(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you're still alive! Hugs! Katherine

Hello All, I made it to Mayo (Minnesota)!!! My three flights to get here was an overwhelming expierence because I had to travel with so many carry on's...medications (46), bipap, portable O2 concentrator & my personal purse. I had wheelchair assistance between flights which was a God sent! I had wonderful people helping me to get through my day long travels.

I'm so excited & relieved to actually be here! I came in Sat. evening. My first appointment with Dr. Aksamit is tomorrow morning at 8:30am. I just got a review of the map & figured out where I'm going in the morning. I'm still very anxious about my time here...I feel I will be under scrutiny (& judgment, looked at like I'm a crazy mess!) but my husband pointed out, that I am under scrutiny, as I am here to be thoughouly examined & for doctors to make an accurate assessment which hopefully leads to a diagnosis which hopefully leads to suggested treatment. I still feel like I have butterflies in my stomach!

Right now I continue to work on my medical records, highlighting important pieces of information. I am almost embarrassed that I have so many medical records! And I actually only have maybe 10% of my records from over a 10 year period! I am also thinking ahead & worrying what I will do if they too can not find a diagnoses & what will I do from there! My husband points out that when I think that way I am not helping anything & that I am living in the future & not in the present, & that I can not let myself think ahead like that. He's right! So I'm trying hard to stay positive, keep faith & move forward, doing the best that I can!

I raised $3,611 (AMAZING) & need another $1,550! That was my first time using gofundme. I never would have thought of doing that but my friend encouraged me & wow, what a success it has been! I feel so supported & loved by my friends & family!!! Their are even donors that I don't know! What a reassurment that there are so many good people in our world!

So I'm assuming I will receive an itinerary tomorrow? Let me know your feedback or suggestions for my first day tomorrow! Thanks for all of your support! ~Jen 🙂

@jentaylor, I just now happened to see your post that you have arrived at Mayo. I send you my best wishes for a positive outcome. In the meantime, take comfort to know that you are in good hands! You are about to be wrapped in a complete and coordinated level of care that you will forever remember. Do not feel that you stand out because this is where people come from around the world for treatment of all sorts of conditions. Think in terms of one step at a time. There are wheelchairs and assistance everywhere if you and husband need it. Keep in mind that you are not alone. I, for one, will be thinking of you tomorrow.
Rosemary

@jentaylor Glad to hear that your trip went so well. Best wishes! Teresa

@jentaylor Jen, oh what a journey you have been on .. and you know I have walked every step of the way with you .. I have your back Girl .. so don't you dare worry and fret! You MADE IT! You are THERE!! Can you even believe it?! Now you just settle down .. have an attitude of gratitude .. KNOW that you are in good hands .. the BEST. Remember what I always say .. "Put your energy into what you can control .. and let go of what you CANNOT control .. the outcome!" You are where you need to be because that is where you put your energy .. NOW let go of the outcome! Absolutely LET GO of the SILLY attitude of " feel I will be under scrutiny (& judgment, looked at like I'm a crazy mess!" .. that is just about the darndest thing I've heard out of your mouth .. NO MORE of that stuff! I only want from you PRIDE of all you have accomplished .. PRIDE of where you are GOING! When I think of where you were when you came to our Forum originally .. and where you are now .. I am just amazed!!

I am SOOOOO proud of you! You DID it! PLEASE keep us all posted. I am so excited for you to finally get some answers after all these years of slogging along, I am sending both you and your husband LOTS of positive energy and Hugs! Katherine

Hi Jen....soo happy for you to be at Mayo and to be seeing Dr AKsamit and the other experts! Hope it goes well and you get the answers you have searched for.
See if they still do the Mayo Tour...interesting things to see and to learn the Mayo History. As time permits or after keep us posted.terriD

Jen you're in good hands up there. The one thing I wish the first dr would have told me is that when you get this schedule of tests/appts/blood work, you can go to the desk and see if they can get you in earlier. I had tests and appts spread over 4 days and was able to get all testing done within the first day and a half. Then I was able to get 1 of my 2 addl appts moved up. Which was nice because they ordered additional tests and I had pretty much freeded up a whole day (which was quickly filled with more tests). Everyone is very helpful. Just ask as you don't want to walk to the wrong desk to be told you have to go elsewhere 🙂 best wishes! Jill

@jentaylor and @jillnc, Jill .. Jen, Jill is SO correct! Pay ZERO attention to that schedule .. just go from one test to the next .. ask if you can get in .. it is AMAZING how quickly you can get them done. About the only ones you may not get moved is the Doctors .. BUT you can try! Good job Jill .. I didn't think to Tell Jen this .. thanks a lot! That is a GREAT TIP!!

Oh one thing I was told by someone who went to mayo was that if you need to leave on a certain date be sure to tell the first dr you talk to.  Doesn't mean all your appts and test can be done by then, but at least they'll know and can try to work with you.  I went on a tuesday morning and had to leave friday.  They wanted me to have a bronchcospy on monday and I told them no.  If I really needed one (which ended up I didn't need for various reasons after consulting with other drs at mayo and my drs at home) I would have it done at home and have the results sent back to them.  It's not the ideal option, but you have all kinds of options so as @katemn always says make sure you listen, as they are great teachers, but stand up for yourself too if you feel it's needed.  Sorry for the second post.  I was there in early Dec so trying to remember tips I wish I had known 🙂  on a side note there is a bar and grill in one of the kahler hotels nearest the hospital part that has fantastic food.  Peach cobbler was awesome!  Also in univeraity shopping there is a soup/deli place that has all homemade items (2nd floor near the tunnel entrance as I call it) supper delicious!

Jill I have to remember that .. bar and grill in one of the kahler hotels nearest the hospital part that has fantastic food.  Peach cobbler was awesome!   .. Yum! Hugs! Katherine