Tuesday, May 31, 2016

Notice: New Website

Just another short reminder that my blog has moved! :)  I will no longer be posting here on this website.  Just wanted to clarify as there have been new readers signing up on this blog.

I WILL however be blogging on my new website--- painwithpurpose.com :)

On the new site, there's a little area on the right where you can enter your email address to receive updates.  But, BE SURE to activate your subscription (you'll hopefully receive another email to do just that), otherwise you won't receive any new updates!

See you at painwithpurpose.com! :)

Kerissa

Monday, April 18, 2016

My blog is.....moving!!! :)

GUESS WHAT?!? :D

My awesome brother Curtis made me a website with my own domain which means I no longer have to use Blogspot!! :)  He put together this new website for me as a 2015 Christmas gift.  It's amazing and such a lovely writing spot.

Ready to see what it looks like?!  I love it. :)  And I'm sure you will, too.

Click this link:

~~~~~~~>>>>> www.painwithpurpose.com

For those who follow my blog through email, you can still do that with my new site! :)  Just go to the right side of my page and find the little box that says: Follow by Email.  Enter your email and be sure to check your inbox!  You'll need to activate the subscription.

So long, Blogspot!  I'll try to post a new update on my new page later this week. :)


Wednesday, April 6, 2016

Keeping on.

Last Wednesday, I had a follow-up with my pain dr.  The IV ketamine I was able to receive in the hospital last month helped the nerve pain so much, but as soon as it was stopped upon discharge, the pain ramped up again. :(  Unfortunately, getting IV ketamine in the clinic is not an option currently due to insurance issues, but my pain dr. is working on this!

In the meantime, if insurance pre-authorizes it, I will be switching to an even stronger, anti-convulsant pain medication.  I'll also be getting another bilateral lumbar sympathetic nerve block which is a procedure where the doctors inject anesthetic medications around the sympathetic nerves to temporarily "block" them and try to decrease the nerve pain.  She's booked out so it won't be until the end of May.  My pain dr. also referred me to Palliative Care, and I now have an appointment with one of the palliative doctors next month.

On Thursday, I saw my nephrologist.  She was hoping my blood pressure numbers were high enough so that I could start a medication to help my kidneys hold on to magnesium, but unfortunately, my BP is too low.  Putting me on that med would dangerously lower my blood pressure, and I'd land in the ER.  Given how much IV magnesium my body needs, my nephrologist doubts I'll ever be able to stop the infusions entirely. :(  I'm disappointed that I can't even cut back on my daily IV fluids with Mg (it's no fun lugging around an IV pump for 3-6 hours every day), but I know God's timing is best.  She is starting me on an oral Mg supplement in addition to the infusions to see if we can get my blood Mg levels stabilized better.

This morning, I had a follow-up with the Infectious Disease dr. since I'm off IV antibiotics.  I'm completely wiped out and sleeping til 3:00 pm most days.  I feel like a walking zombie. :(  The doctor said it's because I'm still recovering from being septic.  And it will take longer for me to get back to normal because of the mitochondrial disease.  On top of that, I'm anemic, so my GI is running some other labs to figure out if this is iron deficiency anemia or hemolytic anemia.

Next week I have appointments with Wound Care (for my raw feeding tube site) and Cardiology.

Thank you for checking in!

P.S. This is my 200th blog post!  I started this blog December 31, 2011.  Thank you so much for reading and following my journey!  It means a lot to me. :)

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” -John 16:33

Wednesday, March 23, 2016

My first blood infection.

Hello all,

I'm sorry I've been MIA here!  I'll just cut right to the chase. :)

On February 26th, I started dealing with vomiting.  We didn't know what was going on, and my GI specialist was unsure if this was due to worsening GI dysmotility.

I had 3 more episodes of vomiting and dry heaving, and very early in the morning on March 8th (around 12:00 am), I began experiencing a fever of 101 degrees, terrible low back pain, severe chills, headache, and heart rates over 150 bpm.  I was taken by ambulance to Legacy Emanuel ER because OHSU's ER was filled to the brim, and they couldn't even take ambulance patients.  I had lots of tests ran all throughout that early morning, and we found out that my blood cultures came back positive (in my blood and central line) for gram positive cocci in clusters (more specifically, Staphylococcus Capitis).  I was septic and spent 9 days in the hospital.  I had to have a spine MRI to make sure the infection didn't spread to my back.  The doctors also ordered a heart echocardiogram to look at my heart valves to make sure the bacteria didn't stick there.  On Friday (March 11th), I had a central line removal procedure in Interventional Radiology.  Then, Saturday, I was transferred to OHSU since almost all of my doctors are there.  I continued to receive heavy duty IV antibiotics---they were very hard on my veins. :(  On Monday, I had a venous duplex ultrasound study to look at all the veins in my neck and arms to help the doctors figure out the best central line access.  And on Tuesday the 15th, I had surgery #11 to get a new central line placed.  I got discharged on Wednesday the 16th. :)

I'm weak and exhausted but slowly recovering here at home.  I'm also still on IV antibiotics, and the Infectious Disease doctors will let me know when I can stop them....they are looking at my labs weekly to see if my body is ready to be off antibiotics.  I have a follow-up with them in clinic on April 6th.

Yesterday I saw my GI doctor, and we had lots to discuss.  Several of my liver function labs are high, and he thinks my liver took a hit from the infection.  My bone marrow also got affected, so my blood counts are lower than my normal.  I get labs drawn again tomorrow, and we'll see how things are looking.  My next infection in the future (and it's not "if," it's "when".......infections are a given with long-term IV access. :(  You can be so sterile with your central line and still get sepsis...!), I probably won't be getting another central line.  My GI specialist spoke with the hospitalist, and they both agree I should get a port surgically placed in my chest because it can be less risk for infection.  But, there are pros and cons with a port, just like there are pros and cons with a central line..

Next week, I have 3 appointments with Sleep Medicine, Pain Medicine, and Nephrology.  My nephrologist did discover that my kidneys are spilling magnesium and potassium which is why my blood MG and K levels can't hold steady.  What's going on is similar to something called Fanconi Syndrome (this can be seen with mitochondrial disease).  She's looking into starting me on a medication to help my kidneys hold onto Mg, but it lowers blood pressure.  Since I already deal with low BP, she wants me to get my BP checked for several days (right before I get up from sleeping).  She'll see what my numbers look like, and we'll discuss the next step when I follow-up with her next Thursday.


Happy Easter, friends.  Have a blessed Sunday as we celebrate the Lord's resurrection! :)

Wednesday, March 2, 2016

Hello, March.

Wow, it's been a whole month since I last posted here.  Did you miss me? ;)

February was very rough, and I'm glad I can now look back on it.

Here are all the latest appointment updates.  Beware, this is super long!!  If seeing doctors was my full time job, I'd be rich. ;)  For those on facebook who already read my "mito" update, just scroll down to pass that one. :)

Mitochondrial medicine (posted Feb. 16th):

1. My hypomagnesemia is related to the mitochondrial disease---a lot of his patients deal with the same thing and need daily IV fluids with magnesium just like me. Still going to be seeing nephrology at OHSU on the 29th.
2. He wants my doctors to aggressively treat the Wilson's Disease and start me on another chelating drug in addition to the Zinc Acetate I'm taking. Unfortunately, there have been no studies showing that WD causes a mitochondrial depletion (which was found on my muscle biopsy). This means treating WD probably won't help improve the mitochondrial symptoms, but he's still interested in how treatment goes!
3. He is going to ask the lab to check my whole exome sequencing analysis (done last year) for Wilson's Disease gene abnormalities.
4. I will be starting Alpha Lipoic Acid in addition to my other mitochondrial co-factors and antioxidants.
5. He thinks that in the next 2-3 years, I'll be eligible for a drug trial. So far, one that he's involved with looks promising.
6. I'm dealing with another painful jejunostomy feeding tube infection... :(  Thankfully I didn't have to go to the ER here! He was able to prescribe antibiotics for me, but he said I need to follow-up with my GI surgeon right when I get back!
7. One more thing, he said he won't forget me and that I'm very memorable! ;) :D

GI Surgery:

I followed up with my GI surgery team the day after I got back from San Diego.  To my surprise, I had to have a small unexpected surgery called "incision and drainage" at the site of my j-tube infection.  It was very painful, and for several days after that, I had to pack the wound with gauze twice a day.  The resident cultured the abscess, and we received results the same day I was in Seattle on the 22nd to see my pain dr.  My cultures grew a bacteria called Enterobacter Colacae Complex, so I was switched to a different antibiotic.  I was on antibiotics for a total of 11 days.  Thankfully, the infection is now gone, but my j-tube site is raw and super painful due to bile leakage.  This has been a problem since November, so my GI surgeon referred me to Wound and Ostomy Care.  Haven't seen them yet, but hopefully soon..

Neuro-Ophthalmology:

The ophthalmoplegia (eye muscle paralysis) in my left eye is stable which is good news. :)  The vision in my right eye is continually getting weaker, though. :(  My right eye is either working too hard because my left eye doesn't move well, or this is due to the copper accumulation from Wilson's Disease..

Pain Medicine:

It was soo good to see my pain dr. at the UW Medical Center on Feb. 22nd.  He gave me a big, long hug!  For those who don't know, he's my favorite doctor out of all. :)  He spent over an hour and a half with me.  From the appointment and neuro exam, he came to the conclusion that I'm currently not dealing with Complex Regional Pain Syndrome.  He thinks I have Small Fiber Polyneuropathy which is very similar to CRPS but also indicates nerve damage.  The plan is to try and switch to a different and new medication....similar to the one I'm on, but he's seen better results.  I'll also be getting another bilateral lumbar sympathetic block, but it will be done here at OHSU.  We talked about Spinal Cord Stimulation, and sadly, he doesn't want to put one in yet because my health isn't stable, I'm on IV nutrition, and I just got over an infection...all big risks.  If I were to get an infection in my spinal cord from the surgery, he would never be able to forgive himself.  I trust him completely and understand, but I AM disappointed....hopefully things look up and I can get one down the road!

Gastroenterology:

I had a GI follow-up after we got back from Seattle, and my dr. ordered lots of blood work to be done to check on all my vitamin levels and minerals since I'm on TPN.  We should get results on Friday.

Hepatology:

My GI dr. spoke with my hepatologist a couple weeks ago.  He said that my hepatologist will be calling sometime soon to tell me that he wants to repeat some Wilson's Disease tests.  He wants to see how the Zinc therapy is going and if it's helping remove copper from my body.

Nephrology: 

I saw my nephrologist for the first time this past Monday, and she is amazing!  So blessed to have her on the team.  She ordered lots of lab tests to be done tomorrow to try and get to the bottom of why I'm dealing with Hypomagnesemia.  I really want to cut back on my IV fluids with magnesium, but that's going to be hard to do if my level keeps dropping.  Hopefully these tests give us some answers.  She's looking into 2 kidney disorders, and I pray I don't have either.  I don't think I can take another diagnosis!!

Pulmonology:

Today I saw my pulmonologist for the first time to assess my weak respiratory muscles.  I had another pulmonary function test, and we compared the results with the one done at Cincinnati Children's.  It wasn't good news.  One of my values showing lung strength decreased from 72 to 46.  That's a big decrease, and this level is seen in chronic respiratory failure. :(  So I have to get another PFT done in 6 months to keep an eye on this.  Taking it one day at a time, and I know I'm in the Lord's hands.  Here is something good---all my other pulmonary tests (including chest x-ray) are normal. :)




Tomorrow I have a follow-up with my hematologist to discuss my latest blood counts.  My GI dr. is glad that this is tomorrow because something is going on with one of my white blood cell types..

After that, I'm done for the week!! :)

Thursday, February 4, 2016

Busy busy.

Hey guys,

Just wanted to post a short update for you.  Thank you for continuing to pray for me. :)

My magnesium dropped AGAIN even though I'm receiving extra magnesium in my daily IV fluids!  Something's clearly not right. :(  Yesterday, I was given an additional 250 ml bolus of magnesium, so I was on IV fluids for 6 whole hours.  My GI team referred me to OHSU nephrology to make sure I'm not losing Mg through my kidneys..  The clinic already got back, and I'm blessed to be able to see a Portland Monthly "Top Doctor" in nephrology.  My appointment with her is on the 29th.

Picture #2: what it's like to live with mitochondrial disease....I receive the big clear bag of TPN every other day, the white bag of TPN with lipids on alternating days, and the little IV bag of fluids every day....I have to flush my central line with saline (syringes) before and after every infusion.  All the other supplies in the picture are what's needed every day!

This month is crazy busy.  I have 4 appointments next week (physical therapy, kidney/bladder ultrasound, neuro-ophthalmology, etc), and then my parents and I leave for San Diego on Monday the 15th.  The follow-up with my mitochondrial disease specialist is on the 16th.  We come home on the 18th.

In addition, my parents and I will be driving up to Seattle on the 21st to see my pain dr. who moved from OHSU to the University of Washington Medical Center.  This was planned last minute.  The CRPS nerve pain has been horrendous, and my local pain dr. is so booked out.  It's so hard to deal with this CRPS flare-up day in and day out. :(  Nothing is helping, and chronic pain is so different from acute pain in that regular pain meds don't help.

I can't wait to see my pain dr. again....it's been more than a year!  I need to update him on all that's happened, and I also hope to discuss spinal cord stimulation again (for those who don't know, I had an SCS system implanted in my back in 2011 for the CRPS, and it helped the pain tremendously....I had to have it removed in 2012 because I needed MRIs....after waiting more than 3 years since then, there are now MRI-compatible SCS implants!). :)

After we return from Seattle, I have my GI follow-up that Friday.  I'm glad he'll be back....he's been gone (out of the country) way too long!

And then the following week, I see Nephrology, Pulmonology, and Hematology....too many appointments! :(

The rest of this month, I won't be blogging.  You know why. ;)  I'll be sure to post some short updates on facebook.  And I will return here next month!

Until then!

*Oh man, that was supposed to be a "short" update... :D *

Kerissa