‘Tis the Season for Giving #santa #santababy #donatelife #organdonation #livingdonor #livingdonorsrock #inneedof #kidney #kidneytransplant #lifechanging #lifesaving #christmas #seasonforgiving #giftoflife #hope #love #askingforafriend #thebigask #thursday #tistheseason #chronicillness #invisibleillness #warrior #kidneywarrior #lupuswarrior #kidneydisease #dialysissucks
This morning, we sent Vivica a pink Silly Kidney pillow. Then we found out Vivica is in the ER.
This picture is from 2016, during one of her many hospital stays. This sweet girl has not only had TWO kidney transplants, and spent a great deal of time on dialysis, but she also had a heart transplant. She is such a fighter and could use our prayers right now.
Her blood pressure is dropping and they are having trouble with her oxygen levels— among several other things.
Please pray for Vivica. Spending the holidays in a hospital room is no fun!
#kidneytransplant #hearttransplant #fighter #fightlikeakid #kidneykid #kidneydisease #dialysis #helpingkids #sillykidneys #brave #warrior #kidneywarrior #organdonation #organdonorssavelives
Happy Thursday! #ItsAllOnHisTime #HappyThursday #Reasons #KeepPushing #KeepGoing #YouGotThis #YourWishIsComing #KidneyTransplant #KidneyDisease #KidneyFailure #KidneyWarrior #KidneyProblems #CKD #OrganTransplant #Transplant #DoubleLungTransplant #LiverTransplant #KidneyAndPancreasTransplant #Warriors #GiftOfLife #DonateLife #GoodMorning #PositiveVibes #PositiveThoughts #Rp #Truth #InstaLike #InstaFollow #Blogger
Last labs indicated his antibody count is back up, and we have a choice of doing another round of IV infusions proactively or wait till he relapses. Last infusion brought his count so low we spent 2wks in the hospital. He got a severe infection his mouth and throat that warranted an endoscopy. They were about to start a feeding tube because he couldn’t eat and he was given morphine. He came so close to a bone marrow biopsy but it cleared up. Without the infusion he will relapse, scar his kidneys, and start steroids. He’s been feeling like lately and I just want to cuddle and love him. He is such a warrior. #mylove #mywarrior #kidneywarrior #chronicillness #fsgs #focalsegmentalglomerulosclerosis #kidneydisease #kidneydiseaseawareness #autoimmunedisease #donatelife #beanorgandonor
So very thankful for every one of you amazing warriors I've met since creating this IG account. It's great to know that we are not going through this alone. We have each other to lean on. Thank you for all the great conversations.
#dialysis #dialysiskeepsmealive #renal #reanalfailure #kidney #kidneyfailure #ckd #peritonealdialysis #hemo #donatelife #thankful #gratitude #FightLikeAGirl #kidneywarrior #warrior #inspired #intuition #shareyourspare #esrd #fuckesrd #survivor #fighter #akidneyformalika #invisibleillness #goodvibes #positiveauras
Kidney Story link in bioJason has PKD. He’s a father to 6 children. Dialysis and kidney disease is a big part of the Lewis family. Jason, his wife and mother all work in dialysis. Now Jason and his mom (after 15 years with a transplant) are on dialysis receiving at home treatments from Melissa. Truly a remarkable family. They do so much for others when THEY ARE IN NEED. PLEASE let’s help Jason find his living kidney donor #kidneystories
It was nephrology day for me.
I have been going to this clinic for about two years. Previous to this I was just at a general nephrology clinic connected to the University of Calgary and Foothills Hospital.
Around the time that I started having the transplant talks and we saw a steady decline in GFR I was transferred to the Chronic Kidney Disease Clinic where I get to see my nephrologist, a nurse, a dietician and, if needed, a pharmacist.
I still have the same nephrologist which is great because he has gotten me this far, helped me realize it would be possible to have a child and he’s just generally a great doctor who takes his time and actually listens.
I had an interesting and slightly unexpected visit with this team today but I need to take some time to process this day. It caught me so off guard I almost forgot about our scheduled meet-up with friends at the bouncy castles!
This clinic is also a haemodialysis clinic so I always send a little extra love to those patients as I go by because I know from many of you what a trick of the universe it is to live through a machine.
Kemaren setelah cek lab ternyata hb ngedrop lagi jadi 6.6 jd ada rencana mau transfusi 2 labu setelah kemarin abis plg dari skyline sore jam 3 didrop temen ke rs buat daftar kamar
Setelah ditunggu sampe jam 8 malem tapi tetep ga dapet kamar akhirnya di jemput kaka, lalu pulang.
Harus segera transfusi karena dokter ga mau operasi sy kalo hb saya dibawah 10
Akhirnya besoknya (jumat) cuci darah sekaligus transfusi 2 labu reaksinya spt biasa menggigil kedinginan
Selesai transfusi besok nya di cek lab lagi HB cuma naik sedikit jadi 7.9 masih kurang jadi cuci darah berikutnya harus transfusi lagi 3 labu.
Hari selasa cuci darah lagi
Tapi di transfusi cuma 1 labu aja karena sisa nya bisa dilakukan saat masuk hari rabu tgl 13.
Tapi ternyata dpt kabar bahwa tgl 13 ga bisa masuk rs karena ga ada kamar
Jadi waiting list lagi .
Selasa, 12 Desember 2017
252 ON HD
BB 57.5 Naik 2.5kg dari berat pulang 55
BB kering 55
Lama HD 5 jam
Keluhan sebelum cuci darah : sakit punggung,
Obat yang diminum sebelum cuci darah : clonidin
Keluhan selama cuci darah : bentol bentol, gatel gatel
Obat yang diminum selama cuci darah : coditam,
Obat yang disuntik selama cuci darah : ondensentron, ipadril
Keluhan setelah cuci darah: menggigil
Obat yang diminum setelah cuci darah :
Obat yang disuntik/dikasih setelah cuci darah :
Lately I’ve been MIA because I’ve been in and out of hospital with so many infections I can’t even count anymore so Here I go and tell the story -
First picture: The last couple months I’ve been having issues with my dialysis access line (perm catheter). Some of the problems or issues were dialysis machine keeps alarming, disturbing others because the noise was annoying and loud, dialysis machine would clot because of too much alarms and so much more things. So after complaining and advocating to the doctors and also nurses telling the doctors to change the line, the first line change was a month ago and once I had it in that night I also had dialysis so we tried it out and not even 20 mins into my run and my machine keeps alarming every 2 seconds, clotted twice and had to change the circuit and had to end treatment early because of all the problems I’ve been having. So the next day I got change again for the second time and the found a clot inside the catheter. -
Second picture: Not even two weeks into the new lines it got infected and I got another blood infection. The doctors had to take it out and gave my chest a rest, this was an hour after they took my line out and look how damage my skin was. Hopefully it heals and doesn’t look like that but oh well another battle scar that I am proud of wearing. ......... Third picture: They put a temporary line in for a couple of days or until I was clear from the infection.
Fourth picture: They didn’t want me to go home with a temporary line because it was a high risk for infection so they change it again to a perm catheter. -
So I’ve basically had four line change in a month. Endless counts of admission to the hospital and also so many infections that the doctors don’t know why I keep getting them. I try to think positive and when I feel down that I change that frown upside down to a smile. I just have to keep positive. This Christmas I don’t expect any gift expect for the doctors decision on when I will be able to get my kidney transplant #dialysisproblems #dialysisprincess #kidneywarrior
My Current Meds
Prograf (Tacrolimus) 1mg 2 pills 2x a day
This is my main immunosuppressant. My Prograf level is talked about at every appointment and it’s included in every blood test. I have been on anywhere between 3 and I believe 7 pills a day. Right now my level is around 4.0. 5.0 usually is the lowest it should get. I have had the BK virus, (see Nov 24th post) which is just about gone. I have been taking other immunosuppressant to help get rid of the virus, which is why my Prograf level is low.
Arava (Leflunomide) 20mg 1 pill Monday and Friday AM
This is a Rheumatoid Arthritis med, which I’m taking to get rid of the BK virus, somehow it lets my body fight the virus while not rejecting the kidney. It’s job is finished, so I have been titrating down from as many as 2 a day to 2 a week. My level was at 29 at my last test. I think 15 is when I switch back to Cellcept, an Immunosuppressant. I needed a medical necessity letter from my nephrologist to take Arava because I don’t have Rheumatoid Arthritis, according to my insurance company. So, my nephrologist, Dr. Darshana Dadhania wrote one for me sighting her own published research that Arava fights BK virus in kidney transplant recipients, which I thought immensely badass!!! Prednisone 5mg 1 pill Monday, Wednesday, Friday
A adrenocortical steroid I have been on since day 1. I believe it is to reduce swelling in the kidney.
Allopurinol 100mg 1 pill a day
This is to prevent Gout, a form of Arthritis, where the kidney does not clear out the uric acid and it’s crystallizes in your blood and collects at a weak joint. My episodes were in the ankle, knee and once in the wrist. It is ridiculously painful. It’s a relentless type of pain that makes it fairly easy to remember to take your Allopurinol. Once I had my dose stabilized I haven't had an episode in 6 years.
Procardia (Nifedipine) 60mg 1 pill 2x a day
A blood pressure med that I have been on for a long time if not day 1. It works for me with no side effects that I’m aware.
Lisinopril 5mg 1 pill a day
A blood pressure meds just like Procardia, I think its been day 1 with no issues
#kidneywarrior #kidneytransplant #livingdonor
#Chanukah starts tonight. What’s a girl on a #renaldiet to do? Answer: double boil those potatoes! And only eat one or two #latkes. #JensKidney #lupus #autoimmune #ESRD #KidneyDisease #KidneyTransplant #OrganDonation #LivingDonor #ShareYourSpare #BigAskBigGive #STL #BarnesJewishHospital #KidneyWarrior #KidneyKindness #R20200
#Granola on the go!
It freaks me out that I can’t eat many items from the hospital cafeteria! This is a place where sick people go to heal and their friends and family visit. It’s the optimum time for #health! ♀️
So I bring my #food with me for my long wait mornings. #Hungry me isn’t a happy me
#preparation #byo #organised #postoperation #positivevibes #kidneytransplant #kidney #kidneyrecipient #kidneywarrior #shareyourspare #donatelife #livingdonor #recovery #strength #immunosuppressed #antirejection
12/12 - I haven't posted anything that's been happening this weekend because I spent my weekend at home. I took it easy after being in hospital for 6 weeks. I needed to regain my energy. Yesterday I had my dialysis and it went pretty well. My blood pressure was 131/89! I was so happy about that. Today I started working again. For those who don't know me may not know, but I work as a substitute teacher. I teach grade 6-9. And I love children. I can't wait to get my kidney so I can go back to my studies and become a teacher. I had such a good day today. But it was hard waking up at 7AM to get to work. I've been in bed for 6 weeks sleeping in to at least 1 pm. So it felt weird to be back to my routines. Oh, and on top of that? I missed the bus and was 30 minutes late! On my first day! Ironical right? Yes, I work and I have dialysis. I usually take my taxi from work to dialysis on Monday, Wednesday and Fridays. And there's nothing wrong with working while you're on dialysis. It's only if you have the power/energy to do that. I've noticed that when I work, my feet gets more swollen and I start to collect fluid. That doesn't usually happen in other cases because my kidney still has some functioning left that allows me to pee. But while working that becomes a lot harder. But since I loveeeee my job? It's totally worth it. Just got to push on! 2 more weeks and Christmas break starts! #kidneyfailure #kidneytransplant #kidneydisease #kidneywarrior #dialysis #donor #kidneydonor #teacher #teachersofinstagram #teacherlife #lovemyjob #teachingisfun #blondechild #blondegirl #workinggirl #workingwithnokidneys #healthjourney #bloglife #dialysissucks #missedthebus
#TipTuesday This is NOT meant as medical treatment but rather sharing an experience and what you learned. sometimes it’s nice to hear from someone who has been through it and has first hand experience. What advice might you give to a soon to be kidney recipient or kidney donor?
#strongertogether #kidneydonor #livingkidneydonor #kidneywarrior #kidneystrong #kidneytransplant #support #kidneyswareness #awarenesscreateschange #getloudforkidneys
So I've had my colors wrong. From now on any diabetes/complications posts will be in blue. My posts geared more towards kidney education will be in green. Green is the kidney awareness color
Chronic kidney disease describes gradual loss of kidney function. Your kidneys filter wastes and excess fluids from your blood, which are then excreted in your urine. When chronic kidney disease reaches an advanced stage, dangerous levels of fluid, electrolytes and wastes can build up in your body.
In the early stages usually there are no symptoms. Symptoms may not be present until your kidneys are significantly impaired.
CKD occurs when a disease or condition impairs the kidney function, causing kidney damage to worsen over several months or years. You may develop CKD if you have: type one or type two diabetes, high blood pressure, Glomerulonephritis, Interstital nephritis, Polycystic kidney disease, prolonged obstruction of the urinary tract from conditions such as enlarged prostate, kidney stones from some cancers. Vesicoureteral reflux's-a condition that causes urine to back up into your kidneys, or recurrent kidney infections also called pyelonephritis.
Symptoms may include (and don't freak if you have these it may be related to something else. Go to your doctor! Lol) nausea, vomiting, loss of appetite, fatigue and weakness, sleep problems, changes in urination, decreased mental sharpness, muscle cramps, swelling of feet and ankles (in my case swelling all over) persistent itching, chest pain if fluid builds up around the lining of the heart, shortness of breath if fluid builds up in the lungs, high blood pressure that's hard to control. -Mayo Clinic
If you are a type one diabetic and you are worried about your kidneys you can ask your doctor what you creatinine levels are. Ask if they are normal. You can also ask if you are spilling protein in your urine. Caught early enough your doctor may be able to prescribe a medication to keep you from getting worse. When a person gets to about 15% kidney function they will need to start dialysis or have a kidney transplant to stay alive. In the US the wait list for a kidney is 5-10 years.
In this Season of giving .. why not give the gift of life? #donate #kidneydisease #kidneywarrior #2017 #giftoflife #giving #actofkindness #selfless #love #hope #donateakidney #organdonor #livingdonor #livingdonorsrock #monday #helpsomeoneinneed #warrior #kidneys #lupuswarrior #chronicillness #invisibleillness #dialysissucks #lifesaving #lifechanging #askingforafriend
Monday Monday. 14 days until Christmas. It’s unthinkable now to think about about everything I have been through; and it was unthinkable for 5 years that I would get that amazing call. “We have a match!”
Friday I went to my office’s fancy holiday party. ( pic in the right of me Friday night)
Pic on the left is what life used to be. I reflect a lot on life;But maybe every person who’s walked this path does that. Some days I think I’m gonna wake up and and this passed 2 years will have been a dream.
Organ donors save lives
#kidneywarrior #kidneysavedmarina #life #theunthinkable #hope #organdonationsaveslives #organdonation #monday