From June of 2017 Onwards.

A winter to forget

September/October 2017

In early June, whilst Knysna was burning and I feared the fate of family who lived there, I needed to head to a major city for the first time in years, sadly taking me in the opposite direction. All I needed were my transplant meds, perhaps have a budding Nephrologist take a look at the kidney and adjust meds. I never expected life to take such a turn, to distressfully whip me out of that patch of Mopane that was home, and thrust me into four walls of depressing despondency.

In order for me to comprehend the occurrences of the last few months, I have felt the need to document them, leave it in bright LCD glow on a screen, so that I don’t dwell on, nor get stuck by the trauma that unfolded.

I need to be moving on.

I need to remind myself of that.

The Renal Biopsy

 

I arrived at the transplant ward of the huge provincial hospital out of the blue, already a bad choice to do so without a prior appointment. A busy staff were tending patients on the ward and outpatients coming and going, and somehow, I managed to begin the never-ending paperwork that was needed to become an outpatient there. Typically, this takes a day, and it was a very long one, with an appointment for a biopsy the next week, but no solution to my shortening supply of transplant medication.

It was great timing, though, the Mansimvula AGM was on the weekend, and I thought I would be away from Mopane Grove for no more than ten days.

The biopsy of my transplanted kidney went quite smoothly; a lot less painful than the one I had had so long ago when I was first diagnosed with a renal disease, when the biopsy needle had to enter through my lower back and i thought that the pain could be no worse than that.

It was unfortunate that being in Jozi in timing with winter exacerbated things, but we certainly don’t choose our moments in time. It was taking weeks for the biopsy results to come through, as the government mortuaries and pathologists were on a strike of some sort. With me being on immunosuppressive therapy and having not been in the city for years, my contact with WinterCity’s first strike skipped the casual cold and flu and struck as Pneumonia. And it was a painful episode.

Pneumonia

 

It closed up my chest and left very little room to breathe, I was in agony with each coughing fit that would last an eternity. It put me flat on my back for several weeks, and it was during this time that the biopsy results came in. I think at first they let me see my charts, and I look them over every day that I can. I think they knew when I had googled enough, that they decided that they could break the news about what was wrong and the decided treatment.

By this point, I was on supplemental oxygen and suffering severe hypoxia, so I cannot recall whether I had been put back on my transplant meds at all since my arrival. I don’t believe that I was, and what transpired was largely due to this fact. 

FSGS

 

Apparently, a similar type of nephrotic syndrome that destroyed my own kidneys was now responsible for taking up residence in my new kidney and scarring the nephrons accordingly. To aggressively treat these delicate nephrons and their well-meaning glomeruli, a course of chemotherapy was prescribed to address the problem: Focal Segmental Glomerulosclerosis and Cyclophosphamide became new words in my dictionary. I was to have six sessions of this type of treatment, each a month apart. 

Only there was another problem.

After weeks of being in a cold hospital room with no sight of the sun and no light of the moon, I couldn’t do anything but lie there and sleep when I could. I was weak and inactive, and the oedema in the legs got worse. It was probably then that a thrombosis began to form in a vein in one of my legs. But it was hiding!

I remember the day I wobbled and shuffled and chuckled at the thought of Tim Conway as I made my way out of the not-so-funny hospital building and had the enormous pleasure of flopping onto a real bed, replete with fluffy duvet and magically soft blankets at Mike and Gill, but it didn’t last long.

Pulmonary Thrombosis

 

It was shortly after that, that the next problem arose. It started in the middle of the night with a feeling that I was sleeping on a small rubber ball, like a squash/racquetball. As I became aware of it, it became a little harder, like a golf ball and then bigger like a baseball, until it felt like a football, and it began to impede my breathing.

Before dawn, every breath was becoming more and more painful, and I imagined all sorts of things going wrong, but not what actually did.

There was no way to prepare for what lay ahead. I had left it a bit late, and it took quite some time to admit me and then order bloods and scans, so by the time I was meant to be on a radioactive VQ scanner, I could barely uncurl myself from the floor to stand for the machine, let alone inhale the radioactive gas.

I don’t have the imagination to think about how I would have dealt with it at Mopane Grove. I wouldn’t have survived the time to get treatment there. I doubt whether I would have seen the sun come up.

The scan and symptoms indicated a Pulmonary Embolism, a dangerous and debilitating clot in the lung, and I guess I am lucky that it didn’t kill me.

It obviously soon became a priority and took some weeks to treat, along with all other treatments for the kidney, pneumonia and FSGS. This added a whole new chemical to the mix: blood thinners! And the regular INRs that monitored blood clotting, and soon, more chemo and a circus act not seen before in a hospital.
(That’s not talking about the lack of funding and equipment and procedures and practices and lack of staff and machines for too many patients and, and, and….)

Before I forget, a small interlude.

Always an interlude.

I have had a carcinoma thing on my chest for years, and one day, out of the blue, after stopping the warfarin and clexane the day before, a surgeon marched in, promptly anaesthetized the area and cut it out! Yes, I gave permission, signed consent and was actually very happy with a new scar rather than an unsightly fleshy protuberance; the only problem was that no one obliged when, after a couple of weeks, I asked every day about removing the stitches. I eventually did it myself.

On Going Home

 

Once I was breathing better and I had been given my meds for the month, there was a little bit of time until my next chemo session, which was scheduled mid-September. I was finding my feet again after more than three months in the city, in and out of the transplant ward, enduring debilitating illnesses and time away from home, which I had not expected. There was a little more than two weeks that I could be home, recharge and find some way to settle into this new regime of travelling to the city once a month, do the chemo, recover, and Go Home!

(I can hear Stevie Nicks’ voice).

I picked up a bit of shopping in Hoedspruit, along with the Landie that had a little work done too, and we headed away from the most beautiful sunset over the Drakensberg Mountains behind us and a darkening starry sky ahead, filled with Mopane secrets, scents and nocturnal sounds.

Of course, the Grove was a mess. An ele had snapped a couple of large  Mopanes at the fireplace, but they were aligned with the log wall made up of logs that I had salvaged from being burned. It was my aloes and succulents along the facing wall of the bungalow that had had their share of being a buffet. An ele had eaten the bigger plants, duiker and porcupine had levelled the rest, and the bandits were clearly back, having dug up snails and grubs and uprooted the mini aloes before they could flower. The Bandits being Meep and his crew of Banded Mongoose.

For the days that followed, squirrels were in their hole in the Knobthorn, Monty the monitor prowled about, and there was water in the birdbath with resident waxbills, tits and finches, and all I wanted to do was take out the daybed and wait for an ele to stroll by. And many did oblige!

Inside was a mess of note; the rodents had had fun, gnawed and chewed thatch lay everywhere, and every bottle had been knocked off the kitchen shelves.

I had a couple of days of bliss with my fellow residents; so many to mention, but their images will eventually appear in a gallery I want to put up.

Then came a shocker: my body began to shut down, and I was flat and powerless on my bed. I could barely move and couldn’t eat, sleep, drink or move. I managed to make some last-minute plans and drove out of the reserve the next day, grabbing a vacant seat on a plane back to what had suddenly become my safety. The last place on earth I wanted to be, but I had to be, and rather speedily.

That was almost a month ago. I have been on machines almost daily since my return, but I’ll fill you in on more as and when I can.

 

Love y’all LOTS!