Dr. Everett Chalmers Hospital

Always something new on the pathway of life

The latest posts on our blog were about holiday, barbecue, etc. Mostly happenings from after June this year. For this post, we have to go back to April and even a little earlier than that. This time it is about me, Cees, and the journey from feeling “mwah” to feeling “horrible”. Always something new on the pathway of life.

Pain

It isn’t easy to really pinpoint the moment that I started to experience discomfort, but I do know that it started with back pain. It didn’t raise any red flags though. As a tall man (6 ft 6 inches) a little back pain is part of life, something that most tall people are willing to confirm. Normally it comes and goes, nothing special. This time it came and stayed. I decided that physiotherapy or some old fashion back massage would be a good idea. Two visits later I still had pain and I was told that, whatever was going on, it was deep.

The back pain was still a fact, but with that I had the idea that the pain was slowly moving to the flanks. To me it felt like the sensitivity you experience an hour after a kidney stone attack. Yes, I know how that feels. An appointment with the family physician was in order. The doctor listened to my story and poked my belly. Maybe some pain killers might be the answer for now and see what happens. I also felt bloated and my jeans and pants were shrinking or my lower belly was growing.

Hospital

A few weeks later I ended up at the doctor’s office again, but now the pain was in my back, my flanks and my lower belly. Also, I began to feel tired early in the evening and my eyes needed more time to focus. This time the doctor decided to go for an ultrasound to see what was going on. This doctor visit was early March and the ultrasound was scheduled for April 30.

I didn’t have to wait that long. The pain got worse and every day I had the feeling another complaint was added to the list. Eventually, on April 14, I came home and my food decided to leave my body via the way it had come in. Enough is enough so I called 811 and had a chat with the nurse who advised me to go to ER. So, after I got my toiletries, clean underwear and a t-shirt I went to the ER here in Fredericton. Always something new on the pathway of life.

First results

After I was called into the ER, they took my vitals (blood pressure, etc) and some blood changed ownership. Once the results of my blood work were in, the doctor was able to tell me that my potassium and my creatinine levels were way too high, indicating kidney failure. All in all I was given a bed, a heart monitor and an IV (to add lots of fluids). In the meantime an ultrasound was scheduled and whatever more to figure out what was causing my kidneys to fail. The latter including a drink that tasted like mud to get my potassium levels down.

April 15, my potassium was acceptable again so I could say goodbye to the heart monitor. The ultrasound didn’t say much so I had to go for a CT scan the next day. The remainder of April 15 I waited for my transfer from ER and was bribed with popsicals and apple juice.

Preliminary verdict

RPF diagram

April 16 arrived and I went to radiology for my CT scan. By the way, more blood work was done to keep check on my potassium and creatinine levels. Once the scan was done I returned to my bed and read through the rest of the day.

During Carlien’s visit, the urologist popped in and told us that the CT scan pointed towards two possibilities: Retroperitoneal fibrosis (RPF) or Lymphoma.

Looking at the information they had from the scan and blood work the verdict leaned towards RPF. Read a description of RPF here in the English language and over here in Dutch. I can tell that the fibrosis kinda “strangled” my urethra, obstructing the release of fluids and toxins. This was strange to me, because I never had the idea that my urinal highways were blocked in the first place. There really is always something new on the pathway of life.

Surgery

With the preliminary diagnoses being set it was time to get my kidneys going again. Plan was to insert two stainless steel stents in my urethra. This should deal with the obstruction, allowing me to release built up fluids and toxins.

April 17 was the day of the surgery. I was nicely put to sleep and few hours later I woke up with two stents and a catheter. Once the stents were inserted, I started to leak like Niagara Falls. The catheter wasn’t really comfortable, but I noticed that my back pain and flank pain were gone. I forgot the amount of fluids I lost during the first day, but it was a lot.

Next day I was feeling great and my blood work was positive as well. Time to go home. With the stents the complaints were mostly gone, but there was still the cause to deal with.

Now what?

I was given Prednisone to deal with the fibrosis and visits were scheduled with the rheumatologist, oncologist and urologist.

At the moment, August 25 2021, I am done with the prednisone but gained many pounds. I lost 18 lbs in fluids during the first week at home but gained a few after that.

In three months I will have another CT scan to see if the fibrosis stays stable or not now I quit the prednisone. I asked to keep the stents in, in case the fibrosis acts up again. This way it won’t damage my kidneys. The urologist told me that my kidneys function well, so they weren’t damaged during the first months. Also, the oncologist eliminated the possibility of lymphoma. RPF it is. In the meantime I live my life with some adjustments, found my way to the swimming pool again to get rid of some extra pounds.

Though nobody asks to live with RPF, we are grateful for the outcome so far. In the meantime we pray that things remain calm and that the stents can be removed in due time.

4 thoughts on “Always something new on the pathway of life”

  1. Heftig allemaal Cees… dat waren spannende maanden. Gelukkig gaat het nu weer beter. Hartelijke groeten van Reint en Lydia

  2. M Nieman- van Woudenberg

    Gezondheid is het belangrijkste in het leven.
    Hopelijk voel je je weer beter. Uit ervaring weet ik hoe moeilijk de prednison kilo’s verdwijnen maar volhouden.

  3. Pittige maanden gehad lees ik. Blij en dankbaar dat het nu beter met je gaat, dat jullie op vakantie konden en ervan genoten hebben..
    Hopelijk blijft de verbetering en mogen de stents op de duur verwijderd worden.
    voor nu beterschap en sterkte.

    Gr Wim en Jitske

Leave a Comment

Your email address will not be published. Required fields are marked *