Pulmonary hypertension

[Sharon1315]

My 5 month old has just been diagnosed severe venous stenosis and lung hypertension. Just need to know if anyone has had a positive outcome. Just need an uplifting message. Thanks

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A was reading stuff on that myself am going to be seeing a phlebotomist myself over few issues i have .

According to reports read can be well managed .. do have to stay posative inportant thing is you have diagnosis thats all ways pluss with such condtions

Hope all go's well sorry ya kids so young .. wishing you well

[katieoxo60]

You must be very upset at the diagnosis for your child, have no experience of this specific condition. All I can say is my daughter was born premature with a heart problem , which incurred many trips to hospital pre school age but she leads a reasonable normal life , works and will be 50 in about 18 months time. So my fingers are crossed for you that with modern medicine and technology your child will lead a healthy life after treatment, take care look after yourself as you will need all your strength to deal with this, take each day as it comes and look forward to the pleasure of the time with your newborn child xx

[PollyP]

Ooooh thinking of you and how devastated you must be feeling, similar to

Katie who has replied to you...my son was born with a congenital heart issue and this was corrected by open heart surgery 29 years ago.. And when he was 17 he developed Pulmonary Hypertension with an SVC narrowing...the PH teams across this country are fantastic particularly Prof Tulloch...my son has recently, 4 weeks ago-had a stent to widen the narrowing in his SVC and is already feeling much better .

The Pulmonary Hypertension Association here is very good, with lots of info on their website..so sending lots of supportive love to you and your baby..pm me if you need to, and agree with Katie, look after yourself...your baby will need you fit and well....lots of love. P.

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I couldn't read your post and leave it without making a comment. I have no experience or advise but would like to send you lots of love and healing thoughts for your son. Perhaps the BLF helpline could advise you - You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. With lots of love and kind thoughts TAD xxx

[cofdrop-UK]

Hi Sharon and a very warm welcome to you.

I am so sorry to hear of your little one's diagnosis but glad you have a diagnosis early. I agree with TAD's advice to telephone the nurses at BLF - they are very helpful and supportive.

I was 5 months old too when I was diagnosed with bronchiectasis but it was my Mum who wouldn't give up and faught my corner to get both the dx and the treatment. This was at the start of the NHS.

You have a lot to deal with but you will be your baby's rock as you sound strong and proactive. I wish you and your baby well. Please let us know how you get on.

Love and healing hugs to your little one.

love cx