Last week I had what was undoubtedly the best renal consultation in a year.
I had scheduled a day of appointments with a visit to my new renal consultant at 9am followed later in the day by a scheduled appointment with my Haematology consultant at 1:15. It made for a long, but ultimately productive day, making the journey through the snow to MK hospital worthwhile.
In renal I was given a thorough examination and had a long chat with the consultant, a dietician and a specialist nurse. In truth my renal care up until now (at Lincoln) has been virtually non-existent and dissatisfactory. I have always received good support from the Haematology department, but that has only been half of the story.
The headlines are as follows:
- My phosphate levels are too high
- My iron levels are too low
- My red blood cell count is too low.
- My kidney function remains low but stable
- My potassium levels are normal
- My myeloma is in complete remission with no sign of recurrence.
My phosphate levels are currently 1.8 mmol/L and need to be reduced to between 0.9 and 1.5 mmol/L for someone in my position. This slight elevation in levels has an adverse effect upon my bones, pulling out calcium and causing the bones to weaken. Symptoms include joint pain. Given the myeloma has already caused bone lesions which have softened my bones this is something which needs to be controlled. In most people the kidney controls the balance of these chemicals but my poorly organ is unfortunately not up to the task. This can be done by drugs such as selvamer carbonate which I was taking fom April to November. However, it can also be controlled through diet.
Black fizzy drinks are one of the main culprits – so it’s Zero Coke and Min Pepsi for me from now on. These drinks are full of phosphate (the reason they are black in colour), other soft drinks do not have the same issue a they contain no phosphates, so it’s Sprite and 7 Up (sugar free versions) for me from now on.
Processed meats such as bacon are also a concern, along with off the shelf ham as these use phosphate preservatives. Other things to avoid are:
- breaded chicken
- cake mixes
- fish / shellfish (which I don’t eat any way)
- liver and kidney
- peanut butter
- chocolate bars
- drinking chocolate / Horlicks
- off the shelf bakery products e,g, crumpets, naan breads, muffins or scones
Bread and home made cakes and pastries are fine as is deli ham, and unprocessed meats – as these do not contain phosphates. Furthermore it about reducing not cutting out these foods. I was told that although dairy can be an issue it is better to have dairy in moderation rather than reduce or cut it out.
My iron levels are lower than expected. Iron is a difficult mineral to absorb and therefore iron tablets are not a solution. These cause a number of gastrointestinal issues and are not particularly effective. Instead I am to recieve to doses of intravenous iron infusions in the coming weeks. This will stabilise things for now. Again my poor kidney is the culprit. The lack of iron in my bloodstream means that my red blood cells work less effectively which means oxygen is transported less readily, the effect on me seems to have been excessive tiredness / lack of energy.
A change in diet here will also be of benefit though there are some conflicts with the need to control phosphate levels and potassium levels. In essence red meat is a good source of iron along with leafy green vegetables, dried fruits such as apricots, raisins or prunes, wholegrain foods and breakfast cereals. Whilst liver and kidney is good for iron it is poor for phosphate. The same goes for nuts.
Red Blood Cell Count is Low
I remain anaemic, the kidney not producing enough erythropoietin (EPO). This chemical is released in the kidneys and stimulates the bone marrow to produce new red blood cells. These red blood cells last approximately four months before needing to be replaced. In my case the lack of EPO means my red blood cells are not being replaced sufficiently causing anaemia. Along with the iron deficiency this is resulting in fatigue. The solution is to have weekly injections of EPREX which can be given at home. This chemical would cause me to fall foul of the rules of the Tour De France (this chemical was used by Lance Armstrong to cheat his way to the title), but I have no intention of doing anything so energetic!
Kidney Function is Stable but Low
As it has done for a year of so my kidney continues to perform poorly with a GFR of 12 – meaning approximately 12% of my one kidney is performing normally. It is true to say that is a modest 2% improvement on the last measurement, but well below the expected level for someone of my age. This appears to be the legacy of my myeloma, as I have suspected for a while. At this stage there is no need to consider dialysis and in truth this is something I want to avoid at all costs, but it may eventually be inevitable. The effects mentioned above and below are almost all related to my kidney function and must be controlled by drugs and / or diet. With the myeloma in remission, if my kidneys were going to improve they would have done by now. So medically speaking I have to live with this. As a Christian I hope and pray for a miracle!
Potassium levels normal
Way back in the early days this was one of the main concerns, but as has been the case for many months now the potassium levels are within range and stable. This is good news. I continue to take 150mg of Sodium Bicarbonate three times daily, the only one of my original drugs which I now take.
Most other measures exist firmly within the boundaries so my neutrophils, lymphocytes etc are normal.
Myeloma in remission
My meloma remains in remission as confirmed by my haemotologist. They will continue to monitor but for now there is no sign of a recurrence of the light-chain paraprotein markers. Hopefully this will remain so for a good time to come. This is especially important as a quick recurrence would rule out autologous stem cell therapy (using my own stem cells), and my kidney function would preclude heterologous stem cell transplant (using cells derived from others). Although other remedies would still be available this reduced options. Also the longer the remission lasts the more new treatments there will be available. Of course I hope and pray it will remain in permanent remission.
I would hope to be able to get back into work after Easter – though this would need to be on a part time basis to begin with. Whether I could ever see myself working as a teacher in the UK again is debatable – though that could be famous last words. I need to start the process of looking for work as sick leave nears completion, and may need to work as a supply teacher in the short term as I way up my options. One advantage of not having a job is the possibility of changing careers completely – scary but exciting!
My wife has now returned to work, part-time on a phased return to work. The legacy of her heart attack is a lack of energy and tiredness but a slow improvement. She is embarking on a cardio-fitness program at the hospital and will continue to be monitored. Her own dietary needs must mesh with my own which causes some conflicts – she needs to avoid too much red meat and eat more fish! Her cholesterol has reduced from 6.5 to 3 and she is making good progress on her diet.