Transplant Clinic Question??

[rookiegirl]

I had my kidney transplant on 03/20/09.  My first transplant clinic visit was on Monday, 03/30/09.  I was going twice a week on Mondays/Thursday.  It's been 7 weeks and I was told this past Monday it was my last clinic visit.  They now have released me to my Nephrologist which is scheduled for 07/29/09.  I asked the doctor why I was being released so soon?  She said all my labs look good and my creatinine is stable at 1.7.  She said the Nephrologist will do labs once every 3 months.  My concern is that I still have pain/soreness on my right side especially if I've been up and about for a length of time.  But once I sit down the pain subside.

Is this normal for the clinic to release a transplant patient within 7 weeks?  I'm scared and concern because I will not get another lab work until the end of July when I see my Neph.  I would feel more comfortable if my labs were being done weekly/bi-weekly/monthly just so I know my levels are not out of whack and to give me peace of mind that my new kidney is not failing.

Please let me know your experience with transplant clinic.  How did they wing you?

Thanks,
Rookiegirl

[willieandwinnie]

rookiegirl, this does seem unusual to me. Len had to go to transplant folks at least 2 times a month of the first year. He is now seeing local Neph every 3 months. I be asking some questions. Let us know what you find out but I think 7 weeks is too early to release you. 

[monrein]

That sounds way too early RG.  I now do bloods once a week (trx Feb. 23 rd) but more if they don't like something and I go to clinic once a month but would be seen in between if something came up.  I also have a phone mailbox at the transplant clinic and can leave or receive messages any time.  I would agree that labs every 3 months is the most puzzling thing of all.  Try to insist that it be every two weeks at the longest for blood work.  Let us know how it goes. 

[Wenchie58]

I am 6 months post transplant and I have blood drawn weekly.  I go to clinic biweekly....soon to go to monthly.  I would FREAK if I went that long without blood work.

[MIbarra]

I went to the clinic to have stitches removed (and that's about all the transplant team did for me) and then was released to a neph at the medical center. He saw me a lot through the summer and then once a month and slowly released me to every three months.

[chris73]

thats little too long to go w/out labs ! JMO ... i was twice a month for the first 6mo and will do labs once a month for the next 2yrs and its natural to worry about your kidney failing,i still do after its been a yr now! just express your feelings to your DR and hope he will make a change in your lab work so you dont have any more worries...and to ease your mind a little ask neph (or nurse) to send copy of lab results to your home so you  can see them for yourself, which is a big help. ask questions!!  God Bless! Chris

[charee]

Here in Aus i had clinic for 3 months , started daily and then tapered off going twice a week, once back home after the 3 months had blood work done twice aweek and now its been 6 months i have weekly once my tac levels start behaving i will have them every second week, i see my neph once a month, i would be freaking out if i had to wait that long i like to know whats going on

[donnia]

I agree... this is way too early to be released!!!!  I am 11 months post tx and get labs monthly (I was before this little bump in the road).  I still have to go to clinic every 3 months until June, then every 6 months.

I would be very worried about this.... UNLESS you have an excellent neph.  If so, I would talk to your neph to make sure they will get regular labs.

[rookiegirl]

I'm calling the transplant clinic this morning to discuss about my visits.  This whole thing is worrying me.  I have been monitoring my blood pressure this week since they took me of the BP meds last week.  My BP is up again and I don't know if my worrying has anything to do with it.  Also, for the last 2 days now, I have a new pain on my side located above the incision.  Never had this before.

Thank you all for sharing your experience with the clinic visits.  I will definitely voice my concern about going 2 1/2 months without lab work.  God knows what my numbers look like now.

Also, my regular Neph has taken a new role and will no longer see patients and I've been assign to another Neph whom I've met several times at the transplant clinic.  This makes me angry too because my original Neph is awesome and I just love him because he actually care.  I hate this.

[Zach]

Sounds like they squeezed out as much money from your transplant (pre-testing, surgery and post-testing) as they could, so now they're releasing you.

[okarol]

Not to scare you, but pain near the incision can be a number of things, like lack of blood flow, a hernia (which is common after abdominal surgery), fluid collecting or an infection - so it is crazy that you aren't being followed more often. I would call the neph you like and make an appointment. How can you be "assigned" a doc?
As far as the labs, I agree with everyone about doing it more often. If your creatinine spiked up and you didn't know for a couple of months that you might be in rejection, the window period for rescuing your kidney may pass! That's ridiculous! We have a standing order to go to our local lab, they take blood and urine (EVERY month, even 2 years later!) and the results are faxed to the neph and the transplant clinic. They review them and fax us a copy. I requested this be done and the transplant team was happy to oblige. Keep fighting RG!

[Meinuk]

This has been my schedule so far:

TX  11/02/08
7 days in hospital
Clinic 2x a week for 1 month
Clinic 1x a week for 1 month

By February (2 months s/p TX)
Clinic 1x every 2 - 3 weeks

By April
Clinic 1x a month

By May (6 months s/p TX)
Clinic every 6 weeks

Now - keep in mind that (knock wood) so far my blood has been perfect (Creatinine 1.2 everything else normal); my drugs have been tapered, and we have been on top of everything.  I could not imagine my team cutting me loose after 7 weeks (even though I really wished that they would) - clinic visits take FOREVER.

Speak frankly with your transplant coordinator.  Write a letter with your concerns.  Ask for a written protocol.  With pain and a creatinine of 1.7 (and I am wondering what your immuno level is, as well as you suppressant levels) You have every right to be cautious and want to be seen by the professionals that performed the procedure. 

Does this center have a transplant social worker?  Have you spoken to them about this?  It is anxiety inducing, and anxiety is not good for you. 

You will always be the best advocate for your health.  You are the center of your healthcare team - if they aren't including you or informing you, then they aren't doing their jobs properly.

[pelagia]

My husband went to the clinic (1.5 hours from our house) once a week for 2 weeks after he was released following the transplant.  Then he began going to his local nephrologist.  His visits for bloodwork were once a week until the 3 month mark.  Then the bloodwork was done once every two weeks until the 6 month mark.  From 6 months on it's been once a month.  He sees the nephrologist less frequently (once a month early on, less frequently now).  The nephrologist's office faxes the results to the transplant clinic right away, they also call Stephen with the results and send him a hard copy in the mail.  Getting those numbers promptly is a very reassuring thing. 

[MiSSis]

It's much too soon for release and too much time in between bloodwork as others have also said.  I was 15 years post-transplant and still had bloodwork every 6 months (sometimes more frequently if something appeared amiss) and would go to transplant clinic yearly.  And as far as I know that would not have changed no matter how far out I was from my transplant had it not failed following a surgery I had 5 1/2 yrs. ago.  Let your docs know how uncomfortable you feel about this new schedule.  What's a little bloodtest to them?  And it a whole lot of peace of mind to you to have it drawn more frequently.  Good luck with this!

[rookiegirl]

Sorry I'm late to give an update on my Transplant Clinic issue.

I did call the clinic 2 weeks ago to find out I still need weekly labs and biweekly clinic visits.  I was so frustrated because this is not what the transplant Neph told me.  They claim it was a miscommunication, DAH!!!  Anyway, the weekly labs are now being done locally to a nearby lab which is only 5 minutes down the road.  This is so great because my transplant clinic is an hour away.

Today, I had my biweekly clinic and my creatinine is down from 1.5 to 1.4.  From the looks of things, I'm doing really good.  I pray this will continue as the days goes by.

[kellyt]

     Great news, Rookiegirl!

[Romona]

 

[okarol]

  Glad you followed up RG!

[paris]

Thank goodness you knew enough to question the clinic.  Think how many patients would just have gone along with the original schedule!  Scary!   We all feel better knowing you are getting your labs weekly.  It does sound like you are doing good.  Yea!    We'll be praying right along with you for things to continue to keep doing so well.