Month: November 2024

I have taken the last of my antibiotics and I find myself feeling as good as I did back in July, before this all started. On Thanksgiving, I was able to stay engaged and social for 6 hours and I ate a very small amount (but more than I have been able to eat in a long time) of delicious food. I only had one episode where I got so queasy that I needed to re-medicate. Overall, a raging success.

This is particularly excellent news because we have people coming to visit us every month through February. We are clearly emerging from the cocoon we constructed, by necessity, over the course of my most recent health crisis.

Now that I have the ability to think again, I find myself trying to process the last 4 months. Severe pain forces one to shrink their focus down to what is immediately in front of them. I was stuck in the lowest level of Maslow’s Hierarchy of Needs. I couldn’t think, I couldn’t plan and I certainly couldn’t process what was happening to me.

David came to all of my medical appointments because I was an unreliable reporter. I couldn’t even remember how I had felt the previous day. All I knew was the present. The past was irrelevant and the future was unimaginable.

David was an excellent reporter and an even better advocate. Sometimes David would push for things that didn’t even make sense to me. But I was usually smart enough not to push back. And in the harsh light of day with the benefit of hindsight, he was always right.

TPN (my IV nutrition) requires special care. My PICC line leads right to my heart, so infection is always a concern. A nurse has to come in once a week to draw blood for labs, change my dressing and change the extensions. The reason that she no longer comes twice a week is because she trained David to change my extensions. This is not something she teaches all of her patients. But she was particularly impressed with David’s careful attention to the finicky process.

This was not the blog post that I had expected I would write. But it is apparently what I really needed to say. It seems that the first thing I needed to do as I start to process the past 4 months, was to express my gratitude for David and all he has stepped up to do. He has been amazingly supportive since I first got sick, but he really stepped up during this most recent crisis.

Our 25th wedding anniversary was on November 7th. But I was in no shape to celebrate it then. I would like to take this opportunity to acknowledge that I chose very wisely. I cannot imagine a better life partner. And as much as I regret that I need to be cared for to the degree that my health demands, I would not want anyone else to be there for me than David.

This is Eva Actual.

I have a daily assignment from my pain CBT class to write for 10 minutes every day. That kind of concentrated effort does cause me a little pain, but nothing the associated binaural relaxation technique (think EMDR) doesn’t offset. And given that I had already worked out a system to get a little writing done, I figured why not write a blog post, for a change.

My status is very much improved. We now think that I picked up the C.diff at the hospital in Springfield, MA, back in July when my tube kept flipping and I got to know their ER really well. The timing lines up with the onset of the pain. Despite being hospitalized twice after that, it didn’t occur to anyone to check for C.diff. Not even when I had a consistently high white blood cell count for months. The doctor at the hospital attributed it to the TPN and my PCP just followed his lead. To be fair, she knew nothing about TPN until it was foisted on her by my GI.

I am now on my second round of antibiotics, and finally on the one that is the preferred treatment for C.diff. Apparently it is designed to stay in my gut even after I finish my course, so my symptoms should continue to improve as they did after I completed my first round of antibiotics. During the 10 days it took for me to get the prior authorization approved by my insurance company, I spent 7 of those days unmedicated, which was incredibly frustrating. Fortunately, it all seems to be working out in the end.

The TPN is down to 12 hours a day. David hooks me up before we go to bed and then disconnects me in the morning. On days when I have no need or interest in getting up that early, David disconnects me from bed. Which is the normal person equivalent of having your partner bring you breakfast in bed. I have a pretty sweet deal.

My PICC line (through which I get my IV nutrition) is also designed to be used for blood draws for my weekly labs. However, it has never been particularly great on this front. Even when the nurse did get blood return, it tended to be sluggish and barely fill the tubes enough for my labs. David and I have learned a lot about the minimum fill requirements of the golden and lavender topped tubes used in blood draws.

Right now I am on day 2 of leaving in CathFlo* overnight to clear out whatever is hindering the blood return. CathFlow is the roto-rooter of catheter occlusions. See all the fun things one can learn from being a tubie?

After months of neglect, I have started flushing my J tube again. It too, is somewhat occluded. I can get in 25ml twice a day with some discomfort, but no pain. Any more than 25ml at a time just bounces back out. I am not going to invest the time and energy (and possibly pain) to clear out the tube. Instead, I am to increase my flushes to 3 times a day and continue that until my tube swap on December 19th. This should be enough to get my intestines warmed up to resume enteral feeding again.

The plan is for me to go back to 18 hour feeds (I had been at 20 hours in July, but that was to maximize caloric intake). Since we will be titrating the TPN down as we increase the enteral feeding, I can take the extra two hours off without losing any nutrition.

*David and I both call it Caff-Pow to each other.

This is David writing for Eva.

So many things have happened since I last wrote. So little has changed. 

The big change is that Eva was diagnosed with C.diff, , a nasty little bug that lives in the intestines. It can cause, among other fun symptoms, diarrhea and intestinal pain. It is possible that all the symptoms we’ve been attributing to the tube can be laid at C. diff’s metaphorical feet. Or not. The good news is that C. diff is treated with antibiotics. The bad news is that it is extremely difficult to treat. It takes specialized antibiotics that function in the intestines, and often requires extended courses (like six to eight weeks). Eva is coming to the end of the first week with no significant improvement, is waiting on insurance approval for a switch to an even more targeted antibiotic, and on it goes. 

C. diff, is something familiar to anyone who has spent any time working in a health care setting. It requires certain precautions before going into a room: putting on a full gown and gloves. It is both extremely contagious and an extremely resilient bug. Assuming I am negative for it (which, given a lack of symptoms, we are assuming), we must be doing really good basic hygiene. Alternatively, my body just fought it off, or I’m not particularly symptomatic?

In any case, we now have a disease for Eva to fight off which is curable, which makes for a nice change of pace. 

In terms of the tube swap, we have had so many steps forward and back that it is hard to keep track. We were scheduled for a tube swap on Monday of this week. This was an ambitious goal for insurance to render a decision, but with much chasing on the part of our complex care coordinators, we got an answer on Friday. Insurance approved the procedure, but not at Stanford. Procedure canceled. 

By the end of Monday, we had gotten approval to do it at Stanford, but only after beginning to figure out how to do it at UCSF, and, of course, needing to restart the scheduling on the procedure. 

C. diff throws a new wrinkle in. It turns out that the procedure can be done while Eva has C. diff, but it needs to be the last procedure of the day. But . . . there are questions about whether Eva should wait until the C. diff clears up so that the new tube isn’t exposed to C. diff. The medical consensus seems to be that waiting is the better course. Scheduling called today and offered two dates for a tube swap. Next Wednesday or December 18th. Eva had to take December 18th. 

In case all of this wasn’t enough, there was an election this week, and the winner has been trying to end the ACA (Obamacare) since first taking office. Without Obamacare, we are uninsurable at reasonable cost. We would need to go into state high-risk pools. We are definitely beginning research on places that might accept us as immigrants and that have high quality medical systems. 

Other than that, everything is just fabulous. Eva continues to be in lots of pain with sides of nausea. Except on days when the nausea is primary to the pain.