Family problem

[Chirley]

Mum has had another unit of blood but has also had a litre of fluid taken from around her right lung. She is in a room by herself with monitors everywhere and a nurse with her every minute. There is one doctor for every four patients so she is constantly having medical observation.

I rang her a short while ago and she said she slept for a long time, the first time in a week that she's slept for more than a few minutes. She seems to be talking well and could even laugh.

The doctor said it was still serious but they were hopeful she will respond to treatment.

Feeling more positive tonight than since she went to hospital.

Maybe I might get some sleep too.


Goodnight.

Chirley

[Birgitta-A]

Hi Chirley,
Such a severe pleuritis should be diagnosed by listening at the patient's lungs and that should be done if a patient is breathless - good that your mother now is getting qualified care and improving.

Hope both your parents and you will be able to sleep well at last!
Kind regards
Birgitta-A

[Chirley]

Dad visited Mum today. She ate all her lunch, was joking with her nurse and arguing politics with him too. She told Dad off for picking the wrong floor tiles for the bathroom.

All in all, mentally, she is back to being rude and opinionated. I haven't seen Dad this happy for weeks.

The cardiologist examined Mum while Dad was there and said she had a bit of failure with some valve problems but that it wasn't anything to worry about. He said that he would follow it up WHEN she went home

I feel vindicated for demanding she was transferred to this hospital. I'm absolutely sure she would have died if she had stayed at the other hospital. Now, at least, the doctors are talking about what to do in the future.

At least now we have some hope that she can recover.

Thanks for listening to me in my distress. This forum has helped me talk through my issues.

Regards

Chirley

[SLB]

So happy to hear that things are improving! Must be such a relief! So glad you were there to fight for your mum. Good for you! Out of interest what hospital are is your mum at now? Sharnie

[Birgitta-A]

Hi Chirley,
Wonderful - it is difficult to understand that treatment can make such a difference in a few days.
Kind regards
Birgitta-A

[Chirley]

Hi, she was in Logan Hospital and now she's in Greenslopes Private.

I think the difference is that this hospital is treating her instead of just letting Mum lie in the bed and hope she got better.

Mum was on O2 2l/min via nasal prongs at Logan, at Greenslopes shes on bipap. At Logan they did nothing for the pleural effusions, at Greenslopes they have drained it off. I don't know how they've done it but Greenslopes has brought down her dangerously high potassium and phosphate and her one and only kidney is functioning better (not great, but better).

It's harder for me to see Mum because it's further away but I'm going to see her today to give Dad a break. She spoke to me on the phone for 25 minutes last night without her bipap on and she hardly seemed breathless at all. A few days ago she couldn't get more than one word out at a time.

I feel sorry for the nurses because she's learnt how to read the monitors (well, she thinks she can).

Thanks again for your support. Unless something unexpected happens, we think she's going to pull through

[Lbrown]

That's great news Chirley.

Deb

[SLB]

Hi chirley,
Small world ... I am at greenslopes this week having my 6th cycle of vidaza. Hope your mum is still doing well. Take care.
Sharnie

[Chirley]

Hi Sharnie, I go to the Mater Private for my treatment but I'd rather go to Greenslopes.

Unfortunately, my haematologist doesn't go there and I don't want to change doctors. I did get a second opinion with Tony Mills from Greenslopes. My doctor goes to RBH, Redcliffe, Mater Private, Chermside and Wesley. He's already stretched pretty thin, wish I could persuade him to add Greenslopes.

I received a phone call from Mums renal physician last night. Her kidney is failing again and he said that Mum can't survive with the amount of failure she has

She is having some tests today to see if she can recover some kidney function, including a scan of her arteries and a kidney biopsy. So, although Mums lungs are a lot better and the anaemia has been treated, the underlying condition is deteriorating.

I had to tell my Dad and my brother, telling Dad was one of the hardest things I've ever had to do.

I had a sleepless night last night so I might do some housework to tire me out so I don't think too much.

Regards

Chirley

[SLB]

So sorry to hear that .. I could only imagine how hard it was to tell your dad!! We lost my mum two years ago from lung cancer and I really struggled this year having to tell him about my potential AML which was diagnosed as MDS a few days later. However saying goodbye to my mum was still one of the hardest things I have ever done. Thinking of you and your family, I hope you get to store away a few more special memories that can help soothe your pain before you have to say goodbye. All the best. Sharnie.

[chriswg]

Chirley you poor thing. I've just read the whole thread and it's been an emotional rollercoaster just reading it, I can't begin to imagine how you are feeling. Make the best of the time you have left together and be there for your Dad, don't let him do anything silly!

[Sally C]

Dear Chirley,
I am so sorry for what you and your family are going through. I hope you find some peace in knowing that you have done everything you possibly could to help your parents. I still hope for a miracle.
God Bless you and your family at this very difficult time. Take care of yourself.
Sally

[cathybee1]

What a remarkable turnaround. It is wonderful your mom is back to her "ornery" self. You have been a great advocate for her throughout this nightmare.

[Birgitta-A]

Dear Chirley,
How sad that your mother´s kidney is failing again - we can only hope that she will be able to recover some kidney function.
Kind regards
Birgitta-A

[cathybee1]

Oh, Chirley, what a blow. Hope your mom can fight back.

Hugs

[Chirley]

Thanks everyone, this journey is a nightmare.

I have tried my hardest to be an advocate for my Mum. Two things have happened that made me be a pimple on the backsides of the treating teams.

1...... I realized when I was in hospital in March that when you are too sick to fight for yourself, that you need a determined person on your side.

2...... Being part of this forum and listening to other people's fight to advocate for their loved ones even at the risk of your own reputation and being outside your comfort zone.

I really need to say a big thanks To everyone here for showing me the "right" thing to do and to my family for having my back.

Mum is still hanging in, she's a fighter.

Regards

Chirley

[cathybee1]

Wondering how your mum is doing...and how you're feeling.

[Chirley]

Hi, mum had a bad turn this morning and they are talking about inserting a chest tube.

Mum says she has had enough and doesn't want any more. Dad was devastated.

I've asked Mum wHat she wants done if she gets worse and can't make decisions and she says to let her go. At least Dad doesn't have to make that decision.

The kidney biopsy results still aren't back in full yet and I've been at the hospital all day and still haven't been able to speak to a doctor. She is getting excellent care but the waiting is agony.

Does any one have any of those extended family members who thrive on drama? My brother let one of Mums brothers know she was sick and he rang everyone else. The phone rang at Mums bedside today, I answered it and a cousin I've never even met and Mum hardly knows, started yelling abuse at me for not letting them know she was sick. I just told him that this wasn't about him, that we didn't need drama in our lives at this point and hung up on him. I've had to ask the hospital to vet Mums calls and only let my brother, father and myself talk to Mum. This cousin and his brother are known drug addicts and they are shunned by the rest of the family. I tried not to show that this upset me but it did.

I have to leave the hospital soon because Mum is tired but more stable than she's been all day. I'm annoyed I didn't get to speak to her doctor but there's always tomorrow.

Regards

Chirley

[Birgitta-A]

Dear Chirley,
How sad that your mother not has improved. Still it is positive that she now is clear and give good contact.
Kind regards
Birgitta-A

[Chirley]

I finally have some good news.

Mum is MUCH better. Her chest hast improved, her O2 level has come up to 94% on nasal prongs, she feels better and she's got an appetite

Her doctor says that her lungs will definitely improve and she won't need home oxygen. He also said that they are going to give her an iron infusion, start EPO and insert a vascath in her neck for in hospital hemodialysis to tide her over until she has the peritoneal catheter inserted and matured enough to use (it has to scar into place before use).

She is then going to have peritoneal dialysis at home and he expects that she will regain a small amount of kidney function but that it will be very short lived and she will need permanent dialysis. He thinks she will do very well on this. The biopsy showed a combination of HTN nephropathy (caused by untreated hypertension) and IgA nephropathy (caused by an immune response).

The annoying thing is her blood test last year showed a high creatinine but her GP never mentioned it or did any tests to find out the cause or even repeated any blood tests since then. We only found out about this when her consultant got copies of her blood tests from the pathology company. He also never took
her blood pressure in 2 years despite giving her prescriptions for BP meds every 6 months.

My Dad also goes to this GP (at least he DID go, but he refuses to go back now).

I can't get the smile off my face and my Dad is so relieved that he fell asleep and slept for 12 hours straight.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Wonderful news! That GP is really responsible for your mother's severe kidney failure - a high creatinine level should of cause be examined and a high BP controled and treated as well as possible.
Kind regards
Birgitta-A

[cathybee1]

This turnaround is such wonderful news, Chirley. I am so so glad you were able to move your mother to medical facilities where she was able to get such good care.

[Chirley]

My Mum is still fighting but it's not going well.

Mum has had a permacath implanted in her chest and went for her first session of haemodialysis on Saturday. She was only ordered a gentle session as an introduction but she was only 15 minutes in when her BP dropped dangerously and she lost consciousness. Dad and I had been asked to be there by her doctor and when Mum became unconscious, I thought Dad was going to collapse too. It was horrible.

It turns out that Mums heart isn't strong enough for dialysis but without it she's going to die too. She is having an urgent angiogram at the moment to see if anything can be done to improve her heart function.

We are still hopeful for a good outcome but it's looking less and less likely.

I'm in daycare having my treatment and it really is the last place I want to be but my haematologist says it is more important than ever that I'm healthy so I can be there for Dad if things go wrong and for both of them if things go well.

Deep down I have a feeling that Mum is going to make it.

Regards

Chirley

[SLB]

Sounds like one step forward and two steps back for your mum!! Here's hoping your feeling is right.. and definitely agree with your doc, you need to look after yourself so you can look after your mum and dad! Sending positive vibes your way (not too far to travel )

[Birgitta-A]

Hi Chirley,
Is it not possible for your mother to receive peritoneal dialysis? http://kidney.niddk.nih.gov/kudiseas...eritoneal/#how
Kind regards
Birgitta-A