Transfusions

[skipperL]

I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus is great. It seems absurd to be isolating at home, and then exposing myself this way. Any comments from anyone - I cannot do without the transfusions as I have extremely low HB levels. SkipperL

[Helen1952]

Hi Skipper L

I'm transfusion dependant have to have them fortnightly.

I had mine today.

The unit I go to is away from the main hospital and I had to have bloods done there so as not to walk through the hospital.

The staff were magnificent if exhausted.

They have always gloved up and worn aprons.

Everything was in place to make me and them safe.

They should phone you first to make sure you are well.

At the moment the transfusions are keeping me alive.

I have MDS/MPN overlap a bit more MDS than I would like!

I hope you have the same experience and feel safe because the benefits of the transfusion probably outweighs the risk of getting Covid 19.

Hopefully you will be told what your hospital has in place.

Take care

Helen

[skipperL in reply to Helen1952]

Thank you Helen - I shall have to go anyway as otherwise I will fizzle out. Keep well

[Heidi-W]

With things having escalated since your last transfusion I'm sure all the staff doing patient contact now will have some form of PPE on. Sadly there has been huge issues with NHS staff getting appropriate PPE but they are now at the stage of protecting themselves from patients as well as vice versa so I'm sure precautions will be taken next time you go. I'm sure the unit won't mind you ringing to check on their new policies.. Good luck and definitely get the transfusion as you say otherwise you will fizzle out and then more prone to infection then.. good luck

[skipperL in reply to Heidi-W]

So nice of you to reply - I do hope they have the PPE and enough of it so they change between each patient. All the best to you .....

[Heidi-W in reply to skipperL]

Yes really hope they are well supplied and hope you feel energised after your next top up

[skipperL in reply to Heidi-W]

It’ll be in two weeks time - maybe the crisis will have lessened by then - although it’s not very likely!

[Heidi-W in reply to skipperL]

Depends which part of the country you are in but peak in London is expected about the 12th April so I think sadly things will have escalated more by then. I'm in the north west and work for the NHS and the easter bank holidays have been reclassified as normal working days to help with the expected demand surge that weekend.

Take care

[skipperL in reply to Heidi-W]

I am in London and go to a large central hospital - I don’t think I am allowed to say which one - but they are a centre of excellence so I am sure they’ve now got their act together regarding safety. I hope you keep safe - do you come into contact with patients?

[Heidi-W in reply to skipperL]

Ah thats good you are under the pros. I had to self isolate 3weeks ago with my daughter having cough and fever and as I'm on rux I do come under the extra vulnerable but haven't got the letter yet.. I'd reduced my hours big time 2yrs ago after diagnosis and having hip replaced so luckily they won't miss me too much. Just trying to work out with the practice what I can do to help from home for the next 12 weeks whilst I isolate. At the mo people are tending to not contact their GP over trivial things anymore but it feels like the calm before the storm up here. They are having a practice run with a pod in our car park today for assessing suspected covid cases in our town. I feel bad for not being able to help much at the mo but hopefully I can still be of use doing phone/video consultations etc. I think they are hoping I can be a support for the district nurses with dealing with the elderly and end of life patients, who will hopefully want to be cared for at home so their family can be with them rather than being poorly alone in hospital. Its all very strange and difficult times.

Please keep well and I'm so glad you are under a great team

[skipperL in reply to Heidi-W]

I am on Rux as well as Epo injections - I haven’t had the letter yet either, but I was told by my haemo dept. to enrol as extremely vulnerable (I am 81) on the gov. site.

I hope that if I ever get the letter I will then be able to get home deliveries of food - at the moment I can’t get on line with any of the big ones so my daughter in law is delivering essentials .

I hope your daughter hasn’t got the virus but just a seasonal bug- and that you stay well too......

[Heidi-W in reply to skipperL]

Thank you. Yes she's recovered and now its just a battle to get her to do some school work! Glad you have family able to shop for you. Luckily a friend is doing delivery to us each week at the mo and the milkman and butcher great too as like you I can't register yet for online deliveries. Stay safe and good luck

[skipperL in reply to Heidi-W]

😊

[mhos61 in reply to skipperL]

Hi skipper, these are especially difficult times and more so for some, such as yourself. I understand your anxiety and would just like to say, that I hope everything goes well for you. I’m sure the right procedures will be put in place and above anything else, your safety will be paramount.

Mary xx

[skipperL in reply to mhos61]

Dear mhos61 - thank you for your encouragement! SkipperL

[mhos61 in reply to skipperL]

Of course! Let us know how it goes. X

[skipperL in reply to mhos61]

Will do.....

[mhos61 in reply to Heidi-W]

Don’t feel bad Heidi, you have to remember whatever you do will be relieving the pressure elsewhere. Xx

[Heidi-W in reply to mhos61]

Thank you that's very kind of you