#23 ups and downs

I just received a call from mom, who was at the hospital getting her normal tests done.  Her creatine level is still too high right now, so they have ordered another Kidney Biopsy.  On average, biopsies are done every 3 months in a transplant patient.  This will be mom's second in a week.  She should be getting her biopsy as I type this, and then she will let me know if she is being admitted or not.  All of this could be the result of her medications that they haven't found the perfect level yet, or (knock on wood it's the first possibility) that it is a sign of rejection.  Most transplant patients have at least one bout of rejection.  However even if a kidney starts to reject, it does not mean the patient will lose the Kidney.
This back and forth thing is stressful.  Sigh.

On a lighter note, mom's donor is doing great.  He had his 2 week follow up just the other day.  The doctors say everything looks great.  He has minimal discomfort in the incision sites.  The only hinderance thus far is he doesn't have all of his stamina back yet.  He gets tired easy. Normally he works on multiple projects at once, but now he just has to nap.  This will eventually restore itself.

I talked to the transplant coordinators at the hospital and removed myself from the Paired Donation Network, and switched to being an altruistic donor.  They are currently testing my blood against everyone at the same hospital.  They did not have to draw any blood from me, as Hoxworth still had my blood at their lab from about a year ago.  I've read articles about how most hospitals get wary about altruistic donors, as they are afraid people with psychological problems are donating for the wrong reasons, or there is monetary exchange going on, which in the States is Illegal.  There are plenty of organizations that can help a donor.  Some people's jobs will still pay wages, and the National Kidney Foundation has programs for financial support for those who qualify.  I guess they are afraid someone who has low self esteem problems will think donating will cure their esteem, and often they are in the same mentality after surgery.  However, the coordinators understand why I want to donate, and have cleared me.  I should hear on Tuesday (give a few days) if my blood matches anyone at the hospital.  Fingers crossed!!!

#22 A Bit of a Scare

Deep breath and a sigh of relief.   Ok, yesterday (Saturday) mom went to the hospital for her routine blood draw and check up which is common after a transplant.  I was at Music Hall watching a kiddy concert with the little girl I watch.  I randomly run into my cousin and one of his daughters.  They ask how mom is doing and I report she is doing great, and how amazing this whole thing has been, yadda yadda yadda.  I return the little girl I watch back to her father (he plays in the orchestra and was also playing in the kiddy show).  I walk outside, and call my father while walking to the car.  He informed me that mom just called and that she was still at the hospital.  There was a problem and they have admitted her.  I could hear the tremble in dad's voice and it immediately made my heart sank and all the what ifs set in.  I knew it wasn't an emergency, like she's going to the OR or ER, or anything like that.  But it immediately made me think gasp.....rejection.  

She had a mini-unltrasound and a kidney biopsy.  They normally go thru the back, but since Fred (her kidney) is in the front, they stuck the needle thru her stomach (she didn't feel it) and grabbed a sample of the kidney.  Results........Her Creatine level was waaaayyy too high.  And that was due to the amount of Prograf she was taking.  

Ok so apparently immunosuppressant drugs are kind of like anti-depressants.  There is no way to know what and how much to give someone that will yield the best results.  Growing up, my best friend had all these problems with hyper-activity and attention problems, etc.  Turns out all the meds they gave her where what was causing her behavior because it wasn't the right stuff.  So that's what happened to mom, She started out being prescribed Prograf and was instructed to take 7 pills at 8am and 7 more at 8pm.  They then dropped it to six after her first blood draw.  Well turns out that it was still too much.  It was by no means anyones fault.  The doctors didn't do anything wrong.  She is not rejecting her kidney and everything is doing great, she's great, Fred's great.  This is why they monitor so frequently after transplant.  

I'm happy to report she is back home!!  

#21 Fever

Mom wasn't feeling too well last night, and into this morning.  She has a temperature of 100.1 and if it reaches 100.5 she must go to the hospital right away.  To run a bit of a fever at times is normal after transplant, the body is working hard to restore itself.  But this is scary to me as the typical over-analytical Virgo I am.  It is snowing snowing snowing outside and none of us have a 4 wheel drive vehicle.  Mom and dad should be able to get there no problem, but it's me who lives on top of the big giant mountain.  I might had to slide down 2 miles on a garbage bag to the bottom of it if worse becomes worst.  Which would be really fun normally, but not under the circumstances.
I will keep you posted as I figure out whats going on.

#20 "There's no place like home"

She's home sweet home, and she couldn't be happier.  Mom was able to come home around 7pm on 1-17-11.  She was in the hospital a mere 6 days and boy does she look and sound good.  I keep having to tell her to chill out, and just relax.  The doctors told her to take it easy, and I yelled at her that she's going to make Fred (her new Kidney) fall off.  ;-)  She was able to take a shower when she got home, which made her super duper happy.  While she was upstairs I started making a spreadsheet for her medication time schedule.  Woooweeee she takes a LOT of medications.

That's 32 pills a day, for basically the next year.  She's on antibiotics, immunosuppressants, and the list goes on and on.  She's agreed to do a drug study with the drug Velcade.  So today she had to go to the hospital at 6am.  She must go to the hospital multiple times for the next couple weeks for them to monitor how the new kidney is doing.  They draw blood, take vitals, amongst other tests.  And figured if she'd be there anyway she might as well help out and try a new use for a drug that might help pave way for future successful transplants.  This drug takes about 4 hours to administer.  Somehow though she was there for over 10 hours today.  She is happy to be back home.  

   If the donor and his wife hadn't done enough already. they brought my mom some soup, fresh fruit and muffins!!!!  She's addicted to fruit right now.  There are so many foods that she hasn't been able to eat for so long she's rummaging through everything like she was on a munchie attack.  Her other craving is for beans.  

    This has been such a crazy and emotional week that has just blown me away in every aspect.  It's fascinating how mom seems to have been shocked to life.  I had read about how the recipients feel so much better almost right away, but this is absolutely a-ma-zing!!!  And the donor is also up and about almost like nothing happened.  This has been such a cool experience to be involved in.  I want to give someone my kidney (I always have through this whole thing).  Though I know there are risks with all surgeries, the success is far greater than the failure.  

   I go to school for entertainment business, and soon will be moving to Florida to finish up my school, and one of the things I want to do with that degree is fuse it with my passions, and work on a Living Donor awareness campaign.  

#19 Down the Tubes

Sitting at the hospital, did I mention they have good food here?, with mom again.  She still is looking great!!!  She's been walking at least a mile every day.  10 laps around the floor = 1 mile.  Usually she makes about 17 or 18.  Now this is not at one time, mind you.  It is more like 1 lap an hour.  She has been taken off the IVs, which is good because her pole was really really squeaky and annoying when she walked.  She still has a catheter in, but the Dr said it will probably be removed sometime today.  Mom's bladder has shrunk, since she hadn't used it in 2 years, but it should bounce back to normal pretty soon.  Until then, short distance to the bathroom is a must.  The port that is in her neck will probably be removed tomorrow right before she is released.
So, mom is doing a drug study, with Velcade and Thymogolulin.  Those are two short term immunosuppressants to give the kidney an extra boost.  Each drug is administered 3 times, on opposite days.  Then she will have to return to the hospital Tuesday, wednesday, and friday to have her blood drawn and see the doctors.  They just want to monitor everything and make sure there are no signs of rejection.
Mr R is doing great.  He and his wife came to visit mom yesterday afternoon, and he walked all the way from the parkinglot to her room.  Impressive.  They brought mom flowers, which was sweet but mom said "Wait I should be bringing you flowers, you've already done the unimaginable".
Its amazing how well mom is.  I guess I didn't realize how sick she looked before, until how GREAT she looks now.  Its like someone shocked her to life.  I had read about how the recipients will immediately feel better, but I didn't know it would be like this.  Watch out folks, she is back and soon will be the Queen of the FRONT AND BACK nine.

#18 Guess what I saw?

This is what a Hero looks like.  This is a photo of Mr R as he is being wheeled out of prep and into surgery!!!!!  And his lovely supporting wife.  He was full of Happy Juice.  Yesterday he has a lot of shoulder pain based on the way they laid him on the table to remove his left kidney.  However, upon his release from the hospital today (YES HE WENT HOME TODAY!!)  he was feeling much much better, and looked great!!!!!  Dad is going to bring them dinner tonight!!

This is mom after her shot of happy juice before the surgery!!!!  They kept asking her all these questions, to which she responded funny out there answers.  I think it was the dope she was on.  

SO when I got to the hospital today this is what I saw!!  Look who's up and at 'em.  I hope she isn't over doing it.  

then shortly after she had her first liquid to drink in over 18 months!!!  

This made her really happy.  And since she has had tons of water, her favorite Coke Zero, V8 juice, and her least favorite Sierra Mist 0 Cal.  She's eating like a horse, (ok not probably to you, but after monitoring her intake over the past 18 months, she's on a roll)!!!  The food here is actually really good.  

We are sitting here in ICU, waiting for a bed to upon up on the Renal floor.  She should be moved at any time now.  The Liquid Gold is still flowing.  She's even felt good enough to help me with my homework.  

Channel 5 WLWT Coverage

Cincinnati's Channel 5 WLWT's Lisa Cooney donated one of her Kidneys to a stranger 10 years ago today (1-11-01).  This lucky gentleman, Andrew Theilan, happens to be the son of friends of my parents.   In order to help get the word out about living donations, Lisa came over to my parents house and featured mom and Mr R in a touching story.   Thank you from the bottom of our hearts.