August 2, 2011 I made the journey to Mayo Clinic in Rochester. Scared, alone, flying for the first time, I was going to hopefully find out what the fuck is wrong with me. As most of you have read I have been through the ringer for the past few years. Getting sicker and sicker, misdiagnoses, lots of medication, tons of doctors. My husband and I decided a few months ago that Mayo was out last and only hope. A doctor had told us to go and found out what the heck was wrong. That i was being ‘treated’ long enough, and no one knew what i was being treated for. Ok so im rambling. Anyways i made my journey August 2nd.
I was staying in a small hotel apartment that worked out great.I arrived to a beautiful bouquet of flowers sent to me as an encouragement to me from my online best friends The Owls. Man i love those ladies. And boy did i need to see those flowers when i got there. The hotel was about 5 blocks from the clinic and provided a shuttle back and forth to many places, catering to the visitors that came for clinic treatment. August 3rd was my first day of appts. I started with an early morning allergy testing and a Spirometry test. Then later in the day I would meet with two drs. One an allergist and one a ENT. I see the allergist who is very stumped by my story but intrigued. HE decides i need to see a pulmonary dr and do tons more tests. I quickly see an ENT who is thoroughly amazed by the work my established ENT has done. He writes me off, which i expected, because my ENT is priceless. Testing would concede of sputum tests, induced sputum tests, PFTs labs, another kind of breathing test and blood work. Sputum test 1 was i had to carry around two small containers and anything i coughed up i had to spit it in there and return it in the morning. Sputum test 2 was a series of things i did, take a breathing treatment, clear my mouth, blood into a machine, then cough as hard as i could, whatever came up, spit it in a test tube. This was a 12 minute long test. But the staff was so much fun and so nice and really put someone at ease. I had a breathing test where i was closed up into a machine and had to do a series of breathing techniques, then ended that with being tested while i climbed stairs at a certain pace for 3mins. Then i went to do this other breathing test which was rather fun and cute. I sat in front of a animated computer screen, on the screen was a little girl in a hot air balloon and sunshine. The beginning of the test i had to breath hard to make the sun rise into the sky. Then i had to keep breathing and keep the girl in the balloon in the middle of the screen by using the force of my breath. She had to stay as much in the middle as possible. This registered if my airways spazzed while trying to exhale. As much fun as it was, i sucked at it and had to do it like 7 times. But in the end they got the results to test.
Later in the day i was asked to see the pulmonary department. I went right over there and they got me in the same day i needed. The Dr. was thorough but clearly told me that i was not having a horrible issue with my lungs. That it was somewhere between my throat and my lungs. I had to get a Chest xray and CT. Which i had fit in the morning earlier. He told me his suggestion was a strong steroid wean and then to see how things were. I was devastated. I felt pushed away. Felt like once again in my life i was basically being told that i was screwed the rest of my life and deal with it. I ran back over to the allergists office after meeting pulm and he wasnt available yet. So i was told to come back the next day. And i did……..
The meeting the next morning i had hoped would be great. With tests results in and lots to learn. Once again i was very disappointed. This was a friday and i was told that not enough of my results had come in yet. That there was not much to be said. Except that it looked like i might need to consider seeing this Rare Lung disease Doctor in Colorado. Here i thought “oh great, another dr to take my money and pawn me off”. But as Dr. Maddox started to complain that some of my test were leaning towards a rare lung disease that practically this other dr only deals with. He said over the weekend he would contact the dr personally and see if there were thoughts on what to do. So i leave very sad.
The weekend came and i got the best surprise ever. One of my longest best friends whom moved to MN like 3yrs earlier decided her and her family wanted to drive about 3hrs to come visit me. I was ecstatic. Over the moon. The came and stayed in my apartment with me, provided me with some food to make it through so i didnt have to buy every meal out and then took me to Mall of America. Man that was so fun. Spending time with my friend really renewed my energy and will to push on. I miss her dearly and hate that this was how i got to see her again, but blessed as to how much she made me realize i need to find these answers so i could spend many other trips seeing her and her family. I cant thank Heather enough. She is a great friend.
Monday came around and i was more than anxious. Was i going to get answers? Was i gonna go home empty handed? I prayed and prayed and prayed. Dr Maddox took quite awhile to arrive for our appts. I was super nervous and he didnt seem to confident either. He explained to me that he could not get ahold of the dr he wanted to, that he was out of the country. But some tests had came back he was worried. I had a large amount of Peudomonas Aeruginosa in my system. http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa . Basically a horrible deep cellular infection. His concerns were so great he made a urgent phone call to his infectious disease partner who urged him to put me immediately on a new medication antibiotic called Vantin. Until either heard from the Dr in Colorado to see his opinion on the illness. It was also noted that i have a histamine problem. Where basically everything i touch or do my body acts like its allergic to it. So it over produces histamine and inflames every inch of me. If that could be fixed, things would be great, because technically im allergic to NOTHING.
Also found is that the reoccuring pain ive been having in my left side is a series of severely damaged and broken ribs. That everytime they almost heal i cough, strain, over exert or something that side and rebreak them. I was told that i would have to deal with it with a pain patch and try to get me fixed enough to stop coughing so they could heal.
The lung issue they believe i have is called Bronchiectasis. Bronchiectasis (pronounced bron-kee-ek’-tas-is) is a condition of the airways in the lungs. These airways (bronchial tubes) are tube-like structures that branch from the trachea into the right and left lungs. When a person has bronchiectasis, the airways are permanently and abnormally widened (dilated) and inflamed. These damaged airways can no longer effectively clear mucous and bacteria from the lung, so that exacerbations of cough, sputum production, and shortness of breath can occur.
Bronchiectasis is caused by one or more infectious or inflammatory insults to the lungs. Persons with bronchiectasis are more likely to get lung infections, and each lung infection can make the bronchiectasis worse. Therefore, early diagnosis and treatment of bronchiectasis is very important. The journey to fix Bronchiectasis would be long and tedious. Something that a rare lung dr would know what to do.
I was told pretty much Monday that i had nothing else to do there at Mayo. That until i heard from the dr from Colorado there wasnt much to do. I was horrified again. Leaving with nothing pretty much. Early evening about 7pm Tuesday i was told that the dr from Colorado had contacted Dr Maddox and agreed to accept a lung biopsy from Mayo to be sent to him and and tested. So i was set up to have this done Thursday.
I went in early that Thrusday and got the lung biopsy. The results made me sore to breath, hurt to cough and extremely tired and winded. But it was a major start. It was an answer. And a course of treatment IF all comes back they way think it will.
I did find out that with further and in-depth testing i do NOT have Lupus. I have nearly reversed my Celiacs. As long as i keep to my diet, the Celiacs will stay very calm. Its a lot to digest. Its a huge piece of humbly pie i can tell you that. But now we wait for answers. Now we wait……………