Ken-PA

[grungema3]

hi, there. sorry I can't get back to you  but the answer box keeps disappearing as soon as I put someone's name.
Thank you so much for your comments and your interest. We have checked all the stuff you said (I think, told you, big secret society in the U.K.) Had her 2nd bag today, don't know hb yet, will call tomorrow.Looks bit better this evening but very slow bag today as b.p. very low ( don't ask me, they don't tell you).
But you know your own and I just have a niggle that there's something not quite right. I'll let you know. Have asked for weekly hb, will save all this suffering but don't think this is going to be a good or stable time here from now on. Unfortunately, and very sadly, I feel the prognosis is as bad as it gets. Hoope I'm wrong.
Take care, thanks again, will speak soon.

[Ken_PA]

hello again. One thing about warfarin, it does interact a lot with diet (and other drugs). Mainly leafy greens, which have the vitamin K that is involved in clotting. So if she is used to eat a good amount of greens, and her blood thinness tests okay -- then she doesn't have any greens for days, her blood will be thinner and bleeding is more possible. The worst outcome in that case is a bleeding stroke. So keep the diet the same from day to day.

Of course, not thin enough can lead to the heart attacks. Keeping the thinness of the blood within the range is always a big problem with managing warfarin.

As far as the steroids and skin, I don't know. Hopefully you know about their effect on blood sugar and how they can ed to diabetes. But if you don't have the typical weight gain then maybe you're doing good on that score.

Have you ever been tested for gluten sensitivity? (re: psoriasis)

Thanks for the invitation. What's for dinner? :)

[grungema3]

Thank you. We had a meeting with doctors today. They agreed that although, medically they'd like to make sure, her hb isn't diving at present, around .5 per 2 days, so they're trying not to carry out this test. They agreed that it's too traumatic for her. Also, they agreed that they'd put her back on the maintainence dose -60mg- of furesemide as she does have fluid in the lungs and "sometimes the family knows best".
I've told them dozens of times about the fall she had in that other excuse for a ward, and the severe black and blue all over hip, bum an d down leg. they are now going to X-ray as it was only 2 days after that she had this emergency.
Also, **** CT scans in various places -chest, leg area, lungs.
Warfarin: i asked if maybe she could not have it. Agreed it would be better for her blood condition but too risky re.at least  3 previous TIAs and heart problems.
Thank you so much for the info re. colour. I keep trying to tell them she's quite constipated and the stools may still be black from the backlog of iron.
Since the purge no-one's bothered to see the colour, suggested might be a good idea!
Sadly, I said that I think we're looking at optimistic months. They just nodded.
Main thing now is to stop the breathlessness and get rid of fluid. I can't have her at home when she can hardly breathe, we only have an oxygen converter  and, obviously , she needs monitoring. with hospital machinery.
They did take her off the new meds- which, as you say, might have had something to do with it.
RE. platelets: Don't know numbers but we are all excellent and rapid healers in our family. Even on Warfarin, when they give mum a blood test it stops bleeding in 1min.
Both Mum and i both had  problems when we had appendicitis as even after just a week the wound had healed over the stitches and it was like having another operation getting them out (years ago, no soluble stuff then).
So, I'm glad we do something right!
Also, Mum has all her problems and I'm bogged down with CFS and Psoriasis yet our hair and nails grow like grass!
Obviously, this crisis has likened me to a polka dot cloth. It's driving me mad itching but will settle down. Hope you don't mind but can I ask you, been using steroids for years with effects whatsoever except for thinning skin. I am now finding that my arms and legs have a 'wrinkled' look. Tried not using the steroids  but can only kep it dawn in a bad flare up with strong stuff. When it settles will my skin right itself if I don't use it?
Not majorly important in the scheme of things at present but I would feel a bit better not to have to wlk around like a polka dotted prune, I feel miserable enough anyway.
Thanks once again for your excellent advice. Could you come and live in England please and I can keep you in the cupboard and consult m y own private oracle!
I'll probably feed you but I do forget to eat with all this stress but my other half's an excellent cook - it's worth coming to sample his food! If you ever want to visit, you really do have a place to stay (not a cupboard!)x  

[Ken_PA]

hi, well you have a good point about "if they find tumour surely can't do anything about it". If she couldn't undergo the colonoscopy, then how can she undergo surgery? Unless they can arrange special expedited timing. They can't make her wait the same delay as a 50 yr old.

However, they might be able to do endoscopic surgery, which might turn out to be about the same level of invasiveness as the colonoscopy.

You might also ask about her platelets and if that is causing bleeding. I know you say they don't tell but in this situation they might tell.  If platelets are low (they are usually crucial to stop bleeding), then how much risk is that for surgery? Will they give platelets as infusion pre-surgery?

Or is there is anything she can do (like taking vitamin K to improve clotting) or avoid doing (like avoiding fish oil or vitamin E to reduce bleeding).

Is her new med causing more bleeding?

Also, red stool means bleeding in intestine. Black means bleeding in stomach (the acid changes the blood color).

Also, can you think of anything that she ate or did differently (like a fall) before a pronounced drop in hemoglobin?

Good luck, you're doing a great job.


P.S> No, i didn't get any msg from you a few days ago.

[grungema3]

Hi Ken,

Hope you received my message few days ago.
Today decided to give Mum colonoscopy.  Supposed to be 8am. Starved and no fluids from 6.00pm the night before.
Gave mega laxative. Poor woman pooed for England - exhausted. Waited till 3.00pm. till took her. By now dehydrated, line in  to hydrate, breathless, having some angina pain.
When doctor who was doing the procedure saw her refused to continue. Too frail. Off oxygen, sats down to 84, looked terrible, lips going blue. I had to insist that they put her back on O2.

We have to meet doctors tomorrow. I think they might think she has a tumour in the bowel. Insist she is bleeding from somewhere becuse of massive drop in hb from time to time.
Consultant insists it can't be leukemia as it doesn't behave like that. Do you have any ideas about what questiong we should ask? Feel can't make an informed decision about  colonoscopy as was obviously too long to wait for the procedure this time.
I want to ask if they find tumour surely can't do anything about it?
hb going down (when no sudden drop) about .5 every 2 days now. Today, after trans 2 days ago, 11.5.
Hope you read this before tomorrow. Love x
I would say this is just an escalation of the blood condition?
How much more do you think they need to poke her about?
    

[Ken_PA]

hi, maybe they need to use a slower rate the next time that a large infusion is needed. I'd be sure to mention what happened (last time) to whomever is doing the procedure the next time.

Otherwise answered via PM.

[grungema3]

Hi, Ken

Back to the emergency dept this week. Has regular trans 2 weekly. Hb  went low suddenly, chest pain, breathing probs.
admitted, hb 7.5. Gave 2 bags. Went to see her next day, couldn't wake her. Stupid staff been walking past all day, took no notice.
Made complaint, suddenly loads of medics, we were told unlikely would recover.
family stayed all night.
5.00a.m. suddenly improved. Breathing easier.
Next day bit better but very frail. Next day sent home.hb 10.5.

V.frail,  breathless, too tired to eat, feed her, sleeping nearly all day.
I am so unhappy, sad, depressed.

Why did she suddenly collapse? 2 bags too much for heart?
Next trans. next week. Will she collapse again? I'm scared.

no-one tells me anything. I feel we are reaching the end but no-one will discuss this with me. Just she's very old - that's not an answer.
Haven't put this on the forum post, bit miserable for anyone else with similar probs. Take carex

[Ken_PA]

hi, I hope she's still hanging in there and that the RBCs continue to help  - and that internal bleeding hasn't gotten bad.