I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Razman on October 01, 2007, 09:45:13 AM
-
Many of you will remember Angiekidney and I hope you will send an email and wish her the best. She is still a kidney survivor and we should not forget her. Maybe a welcome back would even better. Send to her fiancee @ pfra9184@mindspring.com or post her & I will forward them . Thanks
Here the last post from her fiancee :
I have some news to share about Angie.
She went in for surgery very early this morning (Sun Sept 30/07) at around 1:30am EST and came out around 5:30am EST a kidney heavier. The transplant was successful!! But not without some minor complications. Some people may remember her bout with peritonitis a couple years ago. Well, it seems to have caused more scar tissue damage then previously expected and the surgeons had to perform additional surgery to make more room for the new kidney. The new kidney is working but it's not working at 100% efficiency yet. Her doctors say that this is expectantly normal and should improve over the next few days. She is also dealing with some fluid build-up in her lungs and is currently on a respirator to help her breath easier. For the most part, she and her new kidney are doing well and her doctors expect her to make a full recovery.
-
I am so glad for her-that is wonderful news.
-
Great news Razman! Thank you for letting us know. :cuddle;
-
Good for Angie. :thumbup; Hope it lasts a lifetime Angie.
-
Thats great :thumbup;
-
Thanks for passing on the good news. :2thumbsup;
-
Wonderful, Angie has been dealing with renal disease in various fashions since she was a child. The latest round of dialysis put some life plans she has on hold. Now with the new kidney she'll be able to make those plans a reality.
Congratulations Angie!
-
:bandance; Congratulations Angie!
-
How wonderful!!!! Yeah Angie! Congrats and enjoy many, many, many wonderful years with your kidney!!!! Here's to a speedy recovery!! :bandance; :bandance;
-
Congrats!!! I am so happy for you! I shall repost this on your forum. I love hearing great news like this... :cuddle; :grouphug;
:2thumbsup; :yahoo; :bandance;
-
Congratz :yahoo;
-
Fabulous news for Angie. :clap;
-
Congrats
-
Congratulations Angie. :clap;
-
Thanks to everyone who has sent a message. I sent a copy of all the posts to her fiancee and will let you know how things are going when I get more info and I will update them on all future posts.
-
Congrats Angie on the new kidney. Hope everything goes well and you get back home as soon as possible!! :bandance; :yahoo; :beer1; :bandance;
-
That is awesome, i hope her transplant lasts a long long long time :2thumbsup;
-
That is great news!
-
I'm so happy for you angie, i read your post on Shays site and on kidney friends,i was so excited, hope all is going great.
Cheers Charee
-
Good news--hope all continues to go well.
-
:yahoo; Wonderful news Angie. Hope the kidney soon gets to 100% and you're soon up and about
-
What wonderful news. Wishing you a speedy recovery angie. :cuddle;
Amanda
xxoo
-
FANTASTIC :yahoo;
-
Congratulations Angie on receiving a working kidney. Saw the news on another board but only that you had been offered a kidney. I am glad to hear that it is in and working. Hope it works for a long, long time!!
-
I'm not an expert but I guess that it always takes some time to get the transplant working. I really want the best for her. Here is some of the latest info. I made a copy of the first set of posts and sent it to her boyfriend . He has let her know that everyone is thinking about her.
Update: Okay, for starters. Those of you that want to send a get well cards to Angie, this is the best I can come up with.
Send your cards to...
Angela Essery
University Hospital - 339 Windermere Rd, London, ON N6A 5A5, CANADA
If anyone wants to phone her, she can be reached during normal visiting hours at 1-519-685-8500 ext: 38063.
Now for the daily news update. Angie is still experiencing some minor complications. The big thing now is that her blood pressure is quite low. Can't remember the exact figures she told me but near 80/50. This is making it harder for her to take in oxygen when breathing and making it difficult on her new kidney to filter out what it is suppose to filter out. Her doctors have given her medications to help elevate her blood pressure to a more normal range but in the mean time, she is still in need of dialysis until her "sleeping kidney" wakes up. All in all, she is doing well and is really looking forward to finally getting off dialysis.
-
Great news! Was this done in Canada?
-
Yes Rerun , the transplant was done in Canada.
-
Thanks for keeping us posted Razman, please let her know she has many prayers coming her way :2thumbsup;
-
What great news!!!! :bandance;
-
That is great news to hear.
Praying for a speedy recovery.
-
HURRAY FOR HER! Good luck and get well quick!
-
Here is an update on a message from Angie :
I am in severe pain but finally able to move around a bit (sorry about any spelling - Sandman can edit this later as I am "out of it") .. I was going to use the computer earlier but was just too exhausted. I however could not get more than 45 min sleep as it is hectic here.
My kidney is still hardly making any output so tomorrow they will do a biopsy early in the morning.
Sorry this is short but I really don't feel well enough to sit here too long. The catheter is annoying me and the keyboard is in an odd location for typing.
I talked them into doing dialysis on me 2 days in a row as I could tell I had too much fluid on me but they were afraid I would dehydrate the new kidney. Turns out that I had 18K on me extra!!!! No wonder my skin is so stressed and taunt!! It has been making it hard to move around and I need to move around as I have bad lungs that get pneumonia easily.
-
Thanks for the update Razman.
-
WOW! That is great news! So happy for you, Angie! Hope things get better and better and better for you. Our caring thoughts and prayers are with you.
-
:cuddle; Wow Angie. Congratulations on your transplant. :grouphug;
I wish for the transplant to have a lonnnng and happy life living inside you! ;) :cuddle;
-
I hope things get better soon! :cuddle;
-
Congratulations Angie. Wishing you the very best.
-
Angie was really feeling down because it seemed that things were going real SLOW but here is part of a message that came through today. I know that she can't wait to get home.
From her fiancee.
Just got off the phone with Angie, I'm so excited after talking
with her that I hope a can repeat correctly lol. she wanted for
me to tell you that she actually had tomato soup for lunch! she hasn't eaten that
in six years! Ohhh and here's the biggie we've been waiting for, its starting to work !!
Sure worth getting excited about, she sounds
really good to me, she's still tired but getting the rest she deserves.
-
:2thumbsup; good news.
-
Yeah! Go kidney!!! :bandance; :bandance; :bandance; :grouphug;
-
:cuddle; go kidney go!!! :boxing;
-
That is awesome, so glad it is finally working, :clap; Hope she gets home soon so she can live happily ever after
-
wohoo!!! :yahoo;
-
Keep up the good work Angie and Mr Kidney! ;D
-
Hope all goes well and that the new kidney last a long time.
Get Well Soon.
-
Great news :2thumbsup;
-
Here is an update. I guess there are ups and downs with any transplant surgery but I sure hope that things start working for her. Please remember Angie in your prayers.
From her fiancee
Today, Angie is doing so-so. She has an unbelievable amount of fluid on her (near 18k, maybe more by now considering she could very well have lost dry weight from not eating) and is in a heck of a lot of pain from being so severely overloaded. Angie told me that her doctors have given her another medication to help induce urination and it seems to be helping. Not quite as much as she should be getting but much more then she was producing before. I wish I could remember the name of that med but I am drawing a blank right now. Anyway, even with that alarming amount of fluid on her, her doctors continue to keep giving her plenty to drink but with little outlet. Angie tells me that her doctors don't want to give her to much dialysis for fear that they may dehydrate her kidney? I am beginning to get very scared now. I am praying that she will pull through this okay.
-
Come on Angie, hang in there girlfriend, give it a little time, i am sure you are in good hands and you will be doing fine soon. Take care and Godspeed :cuddle;
-
another update from Angie .. Yesterday evening
Good news!
The surgeon came back and checked me personally, believed me, realized I was 82kg (dry weight before I came in for transplant was only 62.5kg/63kg) and I was actually having heart trouble. My mom had to feed me in bed as I could not even stand to sit up. It was too much for my heart! What is the good news is when the surgeon okayed dialysis and even allowed them to up the take off amount from 3kg to 6kg! They only got off 5.4kg but that still was a great help! Plus the dialysis nurse was very concerned about my heart arrhythmia and made the nurse realize that this was a BAD thing for anyone still on dialysis. The nurses were waiting for the kidney to pick up the slack but were holding off too long when it came to the fluid. Also it seems they weren't taking into the fact that my new kidney is taking off K (Potassium) and dialysis as well and it was actually on the low side which can also cause the heart arrhythmia. Infact today was the day I got to prove to the day nurse that I AM compliant and not bad and totally gained her respect when she saw how different I am when I can get out of bed and walk by myself and take my own pills on time without taking a few hours due to heart burn or acid reflux or thrush (which the surgeon today also found out when he checked me out that I have all the way down my throat).
I also am eating solid foods finally and just had a shower. It was a LOT easier THIS time around! lol I could actually move my legs!!
So things are looking up and I am still peeing even without any additional lasix today (which reminds me ... wasn't I supposed to get some more??).
Right now the night shift nurse (my favourite nurse Sherry) is in. Amy was the day nurse and Sherry told me that Amy was totally taken by surprise by my progress! Now she believes me!
-
Jeeez it sounds like torture - Poor Angie!
Thank you for the update - I hope her progress continues!
-
I hope things get sorted soon Angie :thumbup;
-
Hang in there Angie :grouphug;
-
Keep on going Angie , you'll soon be home. :grouphug;
-
That's some good news, but I hate idiot nurses. No idea what thrush is off hand, but hope that clears up soon.
Chris
-
That's some good news, but I hate idiot nurses. No idea what thrush is off hand, but hope that clears up soon.
Chris
"Thrush is an infection of the mouth caused by the candida fungus, also known as yeast. Candida infection is not limited to the mouth; it can occur in other parts of the body as well, causing diaper rash in infants or vaginal yeast infections in women.
Thrush can affect anyone, though it occurs most often in babies and toddlers, older adults, and people with weakened immune systems."
It usually shows as a white substance on your tongue. It's prevented after transplant (or minimized) by Antifungal medications. A swish and swallow medicine.
-
That's some good news, but I hate idiot nurses. No idea what thrush is off hand, but hope that clears up soon.
Chris
"Thrush is an infection of the mouth caused by the candida fungus, also known as yeast. Candida infection is not limited to the mouth; it can occur in other parts of the body as well, causing diaper rash in infants or vaginal yeast infections in women.
Thrush can affect anyone, though it occurs most often in babies and toddlers, older adults, and people with weakened immune systems."
It usually shows as a white substance on your tongue. It's prevented after transplant (or minimized) by Antifungal medications. A swish and swallow medicine.
That rings a bell. Forgot what medicine they gave me after transplant since I am no longer on it
:thx;
-
Angie posted this message today in her forum. Please keep her in your prayers.
Oct 9 / 07 9:30 AM
Today is rainy and gloomy .. just like my heart.
Dr. Jevnikar came in and I had thought things were great (except for being up every 2 hrs last night to pee) til he opened his mouth ...
I feel like crying...
He discussed my options to the medical team right in front of me and wants to do not just the ultrasound but yet another biopsy as my creatinine is going up and he is not happy with my output compared to my input I guess. I am gaining weight. Am 0.2kg up. But I think that is the terrible hunger pains from the Prednisone as I am snacking a lot. Been eating carrots to try to be good but it is hard when you are always hungry and shaking in hunger.
Dr. Jevnikar talked as if they would have to decide if it was even worth it to keep me on the potent meds I am on. It just felt so much like they are giving up on me!! I didn't even consider that this transplant wouldn't work in all honesty!! I had hope! I was wondering if it was worth it, sure, with all the trouble I have been going through, but once I got that hope I imagined visiting my fiance's family for Christmas and working full time and getting married!! Now it all seems so far away and unrealistic!!
But before I give up, I must see the results. They post poned the ultrasound only because they want to do the biopsy today at the same time as well.
That is all I have to say. If anyone is going to call me ... today is the day. I am crying.
-
Oh, that's horrible! I hope things start going better quickly! Angie is in my thoughts and prayers. :cuddle; :cuddle; :cuddle;
-
Hope things start looking up. :grouphug;
-
I hope things start to go well. Hopefully just a med change could help.
-
Oh Angie. OH honey. About all I can do is offer my prayers and comfort to you. :grouphug;
-
I hope everything looks up, your definately in my thoughts and prayers. :grouphug;
-
I have bad news about angies transplant. I've been in touch with her by email and at first, all seemed to be optimistic but I just got this email today as follows
Today is rainy and gloomy .. just like my heart.
Dr. Jevnikar came in and I had thought things were great (except for being up every 2 hrs last night to pee) til he opened his mouth ...
I feel like crying...
He discussed my options to the medical team right in front of me and wants to do not just the ultrasound but yet another biopsy as my creatinine is going up and he is not happy with my output compared to my input I guess. I am gaining weight. Am 0.2kg up. But I think that is the terrible hunger pains from the Prednisone as I am snacking a lot. Been eating carrots to try to be good but it is hard when you are always hungry and shaking in hunger.
Dr. Jevnikar talked as if they would have to decide if it was even worth it to keep me on the potent meds I am on. It just felt so much like they are giving up on me!! I didn't even consider that this transplant wouldn't work in all honesty!! I had hope! I was wondering if it was worth it, sure, with all the trouble I have been going through, but once I got that hope I imagined visiting my fiance's family for Christmas and working full time and getting married!! Now it all seems so far away and unrealistic!!
But before I give up, I must see the results. They post poned the ultrasound only because they want to do the biopsy today at the same time as well.
That is all I have to say. If anyone is going to call me ... today is the day. I am crying.
Okay that is the update. The surgeon came in just now and said my Potassium is too low again .. why my heart is having a hard time carrying my weight again. He also said that these tests will just make sure .. basically I think he realizes how upsetting today's news can be to me. I want to go on with my life, get a full time job, save for my wedding, get married, start a family! Not have to go back on dialysis!
Anyway, gotta get going! Thanks for your emails! They cheer me up!
Sincerely,
Angie Essery
-
Sorry to heat that Angie.... I hope things turn around for the better.
Sending good thoughts and prayers your way.
Amanda
xxoo
:cuddle;
-
Hang in there Angie, Hope your better soon :cuddle;
-
Angie
You keep fighting girl. Hopefully you will turn the corner soon. :grouphug;
willieandwinnie
-
:( :grouphug;
-
Keep fighting girl! :boxing; :cuddle;
-
.....I pray for her total recovery!
-
Angie, Sounds like you're off with a rough start....Hang in there. Wishing you all the best....love and hugs, kelli
-
Here is another update on Angie . She sure is have a rough time and needs all of our prayers. Some day she will be able to look back on all of this but right now it is a rough time.
From her fiancee:
She has informed me that her doctors have her taking 160mg Lasix daily! 80mg in the morning and another 80mg at night. From what I know of Lasix, it suppose to force you to pee and for Angie, it most certainly is doing just that.
From Angie :
I need all the well wishes I can get! It has been hard to even get out of my room because of this. This is the first time out and on the computer but my feet are losing circulation because off all the fluid in my feet that I have them high up as I type with this keyboard in my lap.
-
Thinking of you Angie, and praying that things go well.
-
Here The lastest on Angie from her web site Hope she doesn't mind i have copied it ...
Re: Angie got the call Sat Sept 29th!
« Reply #50 on Today at 12:02pm »
--------------------------------------------------------------------------------
Yesterday at 9:09pm, sandmansa wrote:Well, since there were somethings I forgot to mention in last nights update post, I figure now would be as good a time as any.
Angie told me that her doctors were entertaining the idea of performing another biopsy for today but have decided against it after learning that her hemoglobin had dropped very low. I believe she mentioned mid 70's (120 is normal for females) but I don't know if that's Canadian or US figures. I assume Canadian. Her doctors fear that if they do perform a kidney biopsy on her now, that she would most likely bleed to death. So they are holding off on that for now.
Today, she took it upon her self to only take half the Lasix she was suppose to because of her dangerously low potassium levels were causing mounting stress on her heart. The excessive peeing from the Lasix and the added dialysis were leaching more potassium from her body that she could take in. So today, her heart feels better but she is retaining more fluid again. Now her doctors are giving her high potassium foods like bananas and chocolate, along with potassium supplements to help bring her potassium levels back up.
She put her foot down today and demanded that the medical team caring for her, to listen to her and I do believe she surprised them with just how much she really knows. So finally, RESPECT AT LAST!! Maybe now, they will work with her and not just for her. I'm proud of you Angie! Now lets kick that kidney in the butt and make it start earning it's keep.
They aren't giving me bananas and chocolate. I am selecting them from the menu and am asking people to bring bananas into me! lol They did have me on supplements but good news today .. Potassium is 4.2 (good range is 3.5 - 5) so I am off those now and my heart is finally safe after all this time!!!
But my hemoglobin DID drop more (yes these are Canadian numbers since I am in Canada) and mine is 69 (that is 6.9 for you Americans .. round about .. not sure if that is exact) so I am very very tired and can barely function but they don't want to give me a blood transfusion as they don't want to raise my antibodies! I do want to ask about getting IV Iron tho but I guess Iron can conflict with the Prograf pills??
More good news! The creatinine actually came down a little today! 569 (Canadian) .. which I have NO idea how what that would be in American. Someone will have to convert for me. I know there is a great converter link on IHD (I seem to recall) so maybe someone there can convert.
Still have fluid all over but seems to not be getting excessive so much so it is tolerable.
Today at 1:22am, Shay wrote:Geez...She's going through SO much! If she is peeing out that much, shouldn't they stop the dialysis on her? It doesn't seem like they are thinking all of this through...
You are mistaken .. I have not had any more dialysis since the last time .. but my potaasium had been dangerously low SINCE the last time. That is what he meant.
Today at 11:00am, karol wrote:Hi Angie,
I saw Lori Hartwell last night and she was telling me that because she hadn't used her bladder for so many years, when she had her transplant the kidney actually was draining into her leg! They solved the problem by draining the kidney with an external catheter for a while, and over time her bladder expanded and her ureter worked better too. Not sure if this is a similar situation to yours, but you may want to contact her. Do they have you on Ditropan for bladder spasms? Hope things are better today. {{HUG}}
Oh wow! Tell Lori I am doing a little better now and you can give her my email address if you want at angieskidney@gmail.com (only one I can get mail at while here).
The Prednisone is making my face so fat and I don't look like me anymore .. just like last time! lol .. but what is worse is the mood swings! Holy crap I cry a lot and then am happy that the kidney is working then I get scared at any little pain over the kidney area! Man I am a wreck! lol
Well, I better summarize this for the sake of those copying this to other boards cuz this time I have said a lot of useless junk
So here it is:
Potassium: Good finally! (4.2 Canadian)
Creatinine: Came down (569 Canadian)
Hemoglobin: dropped more (69 Canadian = about 6.9 US)
Weight: 74.2kg I think? I forget but it is coming down too!!
I am feeling optimistic today Thanks to everyone's prayers and well wishes!!
Link to Post - Back to Top Logged
--------------------------------------------------------------------------------
Angie
Reflux @ age 9
1st Dialysis @ age 16
('90) 1 transplant
('01) 4 yrs CAPD CCPD
('05) Traditional HD
Donor Registry
-
Still thinking of you Angie :grouphug; :grouphug; I hope everything starts doing what it is supposed to be doing and soon so you can get home!! :cuddle;
-
Best wishes to you. Boy you are going thru a lot. Hope docs get their act together a find out what is going on so your kidney functions correctly.
Good Luck
-
Kick those doctors butts, Angie! :boxing; You're the boss! :bestwishes;
-
--------------------------------------------------------------------------------
Lastest on Angie from her web site:
Today I feel even better as my fluid weight it dropping! I am at 71kg this morning!
The swelling is really going away!
I am walking around without the walker today .. still weak due to low hemoglobin but don't know my numbers yet.
Edit: Okay .. Creatinine went down more (511) but so did the hemoglobin (62). The doc said that that isn't bad til I said I can't walk more than a block without running out of breath if lower than 66. I know from past experience with my body. So he said if it gets to 60 he will give me 2 pints of blood! Finally!!
«
-
That's encouraging news, hope it gets even better.
-
Angie I'm so glad that things seem to be improving for you. :clap;
-
Angie, we are wishing all the best for you. You have been through so much. Hope this is the light at the end of the tunnel.
-
Angie glad to hear things have improved, and you are feeling a little bit better. hope things continue to improve.
Amanda
xxoo
:cuddle;
-
Angie,
I will keep you in my prayers!
Lori/Indiana
-
Another update from Angie from her web site , go Angie :2thumbsup;
My kidney was not making any Erythropoetin (not sure of spelling but basically Epo) but today my hemoglobin went from 62 to 66 so it finally is!!! Good! I was thinking I would have to start with Epo injections subcutaneously in my belly again like when I was on PD! Now I won't have to! So no blood!
BUT ...
Remember how they were NOT on top of the fact that I had my parathyroids out which control / make (not sure which) calcium and the parathyroid hormone in the body? Well with the Prednisone being at such high doses and my kidney peeing out Calcium, it dropped dangerously low. Today I started to have bone pain, joint pain in my knees and back and hips, and my hands were cramping up pretty bad with any movement at all. The Doc I had today was one I didn't see before. He actually listened to me and came back to me with an answer. He asked if I ever had my parathyroids out (duh yes!) and said he will have to give me more pills and put me on IV Calcium. I am hooked to that as we speak. I was feeling so ill I rested most of the morning. I am feeling better now and am once again able to type to you people again!!
My creatinine came down even more: 468
But they didn't tell me what my potassium was. I demanded to know my blood work and this time after 5 hrs of asking got a print out where I discovered my potassium is 5.0! They should TELL me these things!! Shouldn't they??
Other numbers on sheet:
Chemistry:
Sodium: 135
Potassium: 5.0
Chloride: 96 (low)
Bicarbonate: 27
Anion Gap (what is that??): 12.0
Urea: 37.0 (high)
Creatinine: 468 (high)
Glucose, Fasting: 5.1 (fasting? When did I fast??)
Hematology:
LKC: 4.3
ERC: 2.13 (low)
Hemoglobin: 66 (low)
HCT: 0.19 (low)
MCV: 91.4
RDW: 15.0
Thrombocytes: 324
Lymphocyte: 0.1 (low)
Monocyte: 0.2
Eosiniphil: 0.0
Basophil: 0.0
Also the MMF (CellCept) is causing dehydration in me because it is causing me bowel problems.
-
I hope you get better soon. I would have hoped that the doctors noticed in your chart about your parathyroid. What's the point of seing a doctor if they are not going to pay attention to your medical history. I guess we all have to deal withidiot medical staff at some point in our lives. Don't know if there is a difference between hemo and pd or just the way facilities do things, but my dialysis center gave me epo shots in the arm and not the stomach thank god! Sorry to hear your going thru so much pain, but hope you get better soon and out of there.
-
I hope you get better soon. I would have hoped that the doctors noticed in your chart about your parathyroid. What's the point of seing a doctor if they are not going to pay attention to your medical history. I guess we all have to deal withidiot medical staff at some point in our lives. Don't know if there is a difference between hemo and pd or just the way facilities do things, but my dialysis center gave me epo shots in the arm and not the stomach thank god! Sorry to hear your going thru so much pain, but hope you get better soon and out of there.
I don't know if it's the same for epo, but for diabetics, the best place to give insulin is in the stomach. It's absorbed faster and ends up working faster that way.
-
I hope you get better soon. I would have hoped that the doctors noticed in your chart about your parathyroid. What's the point of seeing a doctor if they are not going to pay attention to your medical history. I guess we all have to deal withidiot medical staff at some point in our lives. Don't know if there is a difference between hemo and pd or just the way facilities do things, but my dialysis center gave me epo shots in the arm and not the stomach thank god! Sorry to hear your going thru so much pain, but hope you get better soon and out of there.
I don't know if it's the same for epo, but for diabetics, the best place to give insulin is in the stomach. It's absorbed faster and ends up working faster that way.
Yes I was told that about insulin. I refused to give shots in my stomach though until I switched to the pump. Then I had too, but luckily Medtronic had a inserter device like a lancet device. I just don't like my stomach area being touch/poked at. Doctors know I am squeamish if they need to feel for my kidney or pancreas. With that said, I was never told that about epo. I guess it depends on which dialysis center you go to.
-
I was told that about epo also, in 2 different states.. when I lived in Vegas and here in Iowa... so I have always done my epo in my tummy.. it's less painful there too, to me anyways.
-
Yeah, I used to be squeamish about it too until my thighs became scarred an dtough after years of giving myself insulin shots there. It got to the point where it would take forever for my insulin to kick in. I didn't have choice but to switch locations, and I sure wasn't about to give myself a shot in the butt! Shortly after I started the shots in my stomach, I went on the pump, which made it a very easy transition!
-
and I sure wasn't about to give myself a shot in the butt!
:lol;
-
Hang in there Angie, after all this it just HAS to get better. Dagnabbit!!! :grouphug;
-
WOW :yahoo; WOW :yahoo; WOW :yahoo; !!! Miss a few days around here and all hell breaks loose!! Angie I have just read your story from the start, and first off congratulations!!
Second you will be in my prayers for a speedy recovery. Take care!
Kim :canadaflag;
-
Oh damn things seem to be going down hill again for Angie. Here's the latest:
Creatinine has been steadily going up the last 3 days. My hemoglobin is dropping again. My magnesium is too low so the nurse brought me 2 packets of peanutbutter to eat (What? No bread? Sheesh! lol) and they are saying they want me to do another dialysis tomorrow as the kidney is only removing mainly fluid and not the toxins like it should. They said the biopsy revealed no rejection but did reveal that there is damage to the kidney. Or was it the ultrasound that revealed that last part? I am not sure but they did both the last few days. Still waiting for all results. I am so weak today. After my shower I had to have a nap .. and yet they want me out of here to free up my room for a new patient? I live alone and in the last apartment in a very long hall way so I am worried about how I will manage!
I am a little worried. Please keep me in your prayers!
- Angie
-
Hope everything will level out in time Angie.
-
:grouphug; I pray things improve.
-
Oh Angie. You have my prayers. :grouphug;
-
Sorry to hear things are going so ruff for you Angie. I hope that you do get better. Very odd that they would want to get you out sooner to make room for another person. How about fixing you first and not shove you out the door. I hope you have some sort of support to help you manage once you get out, either friends or family.
Take Care and Get Well
-
Thinking of you Angie and hoping things improve quickly for you :2thumbsup;
-
Sorry things are bad for you Angie, hoping they make a change for the better
-
So sorry Angie, I hope things look up soon. :grouphug;
-
:grouphug;
-
From Angie's site as of this morning:
I got good news .. and BAD news ...
which should I give first?
Well, let's give the BAD news first:
My kidney is not working as in not eliminating toxins from the blood so they tell me I will have to continue dialysis but now just twice a week ... maybe once a week but to start .. when I get home I will go twice a week. I am having dialysis for sure today at noon (when my mom is supposed to call and lunch comes and I take pills .. but I won't be in my room .. damn it ..)
They say what I have is called ATN (Didn't get written down what that stands for) or also called "Sleepy Kidney Syndrome"
It has been 3 weeks as of 2 days from now (Sunday) yet even though I pee a lot .. all I am doing is eliminating fluid. I have to give myself Epo / Eprex, and I have to be on a low potassium diet now..
Now for the good news: I am discharged as soon as I go to dialysis today so I must pack up my room. So this is short. Sorry no lab results as they don't have it printed out yet.
All I know is the creatinine went up even more (in the 500's now) and that the blood transfusion finally got my hemoglobin up (90) so I feel more energetic but still tired simply because I didn't sleep well. For some reason after getting the blood (the 2nd unit is when I noticed it) I was itchy for over 24 hrs. I feel better now but want to fit in this post, check email, send my mom a message incase I miss her call (I can't call out .. only receive calls) and message my dad so he is in the loop and also call the lady I will be staying in London with since my mom doesn't want to come get me today just to drive me back to London for clinic visit on Monday again. So this means I will NOT have net access for the WHOLE weekend .. so this is the last post til I am back home!
Hope you all are doing well! Thx Cosmic Kelly for calling me (if I didn't already mention it, I have been rather tired lately and forgetful).
Okay, I am pressed for time! Thx for your well wishes and prayers! Ttyl! Take care!
** So as of noon my phone in my room at the hospital will no longer be me answering but a new patient. **
-
Not sure what to say. That's good and bad news.
Just hope you feel better soon and that the kidney wakes up.
-
Hey Angie, Hope everything improves soon. I also had a sleepy kidney and it finally woke up! your one will too... it just needs time to recover.
Wishing you all the best.
Amanda
xxoo
-
Oh damn things seem to be going down hill again for Angie. Here's the latest:
Creatinine has been steadily going up the last 3 days. My hemoglobin is dropping again. My magnesium is too low so the nurse brought me 2 packets of peanutbutter to eat (What? No bread? Sheesh! lol) and they are saying they want me to do another dialysis tomorrow as the kidney is only removing mainly fluid and not the toxins like it should. They said the biopsy revealed no rejection but did reveal that there is damage to the kidney. Or was it the ultrasound that revealed that last part? I am not sure but they did both the last few days. Still waiting for all results. I am so weak today. After my shower I had to have a nap .. and yet they want me out of here to free up my room for a new patient? I live alone and in the last apartment in a very long hall way so I am worried about how I will manage!
I am a little worried. Please keep me in your prayers!
- Angie
Sounds like you are going home, but I still wanted to let you know of a form they have in hospitals called 'Safe Discharge.' My aunt, who is a nurse, told us about it when they wanted to send my dad home and there was NO WAY we could have cared for him. I'm not sure of all the details of it, but it could be something to look into. Hope you get feeling better soon!
www.worcestershirehealth.nhs.uk/RBPCT_Library/lesleyway/Discharge.doc
Kim :grouphug;
-
When they sent me home after my transplant, I was assigned a home health care nurse. It amazes me still how each center works differently.
Best of Health to You Angie!
-
Angie, all we can do is hope and pray for that sleeping kidney to wake up. :grouphug;
-
When they sent me home after my transplant, I was assigned a home health care nurse. It amazes me still how each center works differently.
Best of Health to You Angie!
When Jenna came home on day 3 after the transplant - I was her nurse! I almost felt like what it was like when she was a baby and I would sneak into her room to watch her breathe!
-
I was in the hospital for a week and a half, then givin the option of staying in the rehabilitation unit or going home and having a home health nurse come check on me and giive IV treatments. Heard to many bad stories of Rehab unit, so I went home. That was the worst ride of my life, dad had a sports car and could feel every little bumb downtown Chicago and then on the highway. Thank goodness they sent me home with a small pillow for my stomach. I guess my tx center has some good qualities after all :lol;
-
First transplant I came home on day 4, needed no help with anything, and was up and about on my own, I kinda took care of my mom, she was my donor, she was worse off.
This transplant I came home on day 8, didn't really need any help again, but I got some with my kids, so that is great. :)
-
Sometimes after being in the hospital I don't feel ready to go home but when I get there I feel better. I don't know about the rest of you but my doctor usually asks if I have help at home otherwise he would keep me another day or two. I've never questioned it because by the time the question comes up I'm so darn ready to get the heck out of the hospital anyway.
I don't blame her for being nervous about it though because the healthcare system stinks and what works for one person doesn't always work for the next person. Angie needs to speak up if she is not ready to go home, if they send her anyway and something happens I would scream malpractice so loud the Prime Minister would hear me.
I'm sure in Angies case Sandman would fly up there to take care of the love of his life, so no worries.
-
It's a bit late, But Congratulations Angie, here is to a new kidney! :clap;
-
Latest news form Angie's website:
OCT. 25:
I have insane itchiness all over that even Benedryl is not helping. I wonder if any other kidney transplant patients ever get this. It is the not the same phosphate itchiness .. this feels like a million hot pricklies .. and gets worse if I rest / sleep ..
Went to clinic visit in London and they said my creatinine went down a tiny bit. That's better than going up. But my hemoglobin went down a bit too.
The doc finally lowered my lasix as he realizes I am getting dehydrated.
OCT. 26:
I am starting to worry about my kidney as I have been throwing up the last 2 days and also was back on Tuesday. 3 times in one week ... makes me worry I might be rejecting but I won't know til Monday.
Also I keep sleeping in and taking my pills late as my sleep was thrown off my the itchiness. I find the benedryl keeps the itchiness away ONLY if I take it BEFORE the itchiness starts .. or else it is useless no matter how much I take.
-
Hmm, not sure about itchyness, but I remember one IV medication I was given after my release would cause itchyness unless benadryl was taken before treatments.
I am sure, or hope so that Angie told her doctor what has been happening, especially with vomitting. Seems she may need to go back into the hospital to get things under control. Hopefully the kidney is not failing.
Good Luck Angie
-
I don't know if you are a believer or not, but I just said a prayer for you Angie! Pray you see this turn around for the better, may it just be a med problem and not rejection. WAKE UP NEW KIDNEY!!!!!!!!! There, did that work? :)
-
Hope for the best.
-
I have been out of the country since Oct 13 and I would like to thank everyone for keeping this post up to-date. Angie is only a 3-4 hour drive away from me ( thats close when you think about where we all live, and her hospital was only 1.5 hours) . For that reason I started the post and appreciate that others kept it going.
-
The lastest news from Angie's website:
Oct 31:
Dr. Jevnikar today sounded like he doesn't have much hope for this kidney. I will have dialysis 3pm today according to the nurse and on Monday back at home according to the doc.
There is so much scar tissue on the kidney that will never heal.
Please pray for me everyone. I am scared. I also mentioned wanting to visit my fiance's family for Christmas in PA and they seem to think that is EXTREMELY unrealistic in my case and that I will definately still be on dialysis at that time...
The surgeon Dr. Yves CauMartin is very caring and interested in my case as he did the surgery. Dr. Jevnikar said I will need dialysis still for sure. He said I can do it at home Next Monday and then come to London ON again on Tuesday for an out patient Biopsy where I will have to lay in the bed for 6 hrs after wards. I might have to take a cab that day as I don't know if either parent can take me that day and I don't think they would want me to drive myself that day.
Then the nurse said I am also having dialysis today at 3pm. I always hear different things from everyone.
..................
Nov 1:
The Neph just said I can go home today. But he verified that I will have dialysis not once a week, not twice a week, but THREE times a week for 3 1/2 hrs exactly like I was before! The ONLY difference is now they don't take me down to the dry weight of 63.5kg but they don't remove any fluid, not even the 400ml saline they use for run back of blood back to my arm and they do blood work before every dialysis to check creatinine and potassium.
So now I am going to message my dad since I can't call out and I will tell him to go ahead and dry the 3 1/2 hrs up to get me and take me home. Then I have another dialysis this Friday back in my city and then again on Monday and then on tuesday I have to be back in London for 8am's biopsy as an outpatient and be in bed for 6 hrs and then go home.
Today my stomach is bothering me but I don't know why. I think it is my bowels. Who knows ..
My BP came down to normal today. Seems it was only on the high side because I needed dialysis (toxins, not edema).
So the kidney is not working. The Neph Dr. Habhab said that even though the creatinine is lower today that it is only because of dialysis.
-
Damn, I hope this is only temporary for Angie. I really do feel that it is terrible news. If anyone stays in contact with her please give her my well wishes. Lets all hope and pray for better news soon.
-
I will be keeping you in my thoughts Angie... this is a sucky thing to happen and especially around your birthday! :grouphug; :cuddle;
-
So sorry Angie :grouphug;
Thinkin of ya
xxx ooo
-
That SUCKS Angie. Sending {{{{HUGS}}}} to you. :grouphug;
-
It does suck. I hope they can get more function for her, but for now she's back on dialysis. Here's her post from the living donor website:
I am not doing so well .. the new kidney is not working hardly at all .. just making pee but not clearing really any toxins. I have to go to dialysis in 3 hrs. And then again on Monday. They Neph today said he thinks I will always need dialysis .. and that I won't be able to visit my fiance's family for Christmas this year after all ..
So much for my life no longer being on hold and me being able to finally work toward marriage ..
I am a little sad today. The kidney is not only sleepy but quite scarred and the Neph said that scarring doesn't go away. He also said I will have to have yet ANOTHER biopsy (4th one in a month) and that if I do start rejecting that he doesn't think my kidney could be saved as it is very weak or something like that. They tell me very little.
The surgeon who did the surgery is very nice and concerned and feels close to the situation. He is a couple years younger than me and I get the impression he feels very badly that I am having such a hard time.
everyone goes into surgery not knowing how the outcome will go. It can always be good or bad. Can never been assumed life will be like healthy people. ... but I was really really hoping! My first transplant didn't go like this .. that is for sure ..
-
I wish you the best Angie and I with the doctor would tell you more. No matter were in the world we are, there seems to be doctors who do not want to tell patients anything fully.
-
Man thats rough :thumbdown;
-
:cuddle; :cuddle; :cuddle; Angie, I hope that kidney decides to get on the ball soon! You're in my thoughts and prayers girl!
-
Angie
you are constantly in my thoughts , all the best to you
Kim
-
Just curious how Angie is doing. Has anyone got an update?
-
Just curious how Angie is doing. Has anyone got an update?
For up to date information she hangs on a couple of other sites. You can run over to www.angieskidney.com or http://www.kidney-friends.net/
-
From Angie's site:
November 12
Anyway, not in a good mood right now. Just got home from dialysis and I am just fed up. First of all, as you all know, I pee now. But since I hadn't peed in 4 years my bladder is shrunken so I don't hold as much as a person who has peed all along. I sit in the dialysis chair for 3 1/2 hrs and when I had to pee they don't give you a bed pan as it is a self care satellite unit. They disconnect the lines, tape the needles to your arm so they don't flop all over, and let you walk to the washroom. Since they are not supposed to (not that they don't always .. sometimes they want to if I weight more than 64kg even though I pee fully) pull fluid off my BP is always fine. But on Friday and again today I had the same nurse, who is nice but not the best at time management. Both times she wanted me to hold it for the last hour promising to disconnect me early but both times didn't and today my bladder hurt so bad. I don't feel comfortable with this since the reason I lost my original kidneys were due to reflux and bladder infections. The thing is I even told this nurse that she better come by and check on me in 20 min to see if I can't hold it anymore if she expect me to hold it. She never came back til I was done an hour later. I was not happy. She ended up taping my arm anyway so I could run to the washroom because if she pulled the needles I would have to hold my arm first before going. So I don't see why she would have me hold it. It is not like it takes much extra work to disconnect me from the machine. I don't need any extra run back / rince back! I told her next time I will want to be let off to go to the washroom when I ask. She said, "but then you will come off early!" I looked at her and said no I would be put back on! Why would I be taken completely off? That doesn't make any sense.
I really wish I had not accepted this kidney ... it was better before when I didn't pee .. I mean .. now I got the worst of both worlds ... this sucks and is really getting me down! Then the nurse tries to tell me how once she had to hold her pee for an ultra sound .. That's nice .. once in her life .. mean while I have every dialysis from Friday on to look forward to this??
I am sorry but I am not happy right now. Actually, I am pretty pissed since things are just getting me down more and more and I seem to have less and less patience for anything anymore ...
November 14
Here is some info on ATN (Acute tubular necrosis):
Quote:
Acute tubular necrosis or (ATN) is a medical condition involving the death of tubular cells that form the tubule that transports urine to the ureters while reabsorbing 99% of the water (and highly concentrating the salts and metabolic byproducts). Tubular cells continually replace themselves and if the cause of ATN is removed then recovery is likely. ATN presents with acute renal failure to the point that the two concepts are used interchangeably.
It may be classified as either toxic or ischemic. Toxic ATN occurs when the tubular cells are exposed to a toxic substance (nephrotoxic ATN). Ischemic ATN occurs when the tubular cells do not get enough oxygen, a condition they are highly senistive to due to their very high metabolism.
Ischemic ATN can be caused when the kidneys are not sufficiently perfused for a long period of time (i.e. renal artery stenosis) or during shock. Hypoperfusion can also be caused by embolism of the renal arteries. Ischemic ATN specifically causes skip lesions through the tubules.
Mine is Ischemic ATN because my kidney lacked blood and oxygen from the get go as my BP was only 76/36 and they just told me the last time I was in London that it also lacked the oxygen because it lacked the blood at that time.
Hopefully it will recover but it has been 6 weeks and they were telling me that if it doesn't by 6 weeks ............
Quote:
A cadaver kidney transplant will occasionally perform as a "sleepy" kidney, a condition called acute tubular necrosis (ATN). This means that the kidney is temporarily slow in functioning because of being stored. You may need dialysis a few times, which will not harm the kidney. The "sleepy" kidney usually starts working in two to four weeks.
-
So sorry Angie... I hope it will start waking up and doing it's job... until then... I am sorry for your frustrations and being on dialysis. :grouphug; :grouphug;
-
New update.Hope you get good news Angie:
Nov 15th - Nephrologist in London said no dialysis for Friday and come back Monday. This way they can see if the kidney is finally functioning more / waking up. Hopefully those tubules have recovered ... My blood pressure has been high enough to pump plenty of blood through the kidney for the past few weeks now. Can only keep fingers crossed. Have no ride on Monday so I am driving myself. Disability won't pay for a cab that far and only will pay for a train if I pay up front .. which I can't afford right now. Maybe next month. So I am sooooo glad I got my car in the summer. Now that is paying off. Will update more on Monday once I get back from London. Keep your fingers crossed!
-
Good luck Angie!
-
Fingers and Toes Crossed !
-
Good luck angie. I hope that kidney wakes up soon.
Amanda
xxoo
:cuddle;
-
:cuddle; Good luck Angie
-
Good luck Angie, fingers AND toes crossed for you!!!!
-
:cuddle; Good luck
-
Good luck to you Angie :thumbup;
-
:2thumbsup;
Nov 19:
From Angie's website:
Finally!!!
GOOD NEWS!!
Today Dr. Hodsman said that creatinine only went up a little (from 179 to 202 without any dialysis! The last time I had dialysis was last Wednesday. So it looks like the KIDNEY IS FINALLY WAKING UP!!! So I can hold off on dialysis and see the transplant hospital NEXT Monday!!
-
Thanks Karol.
Great News Angie.. hope that kidney keeps up its good work. :cuddle;
-
WOOHOO :yahoo;
-
Thats great news, thanks Karol :thumbup;
-
Good for you Angie!! :thumbup;
-
:bandance; :yahoo;
-
Wonderful news! Praise the Lord! :2thumbsup;
-
That IS wonderful news!!!! :clap; :clap; :2thumbsup; :yahoo;
-
:yahoo; So happy for you Angie!
-
Yeah!!! Angie I'm thrilled! :bandance; :bandance; :bandance; :bandance;
-
OH WOW this is awesome....
I am Canadian, but on this Thanksgiving I am thankful for Angie's kidney waking up!!!
Kim
-
:clap; :yahoo;
SO happy for you Angie!!! :cuddle;
YAY KIDNEY!!!
-
From Angie's site:
Dec 3, 2007
Just got back now .. at 6:55pm .. man what a long day. But good news! The kidney is removing Creatinine and Potassium and even some Phosphate too! My Potassium was on the low side just below normal so I had a banana today and my creatinine is I think it was 178? That is down from 202 I think it was last time. Anyway, I have a copy of my bloodwork which I will post in a bit. Just got home and gotta take my Epo injection. My hemoglobin dropped a bit more so I know I still have to do those. But everything else is great! And the new BP meds I am on are working. My BP is perfect now.
Overall, a good day. But now I am exhausted and just want to rest. Can't wait til I have more energy.
Oh also I talked the Neph into letting me come back in 2 weeks instead of every week since I am now also being seen locally!
-
Great news.
-
Very happy for Angie :clap;
-
:bandance; :bandance; :bandance;
-
OMG, what a relief! Such good news -- congratulations. :2thumbsup;
-
:yahoo; Glad that sleepy kidney has decided to behave. Best Wishes.
-
That is so wonderful!!!!!!! :yahoo; :yahoo; This is just wonderful Christmas news to have!!! :santahat;
-
Sounds great :thumbup;
-
Glad to hear good neww.
-
:bandance; :bandance; :bandance;
-
Great News, glad to hear things are finally looking up. :yahoo; :yahoo; :yahoo; :yahoo;
-
Update: Angie's creatinine has gone down more, she's still having a little trouble with low hemoglobin.
-
Angie Looks Great !
Good on her ! :clap; :cuddle;
-
Wow Angie looks marrrrrvelous!!! :clap; What a difference one little bean can make. ;D
Go Angie Go :bandance; :bandance; :bandance;
-
Amazing!
Angie you look great! :)
-
Its good things are looking up :thumbup;
-
It's been awhile since I've looked at this thread, I'm glad things are looking up for Angie.