Kidney Wings My Journey

Friday, October 28, 2011

Thoughts for a friend

I have work with a gentlemen named Steve for the past 2 years or so. A little over 9 years ago his brother donated some of his liver to him. Before my transplant Steve wasn't emailing me anymore and I was talking to other people. I was told by one of his co-workers his liver wasn't doing too good. I emailed Steve when I got back never heard from him but I emailed him yesterday asking him how he was telling him I was doing good but I wanted to hear from him. I read his email this morning he said he wasn't doing good he needs another transplant but whatever happens in the end at least he go 9+ years out of this one and he couldn't ask for more. My heart dropped for him he is so strong him and his wife. He has to have stomach taps every week because he has an infection and can't have the catheter. Everything he is going through it's just, I don't have the words but I am sure you are all thinking the same thing. I wish he didn't have to go through this and if I could I would donate a part of my liver. Anything just to stop his pain. If I didn't have Steve to talk to while I was on dialysis I would have been so lost and confused. He was there in the beginning and it really helped to talk to someone who had been through it. I just want to be able to spread the word for him. Please keep Steve and his wife in your thoughts and Dad if you are reading this right now can you and Mom please send healings his way. Night all.

Shower thoughts

I was sitting in the shower thinking (have had a headache going on a week now so the shower helps) I was remembering when my dad told me I wouldn't remember the pain I had after the transplant because every time I would talk to him I just said PAIN dad so much, he would say it will go away and you won't remember the pain forever. As I sat in the shower I put my hand on my kidney closed my eyes and in a way I felt the pain I remembered the moments after my transplant. As dumb as this is going to sound I like being able to close my eyes feel my kidney and remember the pain because that pain was the most wonderful gift a person could ever receive that moment in my life when my uncle gave me his kidney it was beautiful the pain was there but like my dad said it will go away. He said when your mom's appendix burst she was in so much pain and she had complications, she had pain and a lot of it but pain is not forever which now I understand. I just want to remember it now and then I don't know maybe it is because I am still not "over" it just like how I can't clean out my dialysis room. Feeling the pain and thinking about it is ok to me it makes me more grateful for my gift and for the journey I have taken. I am sure people are reading this and thinking you are crazy but when I remember I think what I am putting in my mouth drinking water and just telling myself you need to take care of "lefty" he is a gift so don't take him for granted. I never will...

Wednesday, October 12, 2011

Jab!Jab!Jab!

Well last week I was play fighting with one of my friends and he jabbed me in the kidney. I fell to the ground and stayed down for about 5 minutes. It didn't register while we were messing around that my kidney was in my abdomen, come on who has there kidney in there abdomen. My kidney has been hurting since and I went in today blood work is stable but Dr. Loral was worried he said that jab could have flipped my kidney and killed it. He said the tiniest injury to the kidney could hurt it. He said I most likely have a bruised kidney and that's why it has been hurting he gave me some medicine and said keep an eye on my urine and let them know if anything changes and tell the my friend to stay away from my kidney. I told him I would go after my friends kidney if he hurt "Lefty" :). He also took me off of the Dapsone and Acycliver!!! Wahoo 2 pills taken off the list now 6 types of pills that come out to 17 pills a day! I have been having nausea and hot flashes so he thought lets get me off these 2 and see if that helps. Fingers crossed. Well I am going to go lay down need to take it easy just til the bruised bean heels.

Tuesday, October 4, 2011

Picked up medical records

Well I picked up my medical records last week and well going through them pissed me off BIG TIME. Just reading that every time they did a urinalysis they found BLOOD+++/PROTEIN+++. Plus you have there comments she is complaining of pain in her kidneys but did anyone ever do a damn thing no they blew me off to the point where EVERYONE was thinking I was making it up hell I even started to think maybe it is all in my head.i had to put the files down lol. I have so much anger and frustration with this whole thing. I am just having such a hard time "copping" and I am not sure why, I mean I was told that many people have a difficult time after transplant but I never understood til now. And I just really wish the pain would go away in my old kidneys but again doctors keep telling me there is nothing wrong it's in your head IGA CAN'T HURT!!!!!!!!! Well guess what... IT DOES!!!!!!!!!!!! Ok sorry I feel much better getting this out rather then keeping it bottled up :) Thank you to who ever is reading my frustration lol. ****DON'T EVER LET ANYONE TELL YOU HOW YOU FEEL OR WHAT YOUR FEELING ESPECIALLY WHEN IT COMES TO YOUR HEALTH!! :)

Friday, September 9, 2011

Doing a lot of thinking

Sitting here tonight doing a lot of thinking. I am tired, a lot of people think you have your transplant and your back to normal right away. Your not your still tired and your stamina is low it takes time to get use to the pills and to get all the energy back. I have been getting migraines a lot and HOT FLASHES while everyone is cold I am sweating plus my kidney hurts and my old ones still hurt. I know I will get my energy back with time I just wish I had it now but I am not going to push it's not healthy. Don't get me wrong this transplant was the best thing that happened to me it's just hard still sitting back not being able to do everything I want to do I know in time I will be able to do a lot of them but some I won't (like eating sushi) :) As dumb as it sounds I still can't wrap my mind around the past 2 years it seems so unreal I don't know how to explain it it's just weird. But GREAT NEWS my Dad had his thyroid removed Tuesday and he is doing FANTASTIC! I am glad everything went well with him though I was really worried about him but now that everything is ok that is all that matters. Well thank you for letting me vent a little and tell you all the good news about my Dad.

Thursday, August 4, 2011

LESS THAN 24 HOURS AFTER TRANSPLANT

Thursday, July 28, 2011

Doctors Apt

Had a check up yesterday everything went great. But my doctor did say something to me and I can't get it out of my head...You know if it wasn't for your Uncle you wouldn't be here. It's weird apart of me always felt like I don't know how much time I have I was so tired and just drained, at points I just thought today is my last day I can't go on like this. I just never realized how mentally and emotionally this journey would be. At first I was like oh this will be over in no time no big deal and well then it started kicking my ass and with all the denials add more ass kicking. I am just so thankful for every day now it was such an amazing gift (it was really the gift of life) I just hope my blog helps everyone who reads it know that it will happen it just takes time but this disease does prove just how strong we all are.

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."