A not so good start to the new year

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

janbev
Posts: 25
Joined: 23 Dec 2013 13:18
Contact:

A not so good start to the new year

Post by janbev » 12 Jan 2015 22:37

Well as I said in my Happy New Year message Bev was admitted to hospital on New Years Day with Sepsis. For the next week he was treated with different cocktails of antibiotics, had numerous blood tests and saline drips. Finally he was discharged on Friday 9th with one last dose of antibiotics. His blood counts we were told were stable but with HGB at 10.8, wbc at 0.68, neutrophils at 0.2 and platelets at 126 on admittance and on discharge hbc at 9.9, wbc at 0.62, neutrophils at 0.2 and platelets at 104 I would say the counts were dropping. He left hospital at about 1pm and was feeling quite chirper although very weak. By 6pm on 10th January he began to feel unwell and around 9pm his temperature had risen to 38.3, So having called the medical alert no. I had to take him back to hospital where once more he was on IV antibiotics & paracetamol to keep his temperature down. This morning he was told his blood counts (from Sunday) were now even lower with Hbc at 8.5, neutrophils at 0.15 and platelets at 135 - they did not tell him his wbc. They had decided to give him something to try and improve his wbc. - just one injection and see if there is an improvement.
This afternoon though he had a visit from a specialised hematology nurse who has given him her mobile no, - must be a new position as she is still waiting for offical calling cards to be printed. Bev asked her if there were any other MDS patients at the hospital and was told that there were some. He asked about a patients group being set up and was told that she was looking into it. So hopefully Derby will soon have a patients group set up.
Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
GeoffC
Posts: 8
Joined: 25 Nov 2014 20:49
Contact:

Re: A not so good start to the new year

Post by GeoffC » 13 Jan 2015 10:05

Hi Janet

Sorry to hear about Bev. Not the start that anyone wants to the New Year.
It seems to me that perhaps they were being a little bit optimistic when they said his levels were stable and discharged him. I expect they are under pressure for beds as many other hospitals seem to be just now. I hope the latest treatment starts to kick in and sort things out.
At least you have a contact in haematology now who could alert the specialist there if things are not improving. I know it can be difficult in a large hospital even getting to talk to someone about a patient, so don’t be afraid to use that mobile number if you are still concerned.
Best wishes and I hope things start to improve quickly.
Geoff
Geoff C. Age 61. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. No current treatment - active monitoring every 4 weeks. Lancashire.
“I’m not living with MDS, MDS is living with me!”
Glynjo
Posts: 11
Joined: 20 Oct 2014 17:49
Contact:

Re: A not so good start to the new year

Post by Glynjo » 13 Jan 2015 19:25

Hi Bev,
What a shame .....However I can personally vouch for the having a specialist haematology nurse. Mine has been worth her weight in gold .......in answering my questions daft and less so. Also helps you feel you are not alone.

Good Luck to you both - I am writing from my hospital bed as I was admitted last week with flu and infection.

Glyn
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
Contact:

Re: A not so good start to the new year

Post by janbev » 15 Jan 2015 22:22

Thanks Geoff & Glyn for your messages. Glyn I hope you are now over the flu and infection and at least on your way to going home. Bev is finally feeling a lot better - so far this week they have given him 2 injections of something (not told what it is) to promote white blood cell growth and his white cells and neutrophils are slowly improving as is his platelets although his red cells are still low. His temp has been 37.1 all day and if it continues to stay at this they may send him home tomorrow. Having spent 2 weeks in hospital bar one day in the middle Bev is looking forward to getting home.
Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: A not so good start to the new year

Post by chris » 19 Jan 2015 11:33

Hi Janet

Hoping that Bev is allowed home very soon (if not already there!). This worry of neutropenic fevers does hang over those of us with low neutrophils - also anxiety over whether any temperature increase is "normal" e.g. you have a virus and you ride it out or if it is due to the neutropenia! Did they manage to identify any particular bacteria?

I do hope you can get a local MDS Support group going in the Derby area. Do contact Sophie and see if she can help in any way.

Glyn - I hope your flu soon goes. Had you been offered a flu jab this year? Apparently it is now protocol to do so for neutropenic patients.

Best wishes to all

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Glynjo
Posts: 11
Joined: 20 Oct 2014 17:49
Contact:

Re: A not so good start to the new year

Post by Glynjo » 29 Jan 2015 22:52

Hi Janet / Chris,

Yes I am back home and feeling much better. Doctor told me it was mutant strain of FLU not covered by vacinne - there was me thinking it was man flu. I had to spend time in isolation!

Hope all ok
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
Contact:

Re: A not so good start to the new year

Post by janbev » 30 Jan 2015 09:27

Hi Glyn

Glad you are back home. Bev is also home but in a much weakened state - he had a blood transfusion Wednesday and that seems to be helping. Take care and keep away from those viruses! :lol:

Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
chris
Posts: 593
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: A not so good start to the new year

Post by chris » 31 Jan 2015 12:15

Hi Glyn and Janet

Glad that Glyn and Bev are both out of hospital. Stay warm and keep away from the masses!! Bev should be feeling a bit less fatigued after the red blood cells transfusion?

Basically, each year's flu vaccine is a "soup" of different flu strains selected as a best guess from the vaccine manufacturers as to which of the global strains might be around in the following winter. I found this info: "Overall, the efficacy for the most common type of flu vaccine used in adults is around 59 percent. In a good year, reports the Los Angeles Times, a flu vaccine can be 70 percent effective. Last year's crop was around 50 percent effective". It's clearly important therefore that we don't over-rely on vaccination to keep us out of harm's way. Interesting that if you have had the flu jab and then succumbed to one of the strains not covered that they call it a "mutant" strain - so it's your bad luck, Glyn, for catching one of those mutants - not the fault of the manufacturers for making the wrong guess!!! In the same way as when somebody has a side effect from a drug, it is not the fault of the drug but the patient's fault for being "allergic" to it!!! Ho hum!

A flurry of snow here in the balmy South East yesterday. Log burner scheduled for a burn-up tonight!

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
Contact:

Re: A not so good start to the new year

Post by janbev » 18 Feb 2015 09:11

Well the blood transfusion worked like a dream - 2 days later he was off the pain killers, full of energy and feeling good. We got the referral to Kings and went down on Monday. Came away feeling much more positive, knowing that someone was looking at how to give him a better quality of life - train journey was tiring 3 hours each way and expensive. We go back on 16th March and have found a cheaper way of getting there (a third of the price) but I have to drive to Rugby first which is about 1 to 1.5 hours drive away - at least the price of petrol has come down.
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
Glynjo
Posts: 11
Joined: 20 Oct 2014 17:49
Contact:

Re: A not so good start to the new year

Post by Glynjo » 19 Feb 2015 22:18

Janet,

Good News with the referral to Kings - hopefully they will work with your local hospital. Good Luck and keep us posted. Do you use the MDS Facebook page?
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest