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Hard to handle diagnosis

EnchantressPain
EnchantressPain
11 Replies

Here is a little background information:

I am 37, never smoked or did any recreational drugs ever. In October 2016, I began to lose hair, weight, it wad hard to breath. By, January and movement at all would set me into a coughing fit. Finally, I could not take it anymore so I went to the emergency room. There a few tests were run and I was told I have pneumonia come back in a few weeks to get another chest xray! Took the antibotics and went back, gradually getting worse and worse. Again, was given antibotics.. speed up 8 doses of antibotics later... my joints are so swollen and ache I barely move.

The doctor finally begins to take it serious because my O2 level drops to 66. I am admitted into the hospital in the ICU step down unit for 6 days. Then transferred to a ward room. Were if I remain in my bed I am fine. Even getting up to use the washroom lowers my levels and I nearly pass out. Bu this time I am told I have inglammed lungs, spleen, lymph nodes, heart and liver .. they did more blood test then I thought humanily possible. Did scans and xrays and a bronchiscipy.

Only for all that to come back as "nothing". So, I am shipped off to Kelowna for an open lung biopsy.

Results: I have one of the rarist forms of lung disease there is.. NSIP

I try ask the Doctor questions, but he is clueless. Knows nothing about this disease l.

Now I being shipped off to Vancouver to see someone else.

There is nothing on the internet (surprisingly) about how to go on living with this disease. There are terrifying article's on how I may only have 2-13 years to live...

I tried to get my Dr to tell me if I have cellular or fibrotic or the mixed. But, He was not really very keen on giving a response :(

I feel as though I have been given a death sentence with no last rights and no reason why..

11 Replies
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Katinka46

I am glad you found this excellent forum. There are members with NSIP and hopefully they will be along with help and knowledge of the ondition. But all the members here are very supportive. Initially coping with the diagnosis is hard and the daily grind of breathlessness, chest pain, possibly frequent infections is gruelling. But we are resilient. Have a moan, we are good at listening, with virtual boxes of tissues and hugs, treat yourself as gently as you would a dear friend. You will cope. I hope that you have a good network of family and friends, and that you have confidence in your doctors.

All the best

K

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Ergendl

((((Hugs)))), EnchantressPain.

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sassy59

Welcome to you and l was shocked at your post and lack of support from doctors. That has now changed as you have found this great forum.

It's so hard to face such an awful diagnosis but you will be cared about and supported on here.

Take care xxxxx

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Salmo

Sorry to hear about your diagnosis (or lack of). This is one of major problems with interstitial lung diseases (ILD). It can take years to be certain what the diagnosis is and, in most cases like IPF, the cause is never found. Sould like you have already started reading up and my only advice is to find out as much about the disease as you can as so many doctors know so little about these rare disease. In North America you may be lucky and be able to get refered to so a called centre of excellence that most in UK can only dream about. Hope someone else with NSIP can help with detail. I have IPF so only know a little but have often looked enviously at life expectancy for NSIPs if thats any consolation. In meatime I'm afraid all I can offer are some links that may help.

Here is a link patients guide for fibrosis. The PF news site also has quite a lot of other info.

pulmonaryfibrosisnews.com/2...

There is also the Inspire site (US based) that has a lot of people with ILDs including NSIP and may be able to help

This is link to an article that should get you to the site - more about PF than NSIP though also has some excellent links and abbreviations

inspire.com/groups/living-w...

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jjnanna

Omg you poor kid . . . My heart goes out to you living with the uncertainty of what is next . . . As somebody who regularly gets low readings . . . 50 at times. . . I feel for you. . . Rest assured we here will help you through where we can and will no doubt all be looking to see if we can find out more . . . Some diseases hide which is why they found zilch to begin with . . . I had lung cancer and saw a professor who told me he knew I had it but they could not find it .. . .my friend who worked at his hospital said if he doesn't know something then it isn't worth knowing . . . Put your trust in them and rest and keep posting . . . Hugs x x x

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eccosse

Now that you have found this lovely bunch of people whom I would class as "real friends" you can come on here and know that at least you are being listened to

This forum is great for getting you up on your really down days believe me

I read everything posted here and am thankful that these folk ALWAYS listen and give advice

lots of hugs

eccosse

5 likes
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Hidden
Hidden

Hi I am sorry to hear about your diagnosis. I think to be honest your doctor doesn't know as s/he is not qualified or able to tell you what type you have. You said it is very rare. That is why you have consultants who are experts on this type of illness.

At least you have been diagnosed now and can start your treatment.

3 likes
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Ccupcakes

Oh you poor dear EnchantressPain.

It's a shock when you are given any dx that you aren't expecting, even more so when you look it up and get scared.

Take heart my lovely, there are people on this forum who do indeed have NSIP and I daresay they will be along soon to chat with you.

Keep posting, this is a wonderfully supportive forum and the members are lovely.

Chin up

C.c xx

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mrsmummy

Hello and welcome to the forum. You have some great replies here. Others have asked about NSIP and if you want to read their posts you will find them here:

healthunlocked.com/search/n...

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carotopgal

I can't add any more than what's already been said, but do know that we on this forum do care. Lung diseases are scary things and having a place like this to come to and talk to others is invaluable to all of us. I hope you get the answers that you are looking for to help you cope with this diagnosis. Hugs.

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Dmactds

Did a quick Google search and came up with this page of links and out of those I've included two more beneath that:

google.com/search?q=NSIP&ie...

radiopaedia.org/articles/no...

en.wikipedia.org/wiki/Non-s...

(..Point being, it seems to be a fairly well known and documented illness, so don't know why your docs came up short; the middle link above is for 'medical professionals' so it's been publicized at least to this extent. There seems to be two types, beyond that I have no idea but at least now you have a beginning of an information feed...)

Regards,

Duncan

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