It’s now three weeks since my Fistula operation. The procedure has been a success and the scar is healing well.
Unfortunately my health has deteriorated somewhat. My kidney is very much in the last stage of Chronic Kidney Disease. I have a GFR of just 3. This is a measure of my kidney’s ability to filter out the toxins from my blood. For most of the last 4 years it was operating at a sable but low 13 before a sudden and unexpected crash over the summer.
The cause of this change is unknown but I suspect it was Covid which did the deed. Certainly my Renal consultant has been taken aback by the rapid decline after a long period of stability.
So we are in a race against time. My emergency Fistula operation was the first stage in getting me on dialysis. However, it takes 7 weeks for the Fistula to mature before dialysis can begin. Will my kidney hold out long enough or will I need emergency dialysis via arteries in my neck / chest?
At the moment the expectation is that I can hold out long enough to avoid drastic action. Nonetheless someone in my position would ordinarily already be on dialysis. My nurse is quite surprised that I have still been at work, but I have been able to do so up until this week.
It is amazing how the different organs of the body work together to keep us healthy. A fault in just one part (in my case my kidney) can cause real issues.
Currently my symptoms include:
- Iron Deficiency
- Phosphate excess
- Permanently Itchy skin
- Loss of Apetite
- Occasional Nausea
- High Blood Pressure
- Swollen Feet and Ankles
- Leg Cramps
The worst of these is currently insomnia. I have not slept properly in almost a month. Most nights I have seen each hour from midnight to 7 am. It has got so bad that I have had to take time off work this week, feeling unable to drive to work and then carry out the duties of a teacher.
I have looked at over the counter sleeping tablets but these had limited effect. They only worked until I needed the toilet (which I do 3-4 times a night) after which I was awake. For hours. So yesterday I spoke with a doctor and got a prescription sleeping pill (Amitriptyline) I need to look at when I take this. Last night I was awake until 2am but then slept through to my alarm at 7am. I then slept again from 9am until nearly 11am. I think if I take it a little earlier it might work earlier in the night.
The anaemia has meant a return to injections three times a week of Epprex which boosts my red blood cells. This should relieve the breathlessness, but has also needed me to have an iron infusion.
The phosphate issue has meant a return to dietary restrictions and the need to take two large Sevalmer Carbonate tablets with every meal.
My diet is also restricted by a need to limit the creatinine. I have drastically reduced the amount of meat I eat. Pork seems fine in small doses but I cannot eat Chicken or Lamb. Beef has been OK in small doses. Stews and casseroles are particularly hard to eat – boiled meat being the most difficult. Some of this is, no doubt, a mental issue not a physical one but. Either way my relationship with food is now complicated. Overeat the wrong food and I am liable to become very nauseous.
Meanwhile my body retains a lot of water causing me to have very swollen ankles and feet. Some of this is due to CKD, some is due to the side effects of some of the necessary medications I need. A further issue is leg cramps which often comes in waves and lasts for several minutes.
The last and final issue is blood pressure which remains stubbornly high at more than 150 /70. I am now taking a combination of two different high blood pressure medications (Doxazosin and Amlipodine) and have upped the dose of both. Only recently has the blood pressure began to finally reduce and my Renal consultant believes I will need to increase the dose further in the coming weeks.
The one thing I am assured is that each and everyone of these symptoms will significantly reduce / disappear when dialysis starts. It’s just a race against time for now.