FOLLOW UPS

July3rd, 2007. Back to Quackadoodle #5 Rheumy for follow-up. This is what his report read:

'The differential diagnosis includes Sarcoid and Lupus. The most likely is Sarcoidosis at this point. It is far more likely to cause Uveitis than is SLE (Lupus).
Supporting features suggestive of Sarcoidosis include: elevated ACE level, fever, fatigue, weight loss, malaise, liver abnormalities and Uveitis.
Supporting features suggestive of SLE (Lupus) include: Alopecia, Pleurisy, photosensitivity, H/O miscarriage, Proteinuria, fatigue and lab work including ESR, CRP and ANA.'

Sounds pretty split down the middle, huh. So, no answers yet but I was hopeful they would find some granulomas on my CT scan and ultrasound in a few days. What a thing to hope for. But, at the time, I thought the only way I would get a solid DX was a biopsy and I wanted desperately to put a name on my pain. I couldn't imagine going through years of wondering...

July 5th, 2007. CT scan of my chest showed scarring at my right lung base but was otherwise clear.
July 10, 2007. Abdominal ultrasound showed mildly enlarged liver and spleen.

Sure enough on July12, 2007. Follow-up lab work corresponded as my inflammatory tests were within normal limits. I know some of you don't appreciate this but thank god for Prednisone. Today, I had 3 follow up appointments. One with Neuro, Dr. Rau. My neuro symptoms were under control and he released care. One with Pulmy Barefoot Quackadoodle #8. I was still having the rough breathing, so I convinced him to order some PFT (pulmonary function tests). I felt it should have been done in the beginning and at least I would have a baseline if this condition continued. I was becoming quite educated on Sarcoidosis and felt like I had to educate these boneheads. I would mention something about the disease and he would tell me he never heard of it. JEEZ, at least Google every once in a while. Now, explain to me why a Pulmonologist wouldn't know a disease like Sarcoid inside and out when 90% of sufferers have lung involvement (actually, more than 90% according the the American Lung Association)!!! Just pisses me off. He kept saying "I really think you have Lupus". Anyway, I got the PFT ordered and I was on my way to see Rheumy I Can't Make Up My Mind Quackadoodle #5. Not a good day for me. He reviewed more tests and surprise, he was still undecided about my DX. He seemed very unconcerned because my tests were looking good. I had a rash on my face and back that had developed so he referred me to a Dermatologist. He finally prescribed Actonel which is used to protect from bone loss caused by Prednisone use. He talked to me about Methotrexate and Remicade at that point and started to reduce my Prednisone. He told me to follow up with him in 4 weeks, HUH???!!! Well, I was seeing Dr. Shein (eye doc) tomorrow and since she is more knowledgeable than this turd, I will talk to her about treatment.
July 13th, 2007. Had a flourescein test with Dr. Shein. Optic nerves are still slightly elevated but everything else is looking good. We talked about Sarcoid and she still thought I had it. She ordered a Lysozyme test (something she had requested from #5 in the beginning but he never ordered it), but didn't think it would show much because the inflammation was subsiding. Turns out she was right. She is keeping me at the Pred drops 4 times a day and I am to follow up in 2 weeks. I feel like a pin cushion. But at least I know that there is absolutely nothing else wrong with me except this mystery illness...

DOCTOR #8

Side note: I realize in my earlier posts, I had mentioned one of my dogs and one of my cats were sick. I had meant to include their stories because it was such a big part of what I was going through at the time. In addition to those two, 2 more of my cats got sick. I'm sorry but I'm just not ready to go there yet. I shed alot of tears and I still can't think about them without crying. I'm crying right now because I want to talk about them but I just can't. Hopefully by the time I document this year, I will have some of this off my chest enough to share. To all you animal lovers out there, thanks for understanding and for those that love me, thanks for the support.

Okay, back to Doctor #8. July 2, 2007. Went to the Pulmonologist. Oh boy, where do I start? Okay, we'll just call him Quackadoodle #8. I didn't know it on the first visit. He seemed to be a very cool cat. Old surfer dude, has his practice in an old plantation style house, came in barefoot with his shaka attitude, totally laid back. He examined me and although I could feel my chest was tight and I had a raspiness to my voice that was odd sounding, like a sexy lounge singer, he claimed not to hear a thing. I guess he had ocean water in his ears. By this time, I had read up on different tests ordered for Sarcoid and my parents and I pushed for him to order them. He absolutely would not consider Sarcoidosis because I was not 'African American' and I had lived on the island for 17 years. ( must be a Quackadoodle thing). He said he only had 2 patients, only with lung involved Sarcoid and they had recently moved here from geographical locations that have sarcoid. What an idiot! We at least talked him into ordering a CT scan of my chest and an abdominal ultrasound. He was the only Pulm on the island so I was really hoping I didn't have to see him anytime soon...

SARCOID MONTH 1

Well, that was month 1 of my Sarcoid journey. Let's break it down. 7 doctors. 5 of them intelligent, caring and inquisitive. 2 of them Quackadoodles. Pretty good odds if you ask me. I also have to say that although it was frustrating not having an official diagnosis, I was grateful they were at least trying to nail it down. I had read personal post stories on Sarc sites and knew that some people weren't diagnosed or treated properly for years allowing the progression of their disease. So, all in all, they started treatment very quickly and started to get the inflammation under control. That doesn't mean I felt any better, I didn't, but the test results were showing improvement and that was good enough for me. I realized though in the following month, there was a downside to being put on Prednisone so fast at such a high dose. When Quackadoodle #5 finally got off his ass and ordered diagnostic tests to determine if there were any viable biopsy spots, the inflammation in my organs had started to subside. Trying to biopsy something would be like trying to find a needle in a haystack. It just wasn't warranted. At the time, the research I read said Sarcoidosis could only be diagnosed by a confirmed biopsy of Granulomas. I didn't have that, however, they now are saying that a reasonable conclusion of Sarcoidosis can be made if all the test results, signs and symptoms are of Sarcoid, ruling out all other causes. That was the 'sort of' in my first post. Coming up in month 2 will be more docs and more tests. Mahalo to all for reading this blog. Any comments or questions are encouraged.

DOCTOR #7

My new Opthamologist was Dr. Jean Shein. What a doll. She was a tiny little thing and looked like a teenager. She turned out to be a brilliant doctor. I felt so lucky to find this kind of care on this small island. Made me almost forget all about Quackadoodle #1 and Quackadoodle #5. On a side note, my parents have taken me to nearly every appointment I had. Yes, I was 39 years old but that's what good parents do. So, Dr. Shein's findings were pretty much the same as Dr. B's with some relief of the optical swelling and the mutton fat was completely gone. Yay, no more dialated eyes. So, my mom and I are discussing all the different things we've learned on Google about what may be going on and she has seen Sarcoid in her practice in a different state. I came to find out that Sarcoid just wasn't seen in Hawaii, and when it was, it was someone who had recently moved here. Out of all the professionals I had seen so far, none of them had any Sarcoid patients. During our conversation, we discussed the possible illnesses that caused my Uveitis and 3 different times she brought up getting tested for Syphilis. You should have seen the look on my mother's face each time she said it. She looked like she swallowed a bug and you could've knocked her over with a feather. Her face was red. She was dumbfounded. I knew Dr. Shein was just being thorough like Dr. Yoon and I appreciated that, but my mom was in shock. I had to laugh. When Dr. Shein left the room, my mom leaned over to me and whispered "you don't have syphilis, do you?" Oh man, "NO MOM, ARE YOU CRAZY?!" That's my mom, I got a kick outta that for weeks. Got to get my giggle on somehow these days. It was also one more embarrassing thing to talk about over dinner with Mario. Poor guy. By the way, I didn't have Syphilis in case you were wondering and ruling that and Tuberculosis out, Dr. Shein was pretty convinced that I had Sarcoidosis.

DOCTOR #6

June 25th was my brain MRI. Side note: I never thought I was claustrophobic before but when they slid me in that tube, I couldn't think straight.They pulled me out and gave me a minute. Talk about sucking it up. In the end, I closed my eyes and tried to go to my happy place. Interesting enough, I imagined making jewelry again that I hadn't done in years. The whole creative thinking was putting me in my happy place. It's odd what you think of under duress. They also blasted Toby Keith on my headphones. Brilliant. All was well and on June 28th, 2007, I had my appointment with Dr. Rau, the Neurologist. It went very well. He was very thorough and didn't seem to find me crazy at all. He did act a little shocked when my mother asked him about Sarcoidosis. He wouldn't really address it. I would later learn that he's the kind of doctor that would gather all the information before forming 'what if's'. I like that about him now. And although he didn't tell me then, he recommended to Quackadoodle #5, a spinal tap, a gallium scan and a bronchial biopsy. All which are standard tests for Sarcoidosis. Even I could google that. At the time, I didn't know how important those tests would have been. His exam revealed nothing other than my gait was off and the MRI results were negative. There was not much he could do for me. He was insistent that I see his recommended Opthamologist which later on I would be forever grateful. An Opthamologist can give more acute care than an Optometrist. I learn something new everyday. She was to see me as soon as I left his office. He also referred me to the one Pulmonologist on the island. Why not, I was 4 for 6 and feeling lucky. Being a little naive, I thought I would not see Dr. Rau again, but I would soon learn that I underestimated what was happening to me...

DOCTOR #5

The next day on June 19, 2007, I had a recheck with my eye doctor, Dr. B. There was no change in my optic discs and he discussed with me his concerns about possible MS. I could feel another Google session coming on. Next stop was my first appointment with the rheumatologist, Dr. M. I won't bother to name him because he left the island shortly after seeing him. He acted like a 'short timer' and his follow-up and treatment of me during that time reflected his poor attitude. At that point, my differential diagnosis included Lupus and Sarcoid. He wasn't particularly interested in addressing Sarcoid because I wasn't 'African American'. Apparently, Sarcoid is primarily an African American disease. He ordered more lab work including Lupus panel and Rheumatoid Arthritis panel, 24 hour urine, and repeat of inflammatory tests. My ANA had Doubled to 640, ESR went to 35 and my ACE was 174. No wonder I felt so crappy. Good news that my liver functions were going down. He referred me to the one Neurologist on the island for a MS consult and since I had 2 out of 5 bad experiences in the last three weeks with doctors, I wasn't looking forward to the appointment. But, my Dad had seen him for his Parkinson's and liked him so I tried to keep a positive attitude. My parents weren't backing down and they were going to get answers if they had to wring it out of them. I was exausted and I would soon find out this was not going away anytime soon. Side note: The 24 hour urine test was interesting. They give you this huge container like a gas can and you have to collect all your urine in a 24 hour period. If you can even visualize this process, it's not pretty. It's not just a little sample you have to catch a little in a cup. They want ALL of it. Think about or don't, but that was something I had to be very creative about and it made me very cranky for a day. I guess I still have a little fight in me. This week I think the Prednisone started to kick in a bit because I started eating, and eating, and eating. I felt like cookie monster but my eating habits deserve a whole other post. We'll talk about that later...

MARIO'S HOME

It is June 18, 2007. Mario came home and had a great attitude about what was happening. Poor naive chump. I say that with the greatest respect. If ignorance is bliss, then he was skipping through the tulips. He was very supportive in a non-commital way. He felt that if I ate right and exercised that all would be well. And, now that I didn't drink or smoke anymore, wouldn't that make life so much easier. He would soon come to realize that Sarcoid would restrict my life more than any bad habit. I was scheduled for a follow up chest x-ray and the airport is right down the street so my parents and I went to pick him up before going to the hospital. I still had dialated eyes so I couldn't drive. When we got to the hospital, I got my first ( but certainly not the last) Mario shock. He was NOT going in with me. No siree. Not budging. No way. Wasn't going to happen ( are you getting the point yet?) What, 9 years together and I never knew he hated hospitals?! The subject never came up. We never had to go to a hospital together. I was stunned, but, I still had good ol' mom and dad and he just got home so he'll get a pass on this one. At least now that he's home I can figure out what's happening with my animals. I think we all need a little TLC.