Hospital Updates, Hello World for the First Time in a LONG Time!

 Many of you don't know that I have a blog--it's been about 3 1/2 years since I've used it.  God has brought us through a lot in that time! The biggest change for those that don't know is that in December of 2020 we moved to Huntsville, AL.  The three reasons were a wonderful church, a PCD clinic (this is huge!), and being close to Jord's parents as they age.  God has affirmed our move over and over and He made it very clear He wanted us to go when He did.  But that's another story.  

I'm currently being admitted for a flare of PCD.  I have so many people praying and wanting updates that I decided to bring out the blog again so I can update in one place and people can check on it, share, etc without me having to try to remember to text 20 different people.  So for however long God has me here, hopefully, only 4-5 days, I'll, Lord willing, do at least one update a day.  

So I started feeling not the best towards the end of a trip back home to AZ to see family and friends that I hadn't seen in almost a year.  I was there for two weeks and of course crammed a BUNCH in--even though I was on my inhaled antibiotics, I was starting to flare towards the end of November.  I talked to Dr. Solomon at the PCD clinic and he agreed to extend my inhaled antibiotics for a couple of weeks.  There is a national shortage of some of the components for it due to covid so I missed a few days before getting my continuing couple of weeks.  I still wasn't doing well after that so we decided to do IV antibiotics at home.  I was on both meds simultaneously for about 13 days and then my liver enzymes elevated and I had to stop the IV antibiotics and I immediately started getting worse again.  The clinic worked me in early and I saw them Tuesday of this past week and here I am in room S644 at UAB in Birmingham.  

The plan is to start IV colistin AND IV Meropenem. The colistin is typically a "last resort" IV antibiotic because of its nasty side effects and how hard it is on kidneys.  Dizziness, vertigo, and numbness/tingling of mouth and extremities are the top side effects and what I experienced during the infusions in April of 2016.  I have to be on continuous IV fluids to help the kidneys. The Meropenem I was on and what caused my liver enzymes to elevate over Christmas.  Hopefully, the best case scenario is that I tolerate both decently, (typical side effects are ok, but we don't want my liver enzymes to elevate or my kidneys to have issues with it) and can go home in 4-5 days and finish out the minimum 14 day course there.  They are going to hit it hard which is good to get rid of the bacteria, but knowing my body, it may not like the hard hit.  Please pray for peace and that I would take thoughts captive and not give in to "vain speculation", but to take each moment as it comes--as Elisabeth Elliott said, "Do the Next Thing."

  While here they are also going to do some imaging and a special culture to test for a nasty bug called Non-Tuberculosis Mycobacterium or NTM.  It's a bug that many people with PCD and CF will culture at some point in the progression of the disease.  It is very difficult to treat and can really tear up your lungs and is often difficult to diagnose as well.  I've been having night sweats which is not normal for me and can be a symptom of NTM.  Prayer requests in that regard would be that if it IS there, that they find it and it would be a slower growing one and easier to treat.  We won't know for a minimum of 4-6 weeks because it takes that long for the culture results to come back.  

Jord and I are doing well spiritually and mentally for this stay.  We trust this doctor and the clinic--I was hospitalized here this last April and they were all incredible.  Our church,  Grace Community Church, has been phenomenal in serving us.  We absolutely love it here in Huntsville and are so incredibly grateful to be at Grace where we are well taught and very well cared for--Jord too! 

Thank you for all your love, support, and prayers--I will do my best to keep you updated.  Hopefully the side effects will be minimal and I will be back home with my hubby and puppies soon! 

In His Mighty Grip,

Rachelle :)