Biopsy went well and now waiting for results.  My nephrologist did talk to a member of his team with lots of lupus experience and that person was not to worried about the lab results.  He was told that I could have elevated markers all the time.  I should know more when I see a dermatologist today who has experience with lupus as they should be able to tell if my chest discoloration is lupus or something else.

The whole biopsy experience is always a test of patience but I was prepared for it this time.  Arrive at noon to get checked in and assigned a bed for post biopsy recovery, don’t get a bed until 2 pm.  My nephrologist comes in as they are putting in the IV says I will get moved down to ultrasound soon.  I was transported down at 3 pm on a bed and wait in the hallway for another biopsy to complete at about 3:45.  Procedure goes quick, they numb the skin and then move the needle down continuing numbing until the gets to the biopsy area, after that they make a small cut in the skin using an X-Acto kinfe.  But when the put in the hallow needle i could still feel it so they pumped some more numbing agent in that needle but I diffidently felt the biopsy clicker grab the sample, so they told me to flinch at the “click” of the grabber… They grabbed another sample with less flinching.  I told the doctor prior that the most painful thing last time was the pressure on the biopsy site where they push on the area for a few minutes before the put the bandage on so this doctor was very gentle.   I was back up to my bed by 4:30.  The nurse didn’t get much details on what I was supposed to be doing in the bed so I gave her what I had learned from asking the doctor, i.e. don’t eat right away (I’d had no food or drink since about 7 am), lab work to see hemoglobin at 2 and/or 4 hours to decided if I headed home.   At about two hours I told her the same and she called the doctors (I think the biopsy person was off shift) and she said she would pull the labs and if they looked good I could go home.  That lab pull was the only use of the IV.  The results came back good and she told me to call my wife for pickup at 8:30 pm.  I was discharged at about 7:20 and I walked downstairs to my wife and headed home for some rest.  The discharge paperwork was basically ok to shower with bandage on then change, let the scab fall off naturally, and of course call someone if I felt bad or there was a good amount of blood in urine.  I never say any blood streaking in the urine but they said its common so don’t worry about a small amount. I don’t even really see a scar just a closed area from the biopsy site so I’ll start bathing again on Tuesday (as I prefer) rather than showering.

Yesterday was my first nephrologist visit after my most recent biopsy (at 10 months post transplant).  He doesn’t think that the lupus is active but he says there are three concerning markers:
* Creatinine up to 1.5x from 1.48.  (I hope this is a fluke)
* C4 compliment is still out of range. (Lupus would be C3 compliment – that level is normal.)
* Biopsy shows about 15% scaring on the new kidney (that might be same as last biopsy).  Today I asked for a copy of both results so I could read it over in case I have questions at my visit in two weeks.. The scarring could have existed in the donor kidney or be a marker of slow rejection or drug effects.He wants to do some new special dna blood test that will see rejection.  I think it’s the AlloSure test. It would be dawn in home as the lab companies are not yet doing it, someone would come by to draw the blood.   He was happy I’m still on Medicare as they will pay for it, but private insurance might not pay for it now.  He feels it will be standard in about three years all the insurance plans will pay for it.

He is still worried about high calcium as it’s not going down – it’s at about 10.4 where 10.2 is top of high range. The high calcium can also clog up the kidney.  We increased Sensipar to 90 mg but they don’t think that will solve the high calcium as 60 mg it should have had more of an effect.  He wants be to go to Otolaryngology Head and Neck Surgery  (instead of endocrinologists) and so I guess that would start to process of removing the thyroid.

Thank you for providing such concise information about your post tx experiences.  I know they are different for every patient, so it is really interesting to hear about your personal experience.  …  Good luck to you!

Thanks, I find it sort of interesting how happy I’m to share this info so others can have insight into one transplant experience.

I’m pro retaining my rights to privacy, i.e. I worry about privacy risks as everyone voluntarily pays to give their DNA to commercial databases (and how likely my DNA information has already been captured by extended family members adding their info to the database), and I’m happy that people try to build our rights because they really, really care about privacy.

Yet on this side I’m happy to share everything as well all benefit from the open conversations on this forum.  It really helps people and community to read about others experiences even if you think you will never need information.  I guess it helps that I am really happy to share both medical and financial experiences – in both cases people can really benefit from sharing information and learning from others.

I have to say since my introduction in March of 2014 ( http://ihatedialysis.com/forum/index.php?topic=30886.0 ) I’ve learned a lot and benefited from everyone else’s contributions.