Meeting with the Hematologist

I went up to University Hospital today to meet with Dr. Anti-Coagulation, upon Dr. T's insistence. It was a pretty useless and uninformative consultation, and Dr. AC was sort of weird. He was weird in that way that my husband seems to love; in fact, he reminded me a lot of my PCP, Dr. A, who is also weird in a way that doesn't necessarily work for me, but that my husband loves. But at least he was not like OMG no way you can have this surgery! In fact, he seemed to think it was pretty stupid I was there, and that Dr. T was stupid for wanting me to be there. Overall, he was extremely snarky about pretty much everything and everyone, and seemed anxious to get home. That was actually good, because my appointment was at 4:00 and we had dinner reservations at 6:00, so it wouldn't have worked if he had been running late and had not been clearly anxious to get home. Traffic was really bad on the way up to UH, and it took us about an hour and 45 minutes to get there. We arrived around 3:55 and were called back so promptly I didn't have time to finish out the health questionnaire they gave me. I was trying to finish it during the pauses when Dr. AC was going through my records until he barked, 'Don't worry about that. I'm not going to read it!' LOL. There you go.

He did take a very thorough history, up to a point, and we talked about everything from my childhood nosebleeds to my tonsillectomy to my post-pregnancy bleeding to my recent DVT. We really didn't talk about cancer, though. I'm not sure if he was actually aware I have cancer. Seriously. Somehow we didn't really get that far, and I'm not sure how well he really read my history. I mentioned my two lumpectomies, but I'm not sure if he was listening. It is hard to describe his very quirky personality, but this illustrates it pretty well: In going through my history, he asked if I had ever had any bleeding problems during or after surgery or childbirth. I said no, though I did bleed a lot after my daughter was born, but that was because part of the placenta was stuck inside me. He replied, 'For real, or did someone just make that up?' I said no, for real. He said, 'Real as in you actually went into the operating room and had the placenta taken out?' I said yes, I definitely had surgery. Then he said, 'Okay, because you know, sometimes medical people just make things up.' HA! Then we got to the part about my hemoglobin E, and apparently somewhere along the line it got recorded as hemoglobin E/beta thalassemia. As he read it aloud, he looked at me, and I said, 'I do have hemoglobin E, but some medical person just made the beta thalassemia part up.' He thought that was hilarious. I told him it was so long ago that I was told I have hemoglobin E that I was starting to wonder if I had made it up, except I was pretty sure it was real because my son has it, too. That much I remember. In the end, he said having thalassemia wouldn't be out of the question, as it's a very common mutation, and, 'Since you're here, we'll run a test for you to be sure it's made up.'

He said he would run a number of tests on me, but they likely wouldn't be very helpful. He said that approximately 1 in 20 people have some sort of factor that makes them 'more likely' to develop blood clots, but that 1 in 20 people don't, in fact, develop blood clots. So whatever. Then he added, 'And besides, I don't know if you've seen these e-mails between me and your surgeon, but I asked her [sic] what she would do if you did have an elevated chance of a blood clot.' Which is exactly what I've been trying to get at! I mean, that's the important part, right? So I asked what Dr. T had said, and he read the response to me verbatim, 'I just want to be sure she doesn't develop another blood clot during surgery.' Then he rolled his eyes and made a comment about how this was such a typical wishy-washy doctor response. So he had replied to the e-mail, 'Yes, but what are you going to do?' And Dr. T had replied that he would do a 'less invasive' surgery. Which is exactly what I've been worried about! And exactly what he will not admit to me! Which is exactly what has been keeping me up all night, tossing and turning and wondering if I'm being wined and dined and if, after all of this, I will wake up with an implant on August 26th! ARGH! So I guess Dr. AC is at least sort of advocating for me, even if in a really bizarre and roundabout way. Like... what exactly does Dr. T want to hear? And what will he do if he doesn't hear what he wants to hear?

Eventually Dr. AC said he didn't see a reason to think I had a substantial risk above the usual risk, and hopefully all the blood tests would come back normal, in which case he would be fine recommending a low dose of prophylactic anticoagulant post-surgery. I asked him what his recommendation would be if the results weren't normal, and he shrugged and said he didn't really know. He said I could possibly do the surgery and be on a high dose of anticoagulant post-surgery, but that plastic surgeons were always worried about hemorrhaging 'messing up their work.' I said I didn't think I was as worried about thrombosis as Dr. T. I mentioned that he had read some obscure study about how people with hemoglobin E who had had their spleens removed were at higher risk for blood clots, which is why he was so worried. I said I had looked up the study, and the reason the people had their spleens removed was because they had hemoglobin E plus another mutation. Dr. AC snarkily congratulated Dr. T for reading journal articles - impressive for a plastic surgeon. LOL. He said spleens were, in fact, very important as far as blood clot formation goes, but my spleen was intact, so it wasn't really an issue. Which is exactly what I think!

Then he asked me, 'Since you've obviously read up on this and thought about it a lot, what worries you more? Hemorrhaging or thrombosis?' LOL. I said neither sounded great to me. I said I wasn't super worried about thrombosis because everyone seemed confident that my DVT was a result of my hip surgery and not a clotting disorder. He interrupted me to ask who 'everyone' was. Oncologists, I said. 'Oncologists?' he scoffed. 'What do they know?'

Did I mention that he IS an oncologist? I mean, it seems that almost all medical oncologists are board certified in oncology and hematology, but most are oncologists above all, and only hematologists insofar as it allows them to treat leukemia patients. Dr. AC is obviously a hematologist first, oncologist second, but it was still one of those comments that leaves you scratching your head. I said I didn't want to have to choose between hemorrhaging and thrombosis, and started to say, 'Isn't that why you make $400/hour?' but then changed my mind and said, 'Isn't that why I'm paying you? So you will tell me your opinion?' He laughed and said, 'Don't you know? The modern medical model is not that we tell people what to do; we collaborate with patients and give them information.' I don't like that model, I said. I'm tired of making decisions. I am old school.

So he said the potential clot formation would worry him more than the hemorrhage. 'I mean, you're not going to bleed out.' Then he said, 'What's the worst thing that could happen? You might have to have a mastectomy.' Huh? Newsflash - that's already happening. IS IT ME, OR IS EVERYONE AROUND ME CRAZY?! Finally I said I was fine taking an anticoagulant after the surgery, especially if that would make Dr. T feel better. Then my husband interjected, 'Yeah, I don't want his hands shaking when he's trying to reattach all those blood vessels.' LOL.

In the end, Dr. AC said, 'Now that I've been completely unhelpful, is there anything else you want to ask me?' So my husband jokingly said, 'Yeah, what's the traffic going to be like on the way home?' Then we made small talk for a few minutes. Earlier he had asked me about my job - noting that I taught at ABC College, and asking me what I taught. So then he asked me where I went to college and grad school. I said I went to college on the east coast and grad school on the west coast. I usually don't bother with the specific names of the schools because most people here haven't heard of them. But then he asked me, 'Do the schools have names?' HA! So I told him, and it was obvious he was familiar with them because he replied, 'So which one did you like better? Do you like cold weather with an air of elitist or warm and laid back?' I told him I was a definitely a cold and elitist person, much more than warm and laid back. He thought that was funny. Then my husband declared he was a proud graduate of a warm and laid back school, and somehow we started to talk about swimming and diving, and he and my husband started gossiping about some former executive director of USA Swimming.

I can't figure out if I loved the guy or if I think he is absolutely crazy cakes. Maybe a little of both. Either way, it doesn't matter, because I won't be seeing him again, I hope. So whatever. He definitely seemed willing to try to help me make the surgery a go, so that helps put my mind at ease. Like, he's definitely not in cahoots with Dr. T or anything. Overall, he seemed very reasonable, even if a little nuts.

The whole appointment took about 45 minutes. Afterward, he walked us to the blood draw lab and I sat there until 5:00 waiting to have blood taken. The phlebotomist was having a hard time getting blood from the woman ahead of me, and by the time she got to me, the cleaning lady was in the lab. Fortunately, I have good veins and the draw was fast. I probably should have said that I had already had some blood drawn by my PCP, only I wasn't sure exactly what tests either doctor had ordered, and I wanted to make sure that EVERYTHING that needs to get done by August 26th gets done, and figured duplications are better than leaving something out. Hopefully my insurance will pay for duplicate tests.

When we left, the clinic was shut down and everyone was gone. See? I was right. They were anxious to get us in and out. We left shortly after 5:00 and went and had a really nice but really insanely expensive dinner. (Thank you to my mom, who volunteered that we should have a nice dinner on our way home. Go mom!) When we got home, it was around 8:30, and we could hear my mom with the kids upstairs. We decided it would be easier if we just let her finish putting them to bed, so I came into the office to check my e-mail. Apparently the lab is open later than 5:00 because I had two test results back already! And the results make me very hopeful. The first result was just a standard CBC (complete blood count), but the second was a test for antithrombin III activity. Since antithrombin III inhibits coagulation, I should be worried about having a deficiency. Only I don't. Apparently the normal range is 72.0 - 125.0 U/dL and I was 91.0 U/dL, which I feel is safely smack dab in the middle of normal. Go me.

And so I continue to pray that this can happen and happen well.

Post Surgery: 5 Weeks + 6 Days / 8 Days UIRTW

Today was another day to file under the 'good days' category. We ( = my whole family) went up to my office this morning to rearrange my furniture, and make it more blood clot friendly. Blood clot friendly, ha ha, does that sound weird or what? Basically I need a way to be able to keep my leg propped up when I'm sitting at my computer, which wasn't possible before. And it was time for a change anyway.

Afterward, we went to the pool, and I was actually able to get in - for the first time in a long time (almost six weeks, to be more precise). I couldn't go in for four weeks after the surgery, I'm guessing because of the risk of infection to the incisions. And the last time we went to the pool, I could not go in because of my bleeding. However, I am happy to report that the bleeding is very much under control now, and I am extremely happy that all my hysteria was for naught. I really do not need any more complicating factors in what I hope can get back to a fairly routine rehab.

My hip... well, it is sore, but holding its own. As I was mentioning to my physical therapist on Friday, it's not just that I haven't done certain things since the surgery, it's that I haven't done certain things since long before the surgery simply because they hurt so much. A simple example is standing with my weight equally distributed on both legs. Another is stairs. Stairs are still extremely difficult for me, but they were difficult for me before the surgery. I can't remember the last time I went up or down stairs like a normal person. My therapist said he was glad I had that perspective because he was often having to remind his patients that it's not just the surgery they are recovering from, but oftentimes many months of dysfunction prior to the surgery. For me, it has been almost a year.

With that in mind, it was very exciting at the pool today because I decided to try swimming - as in actually swimming some laps. Although being a diver in a previous life means that I have spent a lot of time around swimming pools, I'm not actually a very good swimmer, and I have not tried 'real' swimming in about six or seven years. (Shortly after my daughter was born, I got talked into doing a team triathlon with my family, and since I do not like biking and hate running, I got stuck with the swimming leg. That was my only experience with 'real' swimming.) And, weirdly enough, since my hip started acting up this past year, swimming has actually hurt my hip, even just regular old freestyle. Breaststroke has been completely out of the question for a very long time. HOWEVER, I was pleasantly surprised to discover today that A. I can still swim, and B. It doesn't hurt at all. I managed to swim a total of 500 yards - not all at once, but I did one set of 100 yards, one of 200 yards, then two more of 100 yards. I got brave and decided to try the breaststroke on the last 25 yards of my last set - admittedly because I was sort of tired, lol - and... I was able to do it and it didn't hurt at all. Amazing! This made me so happy I can't even tell you.

I guess the thing with this blood clot is that it is an annoying (to put it mildly) complication from pretty routine and elective surgery. The blood clot has become a bigger deal than the surgery itself, which of course is constantly causing me to second guess my decision to have the surgery in the first place. However, despite my doubts, I've always believed it was the right thing for me to do, especially looking down the road long-term. On days like today, when I'm able to do something that I haven't been able to do in a very long time, it really confirms that despite everything, the surgery was a good decision for me. And this makes me happy.

And... icing on the cake. While I was swimming my laps during adult swim time, I noticed that there were several kids standing on the edge of the pool around the lap lane. They were standing so close that when I put my hand on the side of the pool to turn around, I actually grabbed one of the girl's toes. I could not figure out what they were doing, and it made me feel sort of self-conscious, as if they were all standing around watching me. However, it turns out that they were all lined up to take a swim test. My daughter saw the line and decided that she wanted to take the test - which is basically so you can go in the deep end of the pool. For her, the biggest thing is being able to go down the water slides, which she hasn't been able to do all summer. She can swim well enough to go from where the slide deposits you back to the edge of the pool, but to pass the test, you have to tread water for 30 seconds, then swim across the deep end, then float on your back for 30 seconds, and then swim back to the edge of pool on your back. It is the treading water part that has kept my daughter from trying the test all summer, but I think watching all the other kids take the test gave her a rare bout of courage. And... she passed! It was NOT pretty, but she did it! My daughter is extremely cautious and has some (minor) physical challenges, so things involving motor skills do not come easily to her. (It took a lot of $40 an hour private swim lessons to get to this point.) I normally try to leave my family out of my blogs, but this was a huge deal for my daughter and I was so proud of her!

All in all, it was a good way to end the summer.

Post Surgery: 5 Weeks + 5 Days / 9 Days UIRTW

I guess the good news about yesterday is that I was busy enough to miss my daily update. But my original plan was to ditch the daily updates around the time the crutches were supposed to be going away, so we are in bonus material anyway. :)

Anyway, compared to the day before, yesterday was sort of a let-down. My daughter starts school on Monday, so I took her to buy school supplies. This is the longest I've ever waited to buy supplies, but there is not really a way to push a shopping cart on crutches, and this definitely required a shopping cart. This was my first real shopping escapade since surgery, and unfortunately it just about killed me. Okay, so not literally, but by the end, I was quite literally leaning on the shopping cart and using it as a walker. We had to go to a second store to buy black and white composition books, and I had to use a crutch. And I don't mean I had to bring it just as back up; I really had to use it. Ugh, so disheartening, especially considering the shopping trip itself was just over an hour, which is how long my classes are. After we got her school supplies, I took her out to lunch. By the time we got home, I was so exhausted that I lay down on the futon and had to sleep for two hours. Needless to say, I'm feeling slightly panicked about the upcoming semester, even with my reduced teaching load.

The good news is that after the nap, I felt much better and was able to do a little bit of work in my garden. The tough part about the garden is that although I should be able to squat down now - I no longer have restrictions on my thigh flexion - the swelling in my leg still makes that impossible. In fact, trying to squat down is what made me notice the swelling in the first place, which eventually led to the discovery of the blood clot. Although I think the swelling is improving, it's still pretty significant. So if I want to work in the garden or get anything off the floor, my hamstrings get a good stretching. Good thing I'm very flexible. :)

Post Surgery: 5 Weeks + 3 Days / 11 Days UIRTW

Yup, I'm still alive. I'm still wrong, and still happy about. I'm still bleeding, but the good news is that if I am bleeding to death, it is very slowly. :)

And I have some sort of good news. It is mostly good news, I just have some mixed feelings about it. I've decided to drop to 1/2 time this semester. I e-mailed my Chair two nights ago in the midst of my hysteria, which was not the best idea, but I re-read the e-mail later and it wasn't too embarrassingly hysterical (although he did reply that we would deal with a certain issue in the future, but For now we need to manage your stress).

I've written more about this over here: http://dontcallmeprofessor.blogspot.com/2014/08/im-not-dead-yet.html.

On Wednesday, my PT asked me about the class I was teaching. I was surprised he remembered. When I told him I had to get someone else to teach it, he nodded knowingly, as if he had seen it coming. Then he asked about the rest of my classes, and he asked in such a way that suggested he didn't think it was the greatest idea for me to be teaching at all (granted, that was the day that I looked reeeeaaallly terrible). I said that I was trying to get a reduced teaching load and he said that was definitely a good idea. So, I have an endorsement from one medical professional.

I guess my biggest concern right now is over the possible long-term effects of this if I don't take care of it properly. For one, there is a realistic possibility the clot won't actually resolve, even with the medication. There's also a chance of it getting bigger, and if it spreads up to the iliac vein, it's really dangerous, even with the medication. It can also damage the veins, leading to recurrent episodes of DVT. I really don't want to have to take anticoagulants for my entire life. And besides, what if we ever need to change insurance? $400/month for life is way too much; my kids will never go to college. The saddest part of all this is that I had this hip surgery because I felt like 39 was too young to be having such terrible hip pain, yet now there is a possibility of me dealing with DVT for the rest of my life, and I feel like I'm definitely waaaaay too young for that. I feel like every time I talk to people about being on an anticoagulant, they are like, 'Yeah, my grandma has to take Coumadin and it sucks,' or, some of my colleagues who are, like, 60, tell me, 'Yeah, my dad has had to take blood thinners ever since he had his stroke; what a pain.' Seriously, this is medication that only grandparents and the parents of people who are my parents' age take!

Meanwhile, my hip is killing me. 

Ahhhhh, I'm totally dying my hair tomorrow. I need a morale boost.

I AM okay! (5 Weeks + 2 Days / 12 Days UIRTW)

I've never been so happy to be wrong before. So I live to tell about another day. :)

I'm still bleeding, but not alarmingly so. However, I lost so much blood over the past 24 hours I looked like a Geisha girl this morning. Three different people told me before 10 AM that they would pray for me. Seriously, did I look that bad?!

I went to PT this morning, and it felt good to try to get back into the swing of things. Unfortunately, my hip (oh yeah, remember my hip?) is not stellar. It's not terrible, either, but it is actually noticeably sore. Maybe it is just because the pain in my leg is actually improving so now I notice my hip pain more. At any rate, my therapist suggested taking it easy and not pushing things too hard. I was able to do a reasonable amount of exercises; the only thing I can absolutely not do right now is go up on my toes. That causes excruciating pain in my calf. 

My day-to-day plan is to just go about my daily routine, but not do anything crazy. I should try to be active, but not hard core. My PT also advised against long shopping trips to the mall. Fortunately, I don't really like shopping and I definitely don't like the mall. Ha. It's logical to think that rigorous activity might make a blood clot break loose, although there are no data that I can find about this one way or another. But better safe than sorry. Not that I have anything hard core planned considering my hip still limits me significantly (oh yeah, remember my hip?). Apparently the idea of bed rest versus ambulation is unresolved in the management of DVT, but there is little evidence to suggest that just walking around increases the chances of pulmonary embolism. And bed rest may actually make the clot grow. So... moderation seems to be the best plan.

Also, my additional consultation with Dr. Google made me realize that the ultrasound tech was right when she said it was a good thing we caught this. I mean, duh, of course it is, but when she said it, she really meant it. Given where the blood clot begins, in the proximal femoral vein, I had a huge risk of pulmonary embolism. According to this article: It has been suggested that about one half of patients with an untreated proximal DVT will develop a pulmonary embolism (PE) within 3 months. Yikes. I've been trying to find literature on the risk of PE while on an anticoagulant, and while it's obviously much improved over a 50% chance of PE, some of the articles aren't that encouraging about the long-term prognosis. It's not like once you're on medication you're totally fine. But for now I'm just trying to stay in the present, and praying all the prayers will send some healing powers my way. :)

I am NOT okay! (5 Weeks + 1 Day / 13 Days UIRTW)

I know I may seem hysterical and melodramatic, but I really don't think I am. In fact, one time one of my best friends from college wrote me a letter (back in the day of letters) telling me that when it came to trying to decipher my emotions, I was a 'Houdini.' This happened as a result of the fact that I went to visit her in California after we graduated from college, and had a great time. Unfortunately, I didn't write her a thank-you note soon enough telling her that I had had a great time, and apparently I didn't make it obvious enough that I had had a great time while I was there, and she interpreted my lack of prompt thank-you note to mean that I had had a terrible time, and wrote me a nasty letter telling me that she was sorry I had had such a terrible time. The sort of funny thing is that her letter and my thank-you letter crossed in the mail. Right after she sent her letter, she got mine, and promptly wrote me an apology, but said that I was a 'Houdini,' so how could she have known what I was thinking?

So this blog is evolving into a blog about everything except for my hip. If you are really reading this out of interest for hip arthroscopy, I do apologize.

At any rate, I feel like I need to tell a story to put what I am about to write into context. Fortunately, I've already written the story. It is here: http://39andhip.blogspot.com/p/somethings.html. The first paragraph. Yesterday I mentioned that I was nervous about taking an anticoagulant because of my occasional propensity to hemorrhage. The irony is that I stopped that entry to eat dinner, then in the middle of dinner, it started. It was as if I brought it on by writing about my worries. Now, I do realize that A. I stopped taking my birth control pills on Thursday night after the initial concern over having a blood clot, and I have not taken them since then, which could mess up my cycle; and B. I am on an anticoagulant, which will likely make me bleed more than normal. However, I am NOT okay with how much blood I have lost between last night and today. The thing is that it isn't necessarily alarming in itself - I am not bleeding to death - BUT, it is literally exactly the same as it was after my daughter was born, and that did not end well. And that feeling of losing a bowlful of Jell-O out of my uterus is something I don't care to experience again in my lifetime. It's worse than the shot in the stomach, and even worse than the cortisone shot, not to mention it is damn messy. My doctor kept telling me I would be okay, and ultimately I guess I was (I'm here to tell the story, after all), yet I was NOT okay with how it ended - with a lot of trauma and a totally unnecessary $10,000 hospital stay.

I'm also feeling a little put off because I feel like I've been voicing concern for my leg pain for a long time now, and everyone told me it would be okay. And because I try very hard to NOT be hysterical and melodramatic, I just went with the flow and tried really hard to be positive about it, even though my gut felt like I should not be having that much pain so long after the surgery. And look where that got me. My gut was right; there WAS something wrong. And while I am okay - again, 'okay' as in I'm NOT DEAD or permanently disabled - I'm sort of NOT okay with the fact that I had a blood clot that likely went undiagnosed for four weeks and now extends into my proximal femoral vein, which makes it much more risky to be toting around.

And for this same reason, I'm sort of NOT okay with everyone telling me this bleeding is going to be fine. And I'm sort of NOT okay with everyone telling me this blood clot is going to be fine. Of course, I absolutely hope everyone is right and I am wrong, but most other times when I have felt like I feel now, I'm the one who has been right.

So. I went and saw my orthopedist today. Before my appointment, I stopped by the PT room and brought my therapist some flowers from the yard, just as a little thank you for... well, finally realizing that things might NOT be okay. He was his usual stoic self, but who am I to talk? LOL.

At my appointment, I told the medical assistant about my bleeding so I at least didn't have to bring it up directly with the doctor. She reacted exactly like I figured she would: she told me it would be okay. I'm soooo sick of everyone telling me this, I just burst into tears after she left the room. I am not kidding. And even though I tried and tried and tried, and pulled out every stress management technique I have ever attempted (there are a lot of them), I could not stop crying before the doctor came in. And I cried the whole time he was in the room, which was fortunately only about three minutes. After the appointment, I kept on crying. In fact, I saw the doctor at 11:30, and it is now 3:30 and I am still crying. If I were more lucid, I would be really embarrassed, but at this point I don't even really care that much. My orthopedist didn't seem to care too much, either. He just kept talking at me as I kept crying, and it didn't matter that I wasn't paying that much attention because he wasn't telling me anything useful anyway. A summary of what he said:

• These things happen; there was a 1% chance of developing a blood clot, and I did. But it's going to be fine.
• We'll get you through this. (Yeah............. right. I'll get myself through this.)
• The bleeding is probably nothing to worry about, and it's going to be fine, but if I'm really worried ( = that much of a hypochondriac), I should see my (nonexistent) OB/GYN.
• My hip seems great.
• I should keep doing PT - I should not let the blood clot get in the way of my hip rehab. 
• Do you need some Kleenex?

A few additional points:

• If I had had my wits about me, I would have had the doctor look at my incisions, which seem a little infected to me, but... I'm sure they are fine, just like everything else. 
• I GET that an orthopedist, especially a young male orthopedist who for all I know is a virgin, doesn't know much about vaginal bleeding. At the same time, I am SO SICK of people being sooo specialized in their jobs that they literally can't tell you ANYTHING about ANYTHING other than the one little teeny tiny area they specialize in. It's no wonder my students are always asking me bizarre medical questions, as if I should know the answer to a mystery that stumped someone with at least seven freaking years of medical education and training.
• On a side note, one of my friends and former colleagues left the university to go to PA school. As a gay male, let me tell you he was dreading the OB/GYN rotation like nothing else, ha ha ha. Thinking back on the conversation we had about it at least got me to stop crying for a minute. :) (The way I see it, females are at an advantage because they have all those parts. And straight men have at least played around with all those parts!)
• The doctor did try his hand at due diligence, and asked around the office and came back to me with the name of an OB/GYN some of the females recommended.
• But, I'm sooooo over doctors right now. The last thing I have the time or energy for is another useless appointment. If everyone else is right, and the bleeding is just because I stopped taking the birth control, then it will stop within the next few days. If my gut is right, I will end up having a massive hemorrhage, and I will have to go to the ER where I will just see the OB/GYN on call, so it doesn't matter.

All I can say is that if my gut is right, I hope I bleed out all over my orthopedist's carpet and not my own.

Post Surgery: 4 Weeks + 5 Days / 16 Days UIRTW

A few things:

• I am sort of a mess, both physically and mentally.
• Even if I were able to pull myself together mentally before Wednesday, which in itself is a huge question mark, I really don't know if I can physically be on my feet from 8-5 for five day without seriously jeopardizing my recovery and perhaps even my health. 
• So, I'm not going to find out. I've been in contact with my Chair and explained my situation, and told him that I just don't feel like I can do this, and that whatever I need to do later to make up for it, I will do. Fortunately, I have a good working relationship with the Chair - he is reasonable and knows that I work hard and do my job as well as I can and rarely make excuses or ask for things. He e-mailed back right away and agreed that I should NOT teach the class, and immediately started to work on alternatives. Luckily, he found someone else to teach the class in my place, and the details are being worked out as I write this. It is such a relief for me to have this off my plate, and I am doing everything I can to help the new instructor. I'm basically giving him all of my course material. I just finished a course copy on Blackboard, so he literally has alllll my stuff, which I would normally be pretty possessive about, but... I don't care. Having this off my plate is priceless. My Chair did say that we could always just cancel the class (after all, shit happens, even to instructors) but I would have felt bad about that because canceling a class last minute, especially this one in particular, can really screw students. Getting a replacement is the best option.
• So I now have 16 days until I have to start teaching again, and I feel like the reduced anxiety will be good for my overall recovery.
• That said, I'm actually sort of worried that 16 days won't be enough. But, whatever, it is most certainly better than 4 days. Plus, even in 16 days, I will not have to be on my feet from 8-5; it will be 3.5 hours maximum, which is a very different situation.

Other things:

• I left the ER yesterday with not very much instruction; I need to consult my PCP and orthopedist for specific information about the long-term treatment of my blood clots (AKA acute deep vein thrombosis, or DVT). 
• The PA in the ER told me that sometimes orthopedists 'don't really do blood clots,' and that my orthopedist might refer me to another doctor, perhaps back to my PCP, who might refer me to someone else. Awesome.
• Needless to say, I've been doing a lot of consulting with Dr. Google, and Dr. Google confirms that DVT is odd territory. According to this article: Patients with venous thromboembolic disease (VTE) are seen by a variety of medical specialists, including general physicians, surgeons, obstetricians, hematologists, radiologists, and chest physicians. Because thromboembolic disease forms only a small part of the practice of most of these clinicians, it is difficult for them to keep abreast of advances that are important for optimal patient care. 
• I should add that 'optimal patient care' is very important considering the sort of sobering information the article also gives: DVT and pulmonary embolism (PE) most often complicate the course of sick, hospitalized patients but may also affect ambulatory and otherwise healthy persons. It is estimated that each year 600,000 patients develop PE and that 60,000 die of this complication. This number exceeds the number of American women who die each year from breast cancer. PE is now the most frequent cause of death associated with childbirth. Women are a prime target for PE, being affected more often than men.
• Also: Patients who survive the initial episode of DVT are prone to chronic swelling of the leg and pain because the valves in the veins can be damaged by the thrombotic process, leading to venous hypertension. In some instances skin ulceration and impaired mobility prevent patients from leading normal, active lives. In addition, patients with DVT are prone to recurrent episodes. In those instances in which DVT and PE develop as complications of a surgical or medical illness, in addition to the mortality risk, hospitalization is prolonged and healthcare costs are increased. 
• In other words, this isn't necessarily a 'take these pills and your problem will go away' situation. It is something that will require long-term treatment or at least monitoring. 
• Ugh. Depressing. And sort of scary.
• I mentioned the cost of the medicine in my previous post; that the PA told me it could be $300-$400, even with insurance. What I didn't add is that she actually said $300-$400 a month, which at the time didn't register with me, because I figured you take this for about a month, so $300-$400 a month means $300-$400 total, right? 
• Wrong. Apparently the standard course of treatment is 3-6 months. Like I said, I feel fortunate that I only had a $50 copay for the tablets with my particular insurance plan, because $400 a month for six months might push me to consider stomach injections instead.
• But back to the present moment. 
• Of course, this all came down on a Friday, and I find myself not knowing what to do for the next few days. Am I supposed to be resting or walking? Heat or ice or neither? I assume massage is out, lol, but other than this, I feel like I. know. nothing. And it's not a question of icing your ankle when heat might have been better; what I do could have serious consequences. 
• And apparently a pulmonary embolism as the result of DVT is not actually that uncommon. 
• I have follow-up appointments on Monday and Tuesday, one with a PCP and one with my orthopedist. I don't know which one is better for this, but I'm not taking any chances, so I'm going to see both of them. Considering my orthopedist is the one who missed this two weeks ago because his little test didn't inflict massive pain on me, I'm not exactly feeling strong love toward him right now. Ha.
• On a sort of funny note, I mentioned the blood clot test to the PA in the ER and she knew exactly what test I was talking about. (She told me the name, but I forgot.) Then she added, 'Yeah, that test doesn't work on tough girls.' LOL. (Just an interesting observation: the PA was at least partly Asian, and about my age.)
• I mentioned that my personal PA moved recently - literally, a few days ago (see: http://39andhip.blogspot.com/2014/08/post-surgery-3-weeks-5-days.html). So I actually have no PCP at the moment. However, I do have an appointment with her supervising physician, who is my husband's primary care doctor. And my husband is pretty picky. 
• My husband texted this doctor last night, who suggested elevating my leg to reduce swelling, low heat, and absolutely no massage, so at least that is SOMETHING.
• According to Dr. Google, elevating the leg is a standard suggestion, but so are walking and exercising. Can someone explain how that works?! Ha.
• So basically as far as I can tell I should be elevating my leg when I'm sitting, but I should be walking as much as I can to improve circulation and keep the clot from getting even bigger. 
• The problem is that the swelling is still really bad and causing a lot of pain, which makes walking very difficult. The pain was actually really bad this morning, which is sort of weird. Looking back, I am certain this problem has been developing over the course of the past few weeks, ever since I started to complain about my leg pain about a week after surgery. Yet I can't help but wonder if something set this off so that it became really bad recently, or if it just hurts more now because I know what it is and am freaked out about it. In other words, is it all in my head?
• Regardless of whether it's a psychological phenomenon or not, I could not walk this morning without a crutch, and even that was very painful. At the same time, I was reading all this stuff on the Internet about how sitting still would only make this condition worse. 
• Finally my husband suggested taking pain medication so that I can walk, so that's what I've been doing. The way I see it is that I'd rather be drunk from pain medication than have a pulmonary embolism.
• It's all just a little frustrating, though. 
• Also, when I talked to the pharmacist on Friday when I was having my prescriptions filled, she asked me what specific directions I had gotten for what I was supposed to be doing other than taking the medication, and I said I really didn't get any. She went on and on about how I was soooo young to have a blood clot, and this was serious, and I needed to find out what else I should be doing ASAP. All in all, it was slightly alarming. 

And finally:

• When I left PT on Thursday afternoon, both the PT assistant and PT asked me to please call them as soon as I had any news and let them know what was up. Even though the PT office is associated with the orthopedic office, which is why my therapist was able to find a PA so quickly to do an exam and write a script for an ultrasound, I'm sure they're probably the last people to get information. Before I left, both the PTA and PT repeatedly requested that I call them directly with any results ASAP.
• So I called the office from the ER on Friday. I figured I was there because of them - and I don't mean that in a bad way - so common courtesy told me that I at least owed them the phone call they had requested. I wasn't quite sure how to leave a message, but fortunately the secretary seemed familiar with my story, so I didn't have to do an assload of explaining. At least, when I told her, Please tell Jay and AJ that they were right, I do have a blood clot, and apparently it's pretty massive. In fact, I'm at the hospital right now getting treated, she seemed to know what I was talking about.
• My therapist actually called me on Friday afternoon. He kept apologizing, saying that he was soooo sorry things turned out this way, and I had to keep telling him that I was thankful that he was on top of things, and that it certainly wasn't his fault. I guess he was sort of freaked out because somehow at the hospital got conveyed to him as in the hospital, which worried him. I assured him that I was fine, and that death wasn't imminent, at least not that I knew of. LOL.
• It was good that he called, because I was actually sort of wondering if this changes PT, and if so, how, and apparently he doesn't have much experience with DVT, either. I mentioned that I was supposed to come in for PT on Monday at 9:15, but he confirmed that we should cancel that appointment until he had had a chance to talk to my orthopedist. He said he had tried to find him today, but that he wasn't in, which I already knew due to my ER ordeal. I asked if I needed to call and cancel the appointment or if he could take care of it. He told me he wasn't actually at work - I just left - but that he would take care of it when he got in on Monday morning. So he called me from his cell phone on the way home... how sweet. And for once I'm not actually being snarky! Seriously, I'm getting a lot of feel good vibes from my PT lately.

As always, despite the fact that it goes against my nature to do so, I'm trying to stay positive and hope for the best.

Deep Vein Thrombosis (4 Weeks + 4 Days / 5 Days UIRTW)

I guess I'm not quite out of material for this blog yet.

I barely slept last night: A. because I was stressed and B. because my leg hurt quite a bit. I had a book club meeting, which is really more of a girls' night in with some of my neighborhood friends/fellow moms. We mostly just eat and drink wine, with a little bit of book talk thrown in. My friend, colleague, and neighbor hosted this month's book club. Her house is five blocks away, and I was determined to walk there with one of my other book club buddies, who lives up the street from me. I ALMOST backed out of walking because I wasn't feeling stellar when I got back from PT, but then I decided to suck it up, mostly to give me the option of drinking wine freely :). I brought a crutch with me, but I ended up carrying it the whole way there, and back! That is the good news. The bad news is that my leg hurt quite a bit when I got back, and somehow the pain + the wine + the stress made for a pretty sleepless night.

Needless to say, I was reeeeaaallly tired when I got up this morning and had to drag myself to my 7:45 AM ultrasound appointment. But, I figured that I would just come home afterward and take a nap, seeing as how the rest of my family is still camping. Unfortunately, my morning unraveled in a very different way than I had imagined.

During the ultrasound, I tried to follow what the tech was doing, but like I've mentioned before, I can never make sense of those things. So instead of watching the screen, I watched the tech's face for telltale signs of... something. She seemed a little concerned throughout the ultrasound, although I couldn't tell if it was actual concern or just concentration. It turns out it was the former. When she told me she was done, I asked if she had found anything interesting. Sometimes techs will tell you stuff and sometimes they won't, but I always ask anyway. She looked at me and took a deep breath and replied, 'Yes. I did.' Then she went on to say that she found clotting, and that it was very extensive, going all the way from above my knee down most of my calf, which would explain why my leg hurts and is so swollen. After that she added, 'That's the bad news.' I asked what the good news was, and she said, 'It's a really good thing we caught this.'

She called my doctor, who wasn't in, and after some ado, she sent me to the ER to get treated, along with a diagram of where the clotting was and a CD of the ultrasound. The ER involved quite a bit of waiting, although I've definitely had worse ER waits. Eventually, I saw a PA, then the physician on duty, who was communicating with the physician on call for my surgeon. The PA told me I was going to get a shot of an anticoagulant, Lovenox, in my stomach, and after that I would need to administer the shots to myself twice a day. I would also need to modify my diet substantially (e.g., cut out leafy greens, wtf?) and have my blood drawn for testing every week. I think I sat there staring at her with my mouth open. Because then she added that there was actually an alternative; I could take a tablet twice a day with no changes to my diet and no need to draw blood. So of course, I'm thinking, Are you crazy? Do you even have to ASK which one I'd prefer?! Until she added, 'The only problem with the tablet is that insurance companies don't like to pay for it, and it's very expensive.' She asked what insurance I had, and when I told her, she said they were actually pretty good about paying for the tablet medication, but that it might still be $300-$400. I decided that I didn't care; I would consider it $400 well spent, and the next time I am miserable at work, I will remind myself that I am working so I don't have to inject myself in the f-ing stomach twice a day. OMG.

Eventually I got the shot, and it was super unpleasant, let me tell you. I'm pretty sure that if I hadn't already decided to suck it up and pay whatever it took to avoid the shots, I would have changed my mind after the shot. It wasn't as bad as the cortisone injection, but it pretty much sucked, and I seriously can't imagine inflicting that on myself. Once a week, maybe, but two times a day?! Uh, no thanks. And, the good news is that it turns out I have pretty stellar insurance, and the medication, rivaroxaban/Xarelto, only cost me $50, so it was a good decision.

So, to sum it up.

Bad news: Extensive clotting with the risk of it traveling to my lungs, heart, kidneys, or brain, and killing me. LOL. Lots of swelling and pain. Though apparently not as much pain as this should be causing, which is likely why it took so long to figure out. The PA actually prescribed oxycodone for pain. Seriously, it doesn't hurt that bad, which is apparently why I passed the surgeon's blood clot test with such flying colors, and no one has been worried about this for the past four weeks.

Good news: Lucky to have caught this. Thank God for my observant and competent PT assistant and my PT. And thank God, too, for good insurance. And, I guess, thank God I finally have an explanation for this pain that has been plaguing on and off since 1 Week + 1 Day post-surgery. Apparently it is going to take a long time for the clotting to resolve and for the pain to go away, but at least knowing what it is makes it a little easier to deal with.

Post Surgery: 4 Weeks + 3 Days / 6 Days UIRTW

This damn pain in my right leg. 

A while back, while my husband was working on my calf muscle, he mentioned that my calf muscle was really hot. He acted all freaked out and told me I should call my surgeon. Of course, this is my husband, who freaks out worse than I do over teeny tiny things. I told him I would, but then I didn't, and fortunately my husband has a short memory. I have to admit that my calf did feel warm to the touch, but that didn't seem like something my surgeon needed to know about.

Anyway, fast forward to today. My husband and daughter left yesterday to go camping with some friends, and this morning I drove my son up to drop him off at the camp site. (The camp site is right next to the river, and we thought two nights with an almost three year old next to a river would be a bit much, but that one night would be okay.) When I woke up, I noticed that the pain in my leg was probably a little worse than yesterday, but still manageable. I did a lot of walking yesterday, so I was thinking I was just sore. Or whatever.

I got back from dropping my son off this afternoon and realized I needed to eat something before going to PT. I decided to fix myself some potatoes, only I went into the pantry to discover that my husband had taken the whole freaking bag of potatoes with him. Since my stomach was set on potatoes, I decided to dig some out of my garden; after all, the restrictions on my thigh flexion have been lifted, so I can squat now as long as it doesn't hurt. Unfortunately, as I squatted down, I noticed that it did hurt, and quite a bit, but not because of my hip. It hurt when the back of my thigh pushed up against my calf, which I quickly realized was because the back of my leg, and especially the back of my knee, are totally swollen. Nevertheless, I managed to dig the potatoes out and grab a bite to eat before heading off to PT. While I was eating, I iced the back of my knee, because I really wanted to have a great PT session.

My appointment today was with the friendly PT assistant, Jay, whom I just adore. (I'm pretty sure everyone does.) However, I was a little worried because although he is the life of the PT room, I've only worked with him once before, so I wasn't sure how aware he was of my ongoing leg pain, and I felt like it was important for him to at least know. My regular PT knows about this pain and although he has never specifically done anything about it, he is aware of it. So I told Jay about the pain and swelling first thing, and he took a 'let's proceed with caution' attitude, which was fine. I rode the bike and then did some standing up exercises and felt okay. However, while I was doing them, Jay commented, 'Your right ankle is really swollen.' I looked down, and sure enough, it really was. WTF? My ankle doesn't even hurt, yet it was definitely ballooned out to the point that Jay noticed it from across the room.

After that, I went to do some stretching, and there was one particular stretch that was soooo uncomfortable, I actually started crying. I don't know why I started crying; honestly, it didn't hurt that bad. I think it was more just because I am soooo stressed out right about now and also frustrated because I feel like this damn leg pain is the only thing that is really holding me back. And while the pain is not horrendous, it just won't let up no matter what I do, and no one seems to know what it is. Fortunately no one actually saw me crying, but Jay could tell I was in pain and told me to stop. Then he said that he was going to try to do some soft tissue work, AKA massage, on my leg, to see if that would help.

So I rolled over, and he put some massage cream on the back of my knee and on my calf, asked me a few questions about where my pain was, and then said he would be right back. A few minutes later, he returned with AJ, my 'regular' PT. They both stood there for a minute, then AJ asked me to roll over, and poked around a little bit, and asked me a few more questions. Eventually, Jay apologized, and said he would be right back, and he and AJ stepped around the corner. At that point I was thinking, Just give me my damn massage so we can get this show on the road. LOL. When Jay came back, it was him, AJ, and some other guy, who introduced himself as Kevin, a physician assistant. Kevin repeated a lot of what Jay and AJ had done, then spoke briefly with AJ. They asked me to sit up, and then told me that while they did not want alarm me, they all agreed that I needed to go to the hospital and have an ultrasound to rule out the possibility that I had a blood clot. As Kevin explained (which I sort of already knew), there are three huge risk factors for blood clots: smoking, birth control, and surgery. And I had two of the three, plus pain and swelling in the most common area for blood clots. So while they did not really think this is what it was, and were hopeful that the ultrasound would 'just be a waste of my time,' they could not rule it out, and were not okay proceeding with any sort of treatment until this had been ruled out.

I mentioned that I had told my doctor about my pain at my two-week post-op appointment, and he seemed confident it wasn't a blood clot. Although, interestingly enough, the stretching exercise that I was doing with the PTA that brought me to tears was very similar to the 'test' that my surgeon did on me at my post-op appointment. And one of the reasons he definitively concluded that it was not a blood clot was because 'If it were a blood clot, that would have hurt a lot.' (These are times when I worry about a high pain tolerance.) Anyways, both AJ and Kevin said that although my doctor wasn't in this afternoon, they were certain this was what he would have wanted as well. They repeated that they really didn't think it was a blood clot, and that I should not freak out, but that they needed to rule it out for sure. Because if it's not a blood clot, it's just a waste of time (and money, I add), but if it IS a blood clot, it is a potentially life-threatening situation, so it is worth it to know for sure.

Apparently it was too late in the afternoon to schedule an ultrasound, so I am going in tomorrow at 7:45 AM. This was actually good news for me, because I have book club tonight, which I sooo look forward to, and I did not want to miss book club while stuck in the hospital waiting to have some ultrasound for a condition I probably don't have. And with that said, I am off to book club. It is five blocks away, and I am attempting to walk there, so wish me luck.