Sunday, February 17, 2013

My heart is breaking

I wanted to write a thorough post about what happened at last weeks GP/Pulmonary doctor appointment, but I have so much on my mind, this may be a short, to the point kind of post. Some of you may prefer that, but in general, I write this blog for myself & my family, and prefer longer, more detailed posts.

Last Friday, I went for my follow-up appointment with my GP/Pulmonary doctor. I parked my car half a block away from the office and under normal circumstances, that information is completely irrelevant. However, after I walked the distance from the car to the office and maybe 10 steps of stairs, my heart was pounding & breathing was labored, my chest/throat felt tighter. My heart continued to pound the next 40 minutes which is how long I waited for my name to be called.

To my positive surprise, my actual GP wasn’t there (Dr. A$$hat), only the PA (physician assistant). I was happy as I’d rather deal with him, than my actual doctor. PA’s name is Chris, so I will call him Dr. Chris from now on. He’s very likable and has good communication skills, he listens & validates all concerns. Completely opposite from my GP…

First I spoke to the PA student & told her I was there for a follow-up regarding my lungs, plus new issues. Like the fact that I still feel tightness, labored breathing and general discomfort in my upper chest/throat area. If someone leans against my arm next to me, I have a strong need & urge to push them away as I feel everything getting tighter & breathing being more difficult. Also my heart has been pounding hard, with or without activity. My brain is in a dense fog, my speaking seems a little off and I feel very foggy, in general. Driving requires extra effort, to stay alert. My sleeping is off, my insides are out of whack, unusually so.
All this prompted yet another lung function test. They’re dizzying! But I wanted to be sure. Turns out, my lungs are perfect based on the test plus listening to my breathing. But the doctor decided to be on the safe side and did a EKG test, too. I’m sure everybody, myself included, thought there’d be nothing newsworthy there. I’ve had 2 other EKG’s over the years in that same office and they’ve both been uneventful. I waited in the room for a while, nobody told me what’s going on, so I went and asked around. I was told the doctor was reading my EKG. I didn’t think anything of it. Next thing I know, they’re telling serious stuff to me.

My EKG showed changes. The report says “sinus tachycardia” and “minimal voltage criteria for LVH”. The doctor showed me the changes on the spikes in the report. He said, the report puts me in a “limbo” where this could indicate a problem, or not. Somehow I’m borderline something. But based on older reports, he thinks this something I need to get checked. He recommends I go to the ER voluntarily as a preventative measure, and to know for sure. He thinks I may have a blood clot, but said, if it is so, it’s not big. I suppose this could indicate other issues as well… LVH means Left Ventricular Hypertrophy and indicates the thickening of the myocardium (muscle) of the left ventricle of the heart. My pulse was 101, resting! Blood pressure was highish (as it was at rheumatologist appointment Wednesday). He said, I could wait it out and be watchful of my symptoms, or get it checked before it becomes an urgent problem. 

Which is what I will do… I’m going to the emergency room tomorrow & take the EKG results with me plus a note from doctor… since it’s a possible problem with my heart, maybe I won’t have to wait too long to be taken in. Dr. Chris took blood to check my kidney function and D-Dimer test . D-Dimer test will help in confirming if we should be concerned about Pulmonary Embolism (blood clot in lungs). Since I’m going to the ER tomorrow, they will perform all the tests again, I’m sure. Either way… 

What makes this worrisome for me is the fact that I will be flying to Finland on the 27th of February. Planes and blood clots don’t really jive, or jive too well really… I will feel much more confident with flying & my health if I rule out the blood clot and maybe get answers to why I still feel this way, even though my lungs are fine. I’m expecting loads of expensive tests tomorrow, but I should also be much wiser after the day is over. At least I’ll know, if there’s anything to know. The doctor told me to stop Symbicort, in case that’s the reason why my heart is pounding… 2 days without and it’s still pounding… as if parts of my body aren’t getting enough oxygen for some reason. He initially told me to go down to 10mg Prednisone, but after hearing everything I said he told me to stay on 20mg.

Enbrel powder/solution 25mg kit
Some of you already know, but I’ll write about my rheumatologist appointment as well. I saw him last Wednesday, February 13. I’ve come to the conclusion that Enbrel alone is not enough to control my RA and I can’t take Methotrexate because of my previous medicine induced liver failure (2007). I believe I responded well to Enbrel because I was on 10mg Prednisone at the same time (started Enbrel June 2012). As soon as I started tapering Prednisone in September, trouble started brewing, slowly but consistently… Initially, first 6 months, I was on Enbrel Sure-Click. My injection site reactions were getting out of control and the skin on my thighs didn’t have enough time to heal to be ready for the next shot. I tried Benadryl and topical steroid to stop the reactions, but no help. I thought the ISR’s were caused by the preservatives in Enbrel, so the logical next step was to try a preservative free form of Enbrel. It meant I would have to give myself 2 injections a week & learn how to assemble the injection & mix the solution… when I first saw it, I thought it was a IQ test ;) I got my new Enbrel in the beginning of December ~ thankfully Little One’s dad did the injections! I was very happy the injections didn’t hurt, unlike the Sure-Click ones. The pain was mind numbing. It only lasted 15 seconds, but it was horrific. Like I was getting stabbed in my leg. I assume it was the preservatives…  However, sometime in December (after maybe 4-6 shots of new Enbrel) I started getting itchy in my stomach and chest (not sure if Enbrel related), also my injection site reactions continued… they were a little milder, but nevertheless, my body should’ve had gotten “over it”, if it was ever going to…

Rheumatologist office, room 3
Sometime in January I started experiencing breathing problems, chest tightness, my cough got worse, I wasn’t sure if I had a cold or not, so I stopped Enbrel. Plus I found out the results of my December blood work… my inflammation markers, ESR (69) and CRP (2.1) had gotten up, higher than when diagnosed. And before I began my high dose Prednisone for the lung problems, blood tests showed ESR (82) and CRP (2.3). Rheumatoid Factor was around 290. So that’s when I realized Enbrel wasn’t doing enough, and we needed to take a new approach to my treatment. I did quite a bit of research on my options, and a very long story short, I ended up suggesting Rituxan as our next step. I asked my rheumatologist if he thought it would be a good biologic for me, and why or why not? We talked about it, like a team and decided I do meet the criteria for it (I have to fail one TNF in order to qualify). He said he’d go through all my test results just to confirm it’s a good direction to go to, but he did get the ball rolling on the approval. He also wants me to get  my eyes checked, as he recommends me starting Plaquenil in addition to Rituxan. If I'm able to begin both, I hope they're a healing combo together :) 

One more thing about Rituxan... I am not currently in a situation where I could/should get pregnant, but I still dream about having a 2nd child. I'm going to be 37 in April and I don't know how much time I have left. The hesitation about starting Rituxan comes from the thought that what if... what if I should hold off and try Humira instead? With Humira I wouldn't have to wait a year before starting to conceive. With Rituxan I would have to. It's like I'm having to choose between another child and treatment for RA... it doesn't quite seem fair, because it isn't. But on the other hand, I'm incredibly grateful for my Little One. I'm lucky to have him :) I won't begin Rituxan infusions until after I return from Finland, so I have time to think. But it could also be too much time to think... but these drugs are no joke, as I've said before, so maybe a little more time is what I need...

Finally, here's a list of all the medications I'm currently on: Prednisone 20mg, Dexilant 60mg, Singulair (just stopped Symbicort). In addition, I'm taking Vitamin C supplement, probiotic multivitamin, Magnesium & Vitamin D (2400). I'm not supplementing with Calcium as I get so nauseous from it. I may add a small Calcium dose, and see how it goes.

My post is so all over the place, I’m sorry about that. I hope I managed to convey my thoughts in an understandable way. Blogging takes a lot of effort, so I really appreciate you reading this and if you feel like you want to give me your 2 cents, please leave a comment.

Food for thought

When you allow others to jump on your back, inevitably, you find yourself at the bottom of the pile. Who's riding you into the ground? ~ David Roppo