My one year checkup

My husband and I drove out to Mayo Clinic on Sunday for my 1-year transplant follow up, and the plan was to head back home Thursday morning, but this has been the "adventure" so far...

- Saturday night, started getting a sore throat, didn't sleep well

- Sunday, left Michigan for Minnesota around 7:30am for the 9-hour drive. Felt like crap, still had a sore throat, tried to sleep on the drive - not very restful! Went to bed exhausted, didn't sleep well, had to get up at 4:45am to be at my first appointment by 6:00am

- Monday, by now I know I am coming down with some kind of full blown "ick" - and I haven't even had as much as a cold in over a year. I get to the Transplant desk at 6:00am, go to the lab (where there are at least 100 people in the waiting room already, because it's Monday....after a holiday weekend.) After that, meet with a renal nurse (where I am a blubbering idiot because I am exhausted and feel like shit!) - I have a low grade fever at this point. Anyway, I have x-rays of my hip and back (had them schedule an appointment w/an Orthopedic doc while I am out here to advise me on a hip problem that I have had for years), then have an electrocardiogram. I am seriously dragging ass by 11:30am when I go to admitting for my out-patient biopsy. Of course, I have not eaten anything since 7:00pm the night before because of the procedure, so I am hungry, tired, exhausted, getting achy and stuffed up and slightly feverish. I am actually looking forward to this appointment because I can lay down and shut my eyes! They ask all the standard questions, the tech comes in to put in the "just in case" IV and totally botches it - twice - and has me screaming and bruised. They finally wheel me into the procedure room where a couple of nurses and ultrasound tech are standing by. The nurse inquires why I am wearing a mask, which I have been wearing all day out of consideration for others, but did not increase my comfort level one bit! I tell her I have come down with a cold - she takes my temp and it is over 100 degrees. After a call to my doc, the procedure is cancelled to not expose my kidney to a possible infection. Good call - we get back "home" and I sleep all afternoon and early to bed.

Tuesday - wake up feeling much better, don't have to be at my first appointment until 6:45am, done with appointments around noon, when I strap on a blood pressure cuff for an 18 hr BP test. Get lots more sleep.

Wednesday - don't start appts until 8:00am, with the last one at 4:30 with my doc, Dr. Gloor. He sees that I am feeling better and wants to reschedule the biopsy because there is protein in my urine and he wants to see if he can figure out why. I have known since summer that I have been spilling urine and assumed that the FSGS was starting in on my new kidney. I have not shared this with many people, because I figured "what can I do?" and hope that it will develop slowly like it had on my native kidneys. However, Dr. Gloor informed me that 1) it could be from other causes, like antibodies which they can treat with IVIg treatments and 2) even if it is FSGS, they have recently discovered a treatment that, in some cases, has stopped FSGS symptoms!!!! This is huge news, and when I have more info I will post it for the benefit of those of my friends here that also have FSGS! Besides the protein, my kidney function is great (creatinine fluctuates between 1.2 and 1.4) and I passed all of the tests with flying colors!

Thursday - had my biopsy in the morning, all went well, was a total slug all afternoon....it was heaven after working 10 - 12 hour days in the month of November and then feeling like crap earlier in the week!

I will be seeing Dr. Gloor Friday afternoon and post afterwards. So....this is to be continued.....!

What an adventure Jill. They really put you through the ringer!!

I hope the biopsy results all go well and they can figure out the cause of the protein spilling. I will be thinking of you.

I'm glad you are feeling better and hope all your news is good news.

Good luck!! My mom said she loved Dr. Gloor by the way!

Beth

He is such a great guy. He makes sure things get done...he had two phones to his ears making sure they scheduled my biopsy for early Thursday morning. I learned last year that he doesn't always schedule things "by the book", but rather for the patient's benefit. I had several Mayo staff tell me "Dr. Gloor doesn't always follow the rules, but he takes such good care of his patients, plus he's such a nice guy, that everyone works with him to get things done." I have great confidence in him and am so happy that he is your mom's doctor too!

Jill, I'm glad you're feeling better and your tests went well!

Hi Jill - wow I had no idea they would spend so much time! Jenna just has labs and biopsy scheduled for her one year.
Jenna has had protein in her urine ever since the transplant, and our neph speculates that it from her native kidneys. They are going to have her do a 24 hour clearance to get an accurate measurement of the amount of protein (labs only say it's present, but not how much) and he said it most likely is not an issue.
Good luck with the rest!

Jill, like Jenna my nephrologist believes the protein I have in my urine is also related to my native kidneys. Best Wishes! I hope all goes well.

Great news! The protein is caused from antibodies - my FSGS is NOT back!!!! WOOHOO!!!

We get to go home tomorrow - we will leave early and hopefully out drive a nasty winter storm that is heading this way. Dr. Gloor is sending orders to my neph at home for one round of IVIg treatment. Apparently, because they lowered my antibodies for the positive-crossmatch transplant my body was tricked into thinking it needed to produce more antibodies. They found they can pump me full of antibodies with IVIg, tricking my body back into thinking it can now back off on antibody production, thus eliminating my protein problem. Crazy, I know! I tell you - I am so thankful for Dr. Gloor and his team and all of the research and learning that they do out here. I am REALLY thankful that the FSGS is not back. You cannot imagine the load that is lifted that I have been carrying these last few months. I thought I was a woman of faith, but I learned that I need to really work on that and acknowledge that there is CONSTANTLY being research done on kidney disease and treatments, and I hope that can give hope to all of you, my friends who suffer with the physical, emotional and mental stress of this disease. Thank you so much, too, for your support, love, and ongoing words of encouragement!!!!!

Such wonderful news Jill!!!

I am so glad your one year went so well, and I look forward to reading about your 2 year!!

Doing a HAPPY DANCE Here Jill! Makes me cry - I am so happy for you!!

Doing a HAPPY DANCE here too Jill

WOOHOOO

Great News, Indeed

That's awersome news Jill! I'm so happy for you.

Before you break out the champagne, keep in mind that antibodies can destroy a kidney the same way focal segmental glomerulosclerosis can, so both are still dangers, although more can be done to try to lower the antibody damage to the kidney, manifesting now as proteinuria, than to stop FSGS. Just make sure the antibodies can be reduced before you let your guard down.

Jill, sorry this is a little late but i havent been on the pc as much lately, Just wanted to say that this is AWESOME news and you have every reason to "break out the champagne" my friend.

Cheers to both you and Jim.

Stauffenberg, you.........you...........you really.......nevermind, i better not say it $:-\$

Sometimes ya gotta say it... Stauffenberg- Have you ever heard the saying, "If you have nothing nice to say, don't say anything at all?" It pretty much applies here... Why can't ya just say something positive, and move along one time?

he's a "glass is half empty" kind of person.

Wow, a year already!! SO glad things are going good

Jill you know I hope that everything continues to be good and I hope nothing but the best for you. I don't think stauffenberg meant to come across as being negative, I think sometimes we don't want to think of the coulds and could nots.

I think you are fine and everything will be good. All your numbers appear to be doing well. I am interested in this new treatment for FSGS, I too have FSGS.