Newly diagnosed - PPH

I have only been diagnosed by Hammersmith for a month and have to go back as day patient on the 10th August. 

Hi Sherry and welcome.
I think we are all scared when first diagnosed so this is normal.
I forget everything so set alarms, write lists, and leave notes for myself on my phone - def the medication that does that. As Lynsey said don't worry too much about the walk test - they need you to try but if you can't get very far it still gives them the info they need.
I had to go for interview at job centre re incapacity but the staff were really understanding - it's necessary because of people claiming falsely.

Hope all goes well on Friday for you. Let us know how you get on.

Take care, Nic xx

Hi Sherry and welcome, you are defintitley in the right place.

I'm Stacie and I have secondary pulmonary hypertension and have done since I was 11 so back in 2001.

I wouldn't worry too much about the 6 minute walk test I haven't been able to finish one in about 4 years. You do as much as you can do and if thats only a minute then thats fine.

In regards to the Revatio I have been on it since 2009 and I haven;t found it's made a difference but my case is fairly advanced and it's working with my Bosentan to keep me stable. There are people that have found it can take a few months to work so that could be the case for you.

I claim ESA and DLA and Mike Jubb helped me out with this he's the social worker person with the Hammersmith so maybe when you go to Hamersmith next time you can ask him for some help. I probably wouldn;t have even applied if it hadn't been for him.

If and when you think of questions never be afraid to ask them.

Let us know how you get on and good luck
Stacie xoxo

They just watch you on the walk test and take you blood pressure and oxygen levels before and after the test, and they constantly ask if your feeling alright and if you need to stop. I think they'll say to you to stop when you feel you need to, someone correct me if i'm wrong but unless you get to 6 mins it will be you who decides when you can do no more.

Sherry, what you need to remember is that you will now be getting treatment for your condition.  You have just been diagnosed and the doctors need to assess you so that they know what they are dealing with.    You are in an awful place at the moment, but as soon as the doctors have assessed you, they can decide on what they need to do for you.

The only input I can make is if you aply for DLA, send as much information you have to hand, be honest when filling in the form, take your time, fill it as if you are experiencing your worst day, and take a copy before submitting it. It does take a while to get our head round your diagnosis, but you are the right track with this website. Have been in your position as have many others on this web site. You will get much support from this forum.

Hi and welcome to the site
Like you I felt awful when first told I had PH. I realised I was really ill but now can take some comfort from the fact that I'm at last in the right place and they are assessing my options (I'm not on any meds as they think these will make my type of PH worse!!)
My son came up with a good idea for my meeting with the consultant which I so wish I had used - I use an iPod touch for Internet etc but also is able to record things!! I so wish I had brought it in with me and recorded the consultation as I'm sure I only picked up half of what was said! I certainly will next time.

Try not to panic - easier said than done I know but keep positive

Sue

Hope your appt tomorrow will go OK and you get some answers, dont worry if you ask the same thing twice if you cant remember the answer they are used to it.  On my first 6 minute walk test I managed 31m in 2 mins, you can stop at any time and as many times as you like. 

I can see I made the right decision joining this group.  You have all been so welcoming and friendly. I am going to try and get my head round my list for tomorrow and will post what I discover after my appointment.  Hopefully I will be home tomorrow night and wont be kept in this time!  (Going to take an overnight bag just in case).

Hi Sherry, welcome to the forum, I am 48 years old with a hubby(married 27 yrs)and 2 sons, I have been diagnosed with Primary Pulmonary Hypertension on 19th July 2012, so very newly diagnosed.  I am still trying to understand it all and it is a bit scary, I am on Warfarin and oxygen at night and during the day when walking around, I am waiting for an appointment for Royal Brompton.  I have found this site and the facebook page really helpful and friendly.