Adventures with a Little Tea Pot / Mourning my Morning Coffee

I had a consult with a holistic kidney doctor last week who gave me quite a few recommendations.  Some of the supplements I am going to run by my doctor before trying.  Some I'm a little weary of anyway.  I'm just not sure about taking melatonin up to the point that I get a "melatonin hangover" and then backing off to find the appropriate dosage.  That just freaks me out a touch.  Mostly I wanted to get an idea of the good and bad foods and other natural methods of helping my kidneys stay healthy. 

Most of the good foods I already eat and love...berries, cherries, apples, grapes, celery, garlic, yellow onions, red onions, green peas, cauliflower, grass fed meat (in small portions), organic blue corn, curries, ginger, lowfat yogurt, and green tea.  Mmmmmmm....garlic. 

The hard part is the foods I should avoid, and number one on the list is coffee.  If you know me at all, you know that every morning I can be found either 1) at my desk with a cup of coffee within reach or 2) on the patio before Morgan wakes sipping a cup of coffee and listening to the birds.  Now since the whole kidney thing started, I have made the noble switch to decaf.  Giving coffee up altogether...now those might just be fighting words.

Ok, we'll back up.  I am willing to do ANYTHING in my power to increase the odds that what I went through at the beginning of this year does not happen again.  There are studies that show coffee can increase proteinuria.  I will even admit that if I have multiple cups of coffee without drinking any water, I see an increase in bubbles...pee bubbles that is.  For the people who aren't sporting a knowing smile at the moment because you've never had the pleasure of spending time examining your urine in hopes that it will just look normal for once...more bubbles equals increased proteinuria.  It's just that I please want to have a cup of coffee in the morning.  I really like the taste of coffee with just a splash of cream.  It's good, and it is a taste I associate with both motivation and relaxation if that can even be possible. 

Some of you may think I'm crazy, but I am going to continue to have my coffee.  I will limit myself to no more than 1 cup per day with an occasional second cup only if separated from the first by a bottle of water.  So there is my vow.  Now I have to figure out a way to fill a couple more cups.  This is where the recommended foods come into play.  I've decided to give tea a go.

Green tea is the one everyone keeps telling me to drink.  I think if you like the taste of a fresh cut lawn diluted in some water, green tea is where it's at!  While I do get excited about rocks & soil, grass I prefer to smell rather than taste.  Besides, it makes me itch if I roll around in it.  I'm willing to do anything though, so I did a little research,  got a cute little red tea kettle, and ordered a few different teas.  You'll note there is a strainer. I meant to go pick up a tea ball infuser, but I forgot. I wasn't going to let a little thing like that stop my efforts at kidney therapy, so I pulled out the strainer, steeped the tea in a measuring cup, and strained it into my tea cup. 

Remember the grass comment? I mean it even looked like I was brewing up a cup of lawn clippings.

Yep, tasted like grass in a glass.  It's for my own good, right? Yes, good for me.  Ok, whining over.  I'm switching, I'm switching already.  Ummmm...yum? At least I know I like chamomile. 

Nah, Nah, Nah, Nah....Nah, Nah, Nah, Nah...Hey, Hey, Hey...Goodbye

Today was the last injection of Acthar.  I've been reading up on cortisol, you know, just in time to go off of this drug.  These injections are similar to the Prednisone I took earlier this year except that the Acthar acts one step earlier in the chain. I like to think about it like this...

 Prednisone from what I understand is cortisol.  You have to taper off of Prednisone, because you need to give your body a chance to start making its own cortisol after feeding it manufactured cortisol.  I was on the relatively high dose of 60mg per day, but even the little packet of Prednisone you are prescribed for a chest cold has a taper schedule.  Acthar on the other hand is an injection of ACTH (a hormone usually produced in the pituitary gland) which tells your body to produce cortisol.  Among many other things, elevated cortisol acts to suppress the immune system.  This is the reason I was prescribed Acthar.  It is an expensive one.  This one little vial represented 5 doses when I was at my max dosage.

Each month I received two vials which my insurance covered in full.  The cost of the two vials combined is $52,000.  No that is not a typo.  That would be $5,200 per injection.  Needless to say I couldn't have paid for the 4 months I was on this drug out of pocket.  Luckily I only had to do 2 injections per week.

I was also lucky enough not to get a great big moon face with this one.  I think it did help me gain back some of the weight I lost while swollen and on Prednisone which is a good thing.  Wait...what did I just say? :)

Just a little trip to the ER

As it happened, I got another virus.  I've had an upset stomach and a very mild fever since a few days before I went to Mayo.  Actually, my temperature was the only thing that wasn't normal when I was there.  I finally felt bad enough to take a little trip to the ER.  One benefit of being on immunosuppressant drugs was being sent to a smaller, private waiting area.  I was thankful not to have to wait in the usual holding pen with the dozen other patients and their germs who were there with me that evening.  Boy was this a familiar sight.

Notice the giant wad of self-adhesive bandage wrapped around my right hand.  The superstar nurse decided to draw one of my blood cultures from a vein just below my pinky joint.  I have a nice little bruise to account for it.  At least he did the other further up my forearm and then used the hole for my IV.  For the reduction in the number of holes he put in my arm, I will forgive the bruise.  Two bags of fluid, 2 fresh holes in my arm, $100, and 5-1/2 hours later, I was released to go home with a probably just a stomach virus.  My numbers all looked pretty good...no different from the previous week's numbers at Mayo with the exception of a slight increase in my BUN.  That is pretty typical of when I get dehydrated.  I'll chalk it up to good times while being immuno-compromised. 

Overdue Mayo Update

I saw Dr. Fervenza for a follow up appointment on July 30th.  My parents came out to stay with Morgan, and Michael and I flew up to Rochester, MN for a long weekend.  We were able to visit a friend from college and meet her adorable little one (miss you E!).  We also got the chance to meet two awesome ladies who are dealing with kidney disease.  It is always funny to meet someone in person after talking with them so much online and on the phone.  I feel like I've known these girls for a few months now, but on the other hand, I technically just met them.  Social interaction and making new friends when I was growing up didn't involve a computer.  It is a new experience for me, but one I am incredibly thankful for!! 

Dr. Fervenza was pretty excited by my labs.  He called them beautiful actually and kept grinning and crossing his fingers.  My 24 hr clearance results came back at 69mg.  I've gotten back spot rate checks in the last couple months that have been in the 80mg range, and that has been really exciting.  Anything below 150mg per day is perfectly normal.  Those were just spot rate checks that use a little math to calculate the 24 hr rate.  This 69mg result was the actual measured amount that came out of my body**.  Relief doesn't cut it.  I was spilling 27g at the end of March.  That is 27,000mg and 3 orders of magnitude larger!  My kidneys have recovered, and I am in complete remission.

I'm beginning a full blown medication taper now.  I am able to drop the lipitor, prilosec, lisinopril, and bactrim outright.  I am also taking too much Prograf and can drop to 6mg per day.  The injections I can stop in two weeks.  My discontinued medication box is overflowing, while my active medication box is nearly empty.

 

 

If my labs remain stable for the next 3 months, I can begin a 1mg per month taper of the Prograf.  This will be the tricky part.  If I relapse during the taper, the doctors can hopefully figure out the lowest does of Prograf to keep me in remission.  Granted staying on a drug that can itself be nephrotoxic for the benefit of remaining in remission for proteinuria is not optimal.  We'll cross that bridge and weigh those pro & cons when we get there I suppose.  For now, the important thing is that I am a completely normal person, and I have the lab results to prove it :)

 

 

 

 

**Side Note:  It was actually explained to me that the lab takes your, um, "clearance" and shakes it up in your little jug to get it nice and homogenous.  They then take a little sample, run their tests, and calculate the clearance using the total volume of the sample you provided to them.