Progress?

Okay.   Maybe today’s post will be a little bit better.

Yesterday was still horrible and emotionally fraught, but I really think we made some progress with this whole healthcare thing.  I finally got to see Dr. Lakhani, and he finally got to see what the hell even happened to me.  He knew I was having a second pituitary surgery, but that was it.  He had no idea what had been done, how much of my pituitary gland had been taken out, what medications I was on . . .he was completely in the dark.  That had been part of the problem.   It was hard for him to treat me if he had no idea what he was supposed to be treating me for.

He spent a good half hour with me going over the records from Seattle, and figuring out my medications and where I’m at right now.  So now I have Dr. Russell on board and I have Dr. Lakhani on board, and I’m starting to feel a little bit more centered. Like, if something happened, there would be two really good doctors at Vanderbilt that know what to do for me.

The infection thing is still a very sensitive subject.  I’m still getting a lot of pushback on that, but what it boils down to is that no one at Vanderbilt wants the liability of dealing with someone else’s wound.  If they start playing around it, and I get sicker, it’s on them. But then again, if they don’t start doing something soon and I get sicker, they’re going to have a bigger problem, too.

My mother got in touch with Dr. L. yesterday and much to my surprise, Dr. L. had NO IDEA I had an infection.  Lots of people in his office know about the infection, but no one bothered to tell him.  Needless to say, he was fit to be tied.  We are now under strict instructions to ONLY talk to him and no one else.  He is going to try to get home health ordered for me, even if my insurance company tries to raise a stink about him being a doctor in Washington and not in Tennessee.  If, for whatever reason, he can’t get home health, then I’m on a flight back to Seattle, and I’m being readmitted to the hospital until I am healthy again.  He’ll combine that trip with what would have been my 6-week followup so I don’t have to come back out again.  It gets pretty expensive flying to Seattle every two weeks, and he understands that.

So, hopefully today I get home health with skilled nursing so I can get rid of this dead blasted infection.  My stepsister changed the dressing again for me last night.  It’s still oozing, and it’s light pink.  It’s not a vibrant, healthy pink so it’s not completely on the mend, but at least it is pink.  And while I’m waiting on this home health stuff, I’m going to just pay $30 co-pays at urgent care facilities so a doctor is looking at it, cleaning it, and making sure I’m on the mend.  This infection cannot get worse.  I can’t afford an infection – not two weeks post brain surgery and on all of these steroids.  I can’t let this slip through the cracks, and it’s still infuriating to me that I even have to worry about it at all.

Speaking of steroids, I am trying to taper down and it’s brutal.  I am soooooo nauseous, but both Dr. Lakhani and Dr. Ludlam have told me that I have no choice now.  I have to taper down.  My body is going to be a melodramatic drama queen and make me feel like I’m dying, but as long as I’m not throwing up, I’m fine.   I feel like I want to throw up, but I’ve just got to sit tight and let my body adjust.   So the plan for today is to lie in bed all day, take my anti-nausea stuff and try to sleep my way through the taper.  It’s mind over matter now.

The CSF leak/rotting fat graft still makes me sick, too, so I have a double whammy, but I hope, hope, hope that tapering off the steroids will make it heal for good.   Even if it doesn’t, at least I know I do have a surgical option to go in and repair it next week.  These setbacks have really depressed me and I’m pretty down and out, but I just have to buckle down and get through it.

In the meantime, if anyone wants to bring me a milkshake, protein shake or smoothie I will gladly accept.   I’m discovering that solid foods are not an option right now with all of this nausea.   I’m going to be on a liquid diet/soft food diet for the next few days while my body adjusts.  I’m not looking forward to laying in bed with nausea for the next couple of weeks, but it is what it is.

And hopefully I will turn that corner and heal and get on with my life.   I have a lot to deal with, but I have to take it one day at a time.  I can’t concentrate on pituitary function right now, or having to lose 100 pounds, or the long-term consequences of this surgery. I just have to focus on the here and now.

Easier said than done.  :(

 

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