Month: January 2025

I am here to tell you that, by some miracle of fate, I can report that by yesterday afternoon, we both had heat and hot water (and David and I had both had an opportunity to shower) and I had a new tube in place.

The propane issue was one solely of communication. It turns out that the propane company was indeed working with estimates (although we haven’t been here through a full winter yet, so they were not estimates based on our own previous usage behavior) and that is why our propane tank was empty despite being on the automatic refill plan.

It also turns out that because we are on the auto refill plan, the propane company would have come out Sunday and put 10 gallons in the tank, restarted our appliances and then come back Monday to do a complete fill. But their outgoing message was not at all clear on that point. And we only found out when I finally called the emergency number again later Sunday evening and spoke to the answering service. By then it was almost dark and we live up a big hill and it would not have been safe, in my estimation, to make them do the emergency fill. We had space heaters and could wait until Monday morning for them to come.

We had asked the visiting nurse that comes on Monday to make us her first appointment at 9am because we knew there was no chance in hell that we would have heard from the IR doctor. The propane folks were coming between 8:30am and 9am, what could possibly go wrong?

Of course, everyone arrived at once. While David ran around the house with the propane guy, restarting the heater, hot water heater and stove and the smell of propane everywhere (we were assured that it was safe and not flammable) the nurse and I sat in the living room doing our usual Monday morning routine. Not long after she started taking my vitals, I got a call from the IR doc telling me to come to the hospital at 1:30 for a tube swap.

But–you knew there had to be a but, right?–the other shoe had to inevitably drop, right? When we arrived at 1:30, I learned that the appointment had been scheduled as a G tube removal. I tried to explain to the woman who checked me in that I actually there for a G-J tube swap, but she just told me that I should tell the nurse when they brought me in for the procedure.

David and I sat in the waiting room until my name gets called. As the nurse and I are walking toward a room for me, I explain the issue. He is flummoxed. A G tube removal can be done pretty much anywhere. Just deflate the balloon and pull. In fact, he brought me into a large storage room with a gurney and computer smack in the middle of the room. A fine place to pull a G tube.

Inserting a G-J tube is a whole different matter. It requires fluoroscopy machines that allow the Interventional Radiologists to visualize the anatomy and thread in the J tube through the stomach and into the jejunum. Unfortunately for me, there was already another patient on the fluoroscopy table.

The nurse left me in the storage room and went to go check the order and to see if they even had a G-J tube in stock. While he was gone, two staff members wandered into the room I was waiting in. While I just sat there on a gurney, they looked at me for a moment and then went back to their conversation, did what they needed to do, and left. Clearly, they had expected this to be a quick in and out procedure.

After a short while, the nurse returned and confirmed that the order was indeed for a G-J tube swap and he had no idea why or how it had been scheduled as a G tube removal. He confirmed that they had a G-J tube in stock and that the doctor was going to be able to fit me in right after he finished with the current patient. The nurse sent me back into the waiting room so I could hang out with David while the doctor finished up.

After about 15-20 minutes, the nurse returned and wheeled me into IR and voila! I had a new tube. Well, it’s not quite that easy.

When my tube is swapped endoscopically, I am put under light anesthesia. I just wake up after a nice nap and it really is voila! When the tube is swapped by IR, the doctor is going in through my stoma. I get some local lidocaine, but other than that, I am wide awake. And it can get quite painful internally as the doctor makes several attempts using guide wires to locate my jejunum and guide the new tube in. And there was a nurse behind my head who dutifully asked me my pain level at several intervals. But even when it got bad, she said nothing, nobody did anything.

I have encountered it every time I have been in a hospital setting. I am asked my pain level. It is dutifully recorded and nothing more is said. More times than not, no medication is offered. I truly cannot understand why they bother to ask if they have no intention of doing anything about it.

Regardless, it was amazing to get home from the hospital yesterday and collapse on the couch in our warm house. And I was thrilled when I was able to pick up my tube feeding exactly where I left off. I will take one more day at 49ml / hour because I remain a bit sore from yesterday. But then up to 50ml/ hour. Getting close.

Today has not been a Good Day.

First, we woke up to discover that our heat had not turned on. David went to go check the propane tank and discovered that it was empty. We are on an automatic refill plan so this should never happen. But it did.

I called the propane company and they don’t do emergency fill appointments. I checked their app and discovered that it showed our tank at 45%. No wonder it had not been refilled. I will call them bright and early at 8am and try to arrange a delivery.

Meanwhile no heat or hot water. But we do have space heaters, sweaters, wool socks and blankets. And an electric kettle for all the tea we can drink. And most importantly, we live in California. This is not at all like when we lost heat in Astoria (NYC bans space heaters). This is a nuisance. Nothing more.

It was the second event that really spiraled the day to being irredeamable. My J tube flipped into my stomach again. This time, it did it dramatically with maximum explosive effort, spraying formula all over my clothes. Twice. 

I spoke with my doctor and we agreed that it does not make sense for me to go to the ER today. They might not have anyone on in Interventional Radiology, which would mean either being sent home to come back Monday, or an admission. Plus, tonight is a TPN night, so I will be getting nutrition and hydration regardless.

Instead, she is going to call the doctor who placed this tube, first thing in the morning and see about getting me on his schedule ASAP. And if necessary, I now have adequate fat reserves that provide me with the resilience to skip a day or two of nutrition if necessary. I just need to be extra cautious to monitor my hydration.

As it so happens, I have an appointment with my GI NP on Wednesday morning. It would be perfectly ironic if I had to reschedule this hard to get appointment because of a tube swap. But that is getting ahead of ourselves. Hopefully, this will get addressed Monday or Tuesday and all will be well again.

On the plus side, I get to wear my dinosaur onesie because I am not attached to any tubes. And it is nice and warm and cozy. Especially with fluffy, wool socks on. And underneath, I am wearing my “It suck to be me” T-shirt from Avenue Q. It felt appropriate.

I am having a tough nausea day, I can’t even with the world right now, but I am also feeling positively giddy because I am now down to TPN only 3 days a week!!!!

My enteral feed is currently at 48 mls/hour, with a goal of 54 mls/hour. I can only increase my speed by 1 ml/hour every 3 days, and it is a slog. I had been expecting my RD to reduce my TPN to 4 days a week, so getting that extra bonus day off was just a very much needed win.

That’s really all that I came her to say. But I feel like I owe my readers something more.

Last week was excitedly (and a bit exhaustingly) busy. We celebrated David’s birthday with his aunt, uncle and cousins. The following day, we finally made it to the coast.

Healthy Eva would never have tolerated living on the west coast this long without having at least once going out to put her feet in the ocean. But this semi-healthy Eva put her feet in the ocean last week and it was amazing.

At first, I was confused because the water was so cold. The temperature of the water was more reminiscent of the Oregon coast. Then David reminded me that it is the middle of winter. Oops.

The downside of our coastal adventure was a reminder of just how miserable car rides are for me. I had really hoped for a massive improvement once we got the C.diff straightened out. No such luck. But I have not given up all hope.

Ramping up my enteral feeding is an uncomfortable process. This time has been easier than previous times, but it is still painful. Perhaps once I have gotten comfortable at my goal speed, my experience of riding in a car will improve.

I didn’t have too much time to dwell on that because this past weekend, a much beloved friend and her teenage son came to visit. We hadn’t seem them in 5 years, and it was lovely how we were able to just pick up as if no time had passed.

This week is just shaping up to be weird. But given the circumstances, that feel about right.

I have been diligently working my way to moving back entirely to enteral feeding. Yesterday, I reached 41mls/hour. The goal is 54mls per hour. I attribute my steady progress to better pain management. Last time I had to slowly increase the speed of my feed the process was much bumpier. But, the resources provided by Stanford’s pain management clinic have been incredibly beneficial in helping me thus far. Being appropriately medicated (without opiates, which I cannot take because they slow motility) is helpful, but the pain management and relaxation techniques that they have taught me should get their fair share of credit as well.

All that effort has paid off and starting next week, I am going down to TPN just 5 days a week. The challenge with reducing my TPN at this point is not about the nutrition. That is relatively easy to manage. The challenge has been in the hydration I normally get from my TPN, which I have to make up for either orally or enterally in its absence.

These past few weeks of being on TPN 6 days a week, I have found myself mildly dehydrated when I wake up after a night without TPN. For clarity, my TPN runs for 12 hours, from 9pm to 9am. I do a flush of 100mls of water every day at 7am. I am working on increasing that to 120mls, but that is the maximum volume for a flush. So that won’t help much.

Recently, I learned that I am able to tolerate a much higher volume of oral hydration if the liquid is hot. Cold and room temperature fluids cause me pain, making it hard for me to increase my intake by much. But, I can drink an adequate amount of fluid to offset the loss of even 5 days a week of TPN if I do it by drinking decaffeinated and herbal teas. I just need to be diligent about it.

In other news, I finally got to see the pain physical therapist at Stanford. My original appointment had been on Halloween, but it was cancelled because the therapist was sick. Unfortunately, we only heard about the cancellation once we were almost to the appointment. An hour and a half away without much traffic.

Anyhoo, the appointment went differently than it would have when I was still in the fog of pain. I have been doing some standing yoga poses and stretches daily since I have been able to do so comfortably. The PT was impressed with my knowledge of yoga poses and we discussed a couple of more that we could safely add now. We also discussed some gentle core poses on my hands and knees that I could add in once I get my PICC line removed.

We also discussed increasing my walking, but she wanted me to do more flat walking, like on our treadmill. More on that in a bit. So far, All of my walking has been on hills because you cannot leave my house and not walk on a hill. David and I have been slowly exploring the hiking trail/fire road that starts right on our street. Each time we have walked it, I have been able to go a little further. It is my intention to continue exploring and slowly climbing that hill. But, I also fully intend to add some walking on the treadmill.

We have a lovely treadmill, that is unfortunately missing the part where you rest your hands and it checks your heart rate. The movers just somehow lost that piece. We are now just waiting on the insurance claim for it. But, today we confirmed that it works even without that part. So I don’t need to wait to get started.

This is all great news, and I am happy to be able to share it. But please keep in mind that I still have a chronic disease. I will have good days and bad days. Most importantly, I have learned that just because things are looking up, it doesn’t mean that they can’t all come tumbling down again. Like they have before.

What I have learned and have to continue to reinforce for myself, is that I need to do the things I want to do when I can. And be kind and understanding to myself when I can’t. Which means that for now, I am going to enjoy my ability to move my body without (or with only minimal) pain. And I am going to listen to my body’s cues and stop when I first hear the alarm bells. And not push myself too far.