Visits to doctors or specialists..

[Kwenda]

When you go to your doctor, oncologist, haematologist or even dentist, do you take your medical records with you.?

When you go for the 3 or 6 monthly blood draw and then go back for the results, do you take the last two or three sets of results, so that you can see the changes.?

There is a great danger when a doctor makes a recommendation for a treatment when he knows only a part of your particular problem. Also when you visit your doctor the normal person you see might be on holiday, and you have a new face who knows absolutely nothing about your history.

OR, do you just rely on reminding the doctors / dentists each time you visit by telling them you have CLL.

Have you used the free download papers from CLLTopics.org that enable you to fill in the results and print out either a sheet of results or a graph.?

Should all of us be using patientsknowbest.com/ so that all our consultants have access to all our individual records.?

Dick

[Cllcanada Top Poster CURE Hero]

Hi Dick

I'm fortunate to have an integrated computerized medical record system, so all information is available on line to all my physicians, including dentists... This induces all diagnostics and labs, scan results etc. Wonderful charts, for CLL progression, by the way...

Currently the system, is not available to patients, we must request paper copies, but in the near future all records will be available to patients as well...

I will often ask two different doctors to go over lab results, for example, interesting the slight variations in interpretation and emphasis... between my GP and hematologist.

Initially they were privacy concerns but these have been shown to be unfounded, and while there is always a a risk of system compromise, like online banking, the benefit of the system outweighs any risk by a wide margin.

Clearly this is the way of the future...

~chris

[pilch]

When I phone the surgery to see if my blood test results are in I ask for a photo copy ( costs me about £1 .20 ) which I then study before seeing my GP or consultant so I know what to look ou for or question.

[AussieNeil Administrator]

Hi Dick,

You've raised some very good points for discussion.

My haematologist arranges for a copy of my blood test results go to my GP. Both have all my results on stored their local computer network, but in Australia, we are only just beginning to work towards the integrated system that Canada has. I pick up my results from my GP a few days before my haematology appointment, drop them into a spreadsheet similar to the CLL Topics example and look for any changes or trends for discussion at my appointment. Prior to the appointment, I extract a copy of the graph plots into a pdf document and then email these to my haematologist and we can look at them on screen during the appointment.

In Australia, we have a public health system similar to the UK and Canada, but private services are also available like the USA. Depending on your condition and where you live, you may find the best services in either system. I'm using the public system for managing my CLL and as is the case in the UK, you do not get a choice of who you get to see unless you go private. In four years of haematology appointments every one to three months, I've only ever seen the same haematologist, but I know of another CLL patient at a less advanced stage that doesn't get that continuity.

By the way, I highly recommend anyone that is at an advanced CLL stage to use the CLL Topics template:

clltopics.org/YourCharts.htm

After you've established a year or so of results, you get a good understanding of your baseline levels and what level of variation is normal for you, plus you get to see any trends. I've noticed that here - well at least in my presence, clinicians pay more attention to recent results - emphasising the positives, rather than in long term trends...

Regarding dental visits, for regular or non urgent ones, I time them for shortly after blood tests so I know my level of immunity and can put them off if necessary. I also have spare blood test forms for use if I'm not well - I don't need to see my doctor or haematologist beforehand.

In contacts with other health professionals, I find it is best to look after your own interests by clearly communicating that you have CLL and reinforcing relevant factors (immune compromised status, skin cancer risk, etc). You can't assume they are familiar with the particulars of every condition they come across.

Neil

[Mikey47]

Hi, yes I have all my blood results recorded on a spreadsheet since diagnosis 3 years ago.

[jangreen]

I get a copy of my blood test which helps me understand what my Dr is talking about and gives me a guide as to how my disease is progressing.