Archive for October 2013
It’s been an interesting week. I saw the cardiologist on Wednesday, and we discussed where to go next.
It seems there has been a shift in the field away from doing the surgery I need, which is called a septal myectomy, towards doing alcohol ablations. Unfortunately, while ablation is certainly the less invasive of the two procedures, it won’t allow for dealing with some of the issues that have arisen as side problems, such as the now enlarged heart compressing something affecting my vocal cords and breathing.
My cardiologist is trying to find a surgeon who does the septal myectiomy in enough numbers that he can be confident enough to set up a consult for me. He is not getting the answers he wants at his hospital, so he is going to be taking the next month to look for surgeons in various other places. The downside is that this may mean I need to travel to another city to get the procedure done.
While he does that research, however, I will be reading up more on both procedures, and will also be trying to lose a bit of weight. We are not going for any spectacular drops here – my mobility is pretty limited. However, Medicaid has provided me with a rolling walker (rollator) with a seat, so I should be able to start getting around locally, at least. I am not happy with the idea of trying to get something as wide as I am on and off public transit yet, but I have no problem with walking around the neighborhood with it to get used to it.
The rollator arrived yesterday, and I got the arms and backrest set. I would have taken it out for a spin today, but the weather has been threatening to be very nasty. Also, before I go running around with it, I want to acquire a coupe of short bungee cords, so that when I need to collapse it, it will stay collapsed – something that will be important if I want to go to restaurants, or on busses with it. Still, the rollator will allow me to start getting a bit of mild exercise, which will help with the weight loss.
One reason, we want to try a little weight loss is that I was discussing my experience with weight loss with the cardiologist, and the results that occurred the last time I was able to lose a large portion of my weight. If we can cut out some of the medications that had to be increased when I gained the weight back, maybe we can lower the severity of some of the symptoms. Certainly, whatever weight I do lose will make it easier to get around.
Unfortunately, my sister does not seem to understand that all open heart surgery is not the same. She keeps insisting that if he called a particular hospital near her, they would do the surgery in a few days. I have tried to explain to her that the open heart surgery that is most commonly done, the bypass and or stents, is not the open heart surgery I need to have done, but she keeps insisting that the problem the cardiologist is having is finding a surgeon who will do it while I am on Medicaid. She refuses to get that there has been a shift in what the field considers to be the right way to treat my particular issue.
My cardiologist knows that I have not written off the idea of ablation, but that I agree with him that the septal myectomy would allow for a more complete treatment of the issues at hand, including repair of the malfunctioning heart valve.
Fortunately for me, my sister doesn’t get to make the decision as to what course I will pursue. However well meaning she is, she does not understand that just because a hospital does a lot of open heart surgery, it doesn’t mean they do the particular surgery in the numbers that would make my cardiologist feel confident.
So, for now, I get to sit and wait.
Posted October 6, 2013on:
Since I live on the outer edge of Brooklyn, often seeing friends involves me traveling either to downtown Brooklyn or Manhattan.
Thursday was one of those days. I was meeting a group of friends for dinner. The last express bus into Manhattan leaves my bust stop (three blocks from my house) at about 3:05, though. Currently, this means I need to have a plan of where I will be for the time period from my arrival in Manhattan – approximately 4:30 to 5:00 – until it’s time to meet my friends – approximately 6:30 to 7:00 – because I can no longer just walk around window shopping.
This week, I agreed to meet one of my friends at Bryant Park, which runs from 40th Street to 42nd Street along Sixth Avenue, back to the library (yeah, the big one, with the lions in front) that fronts on Fifth Avenue. Theoretically, this is an easy walk – get off the bus at 41st and Madison, and walk a block to 40th, and walk along 40th for about a block and a half to the nearest park entrance. When I was healthy, this was the easiest thing in the world, even if the bus driver let me off somewhere other than the stop due to traffic or other stuff.
However, I am not healthy at the moment.
The driver let me off at 38th Street, which wasn’t a bad thing, but meant I had an extra block to walk. Now, because of the heart issue I am walking slower than a crawl these days, and every extra step costs me in energy. For those of you who understand Christine Miserandino’s Spoon Theory, you know where this is going, kinda.
By the time I got to the park, I was exhausted. We sat and enjoyed some people watching until a bit after 6, then got up to go to the restaurant, which was on the south side of 38th Street between Fifth and Sixth Avenues. We made it, going far more slowly than I would have liked, but that’s not what I wanted to write about mostly.
You see, I was trying to explain to my friend how walking in my current condition was very different from walking when healthy. And it occurred to me that I should write about that here.
When you are healthy and you are walking somewhere, you aren’t really thinking about it. You may be conversing with a friend, talking or texting, watching the cute guy or gal ahead of you, but whatever you are doing, you are just walking.
When I go walking now, I have to consciously be aware of everything around me. It’s kind of like when you first start driving, in some senses. I need to be hyper aware. I need to be watching every step I take, while being aware of who around me isn’t watching where they are going and might accidentally kick my cane throwing me out of balance and into a fall (yes, that has happened), where and how far I put my cane, so I don’t accidentally hit someone, the evenness of the ground (or lack thereof), how my feet hit the ground when I walk (because if I don’t hit the ground and my ankle turns, I end up falling), how crowded the sidewalk is, if there are little kids in the vicinity I have to watch out for, is there somewhere I can stop without causing problems when I run out of breath (and, yes, that is an issue when walking in Manhattan during evening rush hour), and I have to assess with every step whether I need to stop, or if I can keep going. Add in things like crossing streets, which involve being aware of vehicles, pedestrians, traffic, stop lights, and policemen, and it becomes a very energy-intensive process, requiring my full brain. I also need to be aware of where restrooms are, since industrial strength furosemide means that when I have to go, I have to go NOW.
I am not complaining, mind. It is what it is, and I am grateful that I have any mobility at this point. Further, it will eventually get better when the heart issue has been dealt with.
The thing is, it affects my planning. When I go out, I have to know that I need to deal with all of this, instead of just walking the way I used to be able to do. This means I have to plan my transit route very carefully, and find a place close to where we are going to be meeting to wait. Now, when I was healthy, close could be anywhere within a mile of the ultimate destination. These days, close means within a block or two, or I will be totally out of energy getting from where I am waiting to the destination.
Worst, it means that walking, which I have always loved because I could just take off and go walking, now requires planning, coordination, and being super aware of every choice I make in an afternoon.
I know that those of my friends who are mobility impaired know all about this, but I also have friends who are not mobility impaired, and I often find that, while they are sympathetic, they really don’t know how it’s different to walk when you are having health issues. They see me struggling to walk half a block, where I used to be able to walk three to five miles. They think that if I walked more, the problem would go away. They are sympathetic, and well-meaning but they do not understand how walking when you have a heart/breathing issue is different from walking when your body works the way it does when you don’t have those issues. And I pray daily, that those friends never have to find out firsthand how different it is.
Anyway, I just wanted to get down how it’s different to do even something as automatic as walking when you have a health issue. Thanks, as always, for reading.
As many of you know, I was scheduled for an angiogram on Monday.
To make things easier, I stayed at my sister’s house on Sunday night, since we were gonna have to leave for the hospital at 0-dark-30. Got to the hospital on time, and signed in. They took me pretty quickly, and the procedure was over by 10:00 am. However, they kept me flat on my back in recovery for four hours following that, so I didn’t get out of the hospital until about 2:30 — just in time for us to hit major traffic snarls in Manhattan. I managed to get her to the FDR Drive, which was the easiest way to get to the Brooklyn Bridge. Got home safe, did a little work, then went to bed.
The good news is that there are no additional issues to deal with, according to the doctor who did the angiogram. Given my family’s medical history, that was about the best news I could hope for. Next step is to see my cardiologist next Wednesday, and find out if the work can be done with a particular minimally invasive procedure, or if I will need full open heart surgery anyway. Still I will take my good news where I can get it these days.
The dressing was kind of badly done, so although the incision area is healing fine, they managed to create a huge area at a skin fold that is chafed beyond raw. Fortunately, one of my friends is an LPN, and she has been coming over to change the dressing. This is working pretty well: I hold the skin taut, and she does the cleaning and bandaging. The alcohol to clean the chafed area stings horribly, but it sure beats getting an infection. Fortunately, I always have triple antibiotic cream in the house, so that goes on after the cleaning and before the bandage.
Spirit-wise, I’m doing mostly okay. I have times when the whole situation depresses me, especially not being able to speak in my normal voice. The cardiologist has a theory or two about why that is happening, and we need to check that out more before we do the surgery.
Fortunately, I do have some really good friends, who are making sure I don’t feel totally abandoned during the whole mess (I won’t mention names – you guys know who you are).
I am prohibited from lugging things for the next few days, so when I go out to head to dinner today, the computer will stay home for a change. It will feel weird, but better to be safe than sorry.
Anyway, that’s where things are standing at the moment. I’m in a waiting phase, but at least I know that things are not going to be the worst case scenario, which I was really afraid would be the outcome of the angiogram.