A very warm welcome back the to the Kidney Club website. After giving it much thought, I have decided to continue with the website. The chats, which are currently on Facebook Rooms, will stay there. The website will be utilised in other ways and I also need to catch up on the podcasts.
One of those other ways, is adding kidney patients pages. This was originally called stories you may recall. I have always thought stories are important, but it made sense to turn them into patient pages. That way if another patient or carer, family member reads a story. It may well relate to them and they can get in contact through Kidney Club. Or simply by using their social media bottoms on the page of the individual kidney patients for example. Also we are all different as patients, with differing views. Debate is a good thing, new ideas also, we must not shy away from trying something different. Listening to fellow patients and not not drive debate under ground. Or, yet another report will come out with findings where patents feel ignored.
As extremely vulnerable patients, we know we still face tough times. Having been a patient for 44 years now, 25 of which as a transplant patient. I have had my fair share of issues over the years as a kidney patient. But as with any issue we face as a patients, we are all different, on different treatments, as well as different medications.
For example I am on the old Cyclosporine regime, many now will be on Tacrolimus or Alport as it’s often called. So, in my own head I am thinking what factors will be affected by the vaccine? Obviously our age, weight and bloods are all a factor and much more. Vital therefore our consultant in my view, is the most important person to speak to right now.
There will and has been, much talk about immunosuppressed patients right now. There has been all kinds of information flying around since Wednesday (7th) where a journalist clearly got wind of some changes coming from government. I suspect therefore, we will know more on Monday (12th)
So, back to the consultant they will be the ones to take information from. Because they know you, they know your blood results and much of what is put out in the public domain will always be a generic response. No one can really give you a direct answer, because you are not their patient. So, my advice will be use the experience many of you will have already and combine this with speaking to your consultant.
Then for wider support patients can use the charities, groups and of course Kidney Club to chat to others. I think what Covid has done for me as a long term patient, is underline just how vulnerable we are to a virus. It’s easy to forget, it’s completely natural to want to be like everyone else moving forward. It will be tough over the coming weeks, feeling left behind. So, it’s its vital we all try and help each other.
We all will know there are still many unknowns we simply don’t know about. Vital therefore, that we stay safe and take precautions to protect our health. That we don’t sit in silence and give our honest opinions, it’s ok to have an opinion. We have all been through too much to stop protecting ourselves now. Take care, stay safe and welcome back – Stuart