[Bobbie Brown]

I am forever grateful for this forum. I am sitting in the hospital not even 1 year into my diagnosis of my ILD and I am most assuredly facing lung transplant, as all the doctors who have seen me at my latest admittance (I was admitted Monday and it is now Sunday) have mentioned that it is the next step, an inpatient referral for a lung transplant. I am 41 and live in West Virginia. I am currently researching my best options, even without the referral as of yet (is this premature, or smart, am I driving myself crazy, I don’t know).  I just know I am thankful for this forum as a place to learn and reach out for help.

 

[Bobbie Brown]

Vishal thank you for reaching out and creating this topic. I have recently been experiencing a decrease in my oxygen saturation. I was diagnosed with ILD in July of 2020. I had Covid-19 the last part of November 2020. Since the Covid I have been struggling with desaturation at 5 liters at home I would desaturate to 50 on my pulse oximeter. I am currently in the hospital. I have received 3 doses of 500mg of methylprednisolone via IV. I  am a bit better, but am still trying to find the right balance between what I need and can live with at home. I will look into the Beteyko Breathing method Mark mentioned.  I have been so exhausted and unable to participate in family life (cooking, chores, crafting etc…) I hope I find my answer soon.

Bobbie

[Bobbie Brown]

Char,

I’m currently sitting in the hospital again. I was given my initial biopsy results  they were inclusive for a positive ild/ipf diagnosis or cause. They are going to do a open lung biopsy which is more invasive but does have better test results. Hopefully I will be able to have it done tomorrow ? ?.  There is one thorasic surgeon here at this hospital who could do it,  or I would have to go through the other hospital in town with a whole consulting process and everything.  I’m really hoping they can do it here . One plus is they have talked about pulmonary rehabilitation so I’m excited to get that started so I can regain some of what I’ve lost and some of my new normal.

[Bobbie Brown]

Thanks Char and Karen for you advise and responses! Today I decided to go back to the walk in clinic. My o2 sat dropped to the 50s on Sunday while preparing for a shower and again last night while getting ready for bed. All while on 2 liters of o2. I decided I had waited enough and was definitely not getting any answers or any better.  They wanted to admit me to the hospital for more tests. Hopefully I will get some answers and a treatment course this time around.?