Hi all, I wanted to reply that I have never gone to Mayo but have always wanted to. When I was acutely ill & not expected to live, I looked into Mayo to do their 5-7 day workup exam which hopefully leads up to a diagnosis or gives us enough info to move forward with. But when I called, I needed to pay the money out of pocket in advance. I currently have Highmark BCBS & I'm on Medicare, medical disability. I'm not sure what their financial policy is now. I went ahead & went to Mayo's web page & clicked on "appointment request". It's says they will contact me within three business days. I reviewed the financial assistance form & feel confident that my case might apply to be given assistance. The income on our taxes records seems like we should have enough money to pay but the money I spend every month on medical expenses & such, completely deplete our $ for the month (after paying bils). I am an RN & worked for 12 years before getting ill. I miss having an identity other than a "sick woman". I also miss the income. But it's just not possible to work nor do we have confidence that I will ever be able to return work again due to my undiagnosed lung condition & cvid (common variable immuno deficiency).

I found flights from State College, PA to Mayo for $352 R/T! I think that's a great deal. Still would need to pay for a hotel but after reading all of your posts & Katherine's kind reply, I feel driven that I must be seen by physician at Mayo!!! Some how, someday!!! I just have! I don't mind starting treatment Mon/tomorrow but I still want to be evaluate at Mayo!

Since tomorrow is day #1 for starting abt (antibiotics) I'm wondering what the best schedule is for taking the abt. I look through the posts & it sounds like: take all three together at bedtime (2 hrs after eating) on M, W & F. Please, please correct me if this is not correct! I still need to purchase probiotics. I may have to start the abt without the probiotics until I can get them.

This MAC/bronchiectasis diagnoses came after a long & arduous 10 years of being so ill. It's a bit overwhelming but I think with your support, speaking from what you know to be true, I think I can better do this more so now, than before I stumbled upon your group. I am feeling so thankful!

If anybody thinks hearing more of my background might be helpful, let me know. I certainly don't want to bore anyone. Nor do I want to make it seem like I feel sorry for myself & need to tell everyone. Because I've been so ill for so long & I don't have a lung disgnoses, people don't know how to react & I'm sure it seems almost made up. It is very easy to question how somebody is so sick for so long without a diagnosis?!? It makes no sense!

My poor 12 year old daughter, Emma, is emotional scared because of my illness. It started when she was 3 yrs old. I had to stay in the hospital for months at a time. She would visit, crawl into my bed with me & want to stay there. Then she would eventually have to go home & she would cry so hard & I could hear her cry all the way down the hallway. She than became mute from all of the trauma. At age 5 we sat her down to prepare her for my impending stealth. Then somehow, I made it through!!! It's been a long tough & sad road for her. She has really struggled & still does. 2 weeks ago she was talking about hurting herself. She started therapy & medication & I think it seems to be helping some. I pray & pray & pray for her! I think if I didn't have her in my life, I would have given up years ago. But because she is here, counting on me, depending on her mom, I fight like crazy to stay alive. I have hope which is the only way that I get by.

My relationship with my husband is so strained from the illness. For 5 years he was my caregiver & since then we have never reverted to an actual married couple. It's very difficult. All my relationships are alteremed because of my illness. It really sucks!!!

I would love to see a Mayo specialist first but that could take a while before I actually get an appointment, if I can, & I worry about delaying treatment because of reading people's experiences of what happens when you wait to treat it or if it was not diagnoses until much later into the disease. My lung diseas has not been MAC all along. But I'm sure it's the reason I have gotten sicker again & in was in the hospital in May & September & declining. Anyway...I've gone on long enough. Sorry this post is SO long! I tend to always have something to talk about or learn about!

Again, I can't say this enough, thank you so much for being a support & a guidance & a listening ear along with providing great first hand information! ~Jen 🙂

<br><br><br><br><br>Hello Jen! That is a good price on airline tickets. If you decide to drive, <br>my home is open as a stopover for those traveling to the Mayo. It would break up <br>the long trip plus comradery. I live 2 1/2 hrs from the Jacksonville Clinic (in <br>Hilton Head S.C) Medicare does pick up 80% of the bill. (I don't know if that <br>varies from state to state). You can pay on a payment plan as well. Please do <br>not let cost stop you from getting good care. Terri M.<br> <br><br>

Hi Terri, Thanks so much for your reply! I'm thrilled to hear that Medicare pays 80%!!! That's excellent news! ~Jen

Hi Jentaylor, I recently joined this group too and they are wonderful. Katherine is the best in terms of helpful information and support. Keep the faith. I struggle with NTM, bronchiectasis, SIBO, fructose and lactose intolerances. I have learned to take it one day at a time and focus as Katherine says on what I can control. Yoga, mindfulness exercises have proven helpful for me. Hugs. Rosie