2nd Call - It's a GO!!!!

[monrein]

RG, I really hope they figure out what's going on and get it under control.  The changes in the Prograf is because they measure the levels of it in your blood and then adjust the amount you're taking so that the blood level falls within the correct range for anti-rejection without toxicity.  It's yet another of the many tightropes we must travel on.  I hope the biopsy is smooth sailing and helps to figure out the next step.
 

[rookiegirl]

I'm concern and hope someone can answer some of my questions.  After I left the hospital last Tuesday, I've gained over 5lbs of weight.  I can really feel the weight gain.  I don't think it's because I'm eating too much.  I think it was the sodium bicarbonate fluid they gave at the hospital.  Yesterday I peed over 4,000 ml of fluids.  I would think this would get rid of the excess weight, but unfortunately I'm still carrying the 5lbs.  I don't understand what happened after the hospital visit that would cause me to gain weight?

Next question, I'm now down to 3 pills of Prednisone twice a day.  My face is still pretty round like a beach ball.  Should I expect to gain lots of weight do to steroids?  If so, how much?  What can I do to make sure I don't gain to much weight where it will damage the new kidney or increase my blood pressure?

Speaking of blood pressure.  My BP prior to transplant was excellent.  Post transplant, my BP is higher than what I'm use too.  Could this BP also damage my new kidney?  I keep asking the doctors about this and they don't seem too concern about my BP.

Also, I'm not a diabetic but I noticed since the transplant, my sugar levels are higher than normal.  Before the transplant my sugar level was 80.  While I was in the hospital after the transplant it increase to 130 to 150 where they kept giving me insulin shots?  Does this mean I'm now going to be a diabetic?  Now that I'm home, they are not concern about me checking my sugar levels.  I remember in the hospital they pricked my fingers so much that fingers where black and blue.

Is this normal for people that gets a transplant?

Sorry for all the questions.  I'm just concern.

Thanks,
Rookiegirl

[charee]

Hi Rookiegirl I'm 5 months post transplant and had much the same things happening as you , after my transplant i was 10 kilos over my weight before the transplant it was all the extra fluid they pump into you  but most people loose theres pretty quick not me i held on to it and had to take laxis a drug to help get rid of the fluid my Dr's told me prednisone can cause some people to keep the fluid on. 5 months on and i still have about 2 kilos extra on its probably not fluid now but weight i have had to really watch what i eat and once i could i had to get back into walking every day its a battle but i think I'm slowly winning it . I'm still on 10mg of prednisone aday and have a moon face.

 Some of the drugs we on can cause us to become diabetics i was told 1 in 3 will develop it after a transplant , i had a glucose tolerance test last month and i am in the danger zone so its looking like i might be that 1 in 3 to get it . was told to loose weight and keep up the walking to try and stop it happening.
 My blood pressure was low after transplant but it became quite high so i ended up on a blood pressure med but after a ultrasound of the kidney it was discovered the artery from the kidney was narrow at one end so that was reason for the high blood pressure so i had ballooned wider a few weeks ago not sure how successful it was as my blood pressure is still bit high
hope this helps you a little take care

charee

[Wenchie58]

Rookie...
   Steroids cause both fluid retention and weight gain.  Fluid retention can cause higher BP.  Steroids also cause blood sugar to rise.  I just had steroid infusions and my sugar got as high as 485...and I hadn't eaten anything!  I freaked!....but 12 hours later it was down to about 145.
   As you taper off the steroids many of these issues will resolve.  My transplant surgeon said that the average transplant patient gains 20 lbs ofter transplant because they feel better and have less food restriction.  But then she asked...."Who wants to be average?"
  Keep up the walking, watch what you eat, your body is going through horrendous adjustments....take care of yourself.
  A biopsy on a transplanted kidney is NOTHING near as bad as a biopsy on a native kidney pain wise....wasn't for me anyway.  I little tenderness at the entry site for a day or two....thats it.

[kellyt]

I'm sure I'm just reiterating what other's have said, but I'll say it anyway.  Gaining weight is normal and expected on high doses of Prednisone, but you can minimize the gain if you're careful.  I wasn't and now I'm paying the price.  Steroids redistribute the weight gain in weird places (neck, face, back, etc.)  Exercise (walking) and try to eat as good as you can (fruits, veggies, sugar free, etc.).  I was told it's best just to follow a diabetic's diet.

Also, the Prednisone can cause your BP to be a little higher, as well.  Watch it, but don't get excited about it because it will more than likely start to come down as your Prednisone comes down.  My transplant nephrologist changed my BP medication after transplant and I don't like it.  I told my regular neph on Thursday that I wanted him to change me back to Lotensin, because my BP's were excellent on that medication.  He said he wanted to wait to see if it comes down as my Prednisone drops.  It's not scary high, but a little high.  He's not worried.

Monrein is right about the Prograf.  That will change depending on the level.  I started at 4 and 4 (a.m. and p.m.), then I went to 4 and 3 and now I'm at 3 and 3.  My levels are at 8.1 pretty consistently, so I'll stay there until they notice some change in the level.

Also remember that the Prednisone will cause "roid rage".  Very emotional!  That will go away, as well.  Prednisone is a nasty little drug.  Miracle drug, but nasty.

[rookiegirl]

Went to the transplant clinic this morning.  My numbers look good and I lost 5lbs since last Thursday.  Creatinine went from 3.4 to 2.3.  So, they postponed the biopsy until next Monday as scheduled.  Last week's numbers was not good due to my Prograf and they lowered it from 3 to 2 and the sodium bicarbonate they gave me at the hospital also contributed to my fluid gain.  I'm not a doctor and I already knew all this last Thursday which I mentioned to them.

I just don't want them to freak out each time this happens and want to do biopsy each time the numbers goes wrong.  You would think they would consider the possibilities.

I do have a question.  In my transplant clinic, I see only the Neph doctors.  Shouldn't there be a transplant surgeon there?  When I went to the hospital to have my catheter removed, I spoke to the transplant surgeon about some of my clinic visits and the doctor mentioned something about the Neph is really not the right person to answer some of my questions related to the transplant.  Who do you see at your transplant clinic?

[monrein]

I only see my nephs now.  I only saw the surgeon for the first couple of weeks and then again when the stent was removed.  Surgical issues are usually at the beginning and then it's the neph you want to follow meds and blood work results.

I would always want to know what changes in treatment will follow from any info gained through a biopsy.  If there is a clear change of direction that would occur, depending on what they find, then OK, but if it is just to KNOW what's going on but nothing would change then I see it as unnecessary risk.

So glad to hear your creatinine is dropping and that you've dodged the biopsy this time around.
 

[Wenchie58]

At my regular clinic visits I see a Nurse Practitioner, every time.  If labs show anything abnormal...they bring in the neph or transplant surgeon or both.

I adore my NP...she is on top of everything and remembers details very well.  I feel that she is on top of things...and she drags those docs around by their ears when they play the power game.   

[okarol]

Since our transplant hospital is 2 hours away, we see our local neph every couple of months. We have a standing order for labs which are done once a month - the results sent to the transplant hospital and the local neph, with a copy also faxed to us. Right after Jenna's transplant we were handed over from Organ Transplant to nephrology at their hospital. The neph immediately wanted to start Jenna on prednisone, even though she was on a new steroid-free protocol. The transplant surgeon had a bit of a tussle with the nephs and we decided to stop seeing their neph, continued follow-ups with the surgeon in the Organ Transplant team, and that has worked fine for the last 2 years.

[kellyt]

This was my experience.

I had one follow-up visit with my surgeon about 2 weeks post-op and that was the last time I saw him.  Right after discharge (Nov. 10th) I went to the transplant clinic every week for labs and every other week I stayed to see the post-transplant nephrologist.  Starting in March I went only once a month, had labs and saw the nephrologist.  This month (last Tues) I went for my labs but requested not to see the post-transplant nephrologist, as I had an appointment to see my regular neph. two days later for the first time since transplant.  They were totally fine with that.  They faxed over my recent labs to my nephrologist that day, along with other pertinent information and I was told I would come back to the transplant clinic once a year for labs and a visit, but otherwise would follow-up with my regular neph.  Now, originally my regular neph said he would see me about every 6 months, but now he wants to see me monthly while my Prednisone is reducing so that he can watch my BP, Prograf levels, etc.

Also, my stent was removed by a urologist not associated with my transplant at all.  They arranged it, but I'd never seen him before and will probably never see him again.

[rookiegirl]

I HATE PREDNISONE!!!! I feel like I just want to eat all the time.  It seems I just can't get full.  What should I do to not over eat?  I'm afraid if I keep this up I will gain weight and cause other problems with my health.  So far, I've maintained my weight but for how long?Anyone experience this?

I'm currently taking 3 pills per day.  This Friday, I go down to 2 pills per day.

Yesterday on my clinic visit, I mentioned to the doctor and he really didn't give any suggestions except he said it's the steroids.  No dah!  The other bad news is that I will probably be on Prednisone forever because of my 81% PRA.  I can't wait to see my regular Neph in May so I can ask him for alternatives.  The funny thing is that the Nephs at the clinic works for my regular Neph.

[okarol]

Your appetite is going to be stimulated with prednisone, so If you need to eat more try walking more - if you can walk an hour every morning it would help.
    

[rookiegirl]

Your appetite is going to be stimulated with prednisone, so If you need to eat more try walking more - if you can walk an hour every morning it would help.
    

it's been 3 weeks since my transplant and I'm still having difficulty walking because I still have a lot of soreness and tenderness.  I try to walk around the house as much as I can tolerate, but the more I over do it, the more pain I get around my groan and drain site.  I guess I'm healing and recovering slower than others.  I limit going outside because of all the pollen.  I have allergy issues.

[okarol]

Your appetite is going to be stimulated with prednisone, so If you need to eat more try walking more - if you can walk an hour every morning it would help.
    

it's been 3 weeks since my transplant and I'm still having difficulty walking because I still have a lot of soreness and tenderness.  I try to walk around the house as much as I can tolerate, but the more I over do it, the more pain I get around my groan and drain site.  I guess I'm healing and recovering slower than others.  I limit going outside because of all the pollen.  I have allergy issues.

Sorry rookiegirl, I hope you heal soon. It's only been 3 weeks! I was thinking it had been a little longer. Give yourself time. 

[Wenchie58]

Rookiegirl....it's only been three weeks.  They will taper down the Pred and your appetite will come around.  And as you feel better you will move more....I know I did.  But I do feel your pain....I was on 7.5 mg of prednisone a day was eating well, exercising regularly and had actually started to lose some weight...then problems arose and they pumped me with 500 mgs of prednisone a day for a few days....welllll..let me tell ya...I could just take a couple of big ole slices of bread...slather on an inch of butter....wrap it all around the refrigerator and have me an everything sammich!!  It will come around!  God Bless.

[Sunny]

Don't rush things. It will all get better when they can reduce your prednisone. For now, just try to learn to deal with what you've been handed. I remember when I was on very high doses of prednisone my stomache puffed out immensely. I complained to my neph about this and her response was, "Well do some sit-ups." Such a BS sort of response because all the sit-ups in the world won't get rid of bloating caused by prednisone. It's not your fault your gaining weight, it's the prednisone. Just wait it out, things will get better.

[rookiegirl]

This past Saturday & Sunday was a wonderful weekend for me.  I was actually out and about to see my youngest daughter perform at her high school talent show.  She played her piano.  Sunday, we attend my oldest daughter's UNC-Chapel Hill end of semester symphony concert.  What a beautiful warm weather.  I thank God for allowing me to attend this precious moment with my kids and my husband.  Even though at the end of the day I was very sore and tired, it was all worth it.  Below are pics of my girls and me.

Just wanted to share.

[paris]

Rookiegirl, Your daughters are beautiful and it sounds like they are very talented.  I am so glad you had a great day.  I hope you got a lot of rest on Sunday.  And, thank you for sharing   

[okarol]

  Beautiful photos!
Take care!

[Wenchie58]

Dont overdo.....but it sounds like a wonderful time.  Thanks for sharing!

[rookiegirl]

I have a QUESTION???

I'm having to take Sodium Bicarbonate 1 tablets 2x/day and Magnesium 1 tablets 2x/day due to my electrolytes.  I'm not sure what this really mean.  I tried to read about it more.  I'm not sure why this is a problem after post transplant.  Could it be my medications?  I hate having to take more pills.  What can I do naturally to make get my electrolytes back to normal?  I have never had this issue before.

NEED HELP!
RG