Please pray.

I don’t even know where to begin. These last several weeks have been so hard to say the least.  I’ll try to explain everything, but just a warning—this is a super long update!!

First off, please please keep my sister in your prayers!  Over the course of 2 1/2 months, my sister has lost 12 pounds, and she continues to lose one pound a week. She has fatigue, no appetite, and upper right abdominal pain (and at times, this causes difficulty breathing in that it’s hard to get a full breath).  Her PCP referred her to a general surgeon because an abdominal ultrasound showed that the wall of her gallbladder was thickened.  The surgeon explained how all of the above symptoms can be caused by problems with the gallbladder.  So he ordered a HIDA scan to check the function of her GB.  Well, we received the results recently, and it was completely normal! Everyone thought for sure that her GB was the problem! So the surgeon next ordered an abdominal CT scan (it got completed today), and she also sees a GI specialist for the first time this coming Monday..

My whole family and I have been crying out to the Lord for strength to bear the unknown.  We’re scared and worried that something more serious is going on.  We keep praying for quick answers and that it can be something that’s easily treated.  But we also know that this, too, is in God’s loving hands.  And He already knows what’s going on which is a huge comfort.  We’ve been reminding ourselves that we just need to trust Him fully.  But it’s still hard to go through one thing after another.

Even though I receive a massive amount of IV magnesium every single day, my blood magnesium level always drifts back down which causes disabling muscle cramps and is known to worsen pain.. There’s a medication that my nephrologist says can help my kidneys hold onto magnesium, but it lowers blood pressure.  And since I already have low BP, I’d land in the hospital if I took this med.  But….my nephrologist has been thinking a lot this week about my case.  She spoke to one of her colleagues, and he told about this recent study on this medication—he read that if this med is taken at a very low dose, it won’t dangerously lower BP.  So, once she gets clearance from my PCP and cardiologist, my nephrologist has decided to start me on this med at a very low dose….she said I’ll need to have my BP checked several times a day while at home and be monitored closely.  She’s not sure if it will help me, but she wants to at least try..

I recently had a follow-up with my urologist, and we have decided that I should undergo that major bladder surgery before the end of the year so that I don’t suddenly go into “permanent retention” (that is, not be able to empty my bladder any longer). She said this surgery is very major and even more serious than performing surgery for bladder cancer, etc.  She no longer does these types of surgeries, so she referred me to pediatric urology at Doernbecher Children’s Hospital at OHSU.  She said they do these all the time and see very complex kids (like me).  Even though I’m older than 21, my urologist said I’m perfect for pediatric urology since I’m small.  She also told me that these pediatric surgeons are excellent and that they will take great care of me.  Later that evening after I saw her that day, my urologist had a routine “conference” with the whole urology department.  She asked the pediatric doctors if they’d be willing to see me, and one of the surgeons graciously said “yes” and that she’d be happy to see me. My consult with this surgeon is not until October 12th, though….she’s very booked out.

I’ll try to explain more about the surgery after I see the specialist, but I will say this…  My urologist said I’ll be in the hospital a long time and that the surgery unfortunately causes a temporary “ileus” (paralyzed intestine) in all patients.  Because I have GI dysmotility anyways from the mitochondrial disease, this issue will be much worse for me.. But, she has always said this surgery will be very helpful in the long run and will protect my kidneys from getting even more damaged (my urodynamics study I went through a while back was very abnormal)..

All my chronic pain continues to be managed by palliative care and pain medicine.  It’s been challenging to find therapeutic dosages for my pain meds because too high of a dose can cause bad side effects and too low of a dose won’t help at all.  They also don’t want some of my pain meds to make the pain “worse” (which can happen).  I had an appointment with my pain dr. today, and she said that small fiber neuropathy (which is what I have) is very painful and hard to treat.. I wish it wasn’t, though, because it’s so difficult dealing with that every single day on top of all the other pain (chronic intractable migraine, achy legs and upper back from the muscle weakness, muscle spasms, abdominal pain from GI dysmotility, bladder pain from my neurogenic bladder, etc.).  I wish I didn’t have to take such strong pain meds.. But at the same time, I am thankful for them.

I had a one year follow-up with my cardiologist, and heart-wise, everything looks good!  One of my pain meds is known to cause heart rhythm changes, so I had an EKG done during the appointment.  It was completely normal, and I’m so glad! He told me that there’s a new neurologist at OHSU who specializes in disorders of the autonomic nervous system.  I have POTS (postural orthostatic tachycardia syndrome) and other autonomic problems, so he referred me to her in case she has any other good treatment ideas.  She’s booked out until February 2018, though!! :O

On top of all that has happened, I found out last week that I can’t participate in the observational study (pre-trial) this year or the Phase 3 trial next year for this mitochondrial drug that is being tested.  I am so disappointed.. :'(  My mito dr. was so sure I could at least do the observational study, and he advocated for me so much, saying I’d be good for the trial, etc.  But the pharmaceutical company said I’m not a good candidate.  The reason why is because I had very high levels of copper in my liver (based on a liver biopsy back in 2015).  I told them that this has been treated and is not an issue anymore, but the company still said no because they think it could still be a potential issue in the future..  I’m just so disappointed. If this drug does get FDA-approved, my mito dr. said I could take it, but it takes years to get FDA-approved….it has to jump through so many hoops.

The days, months, years are passing by, and my mitochondrial disease continues to progress.  My doctors can see that.  I can see that. I know I look “good” on the outside, but too much is happening inside my body..  We were all praying I’d be eligible for this trial, but I know that the Lord has a better plan in store.  He continues to help me battle this each day.  And trial or not, my hope remains in Christ.

I love you all!