CKD-MBD - The Bone's Bane

Those who have been following this blog know of my struggles with Mineral and Bone Disorders (MBD). A senior nephrologist, Dr. A K Bhalla had once prophetically remarked in an informal conversation with me that MBD is one of the most challenging aspects to manage in long term dialysis. The heart is often the most vilified when it comes to cause of death in ESKD. However, that is an aspect that can be controlled. It is something that is in your hands. Keep a strict tab on fluid intake. Do more frequent, long-duration dialysis. Heart issues can be put off for long.

MBD is a much more dangerous villain. It happens slyly. You can hardly do anything about it. It is perplexing even for the most experienced nephrologist. The balance between Parathyroid Hormone (PTH), Calcium, Phosphorus, Vitamin D and a few other molecules is really difficult to achieve. The result - bone problems.

I have been on dialysis for 25+ years now. That's a lot of time for MBD to work its magic. And work, it has. I have been battling MBD for over a decade now. It has been a huge challenge to control it. My PTH levels shoot up or plummet based on the change in dosage of calcitriol or cinacalcet among other things. And either phase causes bad pain in my ribs and back.

I seem to be having some respite from this ever since I switched to HDF though. A stabilising of the PTH has not been listed as a benefit of HDF. So I am not sure how and why this happened. I don't care though. I will happily take that small unintended win.

However, I have been having bone pain in other parts of the body (left groin, both heels, right elbow and so on, the groin being the most difficult). My doctors (Orthopedic and Nephrologist) put me on an NSAID (usually frowned upon due to the impact on the kidneys - but hey, both my kidneys have zero function so I can take this, apparently!) and that relieved the pain.

On the 24th of August however, I woke with severe pain in my left leg. The pain increased while walking and was in my left knee and groin. An MRI was done and the diagnosis was quite a bombshell.

I had an insufficiency fracture (a fracture due to bone weakening rather than due to an injury) in the left femur and Osteonecrosis in the right femur. What the hell?!

My doctor advised me to use a walker to help with the pain while walking, to do physiotherapy and to take bisphosphonates, a class of drugs that reduces bone loss. The alternate option is to do a hip replacement surgery. I decided to wait for a while and see if the supportive treatment helps restore the bone at the site of the crack. 

While the walker has significantly helped with the pain while walking, sleeping at night is a little difficult because I need to figure out a posture that does not cause pain. Also walking with a walker is a challenge. I have been used to doing things on my own. Now I have to rely on others for various things. And move about only slowly. Very frustrating. Travel is out for the coming few months, at least.

At the moment, I feel this is the biggest setback I have had after I had to discontinue PD in 2006. I will come out of this. I am pretty sure. There are moments of weakness, though. Short-lived. I remind myself of the road I have travelled so far. And say to myself, "Miles to go before I sleep. And miles to go before I sleep."