Help decoding doctor's letter

[Inamoment]

I have pah. This arrived today, no clue what it means.

Not suitable for selexipag given the complexity of uptitration and engagement needed

[Katinka46]

Neither have I. You are surely entitled to an explanation. Which is the PVDU

that sent it? Would your GP be any help?

K

[Inamoment]

From the brompton. I rang the resp dept at chichester but they are out apparently, ring on monday.

[Katinka46 in reply to Inamoment]

Good move. So it’s a respiratory consultant from Chichester that referred you to the PVDU at RBH. . S/he should explain it all. Do you have email access to them? Or their secretary?

[Inamoment in reply to Katinka46]

Chichester referred me to the brompton a few years back. I'll wait until monday as the chichester guy was supposed to get some info from the brompton for me

[Aingeful]

Most of the initials can be Googled,I have had to do it often!! PAH is Pulmonary Arterial Hypertension. One of the other words is a drug,just Google each one. There is also a site which deals with medical initials,why they cant write plain English I dont know!!xx

[Gary56]

answers.com/Q/What_does_upt...

“There are some medications which require a slow increase in dosage in order to reach therapeutic benefits using the last amount of medication possible. Uptitration refers to when the dose is increased to the next level.”

[Inamoment]

I actually know all that. What does engagement needed mean? Are they saying something about my attitude or that they can't be bothered?

[Inamoment]

Ah well. The brompton want me to go to an appointment in southampton because it's a joint clinic. It's 50 miles and isn't going to do me any good, it will be a struggle for me even with hospital transport. I've not been told why me being there helps, they have scans and other test results.

The letter also says to be reviewed at southampton shortly. I think they are having a dig at me. I was asked a while back if i was ok to go into hospital for a few days to get the selexipag dose right in soton or brompton, i said yes sure.

I'll see if i can sort this out on monday

[skischool]

If you have the patience to wade through this and open a few documents within it may give you some indication of what they are talking about.

england.nhs.uk/commissionin...

i think basically their team need a meeting to discuss what to do.?

[Inamoment in reply to skischool]

The letter was the result of a ph mdt meeting. Most of the single page is a list of blood tests and investigations without a single number filled in. They won't know the blood test results unless they have specifically asked st richards. I don't think the brompton or southampton have access to my chichester data. I think

[Inamoment in reply to skischool]

Fun article. I need to speak to them, ideally on the phone

[skischool in reply to Inamoment]

Should be interesting to find out what they have planned as they don't appear to say what treatment you are suitable for?

[Inamoment in reply to skischool]

There are three treatments for pah. I'm on two of them. Sexylegs is No 3 and replaces a syringe driver. There's only 2500 of us. My gp said We've got another pah patient, that makes two of you

[Inamoment in reply to Inamoment]

It only puts off the inevitable, the pills are equivalent to titanic deckchair arranging