Kidney Wings My Journey: It's going to be rough

Thursday, March 17, 2011

It's going to be rough

Had clinic today was kinda rough. I have not been feeling very good lately been having cramping in my legs and feet,fluid overload, and just been beyond tired. As I was telling Dr. M he asked me do your hands shake? I said yes but what does that have to do with anything, he then told me that is not good all my symptoms are telling them I am not taking to dialysis. So next week I have to go in for a kt/v so they can see if what they think is true. Being on dialysis I always joke about "dying" because if I don't find humor in being sick I don't think mentally I can handle it but now I am scared what if dialysis isn't doing the job? I just don't get it....I just want this all to be a nightmare and go back to a "normal" life. I am just so tired and frustrated with feeling this way I want to feel good I want to have energy I want to be able to act my age. Yesterday I had fluid overload really bad my face was huge and I just felt really bad I called my mom and told her I really feel like I am dying and I tried to laugh it off afterwards but honestly I felt like I was I just didn't feel right at all. This is all just beginning to be too much to handle mentally and physically. People can think I am being a drama queen or a baby but until you go through your organs shutting down you have know idea how hard it really is.

5 comments:

Alison Jane HannMarch 17, 2011 at 5:29 PM
Hi Kristen, I know how you are feeling. I'm in the same boat and I wonder whether my transplant will happen in time. I'm so sick and tired. Today I couldn't even bear to get out of bed. I write about it in my blog, among other things, but I feel like nobody that reads me really knows what it's like to be in my body (and mind) God bless you - I'm praying for you!
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KristinMarch 17, 2011 at 5:52 PM
Thank you Alison for being here and understanding. But you are going through not just renal failure but pancreas I commend you for your courage and strength. It's very hard to do this alone but this blog really does help. I am here if you need to ever talk or vent. By the way I love your cards!
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MegMarch 18, 2011 at 11:15 AM
You are definitely not a drama queen or a baby!!! You are literally fighting for your life and that can't be easy for anyone. You should bitch, yell, cry...WHATEVER helps you to feel better and express your emotions. I will be there to listen (just please don't throw things at me haha)
You deserve to be normal and act like every other twenty something.The hope and prayers won't stop until you have that fabulous new kidney that is out there somewhere. And when that happens you can do all the things you have lost out on or missed and I will be right there with you! Can you say Hawaii and Ireland?!
Words can't express how sorry I am and how my heart goes out to you because of what you are going through. I love you...
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Aunt MayoMarch 19, 2011 at 1:14 PM
Hang tough! Dig into that strong Flynn pysche! So many prayers are coming your way. Everyone in my St. Vincent de Paul group is praying for you. Good things will be coming your way soon.....
I can picture you at another Tigers game with all your Uncles with you....drinking beer & having fun! Love you pumpkin!
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AnonymousMarch 23, 2011 at 12:38 PM
Anyone who hasn't experienced what you have gone through can't even comprehend your situation. I continue to pray for your well being. Keep your spirits up! My favorite quote from church this week "The wind blows where it chooses, and you hear the sound of it, but you do not know where it comes from or where it goes. So it is with everyone who is born of the Spirit."
Ken
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10 Symptoms of Kidney Disease

Symptom 1: Changes in Urination

Kidneys make urine, so when the kidneys are failing, the urine may change. How?

■ You may have to get up at night to urinate.
■ Urine may be foamy or bubbly. You may urinate more often, or in greater amounts than usual, with pale urine.
■ You may urinate less often, or in smaller amounts than usual with dark colored urine.
■ Your urine may contain blood.
■ You may feel pressure or have difficulty urinating.

What patients said:
"When you go to use the restroom, you couldn't get it all out. And it would still feel just like tightness down there, there was so much pressure."
"My urine is what I had started noticing. Then I was frequently going to the bathroom, and when I got there, nothing's happening. You think, 'Hey, I've got to go to the john,' and you get there: two, three drops."
"I was passing blood in my urine. It was so dark it looked like grape Kool-Aid. And when I went to the hospital they thought I was lying about what color it was."
Symptom 2: Swelling
Failing kidneys don't remove extra fluid, which builds up in your body causing swelling in the legs, ankles, feet, face, and/or hands.

What patients said:
"I remember a lot of swelling in my ankles. My ankles were so big I couldn't get my shoes on."
"My sister, her hair started to fall out, she was losing weight, but her face was really puffy, you know, and everything like that, before she found out what was going on with her."
"Going to work one morning, my left ankle was swollen, real swollen, and I was very exhausted just walking to the bus stop. And I knew then that I had to see a doctor."
Symptom 3: Fatigue
Healthy kidneys make a hormone called erythropoietin (a-rith'-ro-po'-uh-tin) that tells your body to make oxygen-carrying red blood cells. As the kidneys fail, they make less erythropoietin. With fewer red blood cells to carry oxygen, your muscles and brain become tired very quickly. This condition is called anemia, and it can be treated.

What patients said:
"I was constantly exhausted and didn't have any pep or anything."
"I would sleep a lot. I'd come home from work and get right in that bed."
"It's just like when you're extremely tired all the time. Fatigued, and you're just drained, even if you didn't do anything, just totally drained."
Symptom 4: Skin Rash/Itching
Kidneys remove wastes from the bloodstream. When the kidneys fail, the buildup of wastes in your blood can cause severe itching.

What patients said:
"It's not really a skin itch or anything, it's just right down to the bone. I had to get a brush and dig. My back was just bloody from scratching it so much."
"My skin had broke out, I was itching and scratching a lot."
Symptom 5: Metallic Taste in Mouth/Ammonia Breath
A buildup of wastes in the blood (called uremia) can make food taste different and cause bad breath. You may also notice that you stop liking to eat meat, or that you are losing weight because you just don't feel like eating.

What patients said:
"Foul taste in your mouth. Almost like you're drinking iron."
"You don't have the appetite you used to have."
"Before I started dialysis, I must have lost around about 10 pounds."
Symptom 6: Nausea and Vomiting
A severe buildup of wastes in the blood (uremia) can also cause nausea and vomiting. Loss of appetite can lead to weight loss.

What patients said:
"I had a lot of itching, and I was nauseated, throwing up all the time. I couldn't keep anything down in my stomach."
"When I got the nausea, I couldn't eat and I had a hard time taking my blood pressure pills."
Symptom 7: Shortness of Breath
Trouble catching your breath can be related to the kidneys in two ways. First, extra fluid in the body can build up in the lungs. And second, anemia (a shortage of oxygen-carrying red blood cells) can leave your body oxygen-starved and short of breath.

What patients said:
"At the times when I get the shortness of breath, it's alarming to me. It just fears me. I think maybe I might fall or something so I usually go sit down for awhile."
"I couldn't sleep at night. I couldn't catch my breath, like I was drowning or something. And, the bloating, can't breathe, can't walk anywhere. It was bad."
"You go up a set of stairs and you're out of breath, or you do work and you get tired and you have to stop."
Symptom 8: Feeling Cold
Anemia can make you feel cold all the time, even in a warm room.

What patients said:
"I notice sometimes I get really cold, I get chills."
"Sometimes I get really, really cold. It could be hot, and I'd be cold."
Symptom 9: Dizziness and Trouble Concentrating
Anemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems, trouble with concentration, and dizziness.

What patients said:
"I know I mentioned to my wife that my memory—I couldn't remember what I did last week, or maybe what I had 2 days ago. I couldn't really concentrate, because I like to work crossword puzzles and read a lot."
"I was always tired and dizzy."
"It got to the point, like, I used to be at work, and all of the sudden I'd start getting dizzy. So I was thinking maybe it was my blood pressure or else diabetes was going bad. That's what was on my mind."
Symptom 10: Leg/Flank Pain
Some people with kidney problems may have pain in the back or side related to the affected kidney. Polycystic kidney disease, which causes large, fluid-filled cysts on the kidneys and sometimes the liver, can cause pain.

What patients said:
"About 2 years ago, I was constantly going to the bathroom all the time, the lower part of my back was always hurting and I was wondering why...and they diagnosed that kidney problem."
"And then you're having to get up all time through the night, and then you have the side ache, a backache, and you can't move."
"At night, I would get a pain in my side. It was worse than labor pain. And I'd be crying and my husband would get up, everybody, rubbing my legs."

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Thursday, March 17, 2011

It's going to be rough

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AZ Kidney Foundation/ IGA Nephropathy Support

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10 Symptoms of Kidney Disease