Health Update 3.8.16 and Mountains of Faithfulness (repost)

     Hello all...I would love prayers today at 11...I am seeing my lung doctor to see if we can figure out what's going on and why I'm not getting better.  Last night my hubby and I took a dear friend, Nathan and his brother Daniel out to dinner at Red Robin.  With my new dietary restrictions, eating out has been an experience, but Red Robin is awesome at accommodating restrictions and our waitress, Tracy, was awesome.  :)  I was still in a fair amount of pain, so I broke down and filled a prescription for Tramadol.  It's amazing how you don't realize how much pain you are in until suddenly it's not there and you are like, "Oh man, that really hurt."  

     The night was going just fine--I could feel the pain med--was a little light headed and if I moved too fast I got dizzy so I was just taking it easy.  I took my night time meds, along with some vitamins, and then it was all over--my body did not like those on top of the pain med.  I tried really hard not to throw up, but by the time I realized it wasn't going to happen, I barely made it to the bathroom.  I aimed for the toilet, but it went everywhere---so gross!  My poor hubby---he was already in bed and was exhausted from a long day and he hasn't been sleeping well and I had to wake him up to that--and I couldn't physically clean it up so he had to do that on top of helping me get back to bed, getting me ginger drinks, rice crackers, etc.  I woke up to go to the bathroom this morning and needed help cause I was dizzy, so he had to get out of bed for that after the dogs had just gotten him up to feed them.  He told me he tried to clean it up and got a lot of it, but he was going to throw up if he kept cleaning so the door is closed right now and awaiting me when I can work up the energy to try and get it cleaned up before I go to my appointment this morning.  The life of a caregiver!  It's hard--so if you see Jord, encourage him!  He is truly my greatest earthly treasure!  I've got a post brewing in my mind to share our love story and just how well he cares for me and how God loves me through him in so many ways.  I am so blessed! 

     Please pray for clarity and wisdom at the doctor's office today.  It's day 15 of IV and with the pain getting worse instead of better that's not good.  I'm not sure what the plan will be going forward, but thankful I know the One who does.  I finally have a great team of doctors around me and I'm not having to fight for the care that I need--I cannot tell you how refreshing it is to be able to trust your doctors completely and not second guess the treatment plan.  The home infusion company has been an awesome answer to prayer as well.  My sweet nurse friend Judy worked it out to where they could work with my insurance so I could get the best care with home health nurses that know me and the pharmacist knows me and they all take wonderful care of me!  It's been absolutely AMAZING to see bills to my insurance for over 10K for the home IV so far and our part owed is $0.  Such an incredible provision from God!  We are still paying off last years medical bills so I do not take this gift of amazing insurance lightly!  Such an answer to many prayers prayed for us!

     I'd better sign off and do treatments now, but I shared this morning the analogy of Mountains Papa gave me when he was dying so I thought I would repost his poem along with an old blog post:

     HERE is a link to the whole post if you would like to read it.  It's a short post talking about how God uses the analogies of mountains all the time.  Here is the poem I wrote when I was 16 after my beloved Papa died from Melanoma.  It came from a moment when he knew he was dying from the cancer--he was crying and told me, "I've been thinking about what to write in that journal you gave me...Life is like a series of mountains--you get to the peak of one, but you are just at the base of another.  You are born, but you are just at the base of life.  Then you learn to sit up, but you are just at the base of crawling.  Then you crawl, but you are just at the base of walking."  These words are forever emblazoned in my mind and have helped shape the woman I am today.  16 years later and I miss him so much.  Have a blessed day my friends and remember to hug your loved ones! 

Mountains

The green valley’s amid white-capped mountain peaks,

The joy of birth, a new life in this world,

Barren lands among falling boulders sweeping down the mountainside,

The harshness and pain of death, losing the one you loved so.

Climbing mountains all your life,

Mt. Everest a major feat,

Reaching the top of a hill, unnoticed at the time.

Working your way through life,

Graduation and embarking upon your new world,

Learning to breathe, instinct led you through.

Facing challenges,

Boulders sweeping you off your path,

Accomplishing your dreams,

Seeing the peak of a mountain past,

But alas, you are just at the base of another.

Cancer raging through a family, tearing lives apart,

A brave man, crying, telling his family not to worry,

For he has just reached the peak of his last mountain,

The last of a series of mountains, the mountains called life.

Rachelle Thomas 

Added a lot of pictures of life...enjoy! :) 

 

Health Update 3.6.16

So I have an email into my lung doc and will probably go ahead and just get a port again to make my life easier. It is apparent that I am going to be needing IV antibiotics more frequently and for longer periods of time as the inhaled don't seem to be cutting it at the moment. I will likely need to be desensitized to some meds in the near future just so we have more options when I do get sick and to do that you have to be given them more frequently so your allergy doesn't come back. (That is my understanding thus far--I will be establishing care with the allergist and infectious disease docs that my new lung doc works with so they can treat me as a team going forward.) What this means is minor surgery in the near future to implant the port into my chest (its what chemo patients get). I'm also still just not getting better this time around. My sputum has not been green since Friday which is a good thing, but I'm in a lot of pain this afternoon again, which is the thing that sent me to the ER in the first place. Tomorrow is day 14 of IV antibiotics so I should be responding at this point, even at the lower dose. There is also a LOT going on right now outside of my health what with closing on the house in a week, finding a place to move to, packing, and moving by the end of the month. If you are available, we could really use some help with packing and meals and just general house stuff. I've got a lot of administrative/finance stuff to do between doctors stuff and house stuff and that zaps my energy and I don't have much left to give. Jord is exhausted between working and helping take care of me--he has to help me shower because I can't get my ears wet or my PICC line wet and a million other little things that he has to do double duty with me out of commission. So calling all hands.... smile emoticon And of course if you aren't logistically available, prayers are always appreciated!!

Health Update 3.2.2016

So I saw my  new pulmonologist yesterday and I absolutely love her.  Another doc is coming from the University of Michigan April 1st who will be 100% clinic, so I will see her outpatient.  I have Dr. Campion's email and will check in with her on the 7th to see how I'm feeling and if I continue one more week with IV or if we go back to the drawing board.  I will see her again in a month and in the meantime she is going to get me established with an allergist/immunologist and an infectious disease doc that is at UMC so I will have a full team around me.  This is EXACTLY what I have needed for years.  I cannot tell you how much relief I feel knowing there is a team that knows me and will take care of me instead of me being really sick and having to fight tooth and nail to get the care I need and then pieces get dropped and I end up with a major adverse rxn again.  I'm so grateful to God!

We officially accepted an offer on our house yesterday!  This is truly a miracle of God to sell this house in a month with a cash offer--and it going to someone affiliated with Wycliffe--makes my heart SO happy!!!!  We have started looking for rentals and it looks like there is a house big enough in Red Rock that could potentially work for us if the price is right.

Thank you for all the prayers, love, and support!  Jord and I really appreciate it!

In His Mighty Grip,

Rachelle :) 

Rare Disease Day 2016

So in honor of Rare Disease Day today, I am going to share an updated version of my story.  Please share away and lets get the word out about Rare Diseases! Together we are strong!

     My Story

My name is Rachelle Thomas and I am currently 32 years old.  I was born in Douglas, AZ in February of 1984.  Within 24 hours of my birth, I developed respiratory distress and was air-vacced to a larger hospital in Tucson, AZ.  I had a collapsed lung and spent 8 days in Neonatal Intensive Care before I was finally able to go home.  Numerous tests were done, but the doctors could not explain what had caused my respiratory problems.  Little did my Mom know, this would be my story until I was 13.  

I had chronic ear, lung, and sinus infections.  At 11 months I had my first set of what would be 4 sets of ear tubes by the time I was 5 or 6.  I had my tonsils removed and numerous other surgeries, trying to “fix” all my symptoms.  When I was 5, the doctors diagnosed me with Asthma, but that didn’t really fit.  When I was 12, they said it had to be Cystic Fibrosis—and in between they assured my parents I would “grow out of it” when I went through puberty.  Needless to say, none of the above was correct and by the time I was 13 I had had 13 surgeries and still no answer.

Thankfully, my parents would not take, “We’re not really sure, but we think it has to be Cysitic Fribrosis” for an answer.  In the summer of 1997, we made a family vacation out of going to the University of North Carolina at Chapel Hill to visit Dr. Michael Knowles, and his research team.  For 3 days I underwent numerous tests and at the end—we FINALLY had our answer.  One of the tests was a “Mucual-ciliary clearance test”—I had to breathe in radioactive parts and for the first 4 minutes of every 10 minutes for two hours, they X-rayed my lungs to see how much of the particles my lungs would move out.  Normal lungs move out about an average of 30% of the parts in those two hours—mine only moved out 8%.  I was diagnosed with Primary Ciliary Dyskinesia (PCD)—a condition in which the little hairs in my ears, lungs, and sinuses don’t function properly.  There is no cure and it is a progressive disease—you simply have to try and prevent and manage infections when they come.  This is typically through utilizing antibiotics, inhalers and air way clearance therapy.

At the time, I was still a child and I’m sure my Mom and Dad felt more relief in finally having a diagnosis than I did.  We finally knew what we were dealing with---and that it was never going to go away.  As a kid, I fought Mom on doing my medicines—I would cooperate for a bit, but I would get tired of taking all the medicines and I didn’t like how the inhalers made me feel and would avoid those at all cost.  Now that I’m older, I recognize how I might have prevented some of the lung damage I have now—or at least put it off a bit longer if I had done my treatments on a regular basis.  Thankfully, I know God is sovereign and in control and has a plan for our lives—even when we mess up or don’t do what we’re supposed to.  

In high school I had a relatively “healthy period”, thus giving me more reason to avoid my inhalers.  I met my husband, Jordan, when we were 18 and we got married when we were 20.  Right about the time we were married and moved into town, my health started spiraling downhill.  At first we thought it was living in an apartment and in town—I had grown up out in the country away from the constant cars and trucks and mold that was probably in the older apartment complex.  Within a year of being married, we moved into a suburb of Tucson to try and get away from as much pollution as being in the middle of the city.  We have since added on to the house to get air-conditioning with a filtration system and got rid of all carpet to keep dust and other things down.  In spite of doing all this, my health has still gone downhill.  

I am now up to over 30 surgeries and countless hospital stays.  I have breathing treatments and chest percussions that take an hour three times a day.  In December of 2010 I almost died from a severe reaction to steroids and the antibiotic, Levaquin, that I was using to treat PCD.  I am off and on IV antibiotics, oral antibiotics, and inhaled antibiotics in an effort to prevent and get rid of infections I do end up getting.  Since 2010, I have had many severe reactions to medication—there have been two times when I have gone into the hospital walking and come out in a wheelchair, unable to walk on my own and have had to go through intensive rehab for months.  When I get a cold it can quickly become a bad infection that could lead to Pneumonia or more lung damage.  I now have Bronchiectasis, which is the hardening of your airways, which was caused by the numerous infections I had.  Some of the surgeries caused me to lose 80% of my hearing, but thankfully with a hearing aide I am able to hear pretty well.  My husband and I have also been unable to have children, we believe in large part because of everything my body is constantly fighting.  I also have some other pain that the doctors don’t know what’s causing it—it only goes away when I lie down.  My energy level is definitely not that of a normal 32 year old and I have to carefully watch what I plan in my days and try not to overdo it, as I can become sick so easily.  

By God’s grace, this has not affected my ability to enjoy the life He has given me.  I must confess—there are days when I grow weary and tired of all the doctor visits, medicines, and having to say no to activities that I really would enjoy because of my health.  However, God has granted me incredible joy in the midst of this suffering and an amazing husband who loves me through more sickness than health.  I know He has an eternal home for me—that this life is but a vapor as He says in James—and that I will one day have a heavenly body that works perfectly!  Until that day when He calls me home, I pray I can be an encouragement for all those like me suffering with a rare disease…it can be so isolating at times, but together we are strong!  Share my story and others on Monday, February 29th with the hashtag #RareDiseaseDay and lets show the world just how many people are living with a rare disease. 

     The last 5 years since my first Psychosis have been incredibly difficult.  I am currently having to be on a low dose of IV antibiotics 24/7 for a total of 21 days because of those reactions.  I am so thankful for Jesus--without Him, I wouldn't have hope in the midst of all the chaos that surrounds PCD and life in general.  No matter what happens, God is still on His throne and in complete control and working everything together for your good and His glory with the wonderful promise from Philippians 1:6 that "He who began a good work in you, WILL complete it."  So encouraging!  Please "Share the Rare" stories I'm going to be sharing on facebook and pray for all of them as well.  Thanks friends!    

Mom and me on my birthday in the hospital last week. And of course Snuffy had to be there...he is my hospital and surgery buddy who just turned 30 when I turned 32. :) Mom got him for my second surgery when I was 2 and he always goes along with me. :) 

I need an extra arm right now LOL...trying to take a webcam shot with a PICC line while holding your ambulatory IV pump is interesting.  

Going Home!! And God's Divine Appointments :)

     Yes, you read that right!  This girl gets to go HOME tonight!!!  I will be on IV antibiotics continuously for the next 17 days, but at least I can do it from home.  I will have lots of appointments this next week with follow ups with my docs etc.  We haven't heard anything on the house as of yet, so still waiting and praying for that.  Jordan is feeling much better--thank you for praying for him!

     I know it sounds like a funny thing to say, but I'm always so blessed in the hospital with constant reminders of God's all sufficient grace and great love and care for me.  From my friend Tammy making sure my PICC dressing got changed, to being able to run things by Aunt Netta and Aunt Dawn, or Judy my home health nurse that retired in Phoenix making sure I was taken care of by the best in home health care.  It really is amazing to see the people God has placed in my life to make sure I get the best care possible.  I even got the phone number of the hospitalist (the doctor who saw me all week) who is due with her 2nd baby in April so that I could see baby pics and I told her I was going to adopt her kiddos too--I'm not sure if she knows how serious I am yet. ;)

     I was walking in the halls a little later than normal today because my Respiratory Therapist (RT) was running late this morning and I had cramps cause I started my period (yep, my body decided to literally throw everything at me this week!) and I couldn't take my normal amount of IB profin because of other things going on.  Anyway, I was walking and this lady was walking back and forth, wiping tears from her face.  I told her I would be praying for her and asked her what was happening--turns out she had just found out her brother passed away and her husband came in with pulmonary hypertension and has neuropathy and they found lesions and he might have blood cancer.  I asked if I could pray for her out loud and she said yes.  I was able to pray with her right there in the hospital hall and we exchanged numbers and I have been sending her my "go to" verses and songs.  I absolutely love how God works!  If my RT hadn't been late or if I hadn't had bad cramps, I would have been in my room eating my lunch and missed being able to connect with her.  Her name is Charlene if you would keep her, her family, and her husband in your prayers.

     Jenn came and met me in the children's waiting room and I walked in and there were a couple guys in Army uniform so I thanked them for their service and talked to them a bit.  Jenn walked in and I introduced her to my new friends.  She laughed and said, "Imagine that, Rachelle making friends."  I love to talk to people and God is using that here.  The hospital, especially the floor I am on, can be a very hard place for people to be--my neighbor has asthma with congestive heart failure, I met another guy with Cystic Fibrosis and there are quite a few CF'ers hospitalized right now.  We all would much rather be at home, but God has us all here at the same time for a reason and a purpose.  It has been my privilege to be His ambassador here--everyone always ends up asking "THE question" that I love to answer, "Why are you so happy when you are so sick?"  Because of Jesus.  It's that simple.  If I didn't know Jesus Christ and know for certain that I will be with Him in heaven One Day, worshipping Him for all eternity I would have no hope.  Yes, I have a heavenly body to look forward to as well, but if there was a heavenly body without Jesus, there would be no heaven.  We can't follow Jesus just for the benefits--they are there and they are wonderful, but Jesus gave His very life on the cross, absorbing God's ETERNAL wrath for my sins and yours and then He rose again, His work complete in bridging the gap between us and a Holy God that has to punish sin.  We can once again be in relationship with the God of the universe who created all things, including us, and desires our obedience and trust.  He loves us so much that He sent His only Son to accomplish that task because not one single human being other than Jesus Christ can live a totally obedient life that is required to repair the broken relationship between man and God.  It is for this Jesus that I live my life and the reason that I can be joyful in the midst of the difficult circumstances of the last week.

To Him be the glory, great things He hath done!
Rachelle :)

Hospital Again 2.23.16

     It has been an interesting couple of days.  Friday morning right after treatments I was short of breath and in a lot of pain.  I had a GI appointment at 10:40 and went to that and afterwards decided I needed to go to the ER instead of waiting to see my PCP at 2:20.  Jord got off and brought me to UMC where I was admitted.  We tried starting a low dose of Zosyn and I had a rxn to it by itching all over and my liver enzymes jumped from a normal 25 (50 is high) to 350.  Yes, my body does weird things that shouldn't happen when it comes to medications now.

     We held off on any antibiotics and just did aggressive airway clearance therapy and pain management with morphine.  Monday the docs all talked and it was decided to start a low continuous dose of an IV antibiotic, Aztreonam (IV Cayston), along with an inhaled antibiotic, Tobramyacin.  So far, I haven't had any reactions, praise the Lord!  I saw Pulmonology today and the plan is 24/7 for 21 days.  They will talk with the entire team on Thursday and barring any reactions get me home as soon as they can to finish out the IV's at home.

     We also had a close family friend pass away on Saturday.  Jord has known him since he was 13 and was really close to him so it is hitting him hard.  Please keep his wife and their two boys (they are in their early 20's) in your prayers.  Thankfully he was a believer and we can rejoice that he sees Jesus face to face and that One Day we will see him again!

     I'm heading to bed but will do some more blog posts soon.  I had a wonderful birthday even though it was in the hospital it was filled with family, friends, and lots of pictures, flowers, butterflies, and balloons!  God is so gracious.

     People are asking my favorite question to answer: "You are always so happy...why?"  The only answer I can give is Jesus.  Pray for His Word to take root in their hearts and to draw them to Himself.  God has provided many opportunities to build relationships and for me to meet just the right person at just the right time.  He is so good!

In the Love of the Lamb,
Rachelle :)

P.S. Jord woke up sick today so please pray for his healing too!  He's got a lot on his plate right now.  Thank you friends!

P.S.S. There is a potential for an offer on the house--pray that God's will would be done but that he would make an offer sooner rather than later--our realtor said he is a cash buyer and wants to close quickly which is good and crazy all at the same time so pray for wisdom, grace, and mercy in this crazy season! :)

Here's a sample of the many pics...I'm exhausted so I will do more later.  :)