My husbands haematocrit level is being allowed to go way too high because they won’t let him go to clinic. Worried!

[Bailey1402]

He has been diagnosed with Polycaethemia 2004

He has history of emboli in lungs

He has aneurysms in legs/ aorta

Pacemaker

I’m worried that his treatment is on hold because of COVID 19....

Is this right?

[MsLockYourPosts]

Bailey - There is a lot missing in your question - current symptoms, worsening symptoms, and more. At the same time, only your husband's doctor can properly assess any treatment needed. If you are not comfortable with what you are being told, my advice would be to do whatever is necessary to get another opinion. I know that that is easier in some countries than others, and certainly hard during this difficult time, but doing so saved my life.

[Bailey1402 in reply to MsLockYourPosts]

Thank you for responding... a second opinion sounds good as they have stopped venesection.... and at a time they purposely lowered the haematocrit level at which needs to lose some blood. They lowered the cut off because he had clots in toes, legs .... they are finding it impossible to get blood out because it’s clotting in the needle!

Just worried that suddenly it’s “not too bad” (their words not mine)

[HAIRBEAR_UK]

Hi Bailey1402 thanks for posting, It is understandably very worrying about how the pandemic may change how care has to be provided to mitigate risks and prevent infection.,

You don't give much information, has your husbands treatment plan been interrupted or delayed? Has he or you been able to speak to his care team on a call?

The hospital will be making arrangements to ensure necessary treatments continue in the safest way possible for patients. If you both feel your husband is in trouble please contact your husbands care team to speak to them.

You can also speak to our nurse advisers after the weekend on 08088 010 444, or email [e-mail] to book a time slot to speak with a nurse.

Keep talking

Nick

[Bailey1402 in reply to HAIRBEAR_UK]

Thank you, Thank you for responding... they have stopped venesection which was becoming more frequent.... and at a time they purposely lowered the haematocrit level at which needs to lose some blood. They lowered the cut off because he had clots in toes, legs .... they are finding it impossible to get blood out because it’s clotting in the needle!

Just worried that suddenly it’s “not too bad” (their words not mine)

[HAIRBEAR_UK in reply to Bailey1402]

Bailey1402 thanks for coming back, yes an understandable worry I would imagine that they are very concerned of the risk in attending and catching the virus at this very moment, I can see you are concerned if levels are allowed to rise to where they were before. When would hubby's venesection usually have have been carried out and has an an appointment suddenly been cancelled,? IThere will be many cases where there is going to be a balance between differing risk from the clinical teams, I would contact them to get some deeper explanation that will aid you to balance risks.

You can contact a nurse our support or advocacy teams to help you with this after the weekend. Try not to worry, but keep pushing for answers

[Paul_Cabban in reply to HAIRBEAR_UK]

I hope you meant venesection not vivisection!

[HAIRBEAR_UK in reply to Paul_Cabban]

Auto spell check 🙁

[2003UK]

Hi Bailey, yes it must be a very worrying, uncertain time for you both. I have no medical knowledge, but I believe each case is being assessed by medical teams to work out, taking into account all patients medical conditions, what is safest way forward during the coronavirus times for the patient, but then that does not mean that the patient cannot discuss and ask questions of a member of the medical team. Personally from what I see on TV I would be very concerned visiting a hospital unless I really have to, although I believe hospitals are trying to segregate cancer units from areas of the hospital dealing with the virus. The Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Let us know how you both get on and how you are both doing. Take care and stay safe.