The two bouts of cellulitis threw things off a bit, but things are now back on track.
My dentist, the wonderful Dr. Lawrence Wang, of Madison Square Dentistry in Manhattan (call me if you want a referral – he can even x-ray me without problems), squeezed me in for today. When I got there, he noted that I didn’t need a root canal, which would have thrown the schedule off even more, just a deep filling, which he did along with a cleaning. With the dental work out of the way, I was able to call the surgeon’s office and get my heart surgery scheduled!
The date for my heart surgery is, as of this moment, March 26th, 2014.
Yes, I’m scared. I’d be an idiot not to be scared. But I am hoping that this will give me back my life, or at least some portion thereof, so I am also very excited!
I’ve also seen the neurologist, although I will now have to move the appointment for the nerve test since I will likely still be in the hospital on the March 31st.
So, that is where things are at for the moment, and I am delighted that I will finally be making some real progress on getting my life back.
Got home Friday, but was really too tired to think to write.
The thing is, neither my primary care guy, nor I, wanted me home until the cellulitis was thoroughly licked. However, the infectious diseases guy decided to switch me from intravenous to oral meds. Once that happens, there is no need for a hospital bed. As my physician, my primary care guy wanted to keep me in; as a hospital administrator, he’s kind of bound to follow the hospital’s policies, rather than fighting them. So, I’m home, on two antibiotics, and in my own bed again. OTOH, the food at home is a hell of a lot better. Follow up appointment is in place already; so I just have to reschedule the dentist, and talk to him about his timetable for the needed dental work, so I can then schedule the open heart surgery.
Of course, given that things often don’t run smoothly for me, I was not surprised when I woke up this morning with all the symptoms of a cold. given the two antibiotics, I wasn’t sure if I could use my standard cold remedy (Coricidin HBP Cold & Flu) safely, but it being Sunday, I knew no one is at my doctor’s office. However, I had downloaded Doctor on Demand, the new mobile “connect with a doctor” service started by Dr. Phil McGraw and his son. While the normal co-pay for the service is $40 for a 15 minute visit, until the end of February, all calls to the service are free (you do have to give them your credit information, though). I called, was assigned to a doctor within about 20 seconds, and the doctor not only answered the questions I had about using the cold meds with all the other meds I’m taking, he was able to give me a little reassurance about where and with whom I am having the open heart surgery done. Again, I don’t expect to be using them often, because I do have excellent Real Life physicians, but I can see where this is a very useful backup for when those physicians are not available. It can be downloaded for both iPhone and Android devices, and – whether you like or hate Dr. Phil – is a useful thing.
Other than that, not much is happening this weekend. I am being kind to myself by trying not to overdo things.
To be specific, I’m in Beth Israel Kings Highway Hospital, Room 161, Bed 1.
I woke up Sunday and my left leg was bright red and very warm. Called Naomi Moslow, who came over and agreed with me that it was cellulitis. I was gonna wait until Monday and go see Dr. Bilik. However, by suset, the leg was also 3 times its normal size, so the roomie and I called a cab and headed to the hospital.
The infection seems to be fighting back this time, which sucks because I cannot have the open heart surgery until this is thoroughly kicked to the curb. The one good thing about this, so far, is that they finally figured out that I am mildly allergic to vancomycin, which is why my legs blister and peel every time they give it to me.
The bigger problem is that if I am an infection risk. Then I cannot have the surgery until that risk is eliminated. My other news, that I was planning to blog, but that got pre-empted by this mess, is that I met with the surgeon, we hit it off, and have tentatively planned the surgery for end of March/beginning of April, to allow for some dental work I need done to get handled first, since a post-operative infection could kill me. Fortunately for me, Dr. Bilik, my primary care guy, is as determined to get this handled as I am.
I am, therefore, guardedly hopeful. I am also not rushing to get out of here. I don’t love hospitals, but I will stay here until we have gotten this sucker licked. I have to. My life quite literally depends on it.
Calls, visits, and emails are welcome, of course. They are the thing keeping me from just curling up into a ball and giving up. That is the hardest thing for me – to not lose faith that this will all be resolved. There are good days, of course, but there are also days when it seems like I get one thing handled, and two more things pop up to replace them. I will get through this — those of you who know me in RL know how much of a defining trait stubborn is for me.
Anyway, the nurse needs me to help another patient get computer access (I must look like a techie geek), so I’ll cach up with everyone later.
This past week has been full of snow and medical appointments.
The snow, of course, makes it pretty much impossible to do anything via public transit for me. However, the surgical consult was set for Tuesday, and there was no way in hell I was putting that off given that snow was predicted for both Monday and Wednesday.
Made it to the consult and met Dr. Stelzer and his nurse practitioner Laurita, as well as his lovely receptionist, Cathy. We had a good talk, and I have convinced him that I should have the surgery. He thinks my attitude is great, and that I am something of a force of nature. Called the cardiologist on the way home, and he told me he thinks I’m brave. I don’t get that, honestly. I’m not stupid. I’m scared to death about having my chest cracked open. However, all I’m doing is what is necessary; I don’t see it as particularly brave.
One thing is that I may need some dental work done, so that has to be gotten out of the way before have the heart surgery. The reason for this is that if I have it done after the surgery, and I get an infection, it could kill me. I also now have to take an antibiotic an hour before I go to the dentist to prevent infections from happening. We are looking at doing the heart surgery at the end of March/beginning of April, in order for me to get the dental work out of the way.
This is all a whole new world to me, having to take precautions for everything, but if it will maximize my chances of pulling through it, it’s what I have to do.
In order for the dentist to do his thing, however, I had to get a clearance in writing from my primary care guy. So, when I got home Tuesday, I called my primary care and got them to squeeze me in for Wednesday, so I could get the clearance, and also a referral in writing for the neurologist I need to see about the possible development of Cubital Tunnel Syndrome in my hands, and of a non-diabetic neuropathy in my legs and feet. Made it home before the snow, but think I may have picked up a cold in his waiting room. Such is life.
Other than that, I’m still hanging in. I ordered and received a hula hoop, which I plan to use to do some low impact exercising with. My outlook is reasonably good, all things considered, and I’m trying not to overthink things, lest I eat myself alive with worry.
So that’s where things are at right now. It feels kind of like hurry up and wait at some levels, but there is forward movement, and it’s real forward movement, so I am grateful.
…And likely to get colder as this new spate of polar air and snow sets in. In fact, this is a hearty soup for breakfast kind of day, which works because when I couldn’t sleep overnight, I made a big batch of soup. Not my usual formal recipe kind of soup, but a Use-Up-A-Few-Things soup. This one had leftover pork shoulder, an older bag of 16-bean soup bean mix, the drippings (minus the fat) from the pork shoulder, some farro that needed using up, a can of beef broth a can of crushed tomatoes, a can of Ro*Tel, and one tomato can of water. Came out delicious. I’m planning to – when I package it for freezing and fridging - pull the pork out of one container, puree it in the NutriBullet, then add the pork back for a thicker soup, although I like it just the way it is. Heck, it’s cold enough that I’m seriously thinking of keeping the pot on the stove, and adding things over the course of the day, like some pierogies and some kielbasa. However, I’ll probably just do the pierogies and kielbasa separately for lunch.
Mostly, I’m waiting to call the hospital to postpone my consultation with the surgeon. Their office was closed yesterday, so I left a message, but I want to confirm the cancellation, and get a new date, preferably after the end of this cold spell. One of the things I found out over the last few months is that it’s much harder to travel when it’s cold like this, because the cold is likely to trigger the asthma on top of the heart issues. UPDATE: Appointment has been moved to next Tuesday, at 2 pm.
So, to catch up on my life since the 16th…
I’ve been reading, when I can concentrate enough. One of the books I was able to concentrate enough to read was Lawrence Block’s newest Bernie Rhodenbarr book, The Burglar Who Counted the Spoons, which I enjoyed greatly. It’s no secret that Block is one of my two favorite mystery writers (the other being the late Robert B. Parker), and that Bernie is one of my favorite series of Block’s. This one did not disappoint, and I recommend it to anyone who likes a good, NYC-based tale, with a witty protagonist and cool support characters, full of sly humor.
Mostly, though, what concentration I have is reserved for things like writing press releases, editing theses, etc. I need to get more work, but right now it’s a balancing act, and I hate not being able to push myself beyond a certain point. Other than that, I’m mostly online, talking to people, so that I’m not eating my own tail over the whole situation. The mostly good news is that I have adjusted to having had to cut my sister out of my life, even though I’m still very sad that I had to do so. On the other tentacle, my fannish sisters have let me know I’m not alone. The roomie continues to be as helpful as she can – running errands for me so I can conserve energy – being my voice on the phone when my voice gives out, etc. The odd thing is that my voice seems to be coming back very slowly, in fits and starts. There was a whole morning when I sounded like myself. I am hoping that this just means that I strained something, and my voice will eventually come back totally. One of the worst things about this whole mess has been losing my voice so badly. I have a hard enough time making myself understood when people *can* hear me; when they can’t, life becomes that much harder all around.
Most of my friends were at Arisia this past weekend, which I was glad to hear went well for all of them. However, one of my Boston friends had decided that – for various reasons – she would rather skip Arisia and come and visit both me and some of her family in the area. It was delightful to see her, and I wish we could have hung out longer, but we had the whole afternoon together, including lunch at my favorite Indian restaurant (roomie, friend, and me), and then the friend driving me to the fannish party I was going to that evening, since it was on her way to her family’s place. The party went well, and Marc drove me home afterwards, along with pretty much the rest of the guests.
Sunday was pretty quiet, except for a surprise: Amazon.com delivered the cookbook I had ordered (Not Your Mother’s Slow Cooker Cookbook, by Beth Hensperger and Julie Kaufmann). Four different cooking blogs had recommended this book at different times, and I finally took the hint. I’m glad I did, too; I want to make everything in the book! In fact, I told Marc that I foresaw a lot of soups, stews, and braises in his future.
So, that’s where things are at for the moment. I’ve planned a warm pasta dish for dinner, based on a recipe I found on the Web: Northwest Edible Life’s Cabbage and Pasta with Mustard Cream Sauce. Sounds yummy, and both the roomie and I like cabbage. The roomie and I have been trying to cut down our meat consumption a bit, and this sounds just right for a hideously cold evening. Mind, we are not cutting meat out entirely, and I just downloaded a meat recipe from a friend that I will try when we can next get to the local market. One good thing about our local market, Silver Star on Nostrand Avenue, between Avenues Y & Z, is that it started out as a meat market/butcher. This means that the meat we get there is nice and fresh which is a wonderful thing.
See all of y’all in a couple of days, hopefully.
I’ve wanted a Magic Bullet blender since I first saw an ad for it on late night TV, but the time was never right to buy one. Either money was tight, or I couldn’t find it on sale. Found the NutriBullet on sale at Sears a couple of weeks at Sears.com, and ordered one. This is their latest innovation, which pulverizes nuts and seeds.
Had my first “green smoothie” about two days ago. It was pretty good once I got over that I was drinking something green. I used spinach, an apple, some grapes, some blueberries, and about 1/8 cup of cashews. Stuffed the spinach into the bottom of the cup (filled it halfway with the spinach), added the other fruit, then put in water until the “Max” line, per the instructions. Put the blade on the cup, put it into the base, and about 30 seconds later, I had my drink. Tasted pretty good, although a bit bland, but then I didn’t use any sweeteners or anything to amp it up.
Today, I tried something else. Took a packet of the Weight Watchers Smoothie Mix (Creamy Coconut), and added a banana, a pear, and a bit less water than called for. It’s pretty much perfect tastewise. Very happy!
In other news, my primary care guy was as good as his word. Last Wednesday, the cardiologist called me with a referral to a surgeon. I have made an appointment to see him (next Tuesday), and will update you after that. I know I’m not a good candidate for surgery at this point, but what I want to talk to him about is the following:
- What needs to happen to improve my chances of being a good candidate for the surgery I need (septal myectomy),
- What are the complications and risks that accompany that surgery, so I know what to put on my Medical Power of Attorney and my Living Will in case things go pear-shaped, and
- What the probable/possible outcomes of the surgery are.
While I am, in reality, not close to getting the surgery, the good thing is that it feels like there is real progress happening, so I am in a much less hopeless frame of mind. Even better, should this surgeon not work out for whatever reason, a friend of mine who is an RN has found me two other names to check, one of whom even takes my insurance. She also suggested that I might want to check out AARP re dental insurance, and that way I could possibly have my old dentist, who I adore, back. I just did that, and I now will have real dental insurance as of February 1st, at a price I can sort of afford. I also have a dental appointment for February 5th. So there’s some real progress to point at!
I have made peace with the decision about the toxic family member. As I noted, it was a horrible decision to have to make, but I feel so much better for having made it. I’m feeling a lot more hopeful than I was a month ago; at least I am today. I have to admit, this whole thing has been something of an emotional rollercoaster, which is what has been the hardest thing to deal with. I can deal with not being able to go out a lot, even though there are days when I feel trapped in the house. My friends have taken steps to make sure I get out a little each week, so that’s helpful in fighting that feeing off.
Anyway the upshot is that I’m still hanging in, still in fighting to get things right mode, and fairly happy at the moment.
I did get a call from my cardiologist today, with a referral to a surgeon he knows at Mount Sinai. I asked him about the two my friend the nurse recommended, and his flat response was, “I don’t know them.” My answer to that was that it sure couldn’t hurt for him to get to know them, just in case.
So, my next things to deal with medically are:
1. Set up appointments with the surgeons (I need to see if I can get referrals to the two that my nurse friend found, to deal with the insurance end of things).
2. Set up an appointment with the neurologist that Dr. K. referred me to re the cubital tunnel syndrome and the foot neuropathy.
3. Get a referral from either my internist or my cardiologist for an ENT guy to see what the hell is really wrong with my voice.
4. I know I have a tooth that will eventually need to be root canalled. Since the dentist I got from Medicaid’s only benefit is that he is four blocks away, I need to see if I can get dental coverage from AARP, so that I can go back to my really good dentist in Manhattan.
And, once again, I want to thank all my friends for stepping up to help, no matter what form your help takes. You guys make it hella easier to keep fighting.