Friday was a complicated day. It was supposed to be my first (half) day back at work, but the best laid plans of mice and men…
I saw my gastroenterologist in the morning, and he’s beginning to think the best thing to do is to consider “gastric pacing” for the gastroparesis, because it is thus far not well enough controlled via medication. I’m still losing weight, but not at an alarming rate thankfully. I’m in pain all the time, nauseated all the time, and can barely keep food down. When I do keep food down, the pain is excruciating and I spend hours worried I’m about to throw up (and often do). Gastric pacing is, well, kind of what it sounds like. It’s essentially a pacemaker for your stomach. It’s done laparascopically, but I don’t know whether it’s inpatient or outpatient. Frankly, I’m getting tired of having to learn new medical terms. My google-fu is extremely good these days and I really wish I weren’t so practiced at it. Anyway, I’m thinking if this really is the direction we end up going in, I want to wait until the end of the summer to deal with it. I’ve already had enough surgeries to last me for the summer. Meanwhile, he wants me to go get a second opinion from the chief of gastroenterology at GW. Her schedule, unfortunately, is booked out until February. So he’s going to call her directly and see if she’ll squeeze me in, because obviously waiting until February is not an option. Right now I can’t keep down a bite of food without taking four (4!) different medications before eating. No way I can survive like this until February.
I love my gastroenterologist. He really cares about how I’m doing, he’s extremely sympathetic. It’s important to him that my pain be appropriately controlled and that I get better. I mostly joke with him about my crap luck when it comes to all things medical – I mean, I can either laugh or cry about it, right? And I’m tired of crying. And he said to me, “I know you’re sitting here laughing about it, but I also know that underneath that, you’re really suffering and I want to make you better.” He emphasized that sending me to GW for another opinion was in no way suggesting that he was releasing me as a patient, which is good because I love him and he’s my best doctor (and I have a lot of really awesome doctors) – he’s not allowed to get rid of me that easily. He also said if I start losing weight at a faster rate, he’ll probably put me on TPN – something I’d done my best to avoid through my entire pregnancy, but probably not a terrible idea if this goes on for too much longer.
When I left the GI’s office, I called my surgeon’s office because my abscess was getting worse and when I’d talked to them on Thursday about it, they’d said to check in Friday morning. Not any better, and I was running a low-grade fever, so they brought me in to see my doctor’s partner (my doctor was at the surgery center). When I got there, the doc tried to aspirate it, but said the best thing to do would be to go back in there, either through the existing incision or another one, so they called over to the surgery center to see if Dr. C. could fit me in. Luckily (thanks to the magic of gastroparesis), I hadn’t eaten anything, despite the fact that it was almost lunchtime. So I called a friend and asked if she could pick me up after the surgery (can’t drive after general anesthesia) and thankfully she was free. Then I called Seth to tell him he’d need to find his own ride home from work (I had his car and had been planning to pick him up). Then I called my boss and told him I wasn’t going to be in after all and that I’d see him on Monday. Sigh.
So that makes three emergency surgeries in three weeks. See why I want to put off this gastric pacing thing?
I have a post-op appointment Monday morning, and then I’ll be at work for the rest of the day. You know, assuming that I don’t have another surprise surgery. (Maybe I shouldn’t even tempt fate by saying that!)
That’s all for now. I think it’s quite enough anyway.
ChezPerky 
Oh, Karen. I want to tuck you into my big squashy leather recliner with a flannel throw and a tv tray for your pill bottles and force you to read novels for a week. Honestly you poor thing, this just bites the big one and I know way too much about gastroparesis to be laughing at this myself (my husband and youngest son, who are unrelated by blood, are both sufferers).
My husband was terribly ill with gastroparesis before his organ transplants; he’d literally take a sip of water and vomit quarts of bile and stomach acid. At one point he had to keep an NG-tube in around the clock to use as a “shop-vac” even! Fortunately, since his transplants he only vomits when he’s ill and eats a normal-ish diet (he still can’t overdue it on protein and fat, like at a rib joint he can have a couple of beef ribs if he wants, but we mostly stick to lighter fare like pho if we’re going out to eat and he eats a lot of “white carbs” at home). He diagnosed my son, as a matter of fact.
My four-year-old is not as well from a GI standpoint as my husband is, and I can honestly say that glad as I am to have a live-in male role model with such keen empathy for the little guy, I’m gladder still that I didn’t meet my husband until after my youngest had his g-tube surgery and went on a liquid diet of elemental formula per g-tube. Because it was plenty hard having to insert the NG-tube in my fully aware and miserable infant without any hard date to back my assertions to healthcare providers that yes, it DID cause him a lot of pain and misery (NG-tubes aren’t the end of the world but they’re not very comfortable either after you’ve had one in for weeks or even months–they’re alright in a hospital setting or on a temporary basis but the baby in particular had very delicate mucous membranes as well as a bleeding disorder, so you do the math). Personally I’ve never had an NG-tube while awake, although I was very tempted to insert one with the aid of a mirror just out of curiosity when I was having to keep them in the baby’s nose at all times (my ex-husband insisted that was just weird but honestly, the doctors kept telling me babies disliked tubes because they weren’t aware enough to be sensible in their posture and movements or understand that it was beneficial to their health), but having discussed it with an adult and now with the child himself I am glad all over again that I insisted we go to a g-tube instead once it was clear this wasn’t going to be something the child grew out of in a matter of months!
Apparently gastric pacing isn’t very mainstream in pediatrics just yet, and my husband wasn’t a candidate as he was on peritoneal dialysis and everyone anticipated that he’d do fine post-transplant, but I’ve researched it extensively and in the case of an adult with idiopathic gastroparesis like yours I think it’s a very reasonable and prudent thing to get on with. Personally I wouldn’t wait; yes you’ve had a lot happen in a very short time (childbirth, your summer “Surgipalooza”) and are not in peak condition for MORE FREAKING SURGERY, but better nutrition would really help you heal from all of this more efficiently. I don’t say that lightly, but having had general anesthesia and extensive, invasive surgery as many as five times in one month (four of which were in the same week, and three of those in three consecutive days) I know it’s sometimes necessary to put Humpty together again before you touch up the paint and send him back out to deal with the general public.
That’s my $0.02, but it’s your body and your choice, so you have to do what makes the best sense to you and your family of course. I was so hoping that after you delivered Tobie you’d be able to tuck into a good meal in postpartum and get on with enjoying your sweet baby and would like to categorically and for the record declare that this is PATENTLY UNFAIR.
Kayen a hora, we’ll all get to celebrate once this debacle of a summer is on the books and everyone is well (my husband has been keeping me on my toes with procedures over here and I am ready to take the both of you off my worry-list, haha)!
Hm. Well it sounds like… things are moving along? I wish they were on the faster road to complete resolution, though. Fingers crossed you are one step closer to cured.
Bea
Thinking about you. Praying for you.
I don’t even know what to say. I just hope the shitty cards have all been dealt and you are done with the crap.
And I really hope you are feeling better.
Thinking of you and hoping that things start to look better soon. It’s really time for you to catch a bit of a break somehow. Hugs to you.
I really hope you start feeling better soon — you’ve been through so much, and it seems unfair the health issues are continuing even after Tobie’s birth!
By the way, you sent me the password at one point but I seem to have forgotten it — is there some way I could get it again?