Hello curious friends and interested strangers, it’s been awhile since I’ve posted an update so I thought I’d take this “extra hour” of daylight saving time this morning to give you all an update on my life’s recent happenings.
I”m 100% full steam ahead on my peritoneal dialysis treatments. It’s basically become a way of life now. It’s part of my daily routine, just like going to the restroom or having a meal. Four times per day I go through the process of sanitizing and preparing my treatment area and draining/refilling the dialysis fluid from my abdomen. This entire process (prep thru cleanup) takes about 30 minutes. In the mornings I do it right after my shower (since I also have to clean/bandage my exit site each day, I do this with my morning exchange) – so the morning “process” takes about 35 minutes. The other three take about 25-30 mins, depending on how much fluid drains from my body.
There are 3 strengths of dialysis solution. It’s basically a “sugar water” – when it’s in your peritoneal cavity it sucks water/wastes from your blood vessels into the solution. You then drain the old/refill with new solution. The higher the strength of solution, the more water/waste it pulls from your vessels. It’s amazing how the different solutions work. There’s 1.5% dextrose, 2.5% dextrose, and 4.5% dextrose. No matter which strength I use, I always “put in” 2500ml (2.5 kilos). As the solution sits in my body over several hours, it “draws in” more water from my bloodstream. So as you can imagine, I “drain out” more liquid than I “put in”. I’ve found that when I use the 1.5%, I’ll drain out about 2600-2700ml. When I use 2.5%, I’ll drain out about 3100-3300ml. When I use the 4.5%, I’ll drain out a whopping 3900-4000ml. To put this in perspective, think of a gallon of milk – that is roughly 3700ml. When you compare these nunbers to the 2500ml I put in each time, you can see how much output I have. Imagine pouring about 3/4 gallon of water into your abdomen, and draining out upwards of a full gallon or more – 4 times per day… every day. I’ve found that my “net” water output from my bloodstream (Total drained minus total put in) comes to about 2000ml… That’s about 4.5 POUNDS of water filtered directly from my bloodstream every day!
I do feel “full” a lot. Not so much as in a “not hungry” full – it’s different. More of a bloated feel. It’s also not as easy to bend certain ways. Rolling over in bed is a gingerly process, getting in and out of my car is a chore sometimes. I’ve found that the higher strength I use, and the longer into the dwell session I am, the more bloated I feel (because there’s more fluid building up around my belly). I have to tell you though – during the “drain” process it’s such a relieving feeling! Even after “filling” back up (with 2500ml) it’s usually a lot less than I just drained out so I feel less bloated for the time being.
The good news is, my initial labs show the dialysis is working, my numbers look great. My doctor told me to stick with the 1.5% for the most part but mix in some 2.5% here and there. He told me to not use the 4.5% – he said that’s mainly used when people need a ton of fluid removed fast. Since I’m not in that condition I don’t need to use that strength, thankfully. I did experiment with it and man – that stuff really pumps out the fluid. That’s when I was draining out like 4000ml every 5 hours… not fun. So, I’m very happy to stick with the 1.5% and 2.5% solutions.
On to other news – I’m officially on the Indiana Kidney Transplant list! I’ve gone through all of my testing and financial requirements, I was approved by the “board” last week. What does this mean? Well, it means that someday it’ll be “my turn” to receive a kidney from a deceased organ donor. This wait period takes about 3-5 years typically. The preferred route for me (or anyone) though is to receive a kidney from a living donor. Those kidneys are healthier and tend to last longer. Plus there’s no 3-5 year wait time – you basically schedule it for convenience of both parties. While I’m hoping to find a living donor match, I’m very grateful to be on the other “list” – and am overwhelmed with emotion knowing that people like myself are just “waiting on people to die” so we can get one of their organs. It just seems so sinister. I certainly don’t want anybody to die so they can help me. But I am truly grateful for their ultimate gift to help me when it does happen.
As for potential living donors, I know of a handful of people who have told me they are in process of being tested or plan to do so. All of that testing and communication is confidential between the potential donor and the doctors. I will never have any news reported to me personally unless it’s by the person attempting to donate. All of this seems so surreal to me – I’m so thankful for the selflessness shown by these people (you know who you are). While I could never ask anyone to do this for me – I’m so thankful for you – each and every one of you, you’re the reasons I have hope for a long life!