Emma's Corner

Dysautonomia News is now featuring "updates" from Emma Nicholson, a POTS patient in the United Kingdom.

October 16, 2004

Hi all. I have been in hospital for seven weeks now and came home today just for a few hours. I wanted to send you an email and update you on many things. I have some really exciting news, which maybe could help many of you.

As a lot of you know since I have had POTS I haven’t been able to walk at all. When I go to stand I pass out straight away. This has been going on for three years. The hospital stopped Physiotherapy and told me to get on with my life in a wheelchair and if any changes happened then that was an extra.

A few weeks ago now I was started on an Albumin transfusion. So much has changed for me. My blood pressure is staying stable and I am learning to stand again and then hopefully walk. Our bodies all make natural Albumin but with the condition POTS our bodies sometimes just can’t make enough to help keep us stable. They have put a porter catheter into my neck and down into my chest to give me regular transfusions. This will be taking place twice a week at the hospital along side Physiotherapy.

Right now things are great for me. I am very, very happy and hoping that this could be a break through for a lot more people suffering like me. This has made such a difference in such a sort time and I will keep you all updated.

Take care,
Emma

October 29, 2004

Hi Everyone!

Thought I would write an e-mail to catch up, as things have been all over the place with me. I’ve been in and out of hospital, but at last everything is settling back down!

As I told you in my last e-mail, I am now having an Albumin transfusion twice a week at the hospital. They have fitted an implanted port via my neck to my chest. The port is used to give them long-term access to a large vein so they have a place to give my treatment. I had my first treatment via the port on Monday, which was slightly scary but Thursday's treatment was much better. I guess I knew what to expect and didn't get so worked up about it!!!

My physiotherapy is going very well and so far I am maintaining a stand of about 2 minutes. I know that doesn't sound like much at all, but it’s such a great achievement for me. I was told to get on with my life in a wheelchair and finally I feel I have found some hope and something to work towards. I don't know how far I will get but even a small change is better then nothing.

It sounds strange, I know, but being in a wheelchair has done me good, as well, and made me much stronger. I guess because I am young I have always taken life and health for granted and always had the attitude of “it will never happen to me”... well it did and from that I have learned a lot and achieved more than I probably would have otherwise. Someone is always worse off than us. I know it’s sometimes hard to remember others when we are not feeling great; but when I have bad days I always try to maintain that thought.

Generally life is good and I'm feeling great. It's nice to be back to normal at home and no more hospital food at last!!!!!!!!!!!!!!!!!!!!!

Take care,
Emma

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