This Past Week

I Think I’m Out of the Top 5% IMG_5451
Last week I was bragging about only being in clinic for one day.  This week I’ll brag about being in clinic 4 out of 5 days.  I’m actually not too sure why I wasn’t in clinic on the 5th day.  While Dr. Nelson didn’t say this specifically, I think I’ve fallen out of the top 5%.

Monday started out like any other clinic visit.  Well actually it didn’t.  Monday represented the first day I drove myself to clinic.  Usually I catch a ride with Lindsey or a “neighbor”.  However this Monday I felt well enough to drive and wanted to experience some freedom.  Yeah me!  Once in clinic, they took my vitals and drew my blood as usual.  After a short wait, Dr. Nelson came in to see me and said things were looking good.  My platelets were down a bit, but my WBC and Hemoglobin were up.  All my counts looked good, we just needed to see my CMP, which wasn’t back yet.

Ah, my CMP.  The harbinger of bad news.  Dr. Nelson came back to my room and told me I wasn’t drinking enough.  Actually I was drinking the recommended amount of water, so what was going on.  My Creatinine was 4.45.  Normal is 0.8-1.3.  Some people require dialysis starting around 5 or 6.  Dr. Nelson said 4.45 was actually enough to admit me, but thankfully we didn’t go down that route.

The Cause
My immuno-suppressants can be hard on my kidneys and that is what was happening here.  Dr. Nelson had a very well thought out, medical and technical explanation of what was going on.  I’ll just say my kidneys were unhappy.  I received a liter of fluid to help flush things out.  I was also told to stop my immuno-suppressants and come back on Tuesday.

On Tuesday it was the exact same drill, except I saw the Nurse Practioner.  I should mention that Dr. Nelson was supposed to be on vacation this week, but he came in on Monday to see a few patients and he gave instructions to be called with my results.  He is definitely very involved in my care and I appreciate it.  The CMP came back but unfortunately the Creatinine didn’t come down by much.  It was 4.25.  So another liter of fluid and more meds to stop.  This time I stopped the Acyclovir (anti viral) and went down to 1/4 of my normal flucanozole (anti fungal) dose.  For some reason I got Wednesday off, but had an appointment for Thursday.

As you might guess, I got a liter of fluids on Thursday.  My Creatinine had come down, but not quite enough.  It was 2.95.  The nurse practitioner again called Dr. Nelson and he instructed that I start back on my immuno-suppressants but at a smaller dose.  This is necessary because the immuno-suppressants keep me from having full blown GVH (Graph vs. Host disease).  We will eventually wean me off the immuno-suppresants, but that is supposed to happen much later.  I am to alternate between the 2 drugs I take, so I’ll take the tacro on one day and the siro on the other.  Also my tacro was reduced from 6mg to 1mg.

Now with the creatinine trending in the right direction, I ran into another problem.  The NP said it was perfectly normal, but to me dropping counts are never a good thing.  My WBC was down from 3.6 to 2.7.  My hemoglobin from 11.2 to 10.3 and my platelets from 127 to 88.  88!  When I relapsed they were 104.  I told myself the NP said it was ok, so I didn’t worry to much about it.  Afterall, there were no blasts in my blood and I think there would have been some if my bone marrow really was failing again.  I left clinic with an appointment to see Dr. Nelson on Friday (again on his time off).

Dr. Nelson spent a lot of time with me as I had a lot of questions.  He reassured me about my counts and let me know that everyone goes through a “lull”.  He also specifically said not to worry about the result as he needs me to maintain a positive attitude and he’ll always let me know if there is something to worry about.  He showed me my results one by one and explained my BUN, Creatinine, CRCL and GFR.  It was really quite educational.  My creatinine was down to 2.45, but I again received 1 liter of fluids.  I also got 4 mg of Magnesium, as that was running low and has been on and off since transplant.  After 3 hours of infusions, I was heading out the door for the weekend.  Of course they reminded me they are open on the weekend, so I could always come back.  No thanks, I think I’ll stay away until my appointment on Monday.

My Blip
So there you have it.  My little “blip”on the radar.  Probably one of many that will occur as recovery takes months.  The plan is to slowly increase my meds again and find a happy balance between the meds I need and keeping my kidneys happy.  All the while avoiding dialysis and admission.

Everything Else
Other than the above, it’s been a good week.  I still have nausea, but I can tell my stomach is getting better.  I still take naps, but can tell I’m getting more energy.  The problem being my immune system is still weak, so even as I feel better, I can’t really go out and do anything.  To do so would be risking getting a virus and in Dr. Nelson’s words, “You’d probably survive it, but you’d definitely be admitted and you would be in a lot of pain.”  So with that in mind, I’m staying inside.

Shhhh, Don’t Tell Lindsey
As I start to feel better, my hygiene habits are improving, but overall it’s hard to find motivation to do even little things.  I’m lucky enough to wear pajama pants 24/7 (unless I’m going to clinic) and showering is no longer a daily thing.  Heck, even tooth brushing isn’t a daily thing.  I would simply say I’m not motivated, but then someone will comment that they aren’t motivated too.  Let me tell you, this is completely different.  This is something you wouldn’t understand if you had not gone through it.  It’s both mental and physical like the task you have to undertake will be the hardest thing you have to do in your life.  Heck, sometimes I have to talk myself into getting off the couch to go to the bathroom.  Again, it’s a different kind of feeling.  A totally worn out, haven’t felt good endorphins in weeks, what’s the difference really, kind of feeling.  Even having dealt with depression in life, I haven’t felt something like this before.

A Duck Dynasty Prayer
Father God, thank you for strength.  Thank you for food starting to taste normal.  Thank you for the ability to go up and down stairs.  Thank you for naps and all the little things I’m provided with.  Thank you for a rock solid smoking hot wife who somehow handles the weight of the world on her shoulders and keeps everything running.  Thank you for moms, mother in laws, and step mothers who check in and help out.  Thank you for all you’ve blessed me with, as those are the things that I want to concentrate on.  Thank you for another day.

9 thoughts on “This Past Week

  1. Oh boy. That sucks 😢 I’m very glad your kidneys are feeling better. I about had a heart attack reading those numbers😳 Yikes! I too am in sweatpants or PJ pants 24/7. You are in good company! 😉 Stay strong friend. Let me know how I can help. Trust them that they’ll let you know when to worry. That’s your biggest strong suit Mr. Culross… Your positive attitude and drive. You are an awesome soul❤️

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  2. Well now—-I don’t know anything about kidney numbers, but I do know that God working through Dr. Nelson is keeping me positive that we are always learning more and more information on this journey! I am very grateful for this post so that I am caught up before I see you soon, and so that I don’t drive you crazy with questions! 🙂 We are at day +36! I am with you always!!!!!! Love, Mom

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  3. Your rock solid smoking hot wife would like to have your teeth brushed at the end of every day. Consider it a kick in this cancer’s face every time you do it. Then go find her (or call her to come to you); give her a smoking hot kiss; then tell her you love her. She needs to hear that – at least once a day. Hang in there. God IS in control. He does all things for our good and His glory. Oh, and one more thing … DIE CANCER. DIE!

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  4. Rob, I pray for you everyday in my morning devotions to Our Lady Untier of Knots. It’s a Catholic devotion to Mary where we give her the “knots” in our lives and ask Her to untie them. She IS working on your BIG knot, and I am confident that She has presented her request to Her Son Jesus. She is like any other mother who wants to lend us a hand along with all of the other mothers there with you who are being so helpful. Stay the course, Rob! Our God is a MIGHTY God!

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  5. WOW what a week you have had! I am keeping you and the rest of the family in my prayers! You along with God, & your loving family, & ALL those smart wonderful doctors have got this. Working as a large team you will get through this. I just know your Mom is anxious to get back up there to help out and spend some time doing what she does best, HELP! Praying you are able to enjoy some Thanksgiving time and good food. Keep up the GREAT attitude we all love hearing from you and how you are doing.

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  6. Dear Rob: I’m sorry that you fell out of the top 5%. Where does that put you now — maybe at 195%? Still better than 100% of the rest of the world, with a lot of room to spare.
    The reduction in your Creatinine is amazing, even considering the infusions they gave you! I had to work to bring down my Creatinine after I came off chemo March 4 — funny how we remember that date! I considered a drop one-third of what you’re seeing a rip-roaring success. What I’d like you to know is that kidneys do recover. It’s slow, as in months, but it’s steady.
    I was thinking about Matthew 5:44, and the inferred meaning of Jesus asking us to pray for those who persecute us. Clearly, Jesus asks us to do that because it not only does us good, but it also does the persecutor good. It’s one of a number of scriptures demonstrating the beneficial impact of prayer for others. And that’s the point I’m leading to, but I want to broaden it.
    What I want to say is that we, your supporters, can give you not only prayer, but also other kinds of spiritual help that you need in a much more specific way. I encourage others to do this, or just try it if you’re unfamiliar with it.
    I’m referring to your “totally worn out, haven’t felt good endorphins in weeks, what’s the difference really, kind of feeling”. We can give you something specific to fight that through God’s power (not our merit). It’s simple, and simple things in everyone’s day can be used. Here’s how. This morning I didn’t want to take my morning walk in cold and windy conditions, and I didn’t want to say my morning prayers. But I thought about your fight, and asked God to accept my aversions, completely transform them into motivation, and bless you with that motivation. God can do that, because God can do anything, “for all things are possible with God” (Mark 10:27). It is His nature to want to care for us and bless us. Also, as I received Jesus’s Body and Blood this morning, I thought of the Life He promises through that (John 6:53), and I prayed to unite your disease with that Life. God bless you, nephew.
    Love, Uncle Claude

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  7. Rob, I’ve so enjoyed following your journey – and SO can relate and remember many things you’re going thru — and the drug names — oh how I’d forgotten about Acyclovir! Anyway, yes, days can be long and difficult but no matter how long it takes (almost two years for me to be ‘drug free’) it’s so worth it! While weaning off the meds, it wasn’t my kidneys, it was my liver that kept me going back on the drugs, weaning more slowly — but again, whatever it takes — God’s time, not ours!! Happy you’re doing so well!!!

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  8. Well just when I started bragging to all of my friends that you were in the top 5%, you have to change it up on me😉 I’m glad your creatinine is back where it should be and I’m praying for all the other numbers to fall in line as well. You are so strong- even with all your body is going through, you are able to find humor in the daily process of healing and also write about what is good in your life right now. I know this will be an extra special Thanksgiving for you Lindsey and the kids. So thankful for you as my brother.

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