So I was going through my medical files, my records from the old hospital that I\u2019m sending to the new doctor to evaluate to see if she will take me into her service. While going through them, I found some diagnoses that no one had ever told me. One of those diagnoses turned out to be something that is actually quite serious. We are absolutely confounded as to why we were never told about this, why no one ever mentioned it, why we were never given treatment options or even warned about this.<\/p>\n
I never go to an appointment alone. I always take someone with me. There are just too many things to remember, questions to ask, comments made, etc., to go alone. Someone else should always be with you, especially if there\u2019s going to be treatment plans discussed or bad news given. You don\u2019t always think of the right questions to ask at the right time, or your brain goes numb and you don\u2019t always hear everything.<\/p>\n
But in this circumstance, no one EVER mentioned this to us. We find out about it two years later on a radiology report with a note called \u201cincidental\u201d. It was incidental, because the reason for the CT scan was to search for pulmonary embolisms\u2013again\u2013and this thing they found was not a pulmonary embolism.<\/p>\n
They found a type of aneurism. A rare one, one that is very uncommon and almost always surgically treated.<\/span><\/p>\n And it just so happens that this type of aneurism frequently can cause aortic dissection or pulmonary arterial descending dissection of the something or another whatever\u2026 the point being, it causes something to happen that I saw on Grey\u2019s Anatomy that apparently is almost 100% fatal every time it happens. As in, not much they can do about it once it happens type of thing. Blech.<\/p>\n The problem is, the surgery to fix this condition requires hypothermic cardiopulmonary bypass. Strangely enough, it\u2019s the same thing that is required to fix teh CTEPH. I\u201dm like.. really, Universe? REALLY? I mean, are you telling me that no matter what I do, there\u2019s no way I\u2019m getting out of this life without having open-heart\/open-chest, hypothermic cardiopulmonary bypass surgery? Really?<\/p>\n Why?<\/p>\n And one of the reasons I\u2019m not currently eligible for the PTE surgery for CTEPH is because of comorbidities. That basically means other conditions that make the risk of surgery more dangerous for me right now than the risk of NOT having the surgery.<\/p>\n But now, knowing this other piece of information, I have some choices to make. I need to talk to my doctor some more. I need to research and learn more, but that\u2019s hard when this is an extremely rare presentation. Even the little bit of literature on the internet I can find about this says it\u2019s extremely rare and therefore there\u2019s not a lot of information.<\/p>\n There is some good news\u2026 the good news can wait, because I want to end on a positive note, so let me start with the bad news first.<\/p>\n The bad news is, from everything I\u2019ve researched, it looks like the choices are either 1) have this dangerous surgery that is very likely to kill me before I even get out of the operating room but could also kill me during recovery or soon after or 2) choose not to have this surgery knowing that this aneurysm could rupture at any point and my heart could get all torn up and I would probably die pretty painfully and quickly\u2013but maybe, just maybe, that will never happen.<\/p>\n Do you play the lottery?<\/p>\n Have ya ever won?<\/p>\n Yeah, me neither, not really. But all these \u2018odds\u2019 on the medical stuff keep getting thrown at me, and time and time again, I keep beating them\u2026 what the hell? When does my body finally say, \u201cEnough!\u201d and give up? How much more can I take?<\/p>\n And more than that\u2026 what kind of life can I possibly be expected to have if THIS is all there is? I talked about that a while back, when I was a bit worse than I am right now, and I have gotten better from that point. I have gone from barely able to hold my own head up in bed, couldn\u2019t stand on my own without help, couldn\u2019t even bathe because I couldn\u2019t raise my hands up above me head and on max oxygen during the day and night\u2013to being on only 2 liters when at rest, able to walk around my house some and able to cook and be active some with my family, with modifications. I have improved. I can\u2019t complain about that.<\/p>\n But how much more can I expect to improve when every time I do, I get hit with something else?<\/p>\n I mean, CTEPH is rare enough, then throw diastolic heart failure on top of it because of the CTEPH then the hashimoto\u2019s thyroiditis, adrenal insufficiency, then my pulmonologist tells me not only does he think I have CTEPH, a type of PH, but he thinks I have PH as well, on top of the CTEPH. I have a rare clotting disorder, which is what started all of this.<\/p>\n And now I have a \u201cright-sided aortic arch and aberrant right subclavian artery with an\u00a0aneurysm of Kommerell compressing on the superior esophagus\u201d, whatever the hell THAT is.<\/p>\n And then to top it all off, it seems I\u2019m having epileptic spikes as well\u2026 oh, and of course, my favorite, fibromyalgia, which should be the least of my worries, but most days, makes me feel worse than all the other stuff combined.<\/p>\n Ugh. Sometimes, I want to just give up. But really, how do you do that? I mean, short of actually committing suicide, which just isn\u2019t ever an option for me when I\u2019m trying my damnedest to stay alive, how do you give up? Just lie around in bed all day until I die? What good does that do? But then, what good does TRYING to do anything do when every time I do, I get hit with yet another thing?<\/p>\n Oh\u2026 and the latest whine-fest complaint: Medicare is refusing to pay for my Lovenox injections. I filed for an exception, and they rejected it. I\u2019m filing an appeal and requested an urgent 72-hour appeal, because I have exactly four more days of injections left, and then I\u2019m out. This medication, for the generic, costs $3200 per month. I can\u2019t afford that. Not with all the other stuff I have to pay too; that\u2019s just insane. Insurance will pay for 28 injections in one month. That\u2019s it. They figure that on the amount they are willing to pay for, which comes to .9876 mg\/ml per day, and that comes basically to 28 injections. I need 60 injections each month, so I have to pay for the other 32 that are missing, sometimes 34. That comes to something in the neighborhood of averaging about $1780 per month, for just this one medication.<\/p>\n And in four days, I won\u2019t have any left\u2026 and without it, I could die. Without it, the IVC filter can clog or develop a clot and I could have a pulmonary embolism, and I could die. Or it could go through my heart, I could survive it, but it goes into my lungs, adds to my clot burden already there, and I end up worsening in the CTEPH. Or it blocks my lungs completely, and I suffocate to death. Or any number or other scenarios, none of which end well.<\/p>\n They want me to switch to a medication that has a lot of litigation going on about it, has no known antidote, and that we don\u2019t even know if it will work on me\u2026 and I\u2019m terrified to try it. And then, if I need any surgery, any procedure, I have to go into the hospital for THREE FREAKING DAYS to bridge to heparin,where with Lovenox, it\u2019s only 12 hours.<\/p>\n I don\u2019t know what I\u2019m going to do if they don\u2019t approve it.<\/p>\n The good news, since I said I was going to leave this with good news: Of all the places in the world I could be right now for treating this new condition, the Houston area, with Baylor Hospital, is one of the best places I could be, because they have done a lot of studies on this particular rare condition. So we start the process of finding the right cardiologist within the Baylor system to see me and tell me what my options are and what my odds of having versus not having a surgical treatment is.<\/p>\n So that part is good.<\/p>\n In the meantime, I continue to feel like I\u2019m a ticking time bomb, and it\u2019s starting to really wear on me. I\u2019m no strong or brave or special in anyway. I\u2019m scared and angry and confused. I spent a good part of tonight crying when I got the letter from Medicare denying my medication, asking why anyone should have to beg for the medication they need to keep them alive. Money is so tight right now, and I\u2019m not open to my usual abundance to bring money into my life like I used to be, so I feel like things are just really clamped down tight. We haven\u2019t gone out or done anything really fun that is prosperity and abundance building in a long time, and I resent this whole situation for taking that away from me too, even if it\u2019s my fault for shutting down emotionally.<\/p>\n It\u2019s just not right. It\u2019s so unfair, it\u2019s all so very, very unfair.<\/p>\n I want to scream and throw things and kick the walls\u2026 but the truth is, I don\u2019t even have the energy to do that, I\u2019d probably break my toe, end up out of breath and panting, and fall on my ass and bawl like a baby. That\u2019s my luck these days.<\/p>\n Okay\u2026 pity party over. Sometimes, I just need to get it out, yanno? I just need to give voice to it, so to speak, to put it down in black and white, to get it out of me and into the world so I can replace it with something better, more positive.<\/p>\n Oh, I\u2019m so trying, believe me, I am so trying.<\/p>\n I love and need you all\u2026<\/p>\n Michy<\/p>\n","protected":false},"excerpt":{"rendered":" So I was going through my medical files, my records from the old hospital that I\u2019m sending to the new doctor to evaluate to see if she will take me into her service. While going through them, I found some diagnoses that no one had ever told me. One of those diagnoses turned out to […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[8],"tags":[],"class_list":["post-512","post","type-post","status-publish","format-standard","hentry","category-health"],"yoast_head":"\n