3 mos Post Kidney TX - getting desper...

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Author Message K Member Username: Nkidneyotb Post Number: 1 Registered: 02-2010 Posted on Wednesday, February 24, 2010 - 07:13 pm:    Sorry wasn't sure where to post this. On December 3rd of 2009 a wonderful friend donated her kidney to me. I was considered a "high risk patient" because for the past 8/9 years since my previous transplant failed.. my antibodies were at 95%. Pre-2nd transplant I went thru plasmapharesis and IVIG . Following the operation I was told my kidney was "sleeping" and was released from the hospital Dec. 14th. I have a permacath and used to dialyze at home w/the nxstage machine so they were comfortable knowing if I felt I was retaining fluid or didn't feel good that I could hop on the machine at my convenience. At one point at home I was 30+lbs overloaded with fluid. My doc would tell me "It'll go away, give it time.." but it didn't and he put me on 80mg of lasix - which I seemed resistant to. Two and a half weeks later I was told to up the dosage to 160mg a day of lasix as needed. STILL no fluid relief. At this point they really didn't want me dialyzing as they felt it would just make the kidney sleepier.. so finally I was told to take another diuretic, zaroxolyn. That w/the high lasix dosage seemed to do the trick and I was finally down to my regular dry weight pre-transplant - but now the creatinine has jumped from 2.4 to 3.4. I have had 3 biopsies since Dec. 3rd and they all show that the kidney is "pristine" and my doc was "very disappointed" the creatinine keeps going up (yeah doc, how do you think I feel?) Thru out the 3 months I was constantly being told "don't worry.. the kidney will wake up, its a young kidney, you're young, it'll wake up". I have been putting out urine, but since the creatinine shot back up.. the liquid gold output has gone way down .. though I am maintaining my dry weight (few boughts of diarhhea a few times a week could be the cause of this too). I was also told all those diuretics could have been raising the creatinine.. Since 2 weeks ago I have completely stopped all diuretics. Doc ordered (another) nuclear kidney scan. I overheard the radiologist telling her student that everything looked clear and if there was a blockage of any sort I wouldn't be able to pee. (I know technically you shouldn't listen to radiologists). I was able to pee before leaving and thought I was in the clear until 30 minutes later my neph called me saying there's an abnormalcy in the scan and he thinks the road is leading towards an angiogram. I had to go back up to transplant hospital (an hour and a half away) to be examined by a surgeon to see if there was indeed a stenosis of sorts.. In conclusion, he doesn't feel 100% comfortable with me getting an angiogram done as he doesn't feel this is the problem. Relucantly my nephrologist agreed to "wait a few weeks" to see if the creatinine went down on it's own. Which leads me to today.. the creatinine is STILL steady at 3 (which is what it was last week). I am completely tired of this whole waiting game. The doc hasn't changed my prograf since early January when it was upped to 4mg twice a day. After reading some of the posts here I'm beginning to wonder if this could be a factor on the creatinine. But if so - why hasn't doc suggested we try lowering it? Also tired of hearing him say "this kidney should be working beautifully by now.." Right, ok.. it's not .. so FIX IT! And I'm tired of the guessing.."maybe the abnormalcy in the scan was a blockage.." ok.. if that's the case, why do I not have any of the blockage symptoms? (My bp is 130/70ish.. and that's WITH midodrine 3x a day). Sorry I wrote a novel! Just curious if anyones been through something similiar. Any answers or insight would be greatly appreciated. I'm just baffled at how them not changing any medications and me sitting at home will magically lower the creatinine on its own.. I mean, NOT after 3 months.. right? Swell Member Username: Swell Post Number: 56 Registered: 06-2009 Posted on Thursday, February 25, 2010 - 07:51 pm:    Hi K, My creatinine continued to go up after transplant as well. I had 2 biopsies that were negative. They considered changing me from Prograf to Rapamune as Prograf can be nephrotoxic. But instead, they lowered my Prograf level and my creatinine has started to go down. I believe it got up to 2.2, but for the last few months it's been around 1.0-1.1. I am taking 3 mg. am and 4 mg pm. I'm hoping they lower it again on my next visit to the transplant clinic. I totally understand your frustrations. Are you drinking lots of water? Staying well hydrated is so important. My creatinine will inch upward if I don't drink lots of water. When do you see your physician again? Hang in there K....I hope things improve for you quickly... Keep us posted. swell FSGS ESRD 12/08 Kidney transplant 4/09 Medical College of Georgia Augusta, Ga. Kidney donated by my wonderful husband! ChuckZ Member Username: Chuckz Post Number: 888 Registered: 05-2006 Posted on Friday, February 26, 2010 - 12:37 am:    K, Welcome to our group. Your problems are unusual because after three months, the transplant should not be "sleepy" and if the biopsies are normal, it is very baffling why your creatinine should be high. If prograf were causing your creatinine to rise that high, I would think that a good pathologist would see it in the biopsy. Besides prograf, what other drugs are you taking? Did they tell you why they raised your prograf? How is your other blood work? Anything else abnormal? Are you at a center that does a lot of transplants? If not, you might want to try to have your case referred to a center that sees many patients. Chuck Heather Forum Leader Username: Heather Post Number: 2796 Registered: 05-2003 Posted on Saturday, February 27, 2010 - 10:26 am:    Hi K. I am sorry you are having such a rough time. I hope someone here can help you and that one of the doctors will find the cause of the rise in your creatinine. You received your tx almost 10 years to the day after I donated to my dad. How is your donor doing? Would be good to hear from them and see them on here also. Welcome to the site! Heather Forum Leader - Living Organ Donation EC Illinois, USA Kidney donor to dad 12/1/99 Rush-Presbyterian-St. Lukes, Chicago DONATE LIFE kristi Member Username: Kristi Post Number: 57 Registered: 02-2010 Posted on Sunday, February 28, 2010 - 01:56 am:    K, Where did you get your transplant? Was it a living donor donation? My mom gave me one of her kidneys and I am almost 3 months post transplant. My creatnine went up and my WBC went low making me have a compromised immune system. My creatnine at transplant was a 1.0 and after 2.5 monts it shot up to 1.8 and they freaked out and admitted me into the transplant hospital and did a biopsy. From my understanding, Prograf is a nephrotoxin and can cause the creatnine to rise. I am also on a lot of Prograf, it varies between 5 to 6 mg twice a day. My doctors did tell me that stress will cause your bp to go up and harm the kidney by making the creatnine go up. I have found going to the gym and riding my bike has not only helped with me gaining water weight and for my mental state and stress. My prayers are with you and please keep us all posted. HUGS, Kristi Robin Forum Leader Username: Mamaru Post Number: 605 Registered: 06-2008 Posted on Sunday, February 28, 2010 - 03:31 pm:    Hi K, I'll also welcome you with a "hello" and I do understand why you're as concerned as you are. You know how your first transplanted kidney was after the transplant. This is a different kidney and I don't know other then the high level of antibodies if this was similar and was it a live donor or cadaveric both times. You went through the treatment for high antibodies and I don't know if perhaps that has something to do with the kidney "sleeping" so long after transplantation. They've told you that you don't show any structural abnormalities, the biopsy doesn;t show rejection and they don't feel the prograf is toxic. I'm not sure about standard protocol for high antibodies with transplants but 9 MG 2x a day does sound high. Could this cause your creatinine to be high and the kidney to be sluggish? With the diuretics they gave you, I would think and only speak comparing you to MIke when he took Lasix, you sould've peed like a "race horse" and I'm wondering why your kidney didn't take the fluid out. Mike's sister had her kidney tx over 3 years ago and when they initially did the tx she told me it was "sleeping" and did need to have one round of dialysis. This was not unusual and can happen. Her kidney function has been wonderful. They didn't know if the kidney took time to "wake up" was due to the fact that it was delayed coming across the country due to weather and a small portion froze and died. It was on ice for a longer time then they wanted. They said that 20% of the kidney dies but went ahead with the tx because it was a great match and from a healthy young donor. As I said, her kidney functions are better then some people with their native kidneys! As chuck and others will stress, you shouldn't be overly concerned of the level of creatinine the first few months. Concerned yet and rightfully so.It can change and fluctuate before they find the correct combo of meds. The least amount to keep the level within normal for antirejection meds. This varies too and everyone is different. Mike has a very bad time post tx and a lot was due to surgery to remove a large cystic kidney. His creatinine fluctuated when he couldn't drink enough do to bowel obstructions and being on an NG tube. You know, hydration is so important but I don't think that's causing all of your problem. You know there's something not right or at least you feel that way. The tests that were done to rule out structural abnormalities and rejection haven't shown anything. You're right to not let this fall by the wayside and ask questions, demand answers and by all means go for a second opinion. Mike would not be where he was if I didn't make the MD's do things they didn't feel he needed. I'm still like that and Mike's learned to use HIS mouth too. Be you're own advocate because the is YOUR LIFE and you've been given a BLESSING of a KIDNEY! I hope you get answers and GOd Bless you. I'll be saying some extra special prayers for you. Oh one last thing, why did you need a kidney? DIabetic, PKD etc? Everyone means well and only want the best for you but we're not MD's and only speak from our own experiences, You deserve to get answers. Before I would undergo more tests that might include dyes that can be harmful to your kidney, speak up and see if there are any other things that can be done first. If it's a must, there are meds to be given to flush it out and you have to stay hydrated. You need to start to enjoy living and move on with your life. I hope this helps and doesn't make you more upset, Robin Forum Leader - Living Organ Donation Husband had a Bone Marrow Transplant 09/08/1993. Diagnosed with CML that went into a blast crisis and became ALL. Donated a kidney to husband 6/26/2008 Husband and both kids have PKD I WANT TO BE REMEMBERED FOR THE LIFE I GAVE AS WELL AS THE LIFE I LIVED I found this on a website and its so true nkidneyotb Member Username: Nkidneyotb Post Number: 2 Registered: 02-2010 Posted on Wednesday, March 03, 2010 - 04:39 am:    @Swell thanks for your reply - and for the hope! Before doing anything drastic (like an angiogram) I'm going to demand they mix the cocktail of meds up a bit. What would it hurt? I will bring up the 3mg in the morning and 4mg at night forumla.. With that.. how long until your next bloodwork did you see results? When they sent me home they told me to drink alot alot to flush the kidney.. after I gained the 30+lbs, doc wanted me on 1000mls a day.. though at that time I was peeing about 1200 a day. The more I write this all out and think about it.. this doctor has really ever LISTENED to me. It's MY body, I know what it is and isnt doing all day. Not just for the 20 minutes you spend with me. @Chuck thanks for replying. I am at a Transplant Center in North Jersey (would rather not say here) but yes, they do do a lot of transplants are always on local NYC shows and such talking about transplants. They did not explain why the prograf was upped back in Janurary when they upped it. I am also on Myfortic (540mg 2x a day), Prednisone (5mg 1x a day) Valcyte (twice a week), Bactrim (everyday) Multivitamin & Omprazole (both 1 a day) and Midodrine (10mg 3x a day) and Allopurinnol (3x a week) Nothing else was really off.. I did have super low white blood count, and my (the name is escaping me right now) was up and i was at risk for Gout which is why the put the Allopurinol into my regimen. Still think I will ask doc whne i see him Friday about doing a change in Prograf dose and/or telling me more about Rapmuname @Heather.. thanks so much! My donor is doing wonderful. She's just very sad since this hasn't been a real walk in the park for me. She just wants things to get better (of course). @Kristi thanks so much for your sharing your story. It's so glad to know theres others out there who may have gone through something similar. @Robin - My first transplant was indeed a cadaver and was also "asleep" for just about 30 days. After that it was smooth sailing for a good 5 years. I was always told the 2nd transplant should wake right away since it's from a live donor and going from one room to the next.. They tried initially blaming it on my bp in the beginning, saying it was too low so the kidney wasn't getting a good blood flow (my bp at time of surgery was 60/30.. but they knew this when we first sat down for our meeting! I asked them if I should be concerned and was told no... Not only did I suffer being in ICU for a week simply because I was getting a medication to raise my bp thru IV, but also immediately following the transplant they refused o give me ANYTHING for pain!! I was a wreck. But I digress...) That's what I wondered too.. I was peeing with the lasix.. my usual 800ish or whatever I put in for the day.. but once they finally put me on zaraxolyn is when I really started peeing like a race horse and losing the marshmallow feet and overstuffed gummy bear). I'm wondering what (unimbrasive) tests could be done? Maybe an ultrasound to see if we can see this "abnormality" there? I really felt at this point my doc was just reaching for answers.. because everything else at this point says that it SHOULD be working lovely. It is still a bit swollen on the right side where it was transplanted, I was told that could be contributed to the fact a week after they did the transplant.. I had to go down for another surgery because my belly was leaking so much. Whatever they did in there seemed to fix the leak a little.. but I still had to have a JP Pratt for a few weeks after. ---- Anyway, thanks again for all your thorough insights. I got bloodwork taken today and will see the doc on Friday and get more bloodwork. Like one of you mentioned, I need to live my life already! Plus - I still have the permacath in so we kinda need answers super soon. I'll keep everyone updated. Thanks again! kristi Member Username: Kristi Post Number: 60 Registered: 02-2010 Posted on Thursday, March 04, 2010 - 03:35 am:    I know my doctor thought my rise in creatnine could be from my current stint removal, possibly rejection, or a narrowing of the artery. I wish I could be of more help! I will keep you in my prayers. Just remember to stay positive and to have faith that everything will work out as it should. HUGS, Kristi Swell Member Username: Swell Post Number: 59 Registered: 06-2009 Posted on Thursday, March 04, 2010 - 08:21 am:    K, After my prograf was lowered, my creatinine had dropped by 0.2 by the time I had lab work again. I get lab work every 2 weeks and it continued to drop a small amount until it got to 1.0 - 1.1, where it has stayed the last 2 months or so. They like this particular dose for me, since my prograf level stays around 6.0, and my creatinine is at a good place. Hope your lab work Friday looks great! Stay positive!! swell FSGS ESRD 12/08 Kidney transplant 4/09 Medical College of Georgia Augusta, Ga. Kidney donated by my wonderful husband! K Member Username: Nkidneyotb Post Number: 3 Registered: 02-2010 Posted on Thursday, March 04, 2010 - 04:08 pm:    Got bloodwork back from Tuesday (finally!). The creatinine is still at 3!! This is now 3 weeks that its been at 3! OOF! Didn't get prograff levels back yet, but last time it was 7.1. Is that enough leeway to ask if they can try lowering my dose to maybe 4 at night and 3 in the morning? I'm so desperate at this point for some kind of change. Still don't feel comfortable going forth with an angiogram since they're not certain that's the problem. I'm almost positive this is what my doctor tomorrow suggest we do too. At that point I will tell him I'm going to have to get a second opinion. The guessing game is getting tiring! Thanks all for your replies. You're a great source for support.. so glad I found this site! Swell Member Username: Swell Post Number: 60 Registered: 06-2009 Posted on Thursday, March 04, 2010 - 07:38 pm:    K, At least the creatinine is holding steady and not rising..... I hope it goes well at the doctor's office tomorrow. FSGS ESRD 12/08 Kidney transplant 4/09 Medical College of Georgia Augusta, Ga. Kidney donated by my wonderful husband! ChuckZ Member Username: Chuckz Post Number: 897 Registered: 05-2006 Posted on Friday, March 05, 2010 - 11:37 pm:    K, It depends on your center's approach to prograf. Personally, I do not think that prograf is the major culprit here. If it was, a biopsy should show it. You definitely have a mysterious situation. The transplant is obviously working to some degree, otherwise your creatinine would continue to climb. I am leaning more to aterial scarring which is restricting flow of blood through the kidney, if, in fact, your biopsies are being properly interpreted. Your choices would appear to have the angiogram or look for a second opinion. I had my transplant at UPMC in Pittsburgh. They have the most experienced transplant pathology group in the country and Dr. Shapiro is the main transplant "guru" on Medscape. They might be able to look at your case as a second opinion. Hope this helps, Chuck kristi Forum Leader Username: Kristi Post Number: 67 Registered: 02-2010 Posted on Saturday, March 06, 2010 - 12:12 am:    K, Was your kidney from a living donor? The reason I ask is my mom donated one of her kidneys to me and my creatnine went up and they did a biopsy to check for rejection and a sonogram to see if the artery had narrowed. Evidently when it is a living donor they cut the artery close to the kidney and a lot of times the artery becomes narrow causing an increase in the creatnine. Also, my doctor had me on a water pill as well and now that I am off of the lasix and my creatnine is continuing to drop. I totally sympathize with the stress of not knowing what is going on. I don't blame you for wanting a second opinion. Before I went on dialysis, I was put in the hospital in April, October, and November in 2008. I was hospitialized for a week each time. I had different nephrologists in the hopsitals and when I was released I was told to see that nephro at his office so I would call and make an appt and they would inform me that they could not see me bc I was a patient of my current nephrologist. I had not seen that nephro in a couple of years and he would not see me so I went on a search for a good nephrologist and found one, Dr. Allan Sallman. Anyway, the point to that long winded story...lol...was sometimes other doctors will not see you bc you are another nephro's patient. Don't get upset, it is bad for the kidney, just stay positive and your determination will prove worthy. Stress may cause your bp to go up which cause the blood to be pumped harder thru your body. At one time, pre dialysis, my bp was 230/170 and I was told that the higher your bp the more damage it does to the kidney and that if bp get too high it could split the kidney in half. If there is anything I can do to help...don't hesitate to ask. HUGS, Kristi K Member Username: Nkidneyotb Post Number: 4 Registered: 02-2010 Posted on Saturday, March 06, 2010 - 12:46 am:    Kristi and Chuck, thank you so much for your insight. Yes, the kidney was from a very good angel of a friend of mine. Went to the Transplant Clinic today to see the doc. Of course, he starts right away with the "nothing has changed, we need to really weigh the risks and think about if you want to go forth with the angiogram". He seemed pretty negative at this point (after 3 weeks of creatinine staying steady at 3). Said there's no emergency, but that we should make a decision at my next appointment in 2 weeks. Suggested the lowering of the prograf, and like you said Chuck, he wasn't feeling that idea at all. He said a prograf level of '"7" is right where he wants me to be. Anyway.. when I got home a few hours later the nurse called all excited and said "TWO POINT FIVE, BABY!" :-O I was in shock, but then thinking.. how the heck could it have gone down .5 in 3 days with absolutely no changes in medication or anything? I see the doc again in two and a half weeks, should be interesting to hear is theory now that the creatinine is actually going down! (Fingers crossed that it continues to go down!!) I actually still have my permacath in from dialysis.. wonder if that somehow could be contributing to the high creatinine? I've had it for over 3/4 years (I know.. I know! bad..) kristi Forum Leader Username: Kristi Post Number: 69 Registered: 02-2010 Posted on Saturday, March 06, 2010 - 01:05 am:    K, That is wonderful news!!!! When was your transplant? When was the last time you were on lasik? Has the permacath been in for 3/4 years after transplant or while on dialysis? Also, has your stint come out yet? K Member Username: Nkidneyotb Post Number: 5 Registered: 02-2010 Posted on Saturday, March 06, 2010 - 01:32 am:    Hi kristi! I know it's just .5 but I'm still in shock (and excited! But trying not to get toooo excited). Since the transplant (Dec. 3rd, 2009 my dad's bday!) the lowest my creatinine has been was 2.4 and that's when I was still sporadically dialyzing once or twice a week. They removed my stent sometime in early January I believe. And I stopped the lasix/zaraxolyn sometime in mid-February. This permacath has been in since 2007ish. Heather Forum Leader Username: Heather Post Number: 2803 Registered: 05-2003 Posted on Saturday, March 06, 2010 - 01:41 am:    Great news, K. I am glad it is now heading in the right direction. keep us updated. Heather Forum Leader - Living Organ Donation EC Illinois, USA Kidney donor to dad 12/1/99 Rush-Presbyterian-St. Lukes, Chicago DONATE LIFE kristi Forum Leader Username: Kristi Post Number: 70 Registered: 02-2010 Posted on Saturday, March 06, 2010 - 01:43 am:    K, That much in a drop is still impressive!! I just did a search on the internet and you may want to take a look at this link. I will continue to search...maybe the lasix could be what caused it to go up. http://www.doctorslounge.com/nephrology/forums/backup/topic-3464.html K Member Username: Nkidneyotb Post Number: 6 Registered: 02-2010 Posted on Wednesday, March 10, 2010 - 02:16 pm:    So, my local neph just randomly called me and said he scheduled me for an MRI without contrast. Has anyone had an MRI of the transplanted kidney? What should I expect? Will they try to inject anything at all since it says "without contrast"? So many questions, ay ay ay! K Member Username: Nkidneyotb Post Number: 7 Registered: 02-2010 Posted on Thursday, March 25, 2010 - 03:54 am:    SO! My creatinine is magically down to 1.7!! The lowest its EVER been w/this kidney!! My doctors are estatic as the last 3 bloodworks we've went from 3 to 2.5 to 2.4 and now 1.7! After last weeks bloodwork of 2.4 my doc decided to stop the Bactrim. Then this week the big C was 1.7. I've been peeing like mad too.. even waking up quite frequently in the middle of the night to do so. But I'm not complaining! (Tho, can I complain about peeing in public bathrooms... GROSS!) I did the MRA today. Within 2 seconds of being in the tube I got claustrophobic. They pulled me out, scooted me back a little, allowed me to keep my arms down and gave me a nurse bell to press if I started to feel anxious. What helped was raising my neck a little and actually seeing there was light (and air!) about a foot beyond the top of my head. Boy, did that help alot! dennis Member Username: Dennis Post Number: 195 Registered: 02-2009 Posted on Friday, March 26, 2010 - 03:59 am:    K, that's great news! Looks like it's working well. I wouldnt be surprised if your creatinine drops some more. I do know bactrim does increase creatinine. Regarding the MRI, I know that contrasts arent good for our transplants unless it is necessary. My doc had me do no contrast for ct scans and am sure the same for mris. she said the only time she'll do the contrast is it outweighs the negatives, ie. you need to do the test w/ contrast and risk the damage to the kidney because the alternative is worse like death,etc. You mentioned MRA hen you previously said no contrast, which did you end up doing? http://kidney-beans.blogspot.com/ CiscoKidney07 Forum Leader Username: Gregg Post Number: 3305 Registered: 03-2008 Posted on Friday, March 26, 2010 - 02:43 pm:    K, just make sure that you keep yourself hydrated. If you don't, that will make your levels rise. Sounds like you are making good progress now. Maybe you were just a little nervous. (Not that I blame you) Good luck!! There are not too many things in life worth working my butt off for, but my health is one of them K Member Username: Nkidneyotb Post Number: 8 Registered: 02-2010 Posted on Saturday, March 27, 2010 - 03:03 am:    Hi Dennis - that was exactly my nephrologist's problem with me doing an angiogram --- the dye. The MRA was done with no contrast. I definitely wasn't prepared for the tightness of the tube. I'm not sure what the difference is between MRA & MRI.. but I was mistaken. And it was definitely an MRA that I had. @Cisco - thanks for the luck. I've been watching fluid intake because for the longest I was barely peeing so was told to keep it at 1000mls a day. I'm not used to this whole new drinking thing! But i like it! ;) *crossing fingers* things finally keep going in the right direction. I guess no news is good news in reference to the MRA that was done Wednesday, right? Cuz I've yet to hear anything... 1992 - ESRD @ 12yrs old pd & hemo dialysis til.. 1995 - Cadaver Transplant 2000 - Back on dialysis & waiting list 12/2009 - Plasmapharesis & IVIG so an angel of a friend can donate her kidney to me Follow my transplant woes: http://twitter.com/nkidneyotb kristi Forum Leader Username: Kristi Post Number: 97 Registered: 02-2010 Posted on Sunday, March 28, 2010 - 12:32 am:    K, I had my transplant in Dec. and my creatnine likes to play with the doctors and I too. My creatnine went up then down and is now at a stable 1.3. Now all I am worrying about is the WBC. They took me off the Cellcept and Valcyte for a week but have me on the Valcyte again. I think they are just being extra precautious bc they don't want anything happening to us. Keep us posted BIG HUGS, Kristi Kidney Forum Leader Kidney txt on 12/14/09 at Tampa General Hospital and by Lifelink Institute Doctors. There is little difference in people, but that little difference makes a big difference. The little difference is attitude. The big difference is whether it is positive or negative K Member Username: Nkidneyotb Post Number: 10 Registered: 02-2010 Posted on Sunday, March 28, 2010 - 12:37 am:    Kristi!! That's my problemo too! My WBC is now at 2.1. Should I be overly worrying (though what good does that really do). Should I be feeling side effects from this? I know I'm much more susceptible to germs & such.. Just not sure what more precaution I should take. 1992 - ESRD @ 12yrs old pd & hemo dialysis til.. 1995 - Cadaver Transplant 2000 - Back on dialysis & waiting list 12/2009 - Plasmapharesis & IVIG so an angel of a friend can donate her kidney to me Follow my transplant woes: http://twitter.com/nkidneyotb kristi Forum Leader Username: Kristi Post Number: 104 Registered: 02-2010 Posted on Sunday, March 28, 2010 - 01:50 am:    K, They put me in the hospital 2 weeks ago bc my wbc got down to 1.2. They may talk about taking you off the Valcyte or the Cellcept or possibly both. When I went to lab and got the result of my wbc they admitted me to the hospital right then, wo passing go and collecting $200...lol They told me that they had to keep me there bc at that point my wbc was so low that if i walked out of the hospital and caught a common cold it would kill me and they would not be able to do anything to save me. Make sure you get a copy of your labs and ask about the wbc on every visit. When i was in the hospital they gave me a shot of nupogen and it boosted it to 4.4 but my labs Wed. showed it had dropped to 2.5 again. I go Friday to the doctor again and to be honest I am kinda worried. Just know if they hospitalize you, they are doing it to keep you safe. HUGS, Kristi Kidney Forum Leader Kidney txt on 12/14/09 at Tampa General Hospital and by Lifelink Institute Doctors. There is little difference in people, but that little difference makes a big difference. The little difference is attitude. The big difference is whether it is positive or negative dennis Member Username: Dennis Post Number: 198 Registered: 02-2009 Posted on Sunday, March 28, 2010 - 05:16 am:    K, I've had your problems too before when I was on cellcept. There are a number of things that can cause it. Meds like valcyte, cellcept, imuran can cause it. Or if you have some infection. The WBC at 2.1 is not good, but may not 'really' bad. Let me explain. The WBC count is one of the factors. But it does make you susceptible to infections, moreso opportunistic ones because (I assume) you are on prednisone. A better gauge is the absolute neutrophil count. You will notice that below the WBC count there are a few items like neutrophil, lymphocytes, etc. and their percentages. This tells you what % of your WBC each component is. In short our WBC is composed of different types of WBC, the lymphocytes, monocytes, neutrophils, each doing a different type of job, some for infection, some for allergies, etc. The neutrophils are the main soldiers vs infection. And you can calculate absolute neutrophil count with: Total white blood count x % neutrophils* = absolute neutrophil count so if the WBC is low but the % neutrophil is high you may not be that open to infection. The result you get tells you how risky you are for infection: ANC greater than 1500 No increased risk of infection ANC 1000-1500 Slight increase in risk of infection ANC 500-1000 Moderate increase in risk of infection ANC 100-500 High risk of infection ANC less than 100 Extremely high risk of infection So the low WBC means to be cautiously careful, like wash hands often, no touching of eyes, nose unless you are sure hands are clean, wear mask more often.etc. But don't over stress yourself and don't panic just yet. Make sure your doc knows about it and follow his instructions. You may also want to get some neupogen shots like Kristi mentioned, although they are temporary only and the WBC will only go up once the cause (be it a certain medication, etc.) is remedied. Hope this helps. http://kidney-beans.blogspot.com/