Tubing Along the the Road to Recovery

Once again I want to thank all of my friends, family, and readers who visit, call, email, and texting inquiries. My hospital record stays at 57 days. I hope it stays that way with the exception of a follow-on surgery at end of January which should be just one night. 

The cystectomy has changed my life as I proceed along the road to recovery. My calendar at age 80 is quite different than it was a year ago. Over the years in the past, an occasional doctor appointment did not take much time. Now, my calendar is dominated with doctor appointments. Last week I saw five doctors. Doctors often ask for an MRI, CT scan, blood draw, bone density scan, echocardiogram, or ultrasound test. Fortunately, Amazon Pharmacy eliminated the need to go to the pharmacy.

Not all of the appointments on my calendar are for seeing doctors and getting tests. Taking as much time are phone calls. Making appointments or changing appointments should be easy. Online scheduling offers hope but needs a lot of refinement. Yale uses the Epic MyChart system, the patient-facing part of Epic’s electronic health record (EHR) system. Big hospitals like it, small hospitals cannot afford it. Demand for it is high because the alternative systems are not very good. The MyChart mobile app is pretty good. It enables patients to check their blood test results, make an appointment, send a message to their provider, and numerous other capabilities. I find MyChart, in some respects, is designed for the way Epic wants things, not necessarily the way a patient wants things. Two quick examples. If you have not sent a message to a provider within six months, you cannot sent them a message. I receive text messages from MyChart saying I have an appointment on a certain date at a certain time at a certain location. It then has a link to add this to your calendar. If you click the link and then look at your calendar, you see the word Appointment. With who? Duh.

Medical information about you is your information. You should be able to sort it, print it, download it, and share it. You can do most of this easily if you are sharing to someone else using MyChart. If you are in a hospital but then transfer to another hospital for special surgery like I did and if your Primary Care Provider is not in the network of either hospital, good luck trying to share. The typical response  is “our fax # is…..”. I wrote a lot about this in Health Attitude: Unraveling and Solving the Complexities of Healthcare.

And then there is  the tubing. After a cystectomy, things still need to flow somewhere. I am considering a new book about my experience since July but, for now, I will just say the fluid flows through an ileal conduit created by the surgeon. It is sort of an artificial tube. This process is called a urostomy, a word I had never heard of until August. In a urostomy, urine is diverted from the kidneys through the ureters to the stoma which is also created by the surgeon and brought to the abdomen next to your belly-button where it drains into an external pouch and at night the pouch is connected to a “night bag”. This is actually a nice feature because you no longer have to get up in the middle of the night to go to the bathroom. At night and in the morning I feel like a plumber. The pouch needs to be replaced every 3-5 days.

As an interim to the kidney surgery I will have in January, I have another type of ostomy, a nephrostomy. The surgical procedure for this ostomy was done by an interventional radiologist. He entered my back and connected a tube to the ureter below my left kidney. The tube connects to a nephrostomy bag which I attach to my leg.

One of the things holding me back on my recovery is shoulder and neck pain. Part of it is from a torn rotator cuff. But most of it is the result of an infection which entered my bloodstream after the August surgery and decided to live in my neck. When I turn my head, my shoulders hurt. The solution is an intensive antibiotic treatment. I had a week of this in the hospital but am now administering the treatment at home. It involves two injections per day of Ceftriaxone. Each injection takes about 15 minutes. Then comes the biggie which is hooking up a bag of ampicillin, just like you see hanging from poles in a hospital. I then connect the small tube into another tube which is connected to a PICC line (Peripherally Inserted Central Catheter). The PICC line has two lumens which connect from a vein in my upper arm and ends in a large central vein near the heart. The ampicillin flows into me 24×7 for 6-8 weeks.

I am now the Director of Tubing. The small tube from the portable IV pump which I carry around along with my other two appendages is more than three feet long. I am beginning to believe the small tubing has radar antennas and microminiature nano bot computers which enable it to attach itself to door knobs, drawer handles, under my feet, and everything imaginable. 

I will be at the peak of the road to recovery early in 2026. Friends, including some doctors, ask how I am able to manage the three sets of tubing. My answer is I have no choice, the job is on to the road to recovery.

Prior stories about my recovery