debsliverlovers

We were fortunate enough to have Deb and Laurie over to our house for afternoon tea this past weekend! Deb looks fabulous, and was sufficiently energetic that she wanted to see our entire Victorian house (three stories + basement + carriage barn). She needs a cane for steadiness and has some tremors as leftovers of her neurologic damage from the porphyria, but she looks MUCH better than she did the last time we saw her in the hospital last fall. :) Laurie also looks good, and she and I had some nice visiting time (rather than the meeting-in-passing that we've done in the past) while akycha was primary guide for Deb.

I am SO psyched about getting to see them!

Thank you all again. It was this time last year when the fundraiser started to come together, though we didn't start running it until later in April. You did wonderful and amazing things for a couple of wonderful and amazing people!

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Also, I am currently holding a small fundraiser for lesbian author/editor Julia Penelope, who is struggling with medical bills while coping with congestive heart failure. Please see this post for information. Even a few dollars tossed into the virtual hat would be helpful for Julia. Thank you! (Sorry that the incentives are geared toward my web serial readers. :} )

Another update from Laurie and Deb:

Happy Staples Removal Day!

On Sunday, Deb walked in the street, since the sidewalks have become snow tunnels that are too narrow for the two of us to walk side-by-side, and made it all the way to the corner. On Monday, after Deb's doctor's visit, she went grocery shopping with me. Now it's snowing again, a snowstorm that has the weather forecasters behaving like excited corgis, and we could have another 20 inches of snow by Wednesday evening.

At Deb's doctor's visit yesterday, we met once again with Dr. P, Deb's talented surgeon, who seemed genuinely glad that she is doing so well. I was still pushing her around in a wheelchair, because, although she certainly can walk, she finds hospital visits exhausting. Dr. P said that the next time he sees her, he expects that we'll have dispensed with the wheelchair. While he and Deb discussed her problems with pain and with medication side-effects, he removed her staples, which Deb didn't seem to feel at all (perhaps because they seem to be more like teeny little clamps than they are like staples--no pointy tips). He and Pauline, the post-transplant coordinator, mulled over Deb's list of medications, trying to figure out what could be eliminated. Some of her medications are for her porphyria, and as she hasn't had any of her old symptoms, she's going to start reducing and then eliminating them--the gabapentin, for example, which controlled her tremors but also makes her lethargic. Her labwork shows that the stuff the liver is supposed to filter out (ammonia, for example, which caused both of Deb's near-comas last year) is being filtered, and the stuff the liver is supposed to put somewhere else (bilirubin, for example, which makes liver patients jaundiced) is being put where it's supposed to be. So, although they still want her to get labwork next week, she doesn't have to see the transplant people until the week after next.

In the meantime, though, she'll be starting up with Lahey's Pain Clinic, which will manage her withdrawal from narcotics, including the morphine that she's been taking since 1995, approximately. With that referral, Dr. P seemed more comfortable about renewing her oxycontin prescription, and she'll continue to only take it at night. Also, she's going to visit her beloved primary care doctor, Dr. G, and begin the process of getting tested for porphyrins (the neuro-toxin that builds up in the blood in people who have Acute Intermittent Porphyria), which will objectively confirm whether or not she has active porphyria. Once we have confirmation, her remaining porta-cath will be removed, and the process of eliminating medications will probably be accelerated.

While we slough off the now-unnecessary medicalia, it also feels like we're sloughing off the accretion of burdens, one layer at a time. We don't know at which level of function Deb might stabilize, but it doesn't matter, since every change is an improvement. During the first year of Deb's illness, I became accustomed to, and then oblivious to, the weight of worry I've been carrying around, but oh my goodness, how light I feel--like the Light Princess in George MacDonald's story, who had to be weighed down to keep her from floating away. And yet I'm poised for the next crisis. My therapist calls it shell-shock, like the soldiers in the trenches during WWI, when they came home from war, continued to fear that at any moment another shell would plow into them.

Deb asked me to note that her father entered hospice care in Florida a couple of days ago, and isn't expected to live much longer. She's very sad, so if you call her she may not be feeling very chatty.

So, Darren was feeling so good last weekend that he and Naty and Laurie's brother Rod took a daytrip into Boston to see the Aquarium and such. And Darren and Naty flew home on Tuesday. More power to Darren's continued fabulous recovery!

Today's update from Laurie:
Deb continues to struggle with pain, which keeps her from sleeping more than a couple of hours, and is dragging down her morale (and mine). The pain is now mostly in her shoulders and lower back, isn't relieved at all by heat, and is only somewhat helped by ice. (If you're cringing at the idea of ice on the skin, you must live in the northeast, where we've had record cold and snow, and where it's not projected to go above freezing for at least 10 days.) She also is having a terrible time with heartburn that doesn't respond to antacids, a side-effect of one of the anti-rejection meds (the one she'll only be on for a few months, thank goodness). The doctors think the pain is muscular, and since they're trying to get her completely off oxycodone and won't let her take more than four tylenol a day, I'm now in late stages of hiring a masseuse, and just need to scope out her facility to make sure Deb can get in and out. I'm hoping that a skilled massage can break some kind of pain cycle. If that doesn't work, our next step will be a pain clinic.

If you have any suggestions on the heartburn I'd love to hear them. (Online, many suggest drinking cider vinegar, and I'm telling you now that vinegar drinking will not happen, not even as an experiment. And she's already taking omeprazole.)

Deb's second post-surgery visit: At the transplant center, the doctor comes into the treatment room, sits at the computer, and reviews her blood test results from a blood draw that happened a half hour before. "You're doing very well," he says, finally turning to look at Deb. I think what he means is that her LIVER is doing very well, because he hasn't even asked about anything else. In fact, when we volunteer information about her pain and heartburn, he doesn't seem to think these are relevant. As we have lived in the strange world of Medicalia for so many years, this attitude is unsurprising. It's also unsurprising that the transplant nurse remains in the room long after the doctor has removed Deb's last drain and left. We go through our list of questions with her, and she reiterates that nothing that Deb is experiencing is unusual, and patiently reminds us that it's only 20 days since the surgery. (As I write this, it's 23 days.) She's the only person we can brag to, that Deb's eating well, maintaining her weight, exercising, taking her own blood pressure, etc. It seems like she deserves another oxycodone prescription! But no. She's making her final few pills last another week by taking them only once a day, saving two for the next doctor's visit, on Monday. (Going to and from the hospital is an exhausting and painful production.) Then she'll have none left, and I may have to English-teacherize somebody. Grrr.

I brought Deb home last night! Taking care of her is pretty consuming right now, but the return of her steel-trap memory helps guarantee that we don't screw up her medication schedule (with the help of a timer). Getting her out of the hospital was a slow and complicated process that included waiting for blood test results and allowing time for a nap (her) and wishing for a nap (me). While waiting I managed to read a couple of short stories by H. G. Wells, "The Door in the Wall," and "The Star" (now famous for its anticipation of global warming). Deb is weak and in a lot of pain, but her wit has returned, and in her last couple of days in the hospital was visited by a series of nurses who wanted to hear the infamous tale of the message on her chest. Darren is still in hospital but could be released as early as today, and Rod [Ed: Laurie's brother] plans to drive out to Lahey to give them a ride to the hotel as soon as they need one. Darren hasn't coped well with being a hospital patient...it's easy to forget what an alienating and terrifying experience it can be, as Deb and I are such medical veterans.

We have a bunch of people coming today [...], and the visiting nurse will make her first visit. I'm really sleep-deprived (you can probably tell by the colorless writing style) but when I'm able to think I'm giddy with relief. When I visited Deb on Thursday, her improvement was visible for all to see: not the pain, of course, but the personality shining through the pain. She's back.

Deb was going to be discharged today, but Laurie posted last night:
She developed pain in her left shoulder during the night, which could indicate a hernia, and since her bowel pain isn't getting better either, the docs also are wondering if she has a bowel obstruction. She had a CT scan this evening to check for both of these problems, but hasn't been told the results yet. Her blood sugar is much better today, but she's unable to eat due to pain and is now getting some sort of I.V. nutrition.

Darren has finally gotten a room in the hospital proper. Naty says he's fine, but having problems with pain, and his breathing is still being monitored, so he's probably not going to be discharged any time soon.

Fingers crossed that whatever is up with Deb is easily treated and she can get onto solid food again soon!

Deb is up and taking short walks up and down the hall at the hospital. She was having severe gut pain: apparently, she developed ileus -- a shutdown of the intestines -- during surgery, which isn't uncommon (the innards are particularly upset by being handled), so they've been wary of giving her too much pain med because that can exacerbate ileus -- but then she was feeling rough because of the pain. Adjusting those meds are an adventure. In any case, Laurie got them to change up the administration schedule and Deb seems to be feeling better.

She's eating, and the docs want her to eat, Eat, EAT! Particularly a high-protein diet, so her liver has a lot of material to grow with. But she's super-sensitive to food tastes (and apparently food often tastes funny to transplant patients anyway), so Laurie is working to find nice bland options to get some more protein into her.

Darren apparently had some breathing issues just after surgery, and so lingered in the SICU for a few days. Now he's apparently stuck there because of a lack of regular beds in the hospital. Hopefully they'll get him a bed soon and he and Deb can visit!

For those of you who haven't had time to get over to the CarePage, both Deb and Darren came through surgery well, and the blood work on Deb is looking EXCELLENT. The new liver is WORKING! The first thing Laurie noticed went she went into the recovery room to see her was that Deb is PINK! (According to a healthcare person I talked to, this is often the first thing people notice after a liver transplant, because the person has been pale/jaundiced for so long.) When Laurie visited yesterday, Deb was sitting up in bed and chatting with her pharmacist, and is apparently doing so well that they're talking about releasing her from the hospital in a few days.

Sorry for the late information -- I've been fighting a cold the last few days, and things keep getting stuck in the goo in my head. :P

If you have spare energy/zen/white light/prayers/whatever, send them toward Darren and Deb (and Laurie and Darren's wife Naty), because THE LIVER TRANSPLANT IS IN PROGRESS NOW.

If you want to keep tabs on things, a friend of theirs will be posting updates as she can on the CarePage: http://www.carepages.com/carepages/debsliverlovers

ETA: I note that there are photos on the CarePage, of both Deb and Darren, including Deb's message, taped across her chest for the surgeons, of "There is NO FUCKING WAY I'm dying." (And, in similar vein, I used this icon -- certainly the failing liver and porphyria are getting their asses kicked about now!)

I am DANCING. I just got this note from Laurie:

Happy early Christmas to us! Deb's brother, Darren, has been to Massachusetts twice in the last month and just got the call from Lahey that he's been approved to give Deb half his liver. (As if we needed more proof how bizarre is the world of organ transplantation, Darren has endured incredible unpleasantness and indignities, so he could demonstrate himself worthy to endure major surgery that he doesn't need.)

We have a tentative surgery date of January 10...less than a month from now. Deb is dancing around the house while talking on the phone with a friend, and periodically sticks her head in the bedroom door to exclaim "I'm not going to die!" and "I won't have porphyria any more!"


Laurie has set up a Care Page for Deb and Darren, and will soon send the address, which I will PROMPTLY share with all of you!