One bad thing that kept happening to me, was that every 3 to 4 hours, a clump was too big to pass to the bag, and would block the flow. This caused the aforementioned pain of 6. The sensation, or urge to pee, was so great, that I felt I had to force-pee. And I did, about 2 to 4 tablespoons worth, wetting the bed! Oh well. Their solution was to use two huge, and I mean huge “turkey baster” foley syringes. (I think they were 60 ml) They used saline, filled one syringe, and inserted through one of the inlets, and with another, empty syringe, pull out the same amount of liquid using the 2nd port of the foley; but only after the 60ml were inserted. Ouch! This would be done twice as mentioned, with a temporary pain scale to 8, and then the third time, only the empty syringe would pull out extra liquid, and about half pull, they would insert and remove the same liquid, hopefully dislodging the clog on the 3rd port, the exit port. Pain scale back to a 6, or even down to a 5, but the sensation was weird. Picture trying to inflate a bicycle tire. Up and down very quickly. We knew it was working, because you could see a huge clot flow down the tube into the bag. Pain scale now back down to a 2. I was use to this constant pain scale by now.
At one point on Thursday morning, July 13th, this procedure became inadequate, and the NP (nurse practitioner [actual doctor in this case]) of my urologist was called, and he came in to perform a manual flush. He arrived probably after 5 PM, because he had to do his rounds first. First at their clinic, then current patients in the other hospital next door. But get this, he refused the huge syringes, and requested a 3ml one. A tiny thing. After about 3 minutes, he pulls out a full 3 ml of gelatinous blood, and uses a new 3ml syringe, and goes back in, and pulls out a half syringe worth. Crisis averted. My pain number was zero. Zero! I called him the bladder whisperer from that point.
The nurses were aghast. It makes no logical sense. How can a small vial be more effective than a huge one? The NP, Patrick, says that what you need is quality, not quantity. Whatever doc, you’re the man – the bladder whisperer. But upon leaving, he sets the CBI drip to max. The nurse states they had it at half (lying, it was at 40% remember?), and he said “No wonder. It needs to be on full to avoid these frequent clogs” and says his goodbyes. Pain is still at zero, even at full drip. Thank the Lord! He orders a CT scan with contrast.
However, the crisis returns, about every 4 hours. This time, without the bladder whisperer, the pain only goes down to a 1, or 1.5 after the manual flush. Oh God, I wish the 24 hours was up already. By 9 PM after a manual flush, I am taken to get a CT scan with contrast. It has been 24 hours since I was admitted, but was still on CBI for only 10 hours. This was Thursday evening.
By Friday morning, July 14th, at around 11 AM, the CBI is stopped. By 2 PM, the CT results say enough of the blood clump is gone, that I can go home WITH the foley still attached. Nothing else was mentioned to me about what they found. Nothing. The attending physician may or may not have made an appearance on one of the days there; but I cannot recall all of the comings and goings from the medical and non-medical staff. (Even a custodian came in).
The medical staff did not bother to downgrade my foley catheter from a 24 to an 18, much to my dismay. And my mother, was still with me. She never went home. She did leave the room a few times; once to eat at the cafeteria on another floor, and another time to get something from a vending machine. Again, God bless all mothers, and mine in particular. I love you mom!
The discharge nurse says I have a follow up appointment with the urologist on Monday. I have to keep my foley all weekend long. I am discharged by 4:30 PM, and am instructed how to empty my bag. Every time I move my right leg, where the output tube is attached via medical tape, the catheter rubs against the inside of my urethra and bladder, causing a weird and false peeing sensation. It’s very disconcerting, but manageable.
* * *
Monday, July 17th comes and the Urologist front desk took about an hour to ask me for my co-pay. Then, after another hour, am I called into the back, and my vitals are taken, (BP is in the high 40’s or low 50’s aka high) The nurse or tech, states she needs a urine sample, but needs it straight from my bladder, and cannot use what’s in the Urostomy pouch. I inform her that I felt that I just eliminated and would probably not have anything in my bladder. She gives me 4 ounces of water and comes back later. Only four ounces of water! After 45 minutes, I find myself speaking with Dr Adamu, finally. We talk about the 11cm mass on my left kidney, and the ‘smaller’ mass on my right kidney. Apparently, the contrast helped them see that my left mass was bigger than the first CT showed before (11 x 11 x 12 cm arising from the upper pole of the kidney. The tumor was massive, pardon the pun.), and they found out something about my right kidney too. I had a small mass. Actually, he stopped calling them a mass, and used the word tumor. He also stated I had a teeny tiny kidney stone in my right kidney, but it was nothing to worry about.
He also stated, that since there was no biopsy done, that he could not use the word “malignant” (aka Cancer) but he also stated that “I have never seen a benign tumor do that much damage before.” So, in essence, he is saying cancer, without saying cancer.
We go over possible treatments and procedures. The first thing he mentions is that the left kidney has to come out. I stare at him with a blank look on my face. I then look at my mom. Then back to the doc. I take a deep breath, and say “okay.” He explains the procedure briefly, stating it would be laparoscopic and how they will slice me through my belly button, about 4 inches top to bottom, to “reach in” and extract the kidney once it’s disconnected. He also states it will be about a 2 or 3 day stay in the hospital. Spoiler alert: it was only 15 hours after recovery, and the incision was above my belly button.
He also confuses me when talking about the other kidney. He says the tumor is small, but never gives me a size. (Maybe he did, but if so, he breezed right through that.) A brief google search, lets me know that “small” in this case usually means under 4 centimeters. He provides info for 2 procedures. One involves removing the tumor, the other, freezing it. (Also known as Cryoablation) The first procedure takes 2 or 3 months to heal from, the other, 2 to 3 days. He mentions that for the former, it’s a good idea to have a working kidney while they work on scooping out the tumor, because they would need to cut off the blood circulation, which means no urine would be produced while getting worked on. This is where the other kidney would come in, by filtering the blood as normal. What a scary thought of getting the cryoablation done after the nephrectomy!
Also, for an extra gut-punch, he stated if we go with the scoop route, he couldn’t remove my left kidney until my right one was fully healed, and by that time (2 to 3 months) my left tumor would have the chance to grow and metastasize to other parts of my body. But then he quickly moves on to ‘burning’ the small tumor on my right kidney. And yes, he incorrectly switches between ‘freezing’ and ‘burning,’ using them interchangeably. That’s not right. And here’s the reason why: Ablation, uses heat to burn tissue. Cryoablation uses cold to freeze the tissue. They both use the word ‘ablation,’ and in essence, ‘cryoablation’ is like saying ‘freezer burn.’ But I digress.
He kind of asks me what I want to do. I say, well, get the left kidney out asap, duh. He agrees. But then, what about the small tumor? Well, he wants me to get that taken care of before he removes my left kidney. (A full nephrectomy). I’m thinking “okay, you’re the doc, doc.” He states he wants to remove it asap, but schedules the procedure until August 30th, a full 6 and a half weeks later. It turns out, he has a 2-week vacation coming up in 3 or 4 weeks, and he’s actually going to be out of the country, visiting his home country that he hasn’t been to in years. Great.
Strike two!
He also states that he needs permission from my PCP for my surgery. Excuse me? The specialist, needs permission, from my regular doctor? Apparently, it’s called a Surgery Clearance, and it is standard procedure. He also wants me to lower my blood pressure and my hyper tension. (They are one in the same doc. Come on!)