you what you need to do, and that's good. Hope you are feeling better soon!

Keep hanging in there!! I think of you often and am hoping that life gets easier for you, or at least, a little less dramatic ;)

Unfortunately, I have no pieces of advice for you but good luck for the coming week... If you went for copper, would you be admitted to hospital?

It's my third day in hospital having copper treatments and my neuts and platelets have responded but my Hb has only climbed to 60 so my Doc has given in and I'm having a blood transfusion today as well. Hopefully I'll start feeling a little better soon. BP is around 70/38.....higher at times. So tired.

Good to hear that the copper is doing its work and so glad you are able to have a transfusion, Chirley. May your red cells rise to the occasion! I hope you feel much stronger in a couple of days.

Okay, so I've now had three blood transfusions and they don't seem to be working HB still 60ish. I'm being discharged on pain relief. I think I've read somewhere else that blood transfusions stop working....would that be right?

I'm still very tired but I'm being kept very mellow by the drugs so not feeling so bad. I guess it's time to just wait and see what happens.

It's been two weeks since the last of three blood transfusions in a week (Hb was 66 afterwards) and since the last of five copper infusions. My blood test on Friday showed my Hb is still 66... So it looks as if the copper hasn't managed to get my bone marrow working like it used to.

I'm going back into hospital this week for another week of copper infusions.

My pain relief has been doubled and I've also been started on Clonazapam so I sleep 18-20 hours a day. I've got this odd craving for plain vine ripened sliced tomatoes absolutely drowned in salt and pepper.....I even drink the juices left over in the bowl.....weird or what? It's just about the only thing I eat now but I am still being fed through that j tube into my small bowel. The dietitian isn't particularly happy because I'm still losing weight but I'm not willing to be attached to the feeds day and night. I'm currently just having the feeds overnight and that's bad enough but to be attached to a pole, a pump and the feed during the day too is a bridge too far.

I don't know what this next week will bring....maybe the copper will work, maybe it won't. At least my family can't say I'm not giving it a go.

Hi Chirley,

Good to see you are still hanging in there.. Well as best you can, anyway. Hope things improve this week for you. :)