Kidney Wings My Journey

Monday, June 27, 2011

Alison

Alison...You are going to get your turn. I think about you often I don't just do my blog for me but I also do it for you. I don't want you to ever think you are alone I am here if you need anything. Dialysis is hard waiting for the kidney with all of the ups and downs that come with it is even harder but know that there is a light at the end. I think that is great you want to volunteer I am actually going to do the same I have to wait 1 year after transplant but I am thinking of giving my social worker a call from the dialysis clinic and asking if they have any volunteering I can do. Right now I am looking at going back to school to do something in the renal field. Anyways, I just want you to know I am here and I will keep blogging about how this is all going but please let me know how things are going with you.

Friday, June 24, 2011

Been awhile

It's been awhile since I have been on I have been working and just trying to get through each day, I have been so tired. I am thinking of going back to school not sure though. I know for sure I want to do something with dialysis or transplant patients. I keep thinking that would be a great career for me since I know what people are going through because I went through it myself. I just can't actually go to a school since I am still working full time. The kidney is doing great creatine is 1.3 it still shocks me how I went in and my creatine was 10 then in a matter of 4 days it goes to normal lol. Just fascinates me...I can't wait to see what they come up with next. Well sorry to keep it short but I am tired and want to lay down. CAN'T WAIT TIL MY STAMINA IS BACK!

Monday, May 16, 2011

In and out

Since the transplant I have been running into some problems. Just last week they thought i was rejecting and did and kidney biopsy come to find out it was Procraf intoxication so they stopped that and now have me on Rapimune while I was in the hospital my WBC went up (but they are pretty sure it was caused by steroids and not an infection at the biopsy) then my RBC wen really low but they gave me 2 EPO injections and now I am making it on my own but good news my creatine is going down which is fantastic! Today though i had a little episode at clinic I went out to talk to Alvina and schedule my next apt and got really light headed cold sweat and almost pasted out they had me sit down and they checked my BP and is was 84/69 so I sat there for a bit and they gave me chicken broth then Alvina walked me to Grandpa and he just had me hold on while I walked to the car. It was really scary I did not like that feeling at all. They stopped my BP meds and now I am just taking it really slow today since I am alone I just don't want to pass out. Breathing is a little difficult but I am just taking it easy. I slept pretty much all day today and I could go back to sleep now.

Tuesday, April 19, 2011

I HAD MY TRANSPLANT

I had my transplant April 13th! It was to most amazing gift but it was the most painful thing I have gone through. No more dialysis!!!! Instead a hand full of pills but swallowing pills is better then dialysis. Uncle Jim is doing good he is in pain but it is expected the took his kidney. Let me tell you his kidney "Lefty" makes me pee like I have never peed in my life. I will check in again soon I am just not feeling very well and the pain is coming back which means the Vicodon is wearing off. Thank you for all the prayers Uncle Jim and I appreciate it all.

Thursday, April 7, 2011

I GOT A KIDNEY!!!!!!!!!!!!

Well Uncle Jim has passed and he is my donor!!! I am so excited! Everyone is SO excited!!! We went over to Grandpas with Dom and desserts. Today was a great day and I am so grateful for this gift my uncle is giving me. Keep us in your thoughts. I love you all and thank you for all of your support! Uncle Jim you are giving me my life back and I don't know how to ever express to you how much I appreciate it. I love you... (The food pictures are for my sister Callie. When she was down here she documented everything even all the food so I had to do it for her.)

Tuesday, April 5, 2011

Kt/v

Had my results from my kt/v and the came back that I have a low average which means I would need to be on the cycler longer the other info was inconclusive. They also upped one of my BP meds because my dialectic number is in the 90's and has been for the past 3 weeks. Oh and he gave me something for the nausea it works a little but then it comes back with avenges. I have a fever and have kept it all day it doesn't seem to have anything to do with dialysis since my bags are not cloudy and I have no cramping pain in my belly so that is all positive. I'm still really tired and getting more crabby with certain "idiots" in the world but what are you going to do? You can't change people and there is NO reason I should be stressing myself over the petty things in life I have more important things I need to stay focused on...kidney and staying as healthy as possible and right now I am not. I miss my dad and he has only been gone for 2 days but it is nice having him around I wish my step-mom could come out too though. Well Uncle Jim landed and is resting at Grandpa's tests start at 8am tomorrow morning. Well I am going to go play with Maxy he looks like he needs a belly rub.

Monday, April 4, 2011

Weekend

Well this weekend was busy busy busy but it was great! Saturday was the kidney walk and I got to meet Grizz Chapman from 30 Rock. He had a kidney transplant! Being at the walk was great my dad and Callie came down and it was great hanging out with Callie and Lins after the walk we went and got starfish tats on the top of our feet hurt like hell but totally worth it I love my sisters and I am glad we got to do that. Oh and I also got to help Grizz and his donor Ryan cut the ribbon which was AWESOME!!!!!!!! After the walk I paid for it though I didn't drink enough water so I have been feeling a little crappy probably didn't help that I missed my 10 dialysis. Uncle Jim will be here tomorrow and start testing Wed. Fingers crossed everyone. I better go lay down feeling a little crappy again. Night all

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."