[dennis-h]

I was diagnosed in the Summer of 2020 with interstitial lung disease (ILD) after 9 months of a dry cough. As my breathing worsened, my pulmonologist started me on OFEV in Aug of 2021. Being able to manage the side effects, my condition was fairly stable thru 2022 and I could function without oxygen (except during sleep) and able to “catch up” on any shortness of breath. However, in Dec of 2022 I apparently experienced an exacerbation event and everything went south. Today, my lung function is at 34% and I’m on oxygen 24/7. My pulmonologist told me that I wouldn’t make it to the end of this year without a transplant. I’m currently completing the evaluation process for transplant at Mayo Clinic and hope to get accepted. I know this disease affects everyone differently but for me it looks like a 3 yr journey. I hope your husband gets some encouraging news at Mayo. The people there are great and really seem to want to help you.

dennis

[dennis-h]

Thanks Kim for this most encouraging info. Just so happens I self referred to them this past Monday and I received a call from Dr. Baz, one of their transplant surgeons, I think. He needed films/scans of the heart cath I had at Vanderbilt. He seemed genuinely concerned about me and my case. He said “I didn’t want your referral to fall thru the cracks”. Regarding the heart issue, I didn’t know I had any blockage until the evaluation I went thru at Vanderbilt and I do not have a LAS.

[dennis-h]

Thanks Kim, sounds like your husband’s situation was the same as mine now. The only difference is my age, 74. I will definitely check them out. I live in North Alabama and certainly could easily relocate.

[dennis-h]

Thanks John…

[dennis-h]

Alan, good luck on your evaluation at UPMC. I think I’ll try and get referred there as well.

[dennis-h]

Thanks everyone for all the information. Since I originally posted Cleveland Clinic notified me that the risk for my transplant at my age was too high for them to take. I was referred to Duke but haven’t heard from them yet.