[DonUK]

Thanks all – another very encouraging day today. She is so determined! The’ve cut her oxygen back to 8 litres (don’t tempt me Esme – I’ll be talking in pounds per square inch next !) and she is doing OK – a little tired tonight but she has been out of bed again and managed a good 10 metres (30 feet) today. I am so proud of her, she has battled so hard to get where she is, and I’m convinced that someone upstairs is watching over her.

She will get there, it’s just slow.

As for the shenaningans in London over the previous weeks – I can’t believe people willingly do such things. Let’s be honest, all of us on the board whether suffering from MDS or carers know how precious life is and fight for it every day. Why someone would want to indiscriminately (Spelling?) take life is beyond me.

I hadn’t realise the coverage was so worldwide, but we have had a spooky experience with it all.

I normally travel to work by motorcycle(I don’t like the tube). Anyway, my motorcycle was stolen about a month ago whilst we were visiting the outpatients department at hospital (this was prior to Karen’s re-admission). Thus I would have to use the tube until my insurance came through etc. I work in Aldgate (where one of the bombs went off), but by that time Karen was back in hospital so I wasn’t at work that day. Even more odd is that I woke up the night before the bombings at around 3 am, felt very strange and decided to drive to the hospital in the middle of the night as I felt something wasn’t right. All a bit strange really.

Anyway, many many thanks for the prayers folks, please keep them coming as they are working ! (and if you could mention Carrie’s dad at the same time that would be great !)

Cheers,
Don

[DonUK]

Good news Carrie – it’s a slow process but I’m sure he’ll get there !

[DonUK]

Many thanks again everyone for the kind words and prayers – there are some wonderful people on these boards.

They reduced her oxygen level again yesterday (she went from CPAP to 18 litres on the mask, then 15 litres and is now down to 10 litres – sorry liters for the US folks!) and she seems to be coping OK.

We saw the haemotologists again today and they are pleased with her to the point of stopping some of the antibiotic treatment. The CMV load is down again, though still in the hundreds of thousands. She even got out of bed today and managed to walk 10 metres (meters?) with the help of the physio!

All in all a really positive day and very encouraging. Please keep the prayers coming as they are definitely working !

[DonUK]

Good Luck Dave

[DonUK]

Well done Terri – hopefully not too many blisters !

[DonUK]

Best wishes for a full recovery Carrie – he’ll get there.

[DonUK]

Kathryn – I am so so sorry. You and your family are in my prayers to give you strength through this difficult time. May your father rest in peace. You will see him again one day.

[DonUK]

We get there bit by bit.

She has been off the CPAP machine now for well over 24 hours and is needing less and less supplementary oxygen. Furthermore the latest CMV result we have shows it back don in the hundreds of thousands (not great but better than millions)

I can’t thank everyone enough – she is very precious to me and the prayers seem to be paying off. Thank you !

[DonUK]

Hi Carrie – prayers for you and your Dad. Sometimes these things are two steps forward one step back.
Not easy for any of you.

[DonUK]

Prayers for you and your Dad Kathryn.

[DonUK]

Hi all – well things appear to be looking up. Yesterday’s chest x-ray showed signs of improvement. However we never seem to get good without bad, her latest CMV results show a viral load in the millions.

She does not deserve this after all she has battled – neutropenia for 10 weeks, Invasive Pulmonary Aspergillosis, 40 degree temperatures for three weeks she just does not deserve it.
I just hope and pray.

[DonUK]

Fantastic Carrie……never ever give up.

[DonUK]

Hi Carrie – my heart goes out to you. Are they treating your dad for all of the “might be’s”? I know it’s an obvious question, but I wouldn’t have thought they should wait for a confirmed diagnosis before beginning some treatment – as a prophylaxis if nothing else.

Best of luck & prayers for you BOTH.

[DonUK]

Hear hear Marsha – you know yourself better than anyone – unfortunately you found out the hard way, but the SLIGHTEST thing which you’re unsure of you should ask.
It’s a pain because the last thing you want is to be re-admitted, but better to be re-admitted for 2 days than 2 weeks !

So glad to hear your OK. We’ve been following your progress and pleased to hear a success story.

[DonUK]

Many thanks guys – someone up there seems to be listening as today she has had her best day in a while. Ate 3 bananas !
She is still very weak, but the lungs do not appear to be worsening and dare I say it, are showing some small signs of improvement. (Early days I know as these things do not heal overnight).

These diseases are horrible. What has anyone done to deserve them ?

I try and read the posts as often as I can and realise that we are fortunate in that Karen had a donor and could have a BMT. We are also blessed in that the medical care she receives is absolutely first class. I will never forget Professor Mufti as he and his team are the most caring people I have ever met.

I don’t like to post news on the board which isn’t positive; we all need a boost from time to time so I will post regular updates as I am convinced she will be much better soon.

[Author]

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