Today has been a get on my computer and type, type of day. A headache of a million things jammed into one short day. Too many things to think clearly.
So where to start. Well today I found some super sparkly shoes this morning and that’s been about the only good thing.
Today was Annabelle’s class assembly. A mini show for the parents to come and admire their incredible little people. So of course, today was also the day that Andrew’s consultant appointment had been booked for. Annabelle was completely fine about us not being able to come. Me, not so much. I wish I could have been there to adore her amazing delivery of the one line she had learnt so perfectly. I wanted to see her wagging her finger as she told Jack he better sell his cow. But life isn’t about getting what we want, is it… Today instead was about finally having the opportunity to ask lots of questions about what’s to come and find out what the plan for Andrew is.
Andrew and I headed to Guys hospital this afternoon. We arrived to find a super busy clinic and Andrew did all his pre-appointment tests. A good hour and half past his appointment time (did I mention hospitals aren’t my favourite place!) we were seen by his new consultant. Not quite what we had expected. A hard hit with reality and then back out for some more tests, injections and a trip to see the dietician.
The reality isn’t ideal. Despite Andrew having been seen for his kidneys for years his function has declined suddenly and so as the doctor put it we are running out of time. They keep banging on about how they want to avoid Andrew having dialysis but sadly with hospitals things don’t move as quick as you’d like sometimes. It’s frustrating but we have an amazing nurse looking after Andrew who I know is going to keep on top of chasing all the lose ends. Essentially Andrew now needs to complete some more tests. The kidney consultant also needs Andrew’s heart consultant’s opinion on the state of his heart. Andrew’s pace maker’s battery is due to run out next year and they are considering whether to replace it with what’s called an ICD, it essentially works as a mobile defibrillator. If he needs one of those or even with the battery replacement they will have to decide when to do that op. He will need to be checked to see if he is even a viable candidate to have a transplant. There is quite a list of checks that need to be made. And then when he had finished explaining all that he told us that being on the deceased donor list will likely involve a wait of up to 3 years. Andrew’s brother was exceptionally lucky to have received a donor so quick. As the doctor said Andrew may also be lucky but the reality is the usual wait is 2 to 3 years. Hence his point we are running out of time. Andrew’s kidney function is low, not low enough to require dialysis yet which is good because all anyone has told us over the years is they want to avoid dialysis for him. But there is not 2 to 3 years left in his kidneys. In fact the reality is he probably is only a few months away from needing dialysis if his function continues declining at the rate it is. Find a live donor was the takeaway we were given from that meeting. Find a live donor and avoid the risk of dialysis.
A few more blood tests, a hepatitis B injection and then we were seen by the dietician. He gave us some light relief from the doom and gloom. He was impressed with the diet Andrew was having and has told him to stop restricting all the foods he is. He said he’s been doing amazingly with controlling his potassium levels and he can definitely eat more of the foods he’s been missing. The dietician recommended trying to put on some more weight, which for Andrew is actually really hard. He said that with more weight he has more hope of success if he had to be on dialysis. So, on the advice of the dietician Andrew had a chicken kebab tonight. If you know Andrew, you will know how much he’s missed these! It’s not something he is going to be able to go back to eating all the time but the takeaway from the dietician was enjoy life, you have a chronic disease, you can’t reverse the damage and you are maintaining good levels.
So 3 hours later we were on our way home. Wondering quite how you find the words to ask someone if they mind donating their kidney…