A New Doctor, A New Plan of Action

After moving to Indiana in August of 2017 I immediately called to make an appointment with a local Nephrologist.  With a specialist you typically can't just make your own appointment, you have to have a referral from another doctor.  In this case they wanted a referral from my local family practitioner. That was going to be a problem because my family practitioner was back in Georgia and I had not set one up in Indiana yet.  So I got the scoop on what they needed to verify that I indeed did qualify for Nephrology and wasted no time getting all the information to them.  I am so thankful that they took the time to listen to me and let me provide the documents they needed.  We were off to a good start, however, I had to wait until December before I could get my first appointment with my new doctor.

Meeting my new Nephrologist was good.  My mom came with me as she had previously worked in the dental field and my new dr had been one of her patients.  They exchanged greetings and I told my history of Auto Immune disease and treatment as well as how I was diagnosed with a CKD.  I took all of my previous Nephrologists visit notes and lab results to her.  She quickly read through them and asked me a few more questions. I had just seen my new Rheumatologist a few weeks prior and she had done a normal set of labs on me so my new kidney doctor read those labs.  My creatinine level was 1.53. The last thing my previous Nephrologist had said was that if my creatinine levels climbed a little higher he would be putting me on a steroid called Prednisone. My last Georgia lab creatinine was 1.3, so it had gone up a bit.

Before my doctor felt comfortable putting me on a steroid therapy plan she wanted to send me for another kidney biopsy.  This time I went to the IU Hospital for my biopsy.  Similar to my previous biopsy in Georgia I was taken to the Cath Lab, dressed in a hospital gown, open in the back, and led to a CT scan room.  The doctors introduced themselves to me, the nurses and surgical techs made sure I was comfortable as they positioned me on my stomach.  IV meds were administered that made me very relaxed, but I did not fall asleep.  I was awake for the whole procedure.  During the procedure I was put into the CT scanner and brought back out.  The doctors numbed my back, made an incision and used a biopsy needle to retrieve samples of my kidney. I was asked to take deep breaths and remain very still.  The procedure was quick and mostly pain free.  I was sent to recovery for 8 hours to rest on my back.  This time my lab results were all good, my hemoglobin levels remained high and I was able to go home after the mandatory rest time.

My new doctor pulled labs again in January and my creatinine had climbed to 1.90.  We talked about starting a few drug treatment plans to slow the progression of kidney decline.

For one thing she wanted to try me on a blood pressure medicine to help control the pressure in the kidneys.  Usually this is the first plan of treatment.  My Georgia Nephrologist and I had talked about being put on a blood pressure medication, but at the time my blood pressures were very low, too low for the medication.  Now the disease had progressed and my blood pressure was quite high so I agreed to start the medication.  The first one I tried really spiked my creatinine level, so I was immediately taken off of it and put on something else.  The second blood pressure medication really did a number on me physically.  I was so dizzy, my mind was very confused and I could hardly concentrate.  I was in a fog, confused and not even able to drive my car.  After waiting about two weeks for the symptoms to pass I finally had to call the doctor and get another BP med.  My third medication did not seem to control my blood pressure at all and the doctor finally decided to change my prescription one more time.  The 4th med was working a little better, no side effects!  Great!

In combination with the blood pressure medication, my doctor wanted to start me on a 6 month steroid therapy.  I would be getting an IV infusion 3 days in a row every other week of Medrol (Methylprednisolone).  I would get the infusion every other month for 6 months and take the tablet form of the steroid every other day.  


Methylprednisolone is a pretty powerful steroid that comes with a serious list of side effects.  The biggest side effect that I had to deal with was Cushings Syndrome.  Cushings makes your face blow up like a balloon, sometimes call Moon Face.  Here are a few pictures of me with my moon face, not pretty!




This was me before Kidney Disease :/



I also got an extra chin with the Cushings, that when I laid down cut my airways off a little and caused me to compete with my husband for the loudest snorer in the house award!

Methylprednisolone also gives you a lot of energy when you first start taking it.  It kinda makes you feel like you drank quadruple espresso shots after drinking decaf your whole life.  ZING!!

With the ZING comes shaky hands, rapid heartbeat, insomnia, weight gain, thin skin, fragile capillaries (one burst in my eye), easy busing and easily becoming irritated.  Fun Times! 

I was only supposed to be on this drug for 6 months, but coming off of them caused some pretty significant changes in my creatinine (from 2.6 to 3.4) so my doctor had me stay on them for another 3 months and wean off of them a little bit slower.  I was so happy to get off of Methlyprednisolone and my hope was that they worked well and I did not have to do them again!  Unfortunately, my doctor was disappointed that my kidney function continued to decline on the steroids.  This month, October 2018 I officially entered stage 4 kidney disease.  My kidneys are working at a level 27%.   My creatinine had climbed to 3.63 by the end of August, then droppd to 3.0 in September and 3.48 in October.  She felt another immuno-suppressant drug would just cause more unwanted side effects and be way harder on my body at the point I was currently at.  So it was decided that my next therapy would be Kidney Dialysis and to get the ball rolling on a kidney transplant.



Disclaimer:  I am not a doctor.  I am not a medical professional.  NO information on this site should be used to diagnose, treat, prevent or cure any disease or condition.


Comments

  1. wow Jodie...I forgot how good you are at explaining details.....these were so well written!! I am so sorry you are going through this, but I know whose you are......and He's going to use you mightly through this journey.....we would love to see you guys and please let us know if we can do anything to help besides Pray that our Faithful Father paves the way for your treatment. love ya kiddo!!!

    Karrie Laskay

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  2. Jodie, have you meet with a dietitian yet? There are definitely foods you should be avoiding at this point. Rick did manage to keep from dialysis for 5 years by watching his diet. We believe what finally knocking his down was that he started taking Advil instead Tylenol for aches and pains. Stay away from Advil products for sure!

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