u/Kindly_Maybe_2059

Man what a roller coaster we are on.
My dad finally made it onto the list after 4 years of severe IPF.
He’s been in the hospital two weeks and just made it on the list 48 hours ago and had a donor come through
12 hours later, all the excitement, anxiety and the doctors called 1 hour before his surgery to cancel to due the lungs have severe pneumonia.

My dad accepted it very well and said “thanks for being thorough and I just have to go with the flow, because non of this is in my control”

Trusting the process and really praying the right lungs come through for him to get past all of this.

He deserves to be healthy again. 🙏🙏

Share your good experiences of getting your quality of life back after single lung transplant when you have two bad lungs from pulmonary fibrosis

Tell me the positive about living with 1 new lung?

He has 20% lung capacity left and they only approved him for one lung transplant because they said his heart isn’t strong enough for the double and I’m just curious what’s everyone’s experienced about

My dad has had pulmonary fibrosis since 2022 and has overcame so much with a positive mindset.

This disease has taken everything from him and progressing very quickly and he’s now in the ICU and they are trying to escalate testing urology and neurology and that will be the last test for him to be on the list.

Feeling very hopeful for him to get a second chance. 🙏♥️

My dad is declining so quickly. I would never even know how much he’s struggling if it wasn’t for my step mom filling us in.

He sounds completely normal on the phone. We were just there last month hanging on the porch with him and this month he can’t even get up without losing all oxygen.

He’s also been in two weeks of back to back testing for transplant..today they we’re supposed to get the news on if he was approved but now they want to do one more test MRI of his heart..

He’s running out of time and I’m afraid the end is near .. I’m very conflicted because he doesn’t know that we know that he’s struggling this bad since my stepmom‘s been filling us in. And he plays off like everything‘s fine when we talk on the phone because he doesn’t want us to see him like this.

My siblings and I want to help but if we come into town he will end up over doing it trying to act like he’s okay and my step mom will over do it with hosting and just seems like it would add more stress to them right now.

Idk what to do.

If I go in a will be an emotional mess seeing him like this and I just don’t think he needs that energy
But at the same time if the end is near shouldn’t we be there for him..

I went in for an ultrasound yesterday and they did it externally and internally.
I told them my left side is the side that bothers me the most.. whenever she moved the wand to that side I could feel more pressure than when she was on the right side

Today I woke up in significant pain on that left side..
Something has to be going on.
Hoping for answers soon

My dad was diagnosed in 2022 and he’s had a lot of up and downs and has always kept such a positive attitude.. like truly blows our mind how he overcomes so much with his positive attitude.

But now after 2 strokes, losing his job and his lung disease progressive quickly this year he’s really struggling mentally but really doesn’t like to show it.

I live 3 hours away so I come into town only once a month on the weekend

Last time I was there he was on 3L of oxygen at rest and now he’s up to 12L at rest with my step mom having to plug in two machines when he has to get up to go to the rest room she has to get him on 25L.
She said it’s progressing so fast and he developed the IPF cough that has been miserable for him.

She has so much anxiety at night with him coughing and thinking he’s choking or running out of oxygen.

So scared for him, sad for him that he’s struggling so much and nothing I can do to help.

Last year I had a an appointment with my primary doctor to tell them about how I’ve been feeling, and I thought it was thyroid or hormonal issues when my doctor mentioned it sounded like endometriosis, and she set me up with a referral to a gynecologist..

Welllll I pushed it off for a whole year

Finally called to schedule and the next available was 4 months. Which was today

The doctor immediately said “ if you’re having pain and heavy bleeding well then what do we do about it? Birth control. To slow the bleeding, will slow the pain” she said if you’re bleeding heavy and you’re in pain, then you have to do something about it and what is that it’s birth control

I immediately looked a bit discouraged.

She asked me when the last time I was on birth control and I said 2008 and I had a really bad reaction to it was bleeding even heavier and was depressed from it and she said that birth control has gotten a lot better and then I need to pick one

I mentioned the doctor saying it sounded like Endo
She said “if it’s Endo or some kind of fibroids in there then guess what they’re gonna do? intervention first..which is birth control and if that doesn’t work then surgery, but they are not going to do anything until you try something”

Luckily, She ended up scheduling me an appointment for an ultrasound with the hospital.

My boyfriend got on Whatnot without knowing much about it and spent $150 on random cards 🫠

My dad has had IPF since 2022 and it’s progressively getting worse. He’s currently trying to get back on transplant list.
He’s been watching Lee @lifeandbreath on YouTube and now he’s looking into Laser treatment.. has anyone had laser treatment? Please share your experience with it