I know a few of you were keen to hear how I got on as I travelled from the UK to see Dr Kogelnik in Mountain View, CA. So here is my mini report on proceedings.
First and foremost, the city of San Francisco I instantaneously fell in love with. I stayed with a friend at the top of Market Street in a rented apartment. As someone who is training to be a barrister, I am now looking into the possibility of California Bar exams in case I take up Dr K's treatment in the USA and a semi-permanent move might be required. The location of our place did mean that Dr K was an hour away on the CalTrain but I am fortunate in that I am functional enough to get around such distances.
The appointment itself covered a lot of ground, particularly as I haven't ever consulted with an ME/CFS specialist before and my blood testing has been next to nothing until now. The staff, Gina (on the front desk), and Salina (nurse) were both delightful and got me settled in and signed down onto the system. My time with Dr K was around about 90 mins, punctuated by 10 mins where he had to go speak to someone from the media (I take that to be a good sign!). Those 10 mins proved the ideal opportunity for Salina to take about 12 vials of blood from me. This comprehensive panel will be in the region of $2000 for those who might be interested.
In terms of treatment options, Dr K offered me three scenarios. Each with pros and cons. One of these was to move over to Cali and be put straight onto the Rituxan, another was to start an antiviral and be monitored from afar as it were. As you can imagine, these decisions are not to be taken lightly and there are obvious cost implications as well. As I am about to start the last year of my barrister training, and am just on the cusp of being 9-5 functional as I put it, the decisions will finely balanced and in any event I will not be doing anything rash in the next couple weeks/months.
I realise that I have not been over descriptive with my actual consultation with Dr K. This is because I am sure you don't want to hear about my individual complaints as they are not overly interesting or indeed add anything to the community. What might be more productive is that if you have any specific questions, you can post them on this thread and I will do my best to answer them, bearing in mind I am no expert though as Dr K is.
On a side note, whoever on here said that the doctor might want my tonsils which are being removed on Monday was spot on and so once they are removed, I am hoping the Leicester Royal Infirmary will be packaging them up and sending them frozen to Mountain View. Apparently it's always very interesting when there is the opportunity to get one's hands on a live tissue sample from an ME patient.
First and foremost, the city of San Francisco I instantaneously fell in love with. I stayed with a friend at the top of Market Street in a rented apartment. As someone who is training to be a barrister, I am now looking into the possibility of California Bar exams in case I take up Dr K's treatment in the USA and a semi-permanent move might be required. The location of our place did mean that Dr K was an hour away on the CalTrain but I am fortunate in that I am functional enough to get around such distances.
The appointment itself covered a lot of ground, particularly as I haven't ever consulted with an ME/CFS specialist before and my blood testing has been next to nothing until now. The staff, Gina (on the front desk), and Salina (nurse) were both delightful and got me settled in and signed down onto the system. My time with Dr K was around about 90 mins, punctuated by 10 mins where he had to go speak to someone from the media (I take that to be a good sign!). Those 10 mins proved the ideal opportunity for Salina to take about 12 vials of blood from me. This comprehensive panel will be in the region of $2000 for those who might be interested.
In terms of treatment options, Dr K offered me three scenarios. Each with pros and cons. One of these was to move over to Cali and be put straight onto the Rituxan, another was to start an antiviral and be monitored from afar as it were. As you can imagine, these decisions are not to be taken lightly and there are obvious cost implications as well. As I am about to start the last year of my barrister training, and am just on the cusp of being 9-5 functional as I put it, the decisions will finely balanced and in any event I will not be doing anything rash in the next couple weeks/months.
I realise that I have not been over descriptive with my actual consultation with Dr K. This is because I am sure you don't want to hear about my individual complaints as they are not overly interesting or indeed add anything to the community. What might be more productive is that if you have any specific questions, you can post them on this thread and I will do my best to answer them, bearing in mind I am no expert though as Dr K is.
On a side note, whoever on here said that the doctor might want my tonsils which are being removed on Monday was spot on and so once they are removed, I am hoping the Leicester Royal Infirmary will be packaging them up and sending them frozen to Mountain View. Apparently it's always very interesting when there is the opportunity to get one's hands on a live tissue sample from an ME patient.
But that's going to run $30,000-$50,000 per year just for tuition.
