Looking Towards Surgery: The Plan

November 15, 2012 at 7:43 pm (Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , )

I am happily writing this post from the comfort of my bedroom at The Squat. I was discharged today after my “two to three” day stay that was actually six. But a lot of good was done in those six days; the abscess was repunctured and all of the infected fluids that had collected inside was drained out and cultured. I found out definitely what kind of infection (or at least one of them) resides in my pannus and was given a strong antibiotic that will help clear up some of the immediate threat. I was able to start my course of Isoniazid while being observed in a medical setting to make sure I didn’t have any negative reactions to it; and I got a much better understanding of what I face when I go back in the end of December for my panniculectomy.

The biggest goal between now and then is to keep the infection(s) as low as possible. It’s unlikely I will be completely infection-free before the surgery; after all, that’s a big reason for the surgery, to remove not only the pockets of abscess, but all of the infected and necrotic tissue that has built up in my belly since the hernia repair in April (and who knows, maybe before). I have been chastised to take the bedrest “suggestion” much more seriously, so other than some low-key social gatherings (like going over to a friend’s house for Thanksgiving) I will be spending the majority of my time in my bedroom being a big ol’ slacker.

I not only have to go to a few follow-up appointments to make sure the infections are doing as well as they can, but I have to see a pulminologist to assess my strengths and weaknesses where a long surgery is concerned. I want to get my daily life in a place where I can convalesce for a month or more at Johns Hopkins without a lot of worries back home. This includes doing what I can to help Rave get the search for a more permanent place to live into full gear, getting my meager belongings that are here ready to be moved in my absence, and making sure that I have little to nothing to stress about so I can fully focus on getting better.

In an odd way, I feel that this unplanned trip to JH turned out to be a very good thing. I was feeling a bit at loose ends about the upcoming surgery since there was really nothing planned until my pre-op appointment with the plastic surgeon on Dec 14th. It gave my doctors a chance to think and experiment with pain management post operatively that really takes my (somewhat high) tolerance for opiates into consideration. (A regimen that actually brought the pain related to all of this down from a 7 to a 4 on a regular basis, that did not require IV access was put together the day before I was discharged. Because it increased some of the meds I already take by quite a bit, the chance to “try it out” before I was home and on my own not only to make sure it addressed my pain, but was something that didn’t leave me a drooling nonfunctional mess was appreciated.)

It also highlighted some weaknesses I need to address before the surgery. Rave busted her ass, like she always does, to be as available to me as she possibly could, but at the cost of enough repairative sleep to allow her to be fully functional at work without having to rely on her wakefulness drugs or caffeine, which in turn gives her migraines. When I go in for the long haul, it will be better for both of us if we can figure out a schedule that allows her to feel useful and be available to me when I need her, but also gives her “nights off” so she can get the sleep she needs. This means we may need to find other people who have evening/nighttime availability to spend time with me, but also make sure I have occasional daytime visitors who can help with some of the needs/tasks that I can’t ask a nurse or tech to do.

I think it’s important for people to understand that although visitors who come purely to socialize are nice and appreciated, it’s not the only reason I may want friends and family around. For instance, I had a really difficult time this visit getting the nutritional team to understand and meet my basic food needs, so having people bring me supplemental food and drinks can assure that I’m not going without. I may also want someone I feel completely comfortable with assisting me with things like hygiene, rather than having to ask a stranger, especially since the inpatient experience forcibly strips you of a fair amount of privacy and autonomy already. Being able to run down the day’s meetings with various doctors and other medical professionals with someone else not only helps solidify my own recollection – which I have issues with due to some of the neuro issues – but brings a fresh perspective and alternate points of view that may hold important answers for difficult situations. Sometimes, having someone else present while meeting with a doctor can help remind me to ask questions I may otherwise forget, or bring up subjects that those who assist me might benefit from knowing. Even something as simple as watching as a nurse dresses a wound in a particular way can then lead to having someone who can teach those who can’t be present when it’s demonstrated (but who will eventually be in charge of doing the dressing).

And it’s worth mentioning that this trip was incredibly emotional for me. Admittedly, part of the problem was that I got my period two weeks early (practically unheard of for me) so I’m sure my hormones were all messed up trying to deal with that. But I had two days where my anxiety was bad enough that the nurses were suggesting I take some of my anti-anxiety medication, and not having someone who could serve as a touchstone to reality exacerbated issues. I am, by no means, trying to guilt people about not being able to visit, especially since this trip was unplanned and happened to fall almost entirely during a work week, but more to share something Rave and I learned about the power of visitors.

One of my fears about how the planning for the upcoming surgery is falling out is that I have plenty of friends and lovers who are coming from out of town to be there directly before and after the procedure, but most of them will have to return home once I am stable. That leaves me with several weeks where I will still be stuck there, so it might behoove me to reach out to friends and family and set up some planned visits during that time. It can be anything from a local friend making the commitment to come “every Wednesday afternoon”, to other long-distance friends making a trip down to spend the weekend. If you’d like to volunteer for this important service, please email me at awesome.del@gmail dot com so I can start putting together a calendar. If you aren’t local and want to come for a visit, we have lots of resources not only for crash space, but also for people who can lend you a car, or drive you around, or provide meals so together we can minimize the cost. In that vein, if you have those sorts of things you could offer others, or skills/talents/abilities that we might be able to put to good use during this time, please let us know.

That being said, I think it’s okay to mention that in the next few days, Rave and I are beginning to collect funds specifically to help defray the costs of those who have the time and/or inclination to visit, but for whom money is an issue. It’s not the only reason we’ve decided to pass the hat, but it’s one of the most important ones. We’ll also accrue some costs that come with a long term hospital stay that medical insurance doesn’t cover – gas and parking costs, comfort items, etc. Most importantly, my insurance doesn’t cover any of the sorts of things one needs once home again, like bandages, tape, cleaning supplies, and the like. The nurses usually throw together a “care package” of items to help me out, but when I had the first drain in, we eventually ran out and had to source a lot of this kind of stuff on our own.

When the announcement goes out, there will also be things that people who live too far away, or for other reasons cannot contribute time, resources, or money, can do to be of assistance. For example, we will have a phone/email tree set up so people can be kept up to date with how I’m doing without having to clog Facebook (or share intimate details about my recovery with people I barely know) or having to wait until there’s enough for a blog post. We will need a few “captains” who can be in charge of a list of three or four people; make sure everyone gets information and also to collect questions/observations and aggregate them so the “home team” can address them without having to compose the same response several times. (You know, this sounds so complicated, but I’m actually kinda flattered that there are so many people who care about me and my welfare and want to be kept in the loop. When I stop worrying about the details and look at the bigger picture, I’m always humbled by how much affection there is for me in the world. Really.)

Finally, I have “appointed” my friends and (somewhat unofficial) clergy persons Hugh and Shelly to undertake the spiritual support side. There will be a post before the surgery that will help coordinate all the wonderful prayers, energy, and will-working that people have so generously offered.

For now, I’m very glad to be home and in comfortable surroundings. I’m pleased that I have a pain control plan that actually makes things tolerable, and can be proactive about fighting off some of the infection to make the surgery’s success easier. This was a welcome eye-opener on how Rave and I can better plan for what’s coming to minimize our stress and help distribute the work so no one person is overtaxed and everyone – me included – gets the care they need to get through this.

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2 Comments

  1. EVCelt said,

    Glad you are home!

    Thanks for the updated medical info… I will refocus my prayers (especially to Brigid and Sulis) on keeping the infections low as possible.

    I will send you a private email about my post-surgery availability.

    Oh, and it’s a serious subject, but “panniculectomy” is a cool word to say. I think I may say it to Mungo-dog and if I’m lucky, he’ll cock his head at me with that “WTF?” look of his…

  2. allura said,

    If the email loop is only a few people, I could probably handle that. I would make sure I wasn’t medicated when I write the emails out so they make sense. Also, I would need some kind of idea what information gets to whom, so the practicality of this would be to give me people with the same level of “clearance” for sensitivity purposes.

    On another level, if you would like, we could set up a day and time (or a time each day) when I could be available to chat with you via computer. I’m not yet cleared to be driving, or to drive more than 1/2 an hour. But if you are not opposed to using google hangout (or whatever method you prefer) we could set up a time to share our frustrations with our medical care, the pace and energy healing takes, or just share “getting to know you” type things.

    Of all the people I know who have dealt with chronic illness, I think that you are the most able to understand my mental status and how strange it can be at times.

    If there is anything else that I can do from home, please let me know. I’d like to help someone else while I am still getting my own help here at home.

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