Month: June 2026

I love and appreciate my Peripherally Inserted Central Catheter (PICC) line. It keeps me fed and hydrated and is increasingly a source of meds as well. But I never named it because it was always supposed to be temporary. But almost two years later, clearly it had some staying power.

But unlike my G/J tube, which allows me to put in anything that can go into the stomach or intestines, A PICC line is a catheter that goes directly into a large vein, so I need to be much more careful with it.

When I first got my PICC line and was trained on how to take care of it, the training nurse put the fear of god into me that I was never to take a shower for more than 10 minutes. Ever. Or I would end up with sepsis.

Those early showers were fraught with fear and anxiety. I set a timer and created an associated playlist, so I could keep track of time without poking my head out of the shower. At some point, either David or I mentioned the firm 10 minute rule to Jennifer, my home infusion nurse. She said she had never heard of anything like that.

After that, showers became relatively relaxed affairs. I could just pull on my plastic PICC cover sleeve when I went into the shower, and it has always kept my PICC line dry.

Now I am looking at “upgrading” to the tunneled venous catheter, which will sit on my chest. There is no easy sleeve or cover I can buy to cover a line on my chest. I have watched videos of other people covering up their lines and run trials on my own, and I have come to the conclusion that my days of relatively stress-free showers where I can just stand under our lovely rain shower head are coming to a distinct middle. Because once I convert to a line on my chest, it is all about the hand held shower head and avoiding spraying directly at my chest.

I am not happy about this development. As much as I am eager to be rid of the anxiety that one day my stenosed vein will close and I won’t be able to infuse my nutrition or fluids or meds, I just got out of the hospital and am not eager to go back in.

This realization is coming at an already difficult time for me emotionally. I am knee deep in grief over another growing season where I am unable to eat the delicious produce being grown around me.

There are just so many things that make life with a severe chronic illness difficult to manage. Last night, David and I were talking about how exhausted we both are and how much we just need a break from all of the things we need to do to keep me alive and somewhat functional.

Meanwhile, my pain is relatively low, so we both want to take advantage of the opportunity to go do something fun. But the daily regimen remains daunting and the planning needed to just drive to the coast 30 minutes away feels like too much right now.

I have been staring at my screen for a few minutes now, just trying to decide where to start. The last two weeks have been a lot. Actually, only the last week was eventful. The week before that was exactly what I needed, a relatively quiet week with the space for me to recover from the trickle feeds. Except that I was not recovering. If anything, the pain and nausea were getting worse. So of course, that is when our internet went out for two days.

But it really was this past week that was the bear. It started out pretty badly and then just got worse.

It has been a while since I have seen a dentist. Which is not like me at all. My mother has really bad gum disease and although I take after my father in most ways, including my good teeth and gums, it has meant that I have always known the importance of good dentistry. Therefore it has always been a priority for me. But when one is starving, priorities shift. And then there was Covid and hospitalizations and enteral feeding and TPN and suddenly I find myself having gone several years without seeing a dentist.

Covid remains a factor for me. David and I are extremely careful because Covid is a vascular disease and messes with one’s immune system and I just don’t need that on top of everything else. While I can mask at most medical appointments, one really does have to take the mask off for dentistry.

There are all sorts of strategies to get relatively safe dentistry, one being to get scheduled as the first appointment of the day on a Monday morning. But that has been my home nurses slot for 2 years, so that seemed less than ideal for me. The other strategies seemed even harder to coordinate so I threw my hands up in frustration. Then someone suggested that there are mobile dentists that see homebound patients. They do cleanings, take X-rays and can fill cavities. That seemed like a much better match.

I found one in Marin County, scheduled an appointment for this past Monday and was given a window of time and the name of my hygienist. Then absolute crickets. I finally called 3/4 of the way through my arrival window. First I called the scheduler. She said that my appointment did’t ring a bell and asked if I knew the name of my hygienist. Since she had helpfully included it in one of her emails to me, I did. She gave me the hygienist’s cell number and I gave the hygienist a call.

Seems she had no idea about my appointment either. I helpfully forwarded her the entire chain of emails verifying the appointment. She didn’t handle the screw up graciously, but she did reschedule me for July 3rd. At this point, I just want it done so hopefully everything goes ok. I have maintained my oral hygiene throughout and can’t vomit, but I have had years of malnutrition and don’t know what that has done to my bone density. I am just hoping for the best at this point.

Pragmatically, it is probably ok that I didn’t have a dentistry visit this past week. Instead I had myself another hospital adventure. Those following along on Facebook might already know this, but there will likely be a bit more detail here.

First some necessary background. I have had my home nurse, Jennifer, coming at least once weekly for almost two years now. She takes my vitals every week so I have a really good sense of my baseline. My blood oxygen saturation is always 99-100 (sorry Sara).

In my last post, I mentioned that I was taking a break from my enteral trickle feed until the pain in my gut settled down enough that my pain was back at a 6/10 (my baseline is a 5/10, so a 6 is actually pretty good for me). However, the pain in my gut was getting progressively worse, not better.

On Tuesday morning, I was feeling particularly bad. I was shaky and in a lot of pain. I am always at risk for sepsis because of my PICC line and one of the steps of a sepsis check is heart rate. So I slipped on my handy dandy pulse oximeter and while my heart rate was only slightly elevated, my O2 sat had dropped to 95. I have never seen it that low.

I am absolutely clear that 95 is a great number and even some healthy people would love to have it. The only reason it caught my attention was because it was such a big change from my incredibly consistent narrow baseline. I texted my nurse and she said that if I didn’t feel well then I should absolutely go to the ER. But, since they would not understand that this was a significant change for me (italics mine), I would likely be triaged to the bottom of the list and would have a long wait ahead of me.

We didn’t go to the ER at that point, but I kept feeling worse and worse until I got to a point where my pain was too much for me to even bear the trip to the hospital. Which is, of course, when one has to go to the hospital. We pulled out the stops getting my pain down enough for me to tolerate to the trip to the ER and headed in.

Since we went in for severe abdominal pain, I am not sure either David nor I even mentioned 95 oxygen sat. The first order was for a CT scan to make sure there were no blockages. This is standard for coming in with severe abdominal pain. And this is where things got interesting.

The abdominal scan caught the bottom of my lungs where multiple pulmonary emboli were found. That earned me a second CT scan of my heart and lungs as well as a full heart and blood clot work up, which included ultrasounds of my extremities. They also found a blood clot behind my right knee, but apparently that one isn’t responsible for the clots in my lungs.

I was admitted to the cardiac unit and they immediately started me on heparin. What they didn’t do for over 24 hours was give me any nutrition or hydration. The delayed nutrition is because it always takes the pharmacy a day to compound TPN for me. We always offer to just use my TPN from home and they always turn us down. There is a process in place for patients to have the hospital nurses dispense medications that are not stocked in the hospital’s pharmacy. We used that very process to bring in my Journavx during this admission. I don’t understand why TPN is different. And it is not just this hospital. My fellow TPN dependent patients have this same issue all over the US.

Unsurprisingly after no nutrition for so long, my electrolytes ended up a complete mess. I earned myself two infusions of potassium, which is super caustic. The last time I needed IV potassium, it was done through an IV and it burnt my skin so badly it peeled and took months to recover. This time it went through my PICC line, which was easier, but still uncomfortable.

Anyway, eventually David prevailed upon the nurses to beg the doctor to prescribe some saline for hydration. But the doctor ordered it at such a low rate that it was symbolic. David very nicely begged the nurse to get it set at a meaningful rate. She complied, but even so, it still took me days to recover from the dehydration from that first 24 hours.

After triage, I was given a single dose of toradol (an IV NSAID) for pain before my first CT scan, but after that, the only new intervention I got at the hospital were blood thinners (first IV heparin and then oral Eliquis) and yet my pain has dropped back down to a 6. Apparently those blood clots were indirectly making my pain worse.

What has not improved through this whole adventure is my nausea. Zofran used to be a magic bullet that just cut through the nausea. And once I was able to get IV Zofran at home, I thought it would be magical. But it is barely holding me now.

In the hospital I trialed Haldol, which is an antipsychotic med that is sometimes used to manage nausea. It made me manic and uncomfortable in my own skin. They gave me Benadryl, which calmed me down and at least allowed me to sleep.

There was one night in the hospital where the nausea was so bad that I even asked for compazine, another antipsychotic that I have used in the past for nausea. It used to work even better than Zofran. Until it gave me tremors and I went off of it. But that night in the hospital when I was feeling so nauseated that I needed the relief. I asked for a dose of compazine tremors be damned. Turns out the compazine made me tachycardic. I again asked for some Benadryl and eventually was able to fall asleep.

Now that I am home, the nausea is still bad. It is limiting my ability to read, I am still not able to craft and I am pushing myself past tolerable right now because I just want to get this post done. So I am going to try to wind this up.

At home, I am retrying ciproheptadine, which is a first generation antihistamine which is now used for nausea management. I have trialled it before, but it wasn’t effective. But there are so few meds to manage nausea, GI pain and motility that all one can really do is try the same meds over and over hoping that at some point one of them will work. All I had to do to retrial ciproheptadine was just pull the bottle out of my “meds I have tried and failed to be effective for me” bag that I keep for just this type of purpose. I did also update my motility GI that I was retrialing it. So far, it hasn’t done anything for me, but I will probably give it a full week before I give up on it again.

I do have a post admission visit scheduled on June 25th with one of my motility GI’s Nurse Practitioners. This is not one that I have met before, but based on her predecessors, I am not going to hold my breath that she will have any new ideas for nausea management.

I have given myself a few days grace to recover from the hospitalization and dehydration before I restart trickle hydration. But that time is quickly coming to an end. I am hoping to restart trickle hydration at a very low rate tomorrow or Tuesday. Welcome back Quadruple Tube Girl!

I just looked back at my previous post about two good doctor’s appointments and laughed at my naiveté. Because the universe seems to be opposed to me having nice things.

That great sounding neuro-gastroenterologist who explicitly agreed to become my motility doctor? Well, that story got a bit strange. She referred me to her PA for a nutritional consultation because she said her PA was also a dietician. She even wrote that in her note to her staff to schedule an appointment with her PA for me.

I was really looking forward to my appointment with her PA. Based on what the GI said, she sounded like the perfect person to help me. We went into the city for the appointment because I like to meet my practitioners at least once. In the 2+ years we have lived here, I have only gone into the city once before, because it is a 45 minute trip that is quite difficult for me.

When the PA walks in, we start excitedly telling her about our conversation with her supervising GI. How the GI had agreed to take me on as a patient and how she sent us to the PA for nutritional counseling to help get me back on enteral (tube into my gut, as opposed to IV) feeding.

I know I only imagined it, but I could have sworn that I heard a screeching sound as the PA stopped us in our tracks to correct some “assumptions.” She had not heard anything from the doctor about taking me on as a patient. And she has not kept up her dietician certification in years. She said that she would check in with the doctor and get back to me.

Since that appointment, I have found 3 notes in my patient portal from administrative staff trying to get ahold of the doctor to confirm whether or not to schedule a follow up appointment for me. The most recent one, dated June 1st, says to contact the patient. Presumably to tell me that they are not able to schedule a follow up appointment for me. At this point, that would almost be a relief. And since they were so kind as to document it for me, once I do get the official turn down, I can go back to my insurance company and tell them that the in network doctor will not take me on, so they need to go back to covering my out of network doctors at Stanford at in network rates, like they have for the past two years.

While all this waiting was happening, I had a couple of genuinely good weeks. The kind of weeks that I haven’t had in a very long time. I went to a fiber fair, I wandered around the community yard sale (these happened on two separate weekends) and got to hang out with a friend from Portland. It was amazing.

During that time, I was restarting trickle enteral feeds with watered down formula for 4 hours a day. First, when I was running it at 2ml an hour, it was ok. And after a couple of days, I increased it by 0.5ml an hour. And it got harder and more painful each day. I lost almost all of my quality of life gains. I could no longer read or listen to audiobooks or spin or craft. I could just sit. I hit a wall at 6ml/hour. I was in so much pain that I couldn’t stop crying. I had to pull back to 5ml/hour just to stop sobbing.

Yes, I was torturing myself for a grand total of 21ml of watered down formula a day.

Last week, I happened to have one of those weeks where medical appointments, each scheduled individually months prior, happen to coalesce into a very busy medical week. First it was an appointment with my Stanford motility GI’s PA. She was largely unhelpful and just made annoyingly sympathetic sounds and faces, but didn’t let me off the hook on the trickle feeds. She did suggest getting an alcohol-free ginger tincture so I could get ginger in me when I am too nauseated to chew or sip anything, which has been the case recently. So I will give her credit for that. But apparently the appointment ran long and she gave no indication so we were charged for an additional 15 minutes. It didn’t do anything to improve my assessment of her.

The next day, it was a very early morning as I had my G-J tube and PICC line swapped out. The G-J tube was just routine. The PICC line was added on because while it was still infusing fine, it had gotten to be very inconsistent about blood return. We could probably, maybe, gotten by with another round of the PICC line drano (AKA CathFlo), but the line had been in for 9 months and I was already going to be on the Interventional Radiology table for the G-J tube swap, so why not?

The G-J tube swap was completely routine. The PICC line? Not so much. This was my second PICC line placed using the same track and the vein had a lot of stenosis (constrictions), making it difficult to get the new line in. The doctor helpfully suggested that what I really needed was a tunneled central catheter, which would go into a much larger vein. But that requires sedation, so it was not an easy pivot. Instead, he used 3 cardiac balloons to open up the vein enough to get the new tube most of the way in. It is now 2cm lower, which means the extensions are now much closer to where my elbow bends and it is taking a bit to get used to. But otherwise, is working absolutely fine. With all sorts of blood return.

The following day was another early one, as I finally had my appointment with the general GI that prescribed me the bile salts in the hospital, back in January, thereby alleviating enough pain for me to come home. She had gone on leave the day after I saw her in the hospital, until June 1st. Her role on my medical team is to be the GI that I can see for non-motility related issues. And since she is busy, but not crazy over-scheduled like my motility GI, she is a bit more available to answer questions that are above a PA’s head.

And the timing on this appointment was perfect, because we had plenty of questions for her. Including my desperate plea to be let off the hook with the trickle feeds. She explained what we already knew, but struggle to deal with. That the longer I go not using my digestive system (and by that, everyone seems to mean my small intestines) the more difficult it will be to restart.

The last appointment this week was with my dietitian. She was the one who is really supervising my trickle feeds. I told her about my appointments with GIs and PAs and about how much I was struggling. That the pain of the trickle feeds was squeezing out what little pleasure in life remains to me and I wasn’t even getting anything resembling useful nutrition or hydration in the process. Nor was I able to progress beyond 5ml/hour. She basically asked me what I wanted her to say. I told her that I needed a break. I would go back to trying, but I needed a little bit of time to just get back to where I could read and maybe craft just a little bit.

Before I give you her response, there is one more thing I need to add. You may or may not recall, but months ago I had found a group that offered gut directed hypnotherapy services. I was in the midst of my TMS treatments and I just didn’t have the bandwidth to do both at the same time. So I put that treatment option aside until I was ready, knowing that at least at that time, there was probably a 3-4 week wait before someone would be available to work with me. And it might take me a bit longer because my needs were fairly specialized, so I would need a clinician who was fairly experienced and comfortable really drafting their own scripts.

Two weeks ago I started working with a clinician that I really like. At the outset, I was told that the first two to three sessions would be getting to know each other before the real work would begin. But I really clicked with my clinician and since I have used gut directed hypnotherapy before, we were able to get started with hypnotherapy this past week. I am feeling very optimistic that this path will help me tolerate the motility drugs that will get my sluggish small intestine up and running enough to at least reduce the painful bile reflux and allow me to tolerate enteral tube feeds again. But gut directed hypnotherapy can take 3-4 months to be fully effective, so only time will tell.

Back to my dietician’s response. After I have taken a break and am feeling up for trying again, I am going to go back to just running water through my enteral tube for 4-6 hours a day. But I am not to go past a tolerable pain level. So if that means that I am stuck at 2ml/hour for weeks, that is fine. And once I hit 20ml/hour, then I can start adding either an elemental formula (everything is completely broken down, all my intestines need to do it move and absorb, which may still be too much to ask of my intestines, but we will see). This is an answer I can live with.

I have spent the weekend recovering, but the fact that I was able to write this blog post is proof that I am already feeling a bit better. Not better enough to resume running anything through my J tube. Not yet.