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rads
Member
Username: Radhika1

Post Number: 41
Registered: 03-2011
Posted on Tuesday, June 07, 2011 - 01:32 am:   Edit Post Delete Post Print Post

The bad news is i came to know that i have interstitial tubular nephritis.

Don't know the reason how it happened suddenly, what caused it, I will call it purely bad luck.I was doing great since 6years of transplant and boo boo, it took only few months to tear my world apart.Couldn't believe a normal leg swelling will end up to this extreme.

Well I don't know much about Interstitial Tubular Nephritis, all I could find is that it will gradually lead to kidney failure again.

Any experience or just knowledge will be highly appreciated.
ed
Forum Leader
Username: Ed2001

Post Number: 212
Registered: 03-2010
Posted on Tuesday, June 07, 2011 - 05:47 am:   Edit Post Delete Post Print Post

Rads,

Sorry to hear about the chronic rejection. How are you doing right now? How is your creatinine and GFR? What did your doctor tell you about your situation and did he adjust anything?

I'm no expert from this, but there are a lot of things that can cause this, including prograf or cyclosporine toxicity. Your biopsy results may give some clues on the cause, and it can give you a % of how much scarring is present. This, along with your creatinine and GFR are factors that can influence how long your kidney lasts.

Did your doctor tell you whether you have CNI (prograf or cyclosporine) toxicity? If this is the case, he'll probably switch you to other drugs to slow the progression.

Another thing is do you have protein in urine? Spilling a lot of protein will speed up the deterioration of the kidney. If this is the case, your neph will give tell you to adjust your diet and probably give you some BP drugs to lessen the protein in the urine.

Depending on some of the things I've mentioned above and others, along with luck, your kidney can possibly last quite a long time, ie. more than 6-7 years more or so before problems arise.

Hope this helps.
Kidney Transplant
April 2001
rads
Member
Username: Radhika1

Post Number: 42
Registered: 03-2011
Posted on Tuesday, June 07, 2011 - 11:34 am:   Edit Post Delete Post Print Post

Thanks ed

He tried giving Methyl Predinosolone IV 3days dose, and the creatinine rose from 2.7 to 3.3. After 3days came down to 2.3 and again I got it tested and it jumped to 3 again.I really do not know whats causing this fluctuation.

He dint say anything of what caused it, or % of scar is there, I didn't knew anything what was going inside me, until I got frustrated and sat down to find it out myself.Only thing he told me is there is a mild acute rejection along with reaction in the kidney.He has not adjusted any drugs as yet apart from increasing the dost of corticosteroid which is making me feel worse, and I really cannot find any improvement in neither the lab results or the way body is feeling.

He has suggested low salt diet and 40gm protein diet each day. But my albumin is very low, and I have started feeling very weak inside, they injected two bottles of albumin through IV, but it didn't helped much I don't understand the treatment, first they say me not to take protein and than they inject albumin.

My doc is giving me lasix to excrete extra water out of the body, because the major problem now I am facing is with my leg swelling, it becomes so high at times that I can't even walk due to pain but the swelling is there even after taking lasix, and doc is telling to take 2 lasix a day. I feel more than food I take medicines everyday and feel nausea most of the time. Due to tension I have lost my hunger and don't feel like eating anything

I am loosing hope and trust on this treatment where inspite of doing everything right you can suffer even without knowing the cause.I was doing best in my eyes for the past 6years but suddenly everything changed.
cruizin
Member
Username: Cruizin

Post Number: 117
Registered: 09-2010
Posted on Tuesday, June 07, 2011 - 10:10 pm:   Edit Post Delete Post Print Post

Hi rads, can you find out if it is acute or chronic interstitial nephritis? How long ago did the leg swelling start?

What antibiotics have you been on and have you had any fevers, etc?

I'm sure you've done google searches, but here's a good page I can across:

http://www.nlm.nih.gov/medlineplus/ency/article/000464.htm
Received kidney Mar 16, 2011, from my brother! 3/6 match
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008
ed
Forum Leader
Username: Ed2001

Post Number: 213
Registered: 03-2010
Posted on Wednesday, June 08, 2011 - 12:08 am:   Edit Post Delete Post Print Post

Rads,

I know how frustrating it feels sometimes.

From your initial post, it looked like you had a chronic problem. And I thought that the info you got was from the biopsy result document. But after your new post, I'm not so sure, and a bit confused.

Your doctor told you you have mild rejection, and am I correct in assuming that the interstitial inflammation you mentioned is the cause or how did the doctor connect the 2 words?

Right now, I'm kind of siding with Cruizin in asking that it is possible what you are experiencing is an acute episode.

Was your creatinine slowly creeping up over the years (like 1.3, then 1.5, then 1.8, then 2, over a span of the 6 years, ie. slow/gradual increments ), or did it suddenly jump up (like 1.5 then 2.3 in a short time). The former is something more chronic, whereas the latter more acute.

Acute will feel worse, but it fixable in the sense it could make things go back to where it previously was or if there was permanent damage to a part of the kidney, it may make you stabilize at a higher creatinine, like before at 1.5, after fixing the problem, might be at 1.9, but then can stay at 1.9 and not progress. Chronic, on the other hand, the doctors currently have no fix for that and it will eventually destroy the graft.

If it was sudden, can you remember and changes in medicine or anything else that you did or were given right around a month or so before the symptoms and high creatinine happened? Also, are you sick in any way, like fever, diarrhea? The mild rejection may be caused by infection.

You may try to ask your doctor to explain what the results have said, what they mean and what steps are being done about it, because there seem to a quite a bit of uncertainties and questions here.

Another concern is your overall health level. Low albumin indicates possible malnourishment, which is never good, and if not addressed can add new problems to existing ones. Make sure to eat and drink. If you can't take solid food, try the nutritional supplements/meal replacements like ensure or nutren.

Are you not eating because you feel down or Is your appetite not there because you can't eat / are always bloated/full and feel like throwing up anything you eat (ie. the bloating, full stomach, nauseous, ugly feeling we have when there are a lot of toxins that aren't taken out of the body.). The latter may be caused by the kidney not working properly so you feel nausea a lot. If the kidney isn't functioning well enough, I've seen doctors put transplants on temporary dialysis to keep the stress off the kidney for a while (1 maybe 2 weeks) to assist the kidney in filtering the toxins, as well as make the patient feel better and able to eat. But I'm not sure what is happening in your case, and if it is mild rejection, this shouldn't be needed.

Also make sure not to get dehydrated which could cause damage to your kidney if is kept for a long time.

Hope this helps. Sorry for the long post.
Kidney Transplant
April 2001
roger
Member
Username: Rojjarz

Post Number: 26
Registered: 02-2008
Posted on Wednesday, June 08, 2011 - 12:15 am:   Edit Post Delete Post Print Post

hi radhika,
after reading your posts would recommend you to show your case to my transplant centre as your case is the same that i had with my native kidneys Please do not delay any further as i was also treated with heavy doses of steroids and infusion of albumin that caused my kidney function to detoriate further.

Regards
Rohan
rads
Member
Username: Radhika1

Post Number: 43
Registered: 03-2011
Posted on Wednesday, June 08, 2011 - 12:21 am:   Edit Post Delete Post Print Post

The selling started 7months back but only on ankles and feet, and the moment my doc stopped amlodipine the swelling completely went away, but I had no clue that removing a particular BP medicine can lead to a condition like that.

Antibiotics i have taken till now - Ceftum and tavanic.

This was the correlation of the biopsy report -

The overall morphological features are of transpant glomerulopathy with dense tubulointerstitial nephritis along with suggestion of acute mild rejection.
rads
Member
Username: Radhika1

Post Number: 45
Registered: 03-2011
Posted on Wednesday, June 08, 2011 - 11:55 am:   Edit Post Delete Post Print Post

Hey thanks ed for the info, its really really nice of you to share such valuable info, you have no clue how hungry I ma to get infos and answers, so pl dn bother about the long post.Mine is even longer.

My creatinine started creeping form 1.27, 1.47, 2.3, again came down to 2.0, again jumbed to 2.5, 2.7, 3.3, 2.3, and now its 3.0 latest report in 6months it fluctuated like this.before 6months it was always between 1 - 1.1

In all these months they just changed the BP medicines starting with removing the amlodipine that is a CCB class Bp drug, but my BP was not getting controlled without a CCB which was causing intense leg swelling, and things turned out this way.

Docs are not saying anything clearly but ya there is a damage to the kidney and they are saying don't think for a second transplant in haste, you might need it near future but its not urgent now.

No I don't have any fever, ya had diarrhea last week but it subsided of its own in 2days, though it made me very weak and since than i cannot eat properly, and don't feel like drinking water or better say I am afraid that the liquid will remain in my body and will make my legs to swell.And I am so deeply concerned and haunted that half of my hunger and joy is gone. Further I am on 25mg corticosteroid now so they have restricted me to home and not to move out because it can cause some infection.

I have consulted another doc who is suggesting me to get a CMV and BK virus for blood and urine tested as it might sometime cause kidney failure.
rads
Member
Username: Radhika1

Post Number: 46
Registered: 03-2011
Posted on Wednesday, June 08, 2011 - 12:02 pm:   Edit Post Delete Post Print Post

Hi Rohan,

I am not in a position to move out of kolkata now, Is there a facility so that I can mail my scanned reports there, just to get a, opinion and If they are keen of any solution I will try and come over there.

I am changing doc here, and consulting two others over here, but all docs are doing various type of tests and the process in just continuing .

One is suggesting to get a CMV and BK virus check done, and only after the reports come he will decide on further course of action.

All in all I am completely devastated and going insane.
roger
Member
Username: Rojjarz

Post Number: 27
Registered: 02-2008
Posted on Thursday, June 09, 2011 - 10:55 am:   Edit Post Delete Post Print Post

hi radhika,
for your raising creatinine would suggest you eating pineapple every day. !st morning tea be black (without milk & No added sugar) this kind of tea helps boost the functions of nephrons. this tea should be taken for 7 days and then discontinued for 7 days.and vice versa

Hope you find this helpful
TransplantHELP
Member
Username: Transplanthelp

Post Number: 166
Registered: 11-2010
Posted on Thursday, June 09, 2011 - 03:23 pm:   Edit Post Delete Post Print Post

Roger, why pineapple? R U saying black tea is better than green tea??

Rads, wish I had some advice but I don't know. I just can't stress enough how important exercise is for ALL your organs.

GOOD LUCK! May Krishna bless you!
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 4731
Registered: 03-2008
Posted on Thursday, June 09, 2011 - 03:29 pm:   Edit Post Delete Post Print Post

Green tea is one of the things that transplant patients have been advised not to drink. Apparently, it messes with absorption rates of immunosuppressants. Also, there are some people who cannot exercise like you can, for whatever reason. Remember, I told you that everyone is different.
There are not too many things in life worth working my butt off for, but my health is one of them

Check out my daily fitness blog postings
roger
Member
Username: Rojjarz

Post Number: 28
Registered: 02-2008
Posted on Friday, June 10, 2011 - 12:41 am:   Edit Post Delete Post Print Post

hi radhika,
i asked my nephrologist wheather you can send the scanned reports he said ok !you can mail him the reports or second opinion is you can contact him over phone His number is 09824349500
his mail id is mmrajapurkar@mpuh.org
He told me names of some Drs trained under him but i forgot their names.
Please get the reports to him ASAP and give him a call
God Bless and wish you a great recovery!
roger
Member
Username: Rojjarz

Post Number: 29
Registered: 02-2008
Posted on Friday, June 10, 2011 - 12:48 am:   Edit Post Delete Post Print Post

Hi Transplant help!
Just try it out and let me know Check your creatinine before starting it and check it after 15 days (Continuously having pineapple for 15 days and Black tea for 7days) Keep in touch!
It is miracle which i have experienced! I don't know how what enzymes are present in pineapple but it works!

Regards
God Bless!
Rohan
TransplantHELP
Member
Username: Transplanthelp

Post Number: 167
Registered: 11-2010
Posted on Friday, June 10, 2011 - 07:28 am:   Edit Post Delete Post Print Post

Rohan, why stop the black tea at 7 days and the pineapple at 15 days?? If it's so good why not have it most every day?

Cisco, as U said we're all different. I've had green tea tons of times with no adverse effect. I've only had the Lipton green tea with citrus in a bottle and the Lipton green tea bags.

I've seen many nephrologists over the years including one from the Harvard of the midwest and they never gave such a warning.
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 4732
Registered: 03-2008
Posted on Friday, June 10, 2011 - 09:20 am:   Edit Post Delete Post Print Post

Transplant Help,
My wife and I attended an NKF event in Chicago a couple of years ago. (actually, this event was attended by transplants of all kinds)There was a nurse from a Chicago hospital there, who was telling anyone who would listen, that green tea is a no-no. She also went on to say that bottled tea was not a good idea either, but I cannot remember the reasoning behind it. I too was drinking green tea at the time we went to Chicago. But I don't really care where the information came from, at that point, I stopped drinking green tea. I just figure that if someone who works with transplants all the time says that there is a problem with a food, drink or whatever, I am not using it. I went through this once, but I don't want to go through it again. I still do drink tea, but it is decaffinated from bags.
There are not too many things in life worth working my butt off for, but my health is one of them

Check out my daily fitness blog postings
Bala
Member
Username: Balapandian

Post Number: 36
Registered: 08-2010
Posted on Friday, June 10, 2011 - 11:09 am:   Edit Post Delete Post Print Post

Rohan,

let me know the brand and type of tea to buy in india

Bala
CKD stage5 due to PKD, awaiting kidney Transplant
TransplantHELP
Member
Username: Transplanthelp

Post Number: 168
Registered: 11-2010
Posted on Friday, June 10, 2011 - 05:09 pm:   Edit Post Delete Post Print Post

Cisco, one thing I've learned is that sometimes people in the nephrology community contradict themselves.

I'm not exactly sure how credible the NKF is. I'm not saying they're bad but they used to have a national information director named Teresa Pavia that you could call and talk to but they fired her for no reason.

I talked to her several times and she said things like don't eat or drink 8 hours before a blood test (except water) and no exercise for 24 hours before a blood test. The funny thing is my nephrology nurse said she'd never heard of that before! LOL

Also that Teresa said get a blood test ever quarter (3 months) once you're past 2 years Tx but some nephrologists vehemently disagree while others say it's okay.

I really doubt green tea does anything as long as you don't take it with medication to be on the safe side. But if you took your meds 4-5 hours ago I see no problem. I'd like to see a scientific study as to what green tea supposedly does. I have doubts if such a study exists.

I was told our drugs are antigen-specific so we don't really have any diet restrictions UNLESS we have other conditions like diabetes or high blood pressure, etc.
CiscoKidney07
Forum Leader
Username: Gregg

Post Number: 4733
Registered: 03-2008
Posted on Friday, June 10, 2011 - 05:36 pm:   Edit Post Delete Post Print Post

Whatever a person thinks, I guess that is what they should go by. Myself, I will pay attention to what professionals say in my presence, unless I think that there is reason to suspect differently. Whether I drink green tea or black tea makes no difference to me, it is still tea. If my nephrologist tells me differently, then there is a possibility that I might research it first and if it seems logical, then I might drink it. It is not a big deal to do without green tea, no more than it is to do without grapefruit or pomegranate.
There are not too many things in life worth working my butt off for, but my health is one of them

Check out my daily fitness blog postings
rads
Member
Username: Radhika1

Post Number: 49
Registered: 03-2011
Posted on Friday, June 10, 2011 - 11:42 pm:   Edit Post Delete Post Print Post

Hi All thanks for the valuable information,

@Rohan I will surely try pineapple and black tea as you have suggested.

Just to update you guys, to all the docs here I have consulted they are saying my transplanted kidney could last no more than 1.5 - 2 years....as it is affected and there is no cure. My family members have started looking for another kidney as my first transplanted kidney was from my mom, but I am not quiet eager to go for further treatment as I find this cure to be not a cure at all... There is no surety even if you do everything right, Its all LUCK.
rads
Member
Username: Radhika1

Post Number: 51
Registered: 03-2011
Posted on Saturday, June 11, 2011 - 12:09 am:   Edit Post Delete Post Print Post

@Rohan,

You haven't told me the name of the doc.
roger
Member
Username: Rojjarz

Post Number: 32
Registered: 02-2008
Posted on Saturday, June 11, 2011 - 04:05 am:   Edit Post Delete Post Print Post

Hello Radhika,
Would suggest you to mail the reports to my Nephrologist (Dr Mohan Rajapurkar) And then give him a call on his cell number 09824349500
He will go through your reports and let you know whether you have to visit him personally or he will recommend some doctor there in kolkata.. Hope for the best and have faith in god because that is what i have done myself.

@ Transplant help There is a reason my friend for doing so its an ayurvedic medicine (which i read in some book) and tried it to find the difference
Hope you too experience it yourself Cos experience is the best Teacher.

@ Bala Check your Private Messages
God Bless!
TransplantHELP
Member
Username: Transplanthelp

Post Number: 171
Registered: 11-2010
Posted on Saturday, June 11, 2011 - 06:36 pm:   Edit Post Delete Post Print Post

Rohan, so if we have Lipton black tea then that's ok? 1 cup a day for 7 days right?

Then about how much pineapple should we have a day for 15 days?

Once that's over do we stop or do we keep eating pineapple and drinking black tea?
Bala
Member
Username: Balapandian

Post Number: 37
Registered: 08-2010
Posted on Saturday, June 11, 2011 - 10:47 pm:   Edit Post Delete Post Print Post

transplantHelp,

I think this is what rohan meant:
you need to eat pineapple every day for ever
drink black tea 7 days, stop for 7 days, again drink for 7 days, and so on
let us wait for his reply

Bala
CKD stage5 due to PKD, awaiting kidney Transplant
roger
Member
Username: Rojjarz

Post Number: 36
Registered: 02-2008
Posted on Monday, June 13, 2011 - 02:40 am:   Edit Post Delete Post Print Post

@ Transplant help & Bala
You can have pineapple about 100 - 250 gms every day Also Apple helps clear creatinine About the tea you can have it for 7days then stop again for 7days and continue so on ...
roger
Member
Username: Rojjarz

Post Number: 37
Registered: 02-2008
Posted on Monday, June 13, 2011 - 02:48 am:   Edit Post Delete Post Print Post

@ Transplant help & Bala
You can have pineapple about 100 - 250 gms every day Also Apple helps clear creatinine About the tea you can have it for 7days then stop again for 7days and continue so on ...
keith elliott
Member
Username: Keith_elliott

Post Number: 102
Registered: 11-2010
Posted on Monday, June 13, 2011 - 04:16 am:   Edit Post Delete Post Print Post

I was warned against green tea as well - it increases oxidative stress in patients tacro and ciclo.

.. also warned against chamomile tea (as it's processed using the cy3pa cluster), same as ciclo and tacro and can cause all sorts of problems including internal bleeding and messing up drug levels

My understanding is that herbal teas generally often use the cyc p450 enzymes in the same way as grapefruit and bitter orange marmalade .. these can all mess up your (cni) drug levels to some extent.

As far as I understand it, its also felt that quercetin messes up drug levels too .. which means that even onions and red wine can be a problem ...

Having said all that, it might be that these older studies are starting to be 'old' thinking ... for example this link from pubmed:

http://www.ncbi.nlm.nih.gov/pubmed/18543393

seems to be saying that green tea polyphenols can reduce cell death in patients taking tacro.

I wonder which is the greater effect ... reduction in cell apoptosis or detrimental effects of varying drug concentrations ?

So maybe the truth is we just don't understand enough about it yet!

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