About 40 people are dialysed in my unit each week. Like me, they are in a routine: they turn up at their allotted times, have their blood cleaned and leave to resume their life until the next session. Sometimes for months, things are steady as you go. But dramas are always sitting just under the surface, quietly waiting to change the story. Some dramas are just part of life; others are the unavoidable result of long term dialysis – of our increased and continued exposure to procedures, meds and risks that are ours alone. So it is inevitable that something will nudge us off our perch some time.
I can attest that my BigD diary has the typical mix of song and dance stories: bugs, unexpected side effects, procedures not quite right, medical ignorance, my ignorance: the list is impressive.
Why write about this now? It’s been a busy couple of weeks at my unit, with different things happening to several people at the same time. Things that while very personal are also common through our community. It seemed like a good time to not only acknowledge them locally, but also to let BigD-ers everywhere know what to watch out for, and that they are not alone. What kind of dramas? All were surgical (names not their own).
Removing Parathyroid glands Stuart’s kidneys failed eight years ago and he has been on BigD since then. In addition to producing urine, kidneys also manage the calcium and phosphate mix through parathyroid glands in your neck (see this post). Once they fail completely, the calcium and phosphate mix in the bloodstream can go haywire, causing the parathyroid glands to release too much parathyroid hormone (PTH). This creates a range of problems from itchiness to bone disease, and more. Despite a range of phosphate binder treatments he’s had very high phosphate and calcium levels for months. His specialist put him on Sensipar®, but with no effect (more about Sensipar® here). So last Thursday he lined up for surgery to remove most of his Parathyroid glands (a parathyroidectomy). Like most people, he was nervous, because it involves cutting into his throat, just below the wind pipe to get to the glands. Many other people in our unit have had this procedure, and apart from worrying that any quick head movement will result in a gaping hole at the base of the throat, all is usually fine. And so it was with Stuart.
Removing a dead transplant kidney Pam, has been weak, washed out and tired since her transplant of 12 years failed a year ago, despite being on BigD. She had begun to feel that being weak and listless was normal, but of course it’s not. Once the kidney stops working, it is a foreign body, and in my opinion it has got to go! Leaving it in place means you have to continue with anti-rejection drugs and their yucky side effects for no good reason. Also, it can get a low grade infection that doesn’t show up on blood tests. You can ask for it to be removed until you are blue in the face, but the answer is still. “…well, maybe we’ll wait a while longer, until there are indicators…” Eventually, 12 months later, it became painful and hot, and last week, out it came. Pam is already feeling more like her old self. It takes a while to recover fully (it took me nine months), but life will start its return to normal from now on.
Blocked Fistula Two weeks ago Ray’s blood flow speeds started to fall. The return pressure at the venous (elbow) end of the fistula got higher and higher, indicating some kind of blockage, like a blood clot, aneurism or a kink in his fistula. It was limiting the speed of the blood pump to a point where he was not being adequately dialysed. The staff referred him to a vascular surgeon, who arranged for a fistulagram and angioplasty (see here for details) last Tuesday. The procedure was successful and Ray is now back at the unit, with his blood pumping at the right speed.
Transplant from unrelated donor Lars’ kidneys failed about 6 months ago, and his wife immediately offered him one of hers. The difficulty was that it was not a great match. The transplant surgeon still thought it was worth proceeding, but a week later an identical donor-recipient match failed badly, so his transplant was put on hold until the reason for the failure could be identified. Lars also looked into the option of a paired kidney exchange (where two kidney recipients essentially “swap” incompatible donors with unknown, but compatible recipients). However, just last week they got the go-ahead from the surgeon. Lars received his wife’s donor kidney and he is now on the rollercoaster that is the transplant journey. Hopefully we won’t see him again at the unit for many years, if ever. So, it’s been a busy couple of weeks of drama. With luck and good care, all will be well for all players (and the rest of us) for a while. I don’t know about you, but I am looking forward to at least a few months of boring (and highly uneventful) routine.