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.
Sunday, April 3, 2011
Sunday, January 30, 2011
Sucess is Sweet
Well, it has been a lot longer than I had planned since I have actually blogged about anything. I started this blog during my vacation time, and had this ideal notion that I would have plenty of time to ramble on about lots of things. However, this has turned out to be a pipe dream. So, a month later, I'm just getting around to writing something. I didn't really want my first blog to be about dialysis, but it's been the most interesting thing that has happened to me lately, so I wanted to share the sweet success I have recently enjoyed.
First of all I need to give a little background story. I started dialysis in October 2010. I'm just rounding out my fourth month. Since my first day, I have been having this battle over blood pressure cuffs. Now, you have to understand that I'm a "heavy" person. I have large arms. Not exactly a glamorous thing to admit about oneself, but it's important to understand for the sake of the story, so bear with me. When the nurse or the PCT's see my nice large arm, they automatically reach for the "large" size cuff to take my blood pressure. Now this would make sense, but the large cuff at the center is about big enough to take the blood pressure of an elephant! (this is only a slight exaggeration, it is quite large) So now this is the frustrating part, but looking back at it now, if I were an impartial observer, I would probably find it quite amusing. After grabbing the large cuff, it begins this cycle of stupid. That's the best way I can describe it. Not to say that the staff is stupid, but the way they approach the whole situation just seems stupid. So here is the cycle: I have to wear the cuff for the entire 4.5 hours, the machine takes my blood pressure automatically every 15 minutes, they put on the cuff, it's loose because it's too big and no one can get it tight enough, it might take one good pressure, then it slips; it tries to take the next pressure- inflates, starts to deflate, then inflates some more.... then some more.... then some more..... now I'm in agony! It's bruising my arm! OMG is this thing gonna stop? Is it trying to cut my arm off? Well, it's about to succeed! .... Dear Jesus, please make this machine stop squeeze the crap out of my arm!. It finally stops squeezing, but no bp; the machine beeps until someone comes and fixes it; they adjust the cuff; it takes again.... oh no, here we go again. Inflate, deflate, inflate, deflate, inflate.... inflate some more. Oh geez, can I just go home?
So that's the stupid cycle. It seems to go on forever, and it literally goes on all night. Instead of figuring out the root of the problem and fixing it, they just fiddle with it and try to make it take a bp right now, regardless of the fact that it's miserable for me. The first time I complained, I was actually told that blood pressure cuffs cause discomfort and I would just have to "deal with it". I could not believe the words I had just heard. Did the nurse really just tell me that? Does she not understand what I'm saying to her? Am I not a patient with rights here? WTF??? (pardon my abbreviated French) I was angry. So I did the only thing I knew to do, and that was to refuse to use that stupid large cuff. So they tried a regular sized cuff. Believe it or not, it will take a blood pressure on my arm! They seem shocked every time. You would think it was a miracle that a regular sized cuff was able to take a blood pressure on a fat ladies arm! Praise Jesus, hallelujah! But no, the nurse is a doubting Thomas, and swears that it couldn't possible be accurate. I say, the large cuff isn't accurate, she swears it is. So we try a regular sized cuff on my forearm. But this doesn't satisfy her because she says that isn't accurate. So now, we have another stupid cycle- arguing over which is accurate, and which is not. Much to the dismay of the nurse, I demanded that they use a manual blood pressure cuff to take my initial and ending pressures, and the time in between, they could put a regular cuff on my forearm. That makes everyone happy, right? Well, it did for awhile. So since my nurse can't seem to make up her mind and stick with a decision (she's forever changing things) she decides out of the blue one day, that the manual cuff wasn't taking an accurate pressure and we needed to use the large cuff again! Can you believe the nerve of this broad? I couldn't. Here we go again with accurate, not accurate.... large cuff, regular cuff. I put up with it for a few days then decided it was all "stupid" starting over again. I couldn't believe that they didn't seem to have to ability to find a blood pressure cuff to meet the needs of their patient. So I took matters into my own hands. I knew I had a cuff at home that fit me perfectly, so I brought it with me. Now I insist that I use my own cuff and their cuff (large or small, automatic or manual) are not to come near me. So I feel that I've won the battle. For now at least! I just think it's a shame that as the patient, I had to figure out an answer to the problem myself. Between the team of the nurse, doctor and a handful of PCT's they couldn't figure out how to solve this problem.
Lesson learned from all of this: advocate for yourself and don't put up with "stupid." They don't have the time or interest in figuring out how to make it a positive experience for any patient. I really hate dialysis in general, and especially hate it on certain days. It's miserable having to sit there and be away from my family, my daughter, who is at home missing me. I shouldn't have to put up with crap like that, that just makes it worse. So my words of wisdom... no matter what kind of health care people your dealing with, don't put up with "stupid." You are your own best advocate!
First of all I need to give a little background story. I started dialysis in October 2010. I'm just rounding out my fourth month. Since my first day, I have been having this battle over blood pressure cuffs. Now, you have to understand that I'm a "heavy" person. I have large arms. Not exactly a glamorous thing to admit about oneself, but it's important to understand for the sake of the story, so bear with me. When the nurse or the PCT's see my nice large arm, they automatically reach for the "large" size cuff to take my blood pressure. Now this would make sense, but the large cuff at the center is about big enough to take the blood pressure of an elephant! (this is only a slight exaggeration, it is quite large) So now this is the frustrating part, but looking back at it now, if I were an impartial observer, I would probably find it quite amusing. After grabbing the large cuff, it begins this cycle of stupid. That's the best way I can describe it. Not to say that the staff is stupid, but the way they approach the whole situation just seems stupid. So here is the cycle: I have to wear the cuff for the entire 4.5 hours, the machine takes my blood pressure automatically every 15 minutes, they put on the cuff, it's loose because it's too big and no one can get it tight enough, it might take one good pressure, then it slips; it tries to take the next pressure- inflates, starts to deflate, then inflates some more.... then some more.... then some more..... now I'm in agony! It's bruising my arm! OMG is this thing gonna stop? Is it trying to cut my arm off? Well, it's about to succeed! .... Dear Jesus, please make this machine stop squeeze the crap out of my arm!. It finally stops squeezing, but no bp; the machine beeps until someone comes and fixes it; they adjust the cuff; it takes again.... oh no, here we go again. Inflate, deflate, inflate, deflate, inflate.... inflate some more. Oh geez, can I just go home?
So that's the stupid cycle. It seems to go on forever, and it literally goes on all night. Instead of figuring out the root of the problem and fixing it, they just fiddle with it and try to make it take a bp right now, regardless of the fact that it's miserable for me. The first time I complained, I was actually told that blood pressure cuffs cause discomfort and I would just have to "deal with it". I could not believe the words I had just heard. Did the nurse really just tell me that? Does she not understand what I'm saying to her? Am I not a patient with rights here? WTF??? (pardon my abbreviated French) I was angry. So I did the only thing I knew to do, and that was to refuse to use that stupid large cuff. So they tried a regular sized cuff. Believe it or not, it will take a blood pressure on my arm! They seem shocked every time. You would think it was a miracle that a regular sized cuff was able to take a blood pressure on a fat ladies arm! Praise Jesus, hallelujah! But no, the nurse is a doubting Thomas, and swears that it couldn't possible be accurate. I say, the large cuff isn't accurate, she swears it is. So we try a regular sized cuff on my forearm. But this doesn't satisfy her because she says that isn't accurate. So now, we have another stupid cycle- arguing over which is accurate, and which is not. Much to the dismay of the nurse, I demanded that they use a manual blood pressure cuff to take my initial and ending pressures, and the time in between, they could put a regular cuff on my forearm. That makes everyone happy, right? Well, it did for awhile. So since my nurse can't seem to make up her mind and stick with a decision (she's forever changing things) she decides out of the blue one day, that the manual cuff wasn't taking an accurate pressure and we needed to use the large cuff again! Can you believe the nerve of this broad? I couldn't. Here we go again with accurate, not accurate.... large cuff, regular cuff. I put up with it for a few days then decided it was all "stupid" starting over again. I couldn't believe that they didn't seem to have to ability to find a blood pressure cuff to meet the needs of their patient. So I took matters into my own hands. I knew I had a cuff at home that fit me perfectly, so I brought it with me. Now I insist that I use my own cuff and their cuff (large or small, automatic or manual) are not to come near me. So I feel that I've won the battle. For now at least! I just think it's a shame that as the patient, I had to figure out an answer to the problem myself. Between the team of the nurse, doctor and a handful of PCT's they couldn't figure out how to solve this problem.
Lesson learned from all of this: advocate for yourself and don't put up with "stupid." They don't have the time or interest in figuring out how to make it a positive experience for any patient. I really hate dialysis in general, and especially hate it on certain days. It's miserable having to sit there and be away from my family, my daughter, who is at home missing me. I shouldn't have to put up with crap like that, that just makes it worse. So my words of wisdom... no matter what kind of health care people your dealing with, don't put up with "stupid." You are your own best advocate!
Wednesday, December 22, 2010
A New Adventure
This is my first post! It's probably obvious that I don't know what I'm doing just yet. I'm slowly trying to get this figured out. It couldn't possibly be that hard, right? Ha! I'm already proving that statement wrong. I've been considering writing a blog for a while now, although I'm not really sure why. As a newby to the blogging scene, I'm just fascinated by them. I figured if every homeschooling-stay at home mom can write a blog about their kids and the things they do to occupy their time at home, then surely I can come up with something interesting to contribute. I guess we will see how it goes! Wish me luck!
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