Sarcoidosis is a disease that causes abnormal collections of cells to form as nodules. These nodules are commonly found in the lungs, but any organ can be affected. It is estimated that there are between 1 and 40 cases per 100,000 people ub the United States, and I am priveledged to bring you one person’s story. Please join me for he next couple of Wednesdays to read about Di’s journey with Sarcoidosis.
Next is the follow up with my regular pulmonologist. We discuss the fact that the tapering off of steroids did not work as I had planned. In fact, rather than getting better, some of the symptoms had gotten worse. I asked if we could start increasing them again, she indicated that she would send a prescription that would allow me to go up by another 2.5mg, but that I could increase up to 10mg a day without contacting her. She indicated that the results of the C-PET indicated that my heart was what had given out first, so she agrees with the doctor at the UW and is concerned that I had Sarcoid in my heart as well. She will send the request to my insurance regarding the heart MRI. This takes us to the beginning of November, 2014.
Never a dull moment, the weekend before Thanksgiving I am trying to get all the air out of an inflatable air mattress that we have for company to use when they visit. I needed to send it back to the company I purchased it from since it had developed a leak and they would replace it basically free of charge. While trying to get the air out so I could package it up for shipping back I heard and felt a pop again, this time on my right side. Again, the agreement was that if I wasn’t better in a week I would contact my doctor. By Wednesday I was getting stabbing pains every time I took a breath in so I sent her a message letting know what had occurred. She sent me a message back letting me know that she had ordered X-rays and that I could go get them taken the Friday after Thanksgiving. Went and had them taken but didn’t expect to hear anything back before the following Monday, only to get a message from my doctor that I had broken 2 ribs this time.
As most people that have to deal with health insurance know it is a matter of jumping through hoops and getting the right forms with the “i’s dotted and the t’s crossed” in the right areas. It took me numerous calls to my pulmonologist’s office and then finally calling my insurance company myself before I got an answer that they had approved it. Now the push was one to get it scheduled. The only location that did it in the Tacoma area called me to schedule. During the conversation I questioned whether or not they would be using contrast and how viable the test would be if they had to do it without contrast. The scheduler didn’t have the answers but promised that a technician would call me back that afternoon. The called and told me that they had already spoken to their doctor and it was agreed that if they could not do contrast that they test wouldn’t give my doctor’s what they were looking for. We discussed what to do and they said they wanted me to drink more fluids than I normally would in the hopes that we could get my GFR up high enough that they could give me the contrast. That once I get there they will do a STAT GFR to see what my numbers are and go from there. I get there and get checked in. They take me back and do the test and the number is high enough that they can do the contrast.
So here we are, at the end of 2014. We don’t have answers on heart involvement since I don’t have a follow up scheduled until 2015 with the doctor at UW, however, we are way beyond where we were at the start of this year.
For me, a mixed bag of emotions, I am glad that I know what is causing the problems even though I am not necessarily happy with the changes in my body. Do I know what the future holds, no more than what I know today. I can project what the future holds depending on what we find out with the MRI. Will I be ok with those answers, yes, I will be. For me, the one unwavering thing throughout this journey is my faith. Perhaps I should have addressed that or written this from that perspective but until now it didn’t occur to me. So I will stand by what is written and be confident in that as much as I am confident in anything that it was exactly what it was supposed to be.
Thank you for stopping by the last couple of weeks to read Di’s story. I hope that you found it as interesting nd informative as I did. My most heartfelt thanks go to Di, for graciously providing the material for these posts. Please join me on Sunday for…I have no clue. I guess I’ll just have to wait and see what sounds fun.