I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Chris on October 23, 2007, 09:28:16 AM
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My creatinine has been 1.8 for the last three weeks even after pushing fluids. No sickness, new meds. The P.A. finally called back this morning and now they are concerned, so she is checking with my transplant nephrologist to see if I can get squeezed in. Hope it's not today because I am not prepared to go downtown to Chicago. I know I need to get checked out, but also worried about my classes at college. I hate to have to be admitted to the hospital and have to drop out of my classes especially when I am maintaining A's in all my classes. So the question here is, have you ever had elevated creatinine levels for a few weeks and what did the doctors do? I'm not sure what the rest of my lab results from yesterday were, but apparently the creatinine is 1.8 and that's what the doctor is concerned about.
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Hi Chris,
Here's some info about Transplant Rejection and Its Treatment http://www.kidneyatlas.org/book5/adk5-09.pdf - it' may different than what your center's protocol is, but it will give you an idea of what questions to ask.
You've had your transplants for almost 7 years? How has your creatinine been over the years?
From what I have read, there's a lot they can do to rescue organs from rejection nowadays, but quick diagnosis and treatment are essential.
I hope you get some answers soon and you can get back to focusing on school.
:cuddle;
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My creatinine average I would say is 1.4, but it has never been below 1.1 since I have been keeping records from my local labs. No idea what it was after my surgery. Pretty sure I was told, but without it being on paper, I forget. Week not starting of good this and my low vision glasses breaking before class and now I can't leave to get them fixed because I'm stuck in limbo. Even tho the doc has my cell phone, they do not call it. Instead they leave a message on the machine at home. I need some comedy to relax me.. Now I'm off to check out your link, Thanks.
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With a transplanted kidney, it is typical that there will be a slow, steady rise in the creatinine level until the patient finally reaches a stage where return to dialysis or re-transplantation is necessary -- but this occurs independently of any rejection process. This decline in function is called 'chronic allograft nephropathy,' and its cause and cure are unknown. Essentially it is just an unnaturally rapid aging of the transplanted kidney, perhaps from 1) the trauma of the donor's death, if it was taken from a cadaver; 2) the trauma of the transplant surgery; 3) the toxic effects of immunosuppressive drugs on the kidney. There are presently some developing theories that chronic allograft nephropathy can be slowed by 1) restricting your protein intake; 2) keeping your blood pressure low; 3) reducing your blood lipid levels.
Acute rejection, in which the transplant patient's creatinine suddenly spikes to a very much higher level than it has been before, can happen at any time, but usually only in the first year or so after the transplant.
There can also be sudden and extreme increases of creatinine when some structural decline occurs in the graft, such as an artery coming detached, but you would certainly know about this from other symptoms.
So if your creatinine has gradually edged up to 1.8 after a usual level of 1.4, that sounds more like chronic allograft nephropathy than acute rejection or structural collapse.
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Good Luck Chris, I hope you find answers soon.
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Usually when monitoring your creatnine, if it's a gradual increase (like yours sounds to be) they will just watch it... you said your creatnine has been running 1.4 over the years, and it is now 1.8, that's only a 0.4 increase which is not much of a huge jump considering you have had the transplant 7 years now and it's staying 1.8 over the last 3 weeks. If they are concerned, I would guess they would do more blood work, and maybe an ultrasound, just to see how your transplant is looking. If everything looks good, they should probably feel content with it.
Hopefully all goes well, I will be thinking about you and hope you get your answers quickly. :grouphug;
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Well as typical with this center, they didn't call back and you can't get to their after hour office. It's just odd to me that out of the blue that the transplant nephrologist office would be calling over my results asking a bunch of questions, then leave me hanging. To bad local doctors can't take care of transplants, they are much nicer and return calls like they say they will. Don't tell me your gonna call back and you don't, that just irritates the _____________ out of me. At 1.8, there had to be something that is concerning them in order to call eary in the morning and wake my ass up and try to figure what is going on. If I go get another blood test, I better have a free pass for November labs. :sarcasm; I'll just have to pick up my results after class Wednesday to se what bug crawled up their ass. At least I won't be tied up at home tomorrow waiting for a phone call, I have things to do, places to go, people to meet.
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So sorry they didn't call back, very rude of them. I hope they will at least call you back and leave a msg to say what the were concerned about and/or going to do about the concern. :cuddle;
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Called doc back between classes. Excuse for not calling back, she forgot.
Anyway, I have an ultrasound, BK Virus, and Kidney Function scheduled for this Friday. This time I remembered to tell them about the infrequent pain I have had.
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Hoping all your tests are ok Chris :2thumbsup;
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Well I went to my transplant hospital to have my test done Friday. First up was ultrasound, got in they started to do their thing and then asked if I had anything to drink. I said no, I was told not to and on the hospital website for this protocol was to have an empty bladder. He said I was suppose to have a full bladder. So the guy doing this test proceeded, and when he was pressing on my left side, that hurt like a (use your own words here!). Moved around to the right side, no problem over there. He finished and went back to check with his supervisor. He comes back to tell me to come back after I had some fluids. SOB, you could have told me that when I set the appointment up, I could have had 48 oz of decaf coffee in me already! So now I'm stuck between a rock and a hard place. I have to go down stairs for blood labs and urine test for the BK virus. If I have to urinate there, I'm not going to hold it to go upstairs. Come on, it's nature, once you start, no need to stop going. So before I wen to get labs, I went to the cafeteria to get some decaf coffee, but then I smelled bacon and sausage, had to get some, well they had bisquits, had to get one of those to. Well crap, forgot I was fasting after I ate the stuff. Well after waiting for an hour, I go et my labs done. Blood is drawn and I get ready to go do the urine specimen. I get lighthead, so they take bp and get some juice. They take my bp and my arm starts bleeding from where the blood is drawn. Crap this day is not going good. I wanted to go, but they wouldn't let me. I've walked around many times with low blood pressure, but they relied on what the meter said, so they called for help. Crap this is not going well, I don't need all these people to get an OK to move. SO I tell them I have to use the washroom. They walk me over to the facilities . I brought the cup with, did the specimen and walked over to put it in their tray without a problem. Meanwhile a nurse rushed don to check on me just as I was walking back into the room. She asked how I felt and I said I feel fine, can I go now, I got places to go, people to see. She had the look in her face "they rushed me down here for this!" Well she let's me go, so off I went to get more fluids. Go back upstairs to ultrasound and I get the same person I had before. Crap I thought, why couldn't I get someone else who doesn't press so hard. He does his scan again and again the pain returns to the left side and he's telling me to relax! Get your butt up here and let me press down on something that is sore I'm thinking. Bad enough I'm in a gown with no pants, and no shirt freezing my butt off and he wants me to lie still too. Just get your test done Mr. torture boy! Finally that test is over, so I will/should hear something from my doc next week. :rant; :rant;
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Sorry you have to go through all of this. Now you're in Limbo until your Doctor calls. I also had an ultra sound this week that hurt like H*LL. I guess we are in the same boat waiting until next week to find out what is going on. :cuddle;
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Geeeze, talk about putting you through the ringer huh? Sorry you had such a bad day, hopefully all the tests come back fine and you wont have to do that again ;) Please let us know how it went. :cuddle;
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Chris..I know we discussed this in chat last night and I hope your labs look better when all of the results are back. What you are going through now is what I fear most in life. From reading the experiences of others I know that day will come whether sooner or later. Please keep us up to date on the lab results and what your nephs are saying. Best of luck to you.
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I'll call Monday to have a copy of my blood test results sent to me and again on Wednesday about the Ultrasound, but probably have to wait till Thursday when the docs is in for an answer since P.A.'s are pretty much worthless for answers.
I need to use Spell Check before I make an entry, not after posting it......note to self, use Spell Check!, had to correct a few mistakes on my last post, that was bad.
Thanks for the replies, I'll let you know when I know.
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Well it was another frustrating day. First I woke up with pain that didn't go away. Called my nephrologist at my transplant hospital and of course I get the dimwit PA who can't tell me jack squat about my lab results. All she could tell me was what the doctor wrote down. I have leukocytes in the urine along with other odd levels, creatinine is still at 1.8 and my ultrasound was OK. However the doctor feels that I need to be treated by the transplant staff due to whatever these concerns are about the test results. Anyway, back to the pain,she asked a round of questions about it and said I really need to see the transplant staff about it. So she said she would call them to try to get me in sooner than Nov 12. She calls back and tells me transplant staff can't squeeze me in, their to busy. To busy, W.T.F.F. excuse is that! What if someone is going into rejection? You tell them sorry were busy, you can't come in for another month? Great going Einstein! Someones gonna be getting coal in their Christmas stocking! Great care and confidence you give me all mighty transplant staff of your crap ass wisdom. So now the PA was gonna have me come in to Chicago to see probably dimwit #2 to run some test to give to the doctor, then she said I should call and go to my local doctor explaining that this doctor wants these test done. Well I called them and they are closed today. So dimwit #1 suggest instead of coming to Chicago that she fax over an order of test to my local hospital where I have my standing order of labs done. She proceeded to tell me what symptoms to be aware of, like chills, well hello, you've seen me before, when am I not cold! and temperature. If you get those symptoms, go to the ER. Great plan there, meet dimwits 3 thru 7 over there who have no clue about transplants. Anyway, I went and had more blood taken and another urinalysis and culture done. I have no faith in them to find out about what is the cause of this odd pain. I forgot to ask how long does it take to process a urine culture, but hopefully I can pick up results on Friday once the furnace is checked if I don't have to wait all day! :rant;
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Chris, I don't have any words of wisdom, but I wanted you to know that I care. You have been put through too much lately. Putting up with incompetent people shouldn't be something you have to deal with. I am sorry for how rough yours days have been this week. Take care :grouphug;
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Chris, Don't know what to say.
:(
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Wow... I guess I am greatful for my transplant staff, I call to talk to them, I get them.. not anyone else... they are fast and caring, and concerned, and always on top of their game to find out what ever my problem is. I hope you get the answers soon and a solution, and hope it is not bad.
:grouphug;
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Well I did try to switch transplant centers one, but they put me in the ER for having a blood sugar of 63. At 63, hello, I didn't eat yet because I have been stuck waiting. So after being stuck in the er for nothing but a crappy cold turkey sandwich after 4 hours, I decided not to stay with them. Also did not want to go on Prednisone either because that was their protocol, so I wasn't gonna go back for strike 3. The other 3 centers in Chicago I can not drive to nor able to afford a taxi ride from the train station, so I'm stuck with mine until they have eye transplants!.
At this point I can deal with the pain, I know it's there still and can put it out of my head until it gets worse.
Thanks for your thought's
I just can't stop fuming over this right now, it's a perpetual something, but quote is skipping my memory.
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I've been at 63 and lower more times than I can remember. Whats the big deal? You go low and you take care of it. I keep my meter, glucose pills, and a glucogen injection kit with me at all times. The glucose pills are used often, the glucogen kit has never been used. I'm surprised that they put you through all of that when hypoglycemia is so easy to self treat..
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Hi Chris,
Have you gotten any help? Any lab results?
Is your urine output pretty consistent? If you have pain and reduced urine you should be seen right away, fever or no fever.
It worries me that you say the "ultrasound hurt like hell." Something is creating pressure and pain or there's fluid or blockage or something???
I am sorry you have to wait so long for help, and transportation is also a challenge for you. Is there a friend or family member that could drive you to Chicago??
Hope you get a solution soon!
:cuddle;
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Chris, whatever you do, don't just sit at home and 'deal with the pain'! It sounds as though you have a renal infection, which could be the result of an upper urinary tract infection travelling to the new kidney, and in dealing with renal infections, time is of the essence. The faster you can stop the infection the better your chances are for a full recovery of function. Leucocytes in the urine are an invariable sign of infection, and from the pain you describe it sounds as though it has taken hold in the kidney, so you should get antibiotics for that and exclude the possibility that there is inflammation in the kidney secondary to an acute rejection.
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Hi Chris,
Have you gotten any help? Any lab results?
Is your urine output pretty consistent? If you have pain and reduced urine you should be seen right away, fever or no fever.
It worries me that you say the "ultrasound hurt like hell." Something is creating pressure and pain or there's fluid or blockage or something???
I am sorry you have to wait so long for help, and transportation is also a challenge for you. Is there a friend or family member that could drive you to Chicago??
Hope you get a solution soon!
:cuddle;
No not yet. I woke up late today andgot going late to my classes. Friday I plan is to get my results of my latest test from my local hospital and then call doctors/nurse dimwitt's in Chicago, then local doctor. I don't have a real problem getting to Chicago as long as I can get there by commuter train and then by taxi becaus I know the cost, plus trains run every 30 minutes to an hour to Chicago. Maybe I should just go to my colleges biology department and have a class experiment so I can get some results faster :lol; Get the biopsy equipment from the veterinary department, slides, microscopes, and petri dishes from microbiology, and possibly tap into the anatomy department. Then use the nursing department for a patient table, blood pressure, temp check, and other vital signs...Group Project!
As long as I'm sitting, I feel ok.
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I went to Dunkin Donuts before I went to class on Thursday to get a decaf coffee, but I think they gave me a regular coffee. I haven't been to slep yet and in about an hour my alarm will be going off. Tried lying down, but darkness and no sound was driving me nuts! Plus I'm urinating more than usual, also not good for two reasons. It's painful and caffeine is over working the kidneys, so whatever I have and this is not a good combination. In a few more hours I can go get my lab results and then call twiddle dumb and twiddle dee in Chicago. This week bites! :rant; All I have to say to transplant center is
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You said it!
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Haven't slept yet and still can't fall asleep, but finally went and got my results, which is good and bad. The good, levels have finally decreased after more than 3 weeks. The bad, I still ave pain. So I called back dimwit #1, who didn't get all of my results back yet from Friday, nor could she tell me if I had the bk virus. All she could suggest is that it could have been a urinary trac infection that is clearing up on it own and that maybe I have a hernia. For that, I need to see my GP for. I'm pretty sure it's not a hernia, but will have to wait till Monday to see GP. Ever feel like the buck is being passed around. I'm frustrated and not tired, not a good combination right not
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I'm glad you got a little good news. I hope they find the cause of your pain soon. :cuddle;
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I hope you feel better soon and you get rid of that pain!
Amanda
:cuddle;
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Well I finally went to sleep at about 4 am Saturday morning due to the news being on and slept till 1 pm. Bad part was medication schedule is off since I took my meds 3 hours late. Pain didn't magically disappear though.
Thank You for your thoughts. :thumbdown;
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Chris is still in pain and has been round and round with CT scan and doctors but no answers yet.
Today he is being admitted. Please join me in sending him some prayers and good thoughts!
Hope you're back soon and reading this Chris!! :cuddle;
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Good luck Chris, hope they get ya taken care of soon hun! :grouphug;
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Positive thoughts headed your way Chris.
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Hopefully they will have you feeling good as new soon, sending good thoughts and prayers your way my friend :cuddle;
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Thinkin of ya Chris :grouphug;
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Get well soon :grouphug;
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Good luck Chris we want to hear good stuff soon!
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wishing you the best Chris
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Should make for an interesting post when you get out of the hospital. Get out of there soon.
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Hey Chris, just wanted to let'cha know i miss harrassing you in the chat room :2thumbsup; Hope they are taking good care of you and you are no longer in any pain. Take care and get well soon, miss ya buddy :cuddle;
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Chris was transferred from his local hospital to his transplant hospital in Chicago.
He said his creatinine is okay but he is still in pain.
Today is his birthday, poor guy!
:cuddle; Hope things get better soon Chris!
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Hang in there Chris. I am so pleased you are getting this handled. Be well.
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Happy Birthday Chris! Hope all is well soon! :grouphug;
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Hang in there my friend, i'm looking forward to our chats soon :)
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Hopefully you'll be home soon, and in no pain... :grouphug;
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First,
Thank you for the well wishes and happy birthday's.
Gonna try to keep this a short story version.
I have been having pain for 5 weeks now where my transplanted kidney is located and at my natural kidney on the same side. Originally my labs were high for 3 weeks straight and then started to lower, but I still had the pain and would hurt differently when I urinated. Initially a ultrasound was done and it just showed a thickening of the bladder, so I was told it was not a transplant problem and just go see my general doc since and I quote "we're to busy to take you in." Call GP up, I get in and he wants to admit me to the hospital, but I told him I had to finish my night class and my class lab the next morning due to test coming up. So he says call me the next day and we'll get you in. Finish class and he tells me to just go to the ER. Go to the ER and they do labs and a cat scan. Both test comeback fine, but said he would admit me for pain management. I declined because they weren't gonna do any test. I go back to my GP and I see his associate, he admits me that day and orders an additional cat scan with contrast (suprising, berry flavored contrast wasn't to bad to down), x-ray, urine output samples and cultures, stool samples and the magic of morphine. He had a surgeon come in and a urologist come in to see me for an opinion. Urologist wanted to do a scope, but felt it would be better for the transplant center to do that than him. My local nephrologist couldn’t find an answer to my pain, so she get's a hold of my transplant center. On Saturday, Nov 10, I am transferred to my transplant center in Chicago. Well crickey, they didn't do jack squat except give me morphine then some pain killer pill that makes me dizzy after they reviewed all the test done, continued IV fluids and morphine, monitor my urine output and do lab work after lab work after lab work while having me on a clear liquid diet only. Heck, the idiots didn’t even take into the consideration of doing the scope up the urethra like the local urologist suggested. Finally on Monday the 12, my birthday, whoopee-fricken-dah, the I am finally given solid food for dinner. Since I could not do anything for my birthday, I improvised and ordered a brownie with whipped topping on top of it. Monday night all they could come up wit is "we feel your CellCept is to low of a dose, so we upped it and that you just have a stretched muscle." The worst part is the doctor (Dr. Reverse Einstein, head dimwit, dimwit uno numero #1) who did the pancreas portion of my transplant increased my CellCept because he felt it was to low of a dose without even seeing me or looking into my pain for himself. My CellCept has been at that level for over 2 years now without his input whatsoever before. This is the same idiot who told me I no longer needed to come to clinic unless it was really important.
What kind of BS is that, stretched muscle my ass! Did you listen to me on were my pain is and how it changes and it hasn't gone away in 5 weeks! And how did you come up with my CellCept is to low?
What a complete waste of a hospital stay, geez what a bunch of morons over there and to many yes men who do not have the balls to question the authority to come up with their own hypothesis! I think I counted about to 18 dimwits with the hospital stay at the transplant hospital, while the local hospital was willing to look at other aspects as long as they did not have to upset the transplanted kidney portion.
So much for keeping it short!
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Wow... sorry you had to waste your time and didn't find the answers you were looking for. Seems to me they were just in a hurry to get you out of there and not search for the problem... I hate doctors like that.
How is your pain now? The same? Better? Worse?
I hope you are better, and if not I hope if you need to go back they search for the problem. I'm not sure how a low CellCept level could cause pain.. I don't remember pain issues when i was on CellCept with m first transplant... hmmm.
:grouphug; :cuddle;
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Angela, my pain is the same and the only thing that made it go away was the morphine they gave me, that also made me sleep thru it. I stopped taking that on Sunday because all I did was sleep. Pain medication they gave me makes me dizzy and sleep for an hour and I haven't taken that yet either. I drove home from the train station from Chicago after having taken it 3 hours prior and it is something I do not want to do again while I go back to school. So I am dealing with it like I did before, put up with it.
CellCept has never caused abdominal pain in me even when I was on a much higher dose and never at my so called low dose. The answer to my problem is ludicrous. I have no faith in this transplant center.
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So sorry your having to go through this. I hope the pain subsides on it's own eventually.. :grouphug;
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Chris can you get a 2nd opinion? Hope your feeling better soon
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Chris can you get a 2nd opinion? Hope your feeling better soon
At this point, I don't know and doubt it at the same time. The reason I was transferred to my transplant hospital was because the local specialist did not want to try anything due to having a transplant. If I see another doctor at Northwestern, they then converse with head dimwit uno numero team of yes men/women of the transplant team for kidney and pancreas transplants. It might be different if I had just a kidney transplant though, but since I had a pancreas also, everything goes directly to the pancreas transplant team at the clinic. The transplant hospital I would like to try has two problems. One, they do not except people who already had a transplant for follow up care and two, they are the furthest and hardest to get to and not easy to get to from the commuter train to Chicago. A double Whammey!
I need someone who is not always thinking of the transplant as the cause, but something else, basically, someone who thinks outside of the box. Hard part is find who will or who do I turn too.
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Chris, sorry you aren't getting anywhere with your pain. :grouphug;
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Ugh, how absolutely frustrating :banghead; but on a lighter note, i am glad you are back my friend, missed ya :cuddle;
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Ugh, how absolutely frustrating :banghead; but on a lighter note, i am glad you are back my friend, missed ya :cuddle;
Thanks
And that reminds me of another thing that pissed me off over there. They have computers in each patient room, but patients can't use them, they're just for medical records and entries of vitals. Yet they have in the room telling were there is internet access for visitors. Well crap, how about us that are stuck to the darn floor! Bad enough your not allowed to go to Starbucks or the other coffee shop downstairs for real coffee!
Also, some jack in the box hit my vehicle in the hospital parking lot at my local hospital and took off. Now I need the bumber sanded down and repainted CRAAAAAAAP! :rant;
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JEEEEZZZ!! Sounds like you need a break!
I hope you didn't miss too much in school and you can catch up.
I am stunned that they couldn't find the cause of your pain.
If it's not kidney stones it still sounds like a urinary tract problem - there must be help available somewhere!
I am sorry Chris, that you've had to endure all this BS!
I am glad you went to get help though, because pain isn't something to ignore.
Is there a urologist that would get involved? Or have you done all that??
Best wishes! and Happy Belated Birthday!
:cuddle;
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Holy Crap Chris! That all just plain sucks. Sorry you had to spend you B-Day like that. Next year you'll have to have a double one. Hope your pain goes away, that's no fun to live with day in and day out. :cuddle;
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Firstly.... :birthday;
and secondly..... the only advise I can give is :boxing; try to make them listen! and I hope the pain is sorted soon. :grouphug;
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That's the problem, they are not listening and only seem to be focusing on if the transplant is rejecting or not and not the cause of pain no matter how much you complain and tell them all the history of it. When I do ask questions, they get flustered I would say for inputing my opinion or asking why. Probably have a stamp on my file that says "Combative Patient" in bold red letters. I know I have a muscle relaxer around somewhere that I never used from something that happened to me, so I am thinking of trying that once to se what happens. Really do not want to be taking pain meds though just to mask the problem. Besides, now I am dealing with insomnia and may need a pill for that, just hate taking more and more pills! They need to flavor these things, I would settle for the Sweet Tarts taste since they are both chalky
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... just hate taking more and more pills! They need to flavor these things, I would settle for the Sweet Tarts taste since they are both chalky
mmmmMMMMM SweetTarts :thumbup;
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How is everything going Chris?
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Nothing has changed, but not using pain meds.
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Hey Chris, Hope you had a good holiday. How is the pain? You might have more luck finding out what it is if you call the Psychic Friends Network. :rofl;
Seriously hope you are ok!
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Well achpuncture was suggested by one classmate, why not Psychic Hotline. As long as I do not have to urinate and have the pain switch sides, I'm ok.
The transplant center called me tonight doing a research project for the head dimwit there. The young girl asked me if I had a hernia at my incision site or knew what a hernia was. I told her yes, but I highly doubt your professor knows, you may want to find a new professor after my experiences with him.
She said that's all we needed to know and hung up.
Oh well, good to vent at these students who do not ask questions when they are in the room with patients along with the doctor and do not ask questions.
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Chris, you must be terribly frustrated about all of this. I know I am and my pain is nothing like yours. I am to have some more ultra sounds. My pain isn't constant. It is more annoying than anything else. 2 docs think it may be neuromuscular. I do have pain in my feet at times and I am sore in the mornings and after sitting too long in addition to the pain in my side. I hope you find some answers soon. Pain really affects your quality of life. :)
Do you really need to urinate?? :rofl; :rofl; :rofl;
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Haven't heard from you in awhile Chris. How are you?