Booster

[Dot1958]

Hi all- were very new to this disease. If my partner is called for covid booster is it safe? We’ve been told to lockdown for 3 months because he’s ‘immune suppressed’. I would ask GP but find it too stressful trying to get anywhere with them. Thanks in advance

[May7]

Hello again Dot, the booster is safe, and particularly important for all of us who are immune suppressed. I know what you mean about the stress of trying to get anywhere with GP surgeries. If Keith needs advice or reassurance about anything, then tell him to ring his consultant's secretary or specialist nurses. They are there to help guide their patients through everything, whether it is the disease itself or covid. Best wishes.

[Dot1958 in reply to May7]

Thanks for that. I honestly don’t think he’s got a specialist. Since coming home from hospital the onl place he’s been is renal department for dialysis. I’m sure they said they were testing blood for vasculitus on Thursday gone. Thanks for replying. It makes me feel like people do care xx

[May7 in reply to Dot1958]

In your first post about Keith you mentioned that a consultant had diagnosed vasculitis, and someone had put him on prednisolone etc- was this the same one? So somebody has been sorting him out apart from or as well as, the kidney problems. Hopefully he has a discharge letter and other letters concerning his treatment. There should be a phone number for the department. When I was diagnosed with vasculitis, the consultant gave me a number for specialist rheumatology nurses, and I was to ring them if I had problems or questions. There's also the consultant's secretary to ask, and in either case they put the problem to the consultant and then they ring back. I needed to do this recently when faced with a question about my third jab, and a nurse rang me with the information. I'm very lucky in having this expert advice on the end of a phone, but it took several months to get there from my first symptoms, via the GP and Chest clinic, before my blood was tested for vasculitis. If Keith hasn't got this far yet, don't worry, just get him to try the people who have already helped him, and hopefully they will work out who his consultant is. I hope all this makes sense!

[Dot1958 in reply to May7]

The consultant at the Freeman renal unit said vasculitus. And yes same one who advised lockdown for 3 months. We’re now at Cumberland infirmary and I’m not sure if they have vasculitus specialist. The nurse or registrar did tell me they were testing vasculitus via bloods. To be honest I haven’t a clue. And poor Keith is very confused so doesn’t remember anything when he comes home 😔. Suppose I’ll just have to rely on them. Thank you for your help and concern. It really does mean a lot xx

[tom21 in reply to Dot1958]

I have vasculitis and see Dr. Fiona Dallas who is based at the Cumberland Infirmary. She is very nice and helpful.

[Dot1958 in reply to tom21]

Thank you. Nice to know there’s someone there xx

[2013mayo]

Hi,Why have you been told to lockdown, I understand your husband is immune suppressed but so am I and my husband, my husband has no antibodies for covid 19 and has common variable immune deficiency so really is at risk from covid or any other virus, yet he’s not been told to lockdown.

Just read about hubby’s kidneys, sorry that explains the situation, my apologies .

X

[Dot1958]

The consultant at the hospital said we’ve to lockdown for 3 months on discharge. It’s not doing me any good!! My stress levels are thru the roof 🙈🙈🙈

[Main1234]

Can understand your consultants advice due to high levels of Covid and your husband having dialysis. We went into shielding last March and we have got used to a very restricted life unfortunately. I gave up work to protect my partner. I go out for long walks and we meet people outside. We use click and collect and wear FFP2 masks.

It will get better just hang in there.

Keeping safe and well at the moment is a priority and you will find your own way through it .

[Dot1958 in reply to Main1234]

Thank you xx

[Investigator1]

Hi Dot, initially it sometimes is a bit of a blur sorting out who is looking after you but it will happen. I was diagnosed 2 years ago and it took a month or so to fall into place and for me to understand how everything worked. I am under a Renal Specialist still but I have no complaints at all. As far as asking you to lockdown, yes it’s true we have all done that but things have moved on a bit, by being careful and having vaccinations etc I have found life semi normal now. It will get better. The people on here are wonderful people, you will find this. They have helped me through some dark and difficult times.

[Dot1958]

Thank you. Sounds reassuring 😊

[metalback]

The only time you need to worry is if your on rituximab. Then the jab has to be coordinated with the infusion. If in doubt talk to his consultant

[Dot1958 in reply to metalback]

Thank you