I've found since having a serious illness that there are lots of questions people ask. Or questions people want to ask, but maybe are not comfortable asking. So I thought I would make a list of my top 5 questions that I get asked. Maybe it will give some insight to some of you who have questions for me and didn't want to ask, or maybe even questions about someone else you know. I'm sure anyone who is in a similar situation would answer in very similar ways.
#5. How does dialysis work? - I don't get asked the question often, but when I do, I usually get a kick out of it. Reason being... those who ask will usually end up wishing they hadn't. I love to watch the look on someone's face as they begin to turn a little green in the gills as I explain. So, if you have a weak stomach, don't ask someone this question. Just let it go! Now, the true mechanics of how dialysis works is complicated, and I probably only truly understand just a small portion of it, so when someone asks out of curiosity, I know they don't really want a detailed answer. So here is my short answer that I usually give with a big mischievous grin. I pull up my shirt sleeve and show them my ugly, pulsating fistula thats scarred up sort of looking like a junkie and explain "they put one needle in here, that takes the blood out, the machine cleans the blood, then it goes back in through a needle here." Then I watch their expression change into looking like they wished they hadn't asked. Really, what do you say after that? "Oh, that's fascinating?" Ha! Not hardly. A little Frankenstein-ish....pretty much.
#4. How often do you go to dialysis? - Maybe it's because I had previous family experience with someone on dialysis, but I'm amazed at how many people don't really understand the time frame of the whole thing. I go 3 days a week (M, W, F) after work, and I sit for 4 1/2 hours at a time. Yes, it's a lot. Yes, it takes a long time. Some people are lucky, and only sit 3 1/2 hours. I'm a big person, so it takes longer. If I get lucky and my clearance is good, the doctor will take 15 minutes off of my time. Doesn't sound like much, but that 15 minutes makes a huge difference when you are bored, tired, hungry and your butt is asleep. This question is often followed by "what do you do there?" I mostly sit very still in an uncomfortable reclining chair, needles in my left arm (keeping it very still) blood pressure cuff on my right arm, going off every 15 minutes (yes, it sucks). I watch my own TV with headphones and read my Kindle, which is a blessing because it helps the time pass by much more quickly.
#3. What's wrong with your kidney's anyway? - I wish more people would ask this question, but I think most people feel it's a little too intrusive. There are lots of reasons a person could have diseased kidneys, or even be on dialysis for that matter. For me, I think most people assume that I must be diabetic and have left it uncontrolled to the point that I have damaged my kidneys. They are often shocked to discover that I'm not diabetic at all. Not even close. I actually have PKD- Poly-cystic Kidney Disease. This basically means that my kidneys are covered in ever-growing fluid filled cysts. In fact I'm part of a small population who have extremely large cysts. They are so large that they can no longer be measured by sonogram (which is the usual way to monitor them). They have gotten so large that I unfortunately look like I'm carrying twins. And some days it feels like it too! (I'm actually eager to get these suckers taken out! It will make a huge difference in my quality of life) It is a genetic fluke that I even have this disease. I should be able to trace it back through family members who have had it, but as far as we know, there are none. So the best I can do is tell myself that there is a HUGE lesson to be learned from this ordeal. The good Lord has a reason for giving me this lesson and I had better pay attention. (which is why I'm blogging about it, in hopes to maybe help someone else with my stories).
#2. When or Can you get a transplant? - This questions always throws my brain against a mental wall. There are so many "IF's" and "I don't know's" that it's hard to give someone a quick and easy answer.
Truth is, Yes, I would like a transplant, and we are working toward that. Problem is, it's only IF my blood work is good after a certain amount of time, and IF my BMI is a certain percentage. Then it's only IF I get a clean bill of health AFTER getting every possible exam known to mankind to check everything from the top of my head to the bottom of my feet. This will be a long, drawn-out process best I can tell. I think that people's perception of getting a transplant is as quick and easy as they show on those doctor shows on TV. The doctor declares this patient needs an organ, so they just call up the people with the "list" and then just in the nick of time, the patient is ready to go to the OR and get their transplant. It doesn't really work like that unfortunately. So we all have to just be patient and let the details work themselves out. (So far, I'm doing pretty good at this... my family on the other hand is having trouble).
#1. Can I give you a kidney? - This is number 1 because this is probably the greatest thing someone can say. Even though I'm eternally grateful for this act of generosity and amazing love and kindness, I never know what to say. I really want to just hug them and say "Yes! Thank You!...Let's go right now!" But we both know that's not an option, and I feel like most people say that because they feel that is what they are supposed to say out of kindness and respect for one another. Most people don't realize what a huge ordeal it is be a live organ donor. The cost and the time involved, not to mention the supervision of a kidney doctor for the rest of your life, are a big deal. I have had a few people who have offered, and I knew that they were very serious, and sincere and truly understood the implications of what they were saying. They weren't just saying it from a feeling of it being the "right thing to say". To those people, I'm truly grateful.... and take note... you are on my list! Ha! Ha! But seriously, when the time comes I know there are some truly great people in my life who will be there for me in any way that they can. For now, all we can do is be patient and wait for the right time. So, if you ask or offer me a kidney, I'm going to just smile and say "I appreciate that" and please know that I truly do.
So that's my top 5 questions. I'm sure there are more details that some people would like to know. If you have any questions, I'm always open for that. Don't be afraid to ask me, or if you know someone else with a a serious illness, don't be afraid to ask them questions. It is very validating when someone asks about your illness and sincerely wants to know what is going on with you.
