Back in May I was having some major pain in my right shoulder blade/back area. I could tell it was more than just a muscle pain, so one night I just couldn't stand the pain anymore and went in to the ER. They did a CAT scan, didn't find anything other than some unsuspicious swollen lymph nodes that they 'happen to catch' at the top of my chest scan. They sent me on my way with pain meds & said to follow up with my regular doctor & to have the lymph nodes checked in a couple-few months. Ok, no biggie. I followed up with my doctor shortly after (maybe a week) since I already had an appointment scheduled with him, for my foster care licensing check up. We chalked up the pain to being spinal and talked about getting a CAT scan in late July or early August to check on the lymph nodes. He signed my paper & gave me a clean bill of health for my licensing. My back pain continued and I dealt with it & tried different sleeping positions, a body pillow etc.. and took the pain meds as I could. About a week after that appointment, I was sitting watching TV one night and suddenly had an intense pain in my lower neck, about where my collar bone is. It freaked me out a bit, but I went to bed that night thinking nothing of it, since I didn't have any other symptoms (minus the back pain.) And yes, I did Google it and found it was very common to have swollen lymph nodes for MANY different reasons.. mostly non life threatening. I dealt with the pain in the lymph node for a few days until one evening (of course everything happens after hours) I felt really horrible and the node pain was almost unbearable. Time to visit the good ol' ER again. JR had a lot of convincing to do, because I hate going. Most of the time (like just a couple weeks before) they do a few tests, take some blood, give you meds & send you on your way and tell you to follow up... all while taking 15hrs to do so. I am not bitter, I actually love my health network (St. Luke's) because my doctor is a St. Luke's doctor, my sister works for them & the ER I go to is also St. Luke's. I just don't like having to visit the ER. Anywho, since they have an awesome charting system, they knew I was there recently and what they'd done, saw my scans etc. and the doctor on call ordered another CAT scan to see those lymph nodes. It came back that they were swollen, had grown a bit & that on my previous scan, I had also had lung nodules show up. Those had also grown since then. My lungs also looked hazy (they call it 'ground glass') The doctor couldn't say for sure, but said it could be the start of pneumonia. Of course, since I have been hospitalized with it a few times in the last 5 years. Although, I wasn't really convinced, since I know what it feels like & I had no cold or flu symptoms. Not really even any breathing or lung problems at the time. She informed me she was a 'minimalist' and didn't like to prescribe medication, but felt I needed a high dose of antibiotics to kick this. So she sent me on my way with super strength antibiotic & told me to follow up with my doctor. (Good thing I really like my doctor!) Fast forward 4 days... Trying to schedule with my doctor is almost impossible unless it's a ways out. They said I could see the Nurse Practitioner, but I wasn't too happy about that. I'd never seen him and I am really comfortable with my own doctor, as he's seen my through my pneumonia bouts as well as my PCOS stuff. So I scheduled for a week or two out and left it at that. I wasn't feeling any better & in these few days I started having really bad pain in my legs and arms. It was a different pain, some joint.. some muscle, but also feeling like pressure pain when I stood up or moved them from a still position. I had zero energy. Taking a shower felt like climbing Mt. Everest. Twice. All I wanted to do was sleep and I think for a few days I probably slept 18hrs a day. I felt horrible. About an hour after I scheduled my appointment with my doctor, a nurse from his office called me and said she reviewed my chart and really thought it wise that I see the Nurse Practitioner. She was not happy with the symptoms I was having and also that the high dose antibiotic was doing nothing for me. Ok, fine. I wasn't too thrilled about it, but if she took the time to review my stuff and call me back, I could at least give him a chance. Plus, I felt like shit. I made the appointment for 2 days later. Thank goodness for him. He immediately referred me to the pulmonologist & said to call them to get in. He told me there were a few things he was concerned with & that the specialist would be able to rule out some things for me. That was in the morning (please don't ask which day because the last 30 days have all run together) I went to work after my appointment to get some hours in & called the pulmonology office to make sure they got my referral and to schedule my appointment. The lady who gets the referrals was a bit bitchy & I had no patience for her. She went on about how they'd call ME after my referral got "checked".. apparently that means it has to be reviewed by their board of doctors there, to determine the severity of the case & how quickly people need to be seen. Hmmph. Excuse me for not knowing your process! So I hung up, frustrated and not expecting a call back for quite a while. A half hour later she called me & said it was "checked" and they could see me that afternoon. Like, in an hour or so. Good news or bad? All I knew is it freaked me out how quickly they got me in, but most of all how extremely nice this same woman was who I just spoke to 30min ago. Of course my first thought was "This lady feels bad now because she knows I am dying!" (que drama queen music)
I may need my husbands assistance in remembering the next few days of events, because I can't recall details. I remember him and my mom both being at the pulmonology office with me, but I don't remember him riding with us there. Hmm. Anyway, the pulm dr reviewed my scans with us, talked about possibilities and wasn't sure what exactly we were dealing with. He didn't like the swollen LN's (lymph nodes), the 5 nodules on my lungs and the ground glass appearance. Also the symptoms I was having (hot and sweating at night, nausea, the leg/arm pain, a bit of weight loss, no appetite etc) so he said we'd need to do a biopsy. He explained it would be an EBUS, where they put me under and do a breathing tube with a camera and run a needle down to the LN's which are above your lungs. So that he could sample the LN tissue. I knew why it needed to be done, but with the thought of lymphoma as the possibility, I was nervous as hell & scared. He also ordered a blood test which I had to stop in at the lab on the way home and do. It was a JAK2 blood test to determine if there was some kind of bone marrow disorder. Ok, scare me more.
He called me the following day to let me know that he thought the best course of action was to refer me to the oncologist. No. Not the cancer doctor. No. K.. this was my breaking point. Although he couldn't say yes or no it's cancer.. the fact that he thought the best action was to send me to the cancer dr.. I was crushed. Of course I immediately called my mom and my husband ( I was sitting in the McDonalds parking lot after grabbing coffee on my way to work) I was in tears and totally freaked out. I had this ick feeling and wanted to crawl in a hole. JR rushed home and we just sat and cried and I tried to get myself out of my "I'm dying" thinking. Trying to get myself together and face whatever the hell this was.
Again, time has gotten away from me, especially after this point in time. But I made the appointment with the oncologist for a day or two out, saw him & he couldn't say yay or nay either, but it seemed to him that it didn't add up to cancer. Of course, he said, there's always those ones that don't add up. (Not super reassuring) My biopsy was scheduled for that Friday, so this must have been a Wednesday.
***Let me go back a bit... I forgot to mention that after I left the pulm doctor, they said they'd call me with an exact date of my biopsy. That was supposed to be the call he was making when he told me I needed to go see the oncologist. He didn't mention the biopsy date at that time. When they did finally call me to give me date, it seemed they'd already scheduled me for July 2nd.. but the dr didn't want to wait that long, so he rescheduled it for that Friday. (June 27th)
Biopsy Day: I get checked in, do the biopsy.. feeling great in recovery & go home. (shout out to my amazing mom, husband, sister & MIL for being there) A few hours after being home, I start feeling really cruddy. My heart is racing and I just feel horrible. My MIL works at the ICU here and let me use her oxygen meter, so I put it on my finger and it's registering low (86/87), with a high heart rate (118). My go-to nurse (my sister Tami) tells me to call the after surgery care nurse where I had my biopsy, so JR calls & goes through some things with her (warming my hands up while monitoring my oxygen level) and it still is low. She said I needed to go to the ER right away. I am pretty sure I should get a name plaque or something there. Off we go. We get seen right away (my mom meets us there) and they do an EKG (normal) and draw some blood. They did another CAT scan.They are monitoring my oxygen while asking me all sorts of questions (as ER visits usually go) and my oxygen is still reading low. The nurse tells me it is because I have gel polish on and it doesn't read right with polish and that my sats would go up while I was sitting up and talking, so she's sure it was fine. Also, because they gave me pain meds, that my body was relaxing and my sats would normally drop. Seriously. I just had my nails done the day before (because I can't go under with my nails and toes looking a hot mess!) and I wasn't happy about peeling it off one finger.. but I did it myself. Mostly because this lady was not going to take my seriously unless I did and they could get a true reading. So, I peeled my gel polish off. Yes, I am bitter about that. It still needs fixed by the way. Anyhow, the doctor came in and I am sitting up, talking to him and my sats are STILL low. Go figure. He said he was not comfortable with that & that my CAT scan they just did seemed okay. He wasn't comfortable sending me home, so I was being admitted. This ER is an ER only, so they'd be transporting me via ambulance to St. Luke's Downtown Boise. Ugh. I got there after a VERY bumpy, but fun (imagine riding a rollercoaster backwards while on morphine..Whooo!!) ambulance ride, about 4am Saturday morning. (The medic who sat with me in back was a supervisor that I recognized from working at the Fire Dept.. we work with that paramedic company daily.. so that was fun talking with him and he was showing me the new medic program our guys will soon be using :) I get checked into my room, and see the dr later that morning. (If you're wondering, I sent my mom home for some much needed rest because I wasn't sure she'd be able to drive home alone after the last few weeks of lost sleep because of me) The dr said my biopsy results weren't back yet, but he saw the biopsy and it really pointed to Sarcoidosis. (My pulm doctor happened to be on call for the hospital that night/morning). He was starting me on steroids, antibiotics and inhalers. He said that when they went in and did the biopsy, they also did a 'lung flush' to make sure the ground glass in my lungs wasn't a bacteria. The lung wash caused my lungs to spasm and that is why I was here and having problems. He was pretty confident in the Sarcoidosis diagnosis, so we'd start treatment immediately. I responded well the next 24hours so I was able to come home Sunday afternoon. I missed my sisters birthday on Saturday and was totally bummed. But I was also relieved in knowing he was 99% sure that I did not have cancer.
Now what the hell was this Sarcoidosis? Of course I turned to Google. I also have joined some groups on Facebook and am following some blogs. It's really helping me to learn more about this and all the possibilities. I am truly grateful it is not cancer. I am NOT grateful it is a lifelong autoimmune disease. With this disease it can affect your lungs (which is my case currently) eyes, liver, heart and brain. They did an angiogram and said my heart looked good and no signs of sarcoid there. I haven't heard regarding my liver, and I am set to see an eye specialist here in the next week or two to see about my eyes. My brain seems to be okay, although has it ever really been okay? :)
Where I stand currently: I saw my regular dr today (actually, the NP that I saw earlier who referred me to pulmonology) and he said between him and my regular dr, they'd be treating my insulin/gluclose issues. The steroid I am on makes my sugar levels go crazy, and previous blood results showed my AC1 levels low. So I may need medication for the sugar spikes, but I he said I need to be eating a diet of at least 50% protein, so my levels don't drop dangerously low. He said my pulmonologist would be dealing with the Sarcoidosis part of it.
I also had an appointment with a pulmonologist today, (not my normal one, but one in his office) and she gave me a copy of my biopsy results that stated it was not cancer, and was Sarcoidosis. My treatment plan is to continue the high dose steroid for a few weeks until I go see them again, and they can see how I've done on it. (Oh and believe you me, there WILL be a post titled ROID RAGE coming up.. so stay tuned for that one!!) If I am responding well and the LN's have shrunk and not swollen, they can being to taper me off of them. If there's no change, I'll need to stay on them and monitor. Hopefully all while starting to feel better. She said Sarcoidosis is different in everyone and the best outcome would be that the meds work and I'd only have to be on them like 6mos. Let's hope for that best outcome because they are already kicking my ass after a few days. While I was in the hospital, they told me I'd need to be very cautious of germs. No Walmart (the dr really did say that!) and no kissing the kids (sad day!) no being around sick people, limit going in public, use lots of hand sanitizer etc. Basically be a hermit and live in a bubble. Boo. But in people with Sarcoidosis, a small cold or allergy can quickly become pneumonia and cause real problems. (Just a quick fact: that is how Bernie Mac died. He had Sarcoidosis & caught pneumonia) Just something I ran across in my searching :) I did ask the dr today about it and she said to still be cautious, but as long as I felt I could do it, to try. As in going back to work etc. I still am pretty fatigued, not feeling that great.. but I think the steroids have helped my leg pain a lot. It isn't as painful to get up or walk. She said to still not be around sick people, use sanitizer... if I do go to Walmart, to wipe down the cart and consider a mask. I actually think I'd fit right in in that case! :) I am feeling optimistic at this point, but also being realistic. I just need to see how my body is going to respond and go from there. The one thing about Sarcoidosis is that its unpredictable. It can go away in 'remission' for a month, a year, or ten years. Or it can stay and be chronic. Or it can, worst case, spread and affect other organs. There is no cure at this point and there are some other medications they can try if need be. At this point I just want to be feeling better so I am able to get back to work and not have to stress money, as well as getting out of this dammed house. I am also going to start working on a regular sleep pattern, as my sleep is so messed up right now with all of this medication and anxiety. I am sure my husband will appreciate that :) With that said, I am getting tired as I write this, so I am going to apologize that this probably did end up as an hour long read, and say goodnight. Thank you to all of you who have sent kind words, prayers and well wishes.. and have checked up on me and been there for me. My family & friends are so amazing. I really, truly am blessed. I am happy to know and feel that even if this disease tries to break me, I will have you all to complain to. LOL. Just kidding. But honestly, THANK YOU!
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