My Journey with MDS


Slow progress

28/03/2016 15:16

This is Sally writing this on behalf of Glyn.

Glyn is continuing to improve medically and his strength is returning very slowly. The physios are working him hard and Glyn can now walk onto the ward using a walking frame. This is incredible progress but it is so difficult learning to walk again and completely exhausting.

We are both staying strong and doing everything that we can to make sure that Glyn gets home again for the summer. 

We hope that you all had a great Easter and our thanks go to Glyn's former work colleagues who sent a card and lovely gift to mark his retirement from the department.


Difficult Times

07/03/2016 16:31

This is Sally writing on behalf of Glyn as currently he is too poorly to update the blog.

Since Glyn's last post, his kidney and liver function deteriorated significantly and at the same time the CMV virus increased to very high levels. Glyn became jaundiced and bed bound within days and his weight due to kidney failure increased by 10 kilos rendering him almost unable to move.

Ironically on Valentine's weekend there was a decision to take him to intensive care to stabilise him and start dialysis, however this did not happen as there was a reluctance to move him at that point and the treatment was so invasive that it was not thought to be in his best interests.

Since these dreadful days of worry Glyn has fought an amazing fight to get better and his liver and kidneys are improving and with the help of our amazing physiotherapists is now beginning to mobilise slowly. His determination and strength has been inspirational.

We expect a long haul to recovery but Team Jones are going to do this !

We both would like to thank our wonderful family, friends and work colleagues for their love and support over the last three weeks. 


Trying to be patient whilst waiting for improvement

02/02/2016 15:53

It's definitely a real slog at the moment, medication has been changed to try and reduce the extent of the CMV virus and the test results come through twice a week. So a long time between tests but there is an important level of monitoring needed to ensure my kidney function and bloods do not deteriorate. I've been having extra fluid to help with this, thank you Baxter, but have some swelling as a result, fine balance indeed. 

Physio has been helpful in putting together a gentle programme to enable me to keep my strength up and help with motivation which I am doing my best to follow. 

I have now officially been retired on health grounds so all very strange especially as my job was advertised last week. Whilst I recocognise this was inevitable given time off etc still leaves me with mixed feelings that I'm working through.

Our friend Brian is also on the ward undergoing treatment and we keep in touch with messages. 

Still no sign yet of a discharge plan 


Still in hospital

26/01/2016 20:46

Well I'm still in hospital but continuing to improve. I'm off the direct feed into my bloodstream which is good news and beginning to expand my diet under guidance so as not to upset my "system" . Most things are starting to settle down again but the big issue appears to be the CMV virus which is yet to settle down and is the determinant for me being allowed home from what I understand. But they have plans for it which is good, and therefore a plan to get back home.

It's fair to say I have been frustrated by the stay at times, but I have to put into perspective on my journey which is a marathon not a sprint, something which Sally constantly reminds me about.

Sally is being her usual star self again with regular visits and it's great to see her nearly every day.

More news when I know more about the discharge plan

Still in hospital

15/01/2016 18:25

So is just over a week into my stay in hospital, things are improving slowly, with the combination of very restricted diet alongside direct feeding via "Baxter", steroids and antibiotics. It's not been an easy week in terms of dealing with it. Numbers in blood have all been slightly affected by events so plenty of IV fluid and medication. 

Sally has also made an improvement and it was brilliant to see her this afternoon, first time apart from Skype since I was admitted as no visitors are allowed with bugs!!!

No news on likely discharge yet bound  to be a while longer to allow my bowels to settle and my dietary options to return to what I regard as being normal for me!!

Thanks for messages of support for both Sally and myself. 


interesting New Year

07/01/2016 18:55

   Happy New Year to everyone. By a strange set of coincidences I find myself back in hospital almost exactly a year to the day that I was admitted last year to QA albeit for different reasons. 

Saw consultant at regular Thursday clinic today which led to my readmission this afternoon. In essence the hypothesis is that the reduction in cyclosporin may have induced some Graft verses Host Disease of the gut leading to me having quite bad diarrhoea which has been going on for 3 and a bit days.  Not only does this need to be proved but the kidney problem can be compromised by dehydration as a consequence - so I am back in for them to sort me out!!! On the plus side I have had a lovely warm welcome from the staff on C6 that I got to know so well. 

Whats worse is that Sally has the cold from hell which has quite literally taken her off her feet and I hve now left her fend for herself, although i know the boys have already been in touch. 


Happy Xmas

24/12/2015 21:18

Can  I take the opportunity to wish everyone a Merry Xmas and Happy New Year for 2016. 

Thanks from Sally and I for all the messages of support and good wishes through 2015  it has been much appreciated. 

Will update blog in New Year. But am doing ok and looking forward to Xmas with Sally, James, Rhi, Ben and Kat


Progress Continues

13/12/2015 19:58

Overall a much better week this week, which comes as a relief. I had some blood last Saturday week which has boosted my red blood cells. Also I am on self administered injections weekly to help my kidneys produce red blood cells. I am still having the extra fluid via baby baxter, getting used to taking it down now after 6 hours. Other numbers appear to be holding up.


So Xmas is nearly here and I am having to do my shopping via the internet, it is frustrating not being able to go out but a necessary part of my recovery, hopefully this might change sometime in the New Year! Can we also take this opportunity to wish all our family, friends and supporters who have sent so many kind words and support to Sally and myself a HAppy Xmas and good wishes for 2016.




Progress albeit slowly

30/11/2015 21:00

Apologies for the delay in updating the blog, I have had a few weeks of feeling less well, due to a combination of infections and fatigue. CMV did it's bit in this and as I set out in the last blog I had baby baxter in addition to oral medication to treat CMV. It was certainly an interesting experience carrying baxter everywhere with me, even sleeping with it!! Unfortunately one of side affects of the medication through baxter is that it can have a detrimental impact on blood counts. True to form this happened with me and after a week or so it was stopped as my counts were plumeting. 

Day 101 coincided with my 8th Bone Marrow Biopsy, results were positive with my marrow being 95% donor and blood 98% donor, so good progress. I am also seeing renal consultant due to kidney damage so more visits to hospital. During the past 3 weeks I guess I have been to hospital appointments / Day Unit 4 days per week. Hopefully that will slow down. 

Had a weekend visit from my sister and partner which was great and really appreciated them taking the time to travel down and as its the first xmas we have known each other and got my first ever "brother"  xmas card !!

I'm still not allowed out to shops or pubs yet and no immediate prospect of this happening, overall I believe I am improving but incredibly slowly, with some frankly dreadful days thrown in, and cannot imagine how I would cope without Sally. 

Finally my renal consultant has decided I need some additional fluid so Saturday and today was a six hour stint, as I need to do this twice a week for a while, baby baxter is back and today I learnt how to take the saline down and flush central line etc. so I will have it loaded at clinic on Mondays and Thursdays. 








Mixed news

08/11/2015 17:11

Well after a relatively quiet week for my third week at home, I've had quite a rough week. My CMV really decided to jump out of its box, they also think this has impacted on my blood readings and I needed a blood transfusion on Friday. Anyway as part of the treatment I am being fitted with a "baby baxter" probably on Tuesday, which will be attached to me 24 hours a day dispensing medication and saline. It apparently comes in a back pack (no ninja turtle jokes please) so I'm sure we will get really close!!         

Hospital appointments are three times a week at the moment so shuttle runs to Southampton, still I am grateful for all of the monitoring even if hospital visits do tire me. I still have to be reminded that in the scheme of things I have not been out of hospital that long and to manage my expectations!! Sally has been so brilliant during this past few weeks, but returns to work this week, it will seem strange to be here on my own as its been great to spend time together again after my elongated stay in hospital. 

Hopefully slightly better news next week as I report on how baby baxter and me are getting on. 

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