Aussiemum --

I am sick at heart to know that your mother is suffering as she is. You have been such a great support to her, and she has already endured so much! While I don't have any experience of what you are dealing with at present (my dad did not make it to SCT), I have heard that acupuncture is definitely not advised for patients with leukemia, or dealing with fragile (new) immune systems. Totally appreciate your frustration and wanting to take back some control here -- is there anything that brings her relief at this point? Is hydrotherapy a possibility? Water aerobics, or something along those lines? I have know idea as to weather this might be of find help. I'm so sorry. Hoping things get better soon!

Robin

Yikes, please pardon multiple typos- the perils of using my iPhone for this forum!

Robin

Dear Aussiemum... I am distressed that the hospital has no physical therapists to work with your Mum, this is awful. Are they just going to leave her muscles to atrophy in bed? This is crazy.

Will the hospital allow external physical therapists? If so, and if you can afford it, I would do it if it is safe for Mum.

xoxo
Monique

thank you Robin and Monique...

Robin, had not heard that about acupuncture I will now do more research on that one.

I have no idea if they will allow the external therapists, however they only provide at this hospital a 20-30 minute physio appointment each day.... the rehab centre would be better, but we are still waiting for her to turn up.

In the mean time mum is stuck in bed at the mercy of the doctors who cant quiet decide what to do.

in another 24 hours it will be Friday again, which means its the weekend and the physios don't even turn up on the weekend.

I guess this is my frustration is that I have stood back thinking they are working on it, in the meantime I could have arranged things for her

Looks like I may need to take another trip home, which I was trying to avoid or save up for when she actually got to go home.

If they allow private therapists, that is the route I would go. I am pretty sure that they will have to approve them for liability reasons but if I were you I would begin to raise issues of neglect. Your mother is obviously at risk of skin breakdown just lying in bed like that and if the rehab center can't manage the bone marrow transplant it would be irresponsible for them to simply transfer her there. They need to come up with a workable plan yesterday and it is wrong for them to wait to be prodded by you. Hoping for a fast solution to this for you.

thanks Lori, this is my dilemma, im trying to sit back and let them do all the right things, but I know that sitting around in a bed all day is not good.

Have been confirmed she has been accepted into the rehab centre (as really she is about day 75 for the BMT and her blood work is perfect and the BMT doctor did confirm he would be responsible for that) we just have to find out today what the wait list is for the rehab.

If its more than a week mum is going to see what we can arrange external to the hospital

Wow this is insane, never stop speaking up! She deserves the best care. My Tony is a PT and agrees nothing more important right now than getting her moving! If they allow private - go that route-absolutely no acupuncture and. I think we've been instructed no swimming for at least six months because of the contamination in the water and so with that in less if it's a hospital regulated therapy pool I wouldn't try that just yet either she's too fresh out of transplant

thanks everyone again :) ..

Mum moved to the rehab centre on Friday, as with all hospitals, the BMT one just got a call Friday morning saying they were picking her up at 3.30pm .... its like they all should have just known LOL

Anyway as usual its the weekend so everything is quite and shuts down.

Today she is having her first physio session, she is nervous but excited to get this started.

She did say her platelets had been going down slowly, they did get back over normal, but skowly going down, everything else it above normal, the doctors doesnt seen to bothered she is just a little nervous when something goes down

Aussimum,

First of all, tell your Mum to be strong and to not even think about her counts which will bounce around. In that regard, she is fine.

I am sure that many Australian health care facilities share the same problem that many hospitals have in this country....the doctors and staff just don't care.

I am in the process of investigating my mother's hypoxic event (which was unwitnessed and, I believe, led to her ultimate death), as well as other mishaps and miscommunications and have requested her records from the rat hole where she spent her final days. I had to endure surly nurses, an ICU attending who had the nerve to ask my family, "Why do you all look so anxious?", and the continuous passing of responsibility onto another physician or nurse. Perhaps I am very "old school," but my patients mean a lot to me as do their families. No family member, regardless of how un-savvy they are about medical terms and disorders should be kept in the dark about a loved-one's condition. There are many ways to explain medical issues that are easy to understand.

I truly hope that your Mum gets all the PT that she needs. When muscles are not being used, their structure and function can still be preserved by passive exercises and devices that can provide variable amounts of support while an individual walks or does other activities.

Please know that I am praying for your Mum's complete recovery from this unfortunate side effect of her treatment. I know how important mothers are in our lives and I am still completely devastated by the loss of mine.

Cliff

thanks Cliff, its very true when people say " you only have one " so treat them like she is a queen. I hope you get some sort of answer I feel 200% for you at this time, thank you for taking some time to comment on my posts.

Our hospitals are very similar in it feels like when all you want is all the attention in the world, you are just one person in a long line of unattended people.

Some days we have had a little bit of a laugh and hoped that we had "House" looking after us just so we could have an answer and find a solutions.

Had a good start yesterday with physio, still in assessment stage, hopefully we will have solution stage sooner than later.

xoxo

Cliff -- I hate to hear that your mom had such bad treatment ... I am quite concerned about our medical system in general. I know that the UAB hospital is probably not high up on the accreditation list, but sometimes having just one person who cares can make all the difference. I had many. Even when I went back last time for a check up, the person at the waiting desk was caught up so she went around asking the patients if she could get them a cup of coffee or anything else they might need. When she got to me I told her I did not need anything but was just totally overwhelmed at how much she cared for everyone. I just hope that all of the problems that we are running into will not keep people from expressing their basic humanity and love for one another. I know you care for all of us and it is only right that you would have some people that would care for your mom. I will be praying for you and for Aussiemum's mother as well -- that things turn around for her. Take care -- daveB

Good News day today :)

Mum had a great PT & OT session yesterday her first real session... appears that her legs are still strong, she was able to lie down on her back and put her legs over like a rolling pin and then have 3kg strapped to her ankles and she was able to do 10x3 sets of leg lifts.

So the strength is there, have to get that brain unblocked to tell her she can walk, and she will not fall.

Also platelets which had got to 107 but slowly dropping to 88 (which I thought still was not a problem) was up to 109 yesterday :)

She feels great, and glad we are in the right place to get her back up and walking so we can all go home :)