Sorry for the delay in updating you. God certainly heard and honored all of our prayers yesterday. I have never had to experience three IV drug desensitizations (back to back) in one day, but it went perfectly. I had NO drug reactions or complications. Thank You, Jesus.
To review - most of you recall that I have been fighting these fungal lung infections since early March. I had two positive cultures in May and received sensitivites for one but not the other. My Infectious Disease (ID) doctor wanted the second set before selecting the IV antifungal. I was never at peace with that plan, but accepted it (I do yield to the doctors, once in awhile!) :-) Unfortunately that second culture sample was contaminated by the lab (of ending errors) and sensitivities were delayed. Last Monday was when my neutrophils (infection fighting white blood cells) crashed to the most dangerous level and immediately I had a fever (known as febrile neutropenia). I did not feel well most of the week and weekend and the fevers never ceased.
On Saturday, I e-mailed Dr. H. (THE leukemia specialist of the world who is from the UK). I was becoming increasingly more concerned about my condition and the "wait and see" approach to treating. I suspected, rightfully so, that a bacterial infection had developed with the fungal infections. I mapped out a plan for Dr. H to review about what I thought I needed - checked for CMV; consideration that PCP (P carnii pneumonia) was a threat; and that I needed an IV antifungal; IV Tobramycin given my history of pseudomonas; and a broad spectrum antibiotic to address other infections not yet recognized. Dr. H agreed with my plan.
Unfortunately, I didn't make it to Monday to present the plan to my doctors. Sunday night about 11 I became very ill. I was chilling and had rigors so hard my teeth were chattering, despite having a pile of blankets covering me. My heart rate began racing and my blood pressure was all over the place. I didn't think I was going to make it. This lasted for over five hours. I made the decision not to go to the ER. It always promises to be a nightmare of an experience and I was willing to take my chances at home. I assumed Sunday night that I was septic (infection in bloodstream) or the infections were causing these symptoms.
I reached my doctor on Monday morning. She called my ID doctor. (And this was the God-thing) he devised a plan that was almost identical to what I had proposed to Dr. H (and these doctors hadn't discussed my plan with me)! They admitted me immediately to ICU yesterday morning. Evidently, due to the stress on my body from the infections, leukemia, and fever, I had gone into acute adrenal failure, which can be deadly. I already have secondary adrenal failure from all of the steroids I have used and I had forgotten to add extra steroid coverage (I live on steroids to support adrenals) when I worsened. Thus, the crash. Once again, He heard my prayers and saw my tears and pulled me through.
The ID doctor prescribed:
-IV Tygacil - a new, powerful broad spectrum antibiotic
-IV Micagungin - antifungal
-IV Tobramycin - powerful antibiotic to defend against Pseudomonas and other gram negative dangerous bacteria (in combination with the Cipro I take daily) Note: Never allow a doctor to treat Pseudomonas with just one antibiotic.
-10 days of Neupogen injections (One of my primary prayer requests right now is that God will have to sustain my counts. One side effect of each of these three drugs is pancytopenia - meaning that they can all cause declines in neutrophils, hemoglobin, and platelets - not good when you have counts like we leukemia patients usually walk around with!) Also, one of the drugs has the potential to induce deafness, so please pray protection over my ears.
The Germ Patrol has cultured about everything humanly possible in my body, so we "patiently" await those results.
They called in a critical care pulmonologist to consult with me. He agreed with the plan of action but remains concerned about an indolent form of PCP that does not always show on x-ray. He ordered an LDH level and told me that there is some research to indicate that SOMETIMES - and he emphasized this - that an elevated LDH level can indicate PCP pneumonia - my LDH was normal. Another praise.
Unfortunately, I have had to continue on IV steroids - 4 times daily. So be looking for my bloated, steroid face coming to a town near you (but the steroids do de-bloat my enlarged spleen and lymph nodes - YIPPEE)! :-) And as always, when I take IV high dose steroids, I become insulin dependent. I am receiving two kinds of insulin, four times daily to help control my glucose levels until the IV steroids can be tapered.
The Tygacil poses great risks because it is in a class of drugs that I have severely reacted to in the past. Kevin had waited all evening to be here when they started it. Finally, at 10last night, I told him to go home - I was at peace and he needed sleep. I am certain God sent me an Angel Nurse - a Christian who stayed with me the entire infusion and all we did was talk about the Lord, quote Scriptures to each other, and discuss the Rapture. I was blessed. My Provider had not neglected me once again. All of my nurses have been exceptional this admission.
No one will even mention when I am going to be discharged. Based on past similar experiences, I will probably be in ICU all of a week - best case scenario - so keep those e-mails coming because it is soooo boring. I am almost totally restrained with leg pumps on both legs (to prevent another Pulmonary Embolus); heart monitor cords, pulse ox monitor and blood pressure cuff.
Good news today - my deeply clouded mind (always a sign to us that I am in trouble) has cleared some. I couldn't even compose an update yesterday and you know I am the wordy wordsmith who can crank out essays with ease (normally) :-) My temperature has decreased - if it doesn't resolve then the bronchoscopy (scope into lungs) will be scheduled. So I am very grateful to see that. My BP is still low (60/40; 70/50). Pulse ox is better, so that is good. I think one of these weapons of mass destruction has reached its target (infection) successfully!
Sunday night when I was so ill I kept reading these words I had written. They have encouraged me so these past couple of days. I pray that you will be encouraged today. God, You are my Hero! And all of your prayers have been very much appreciated. This load is so heavy, yet God has promised me His strength. I exist and function through the strength the Holy Spirit bestows upon me. Guidance, power and peace -- I am moving toward a Higher Place. Earth is nothing but a place I stopped to "visit" for a short while, known as life. I am a pilgrim on this journey of life. He knows. He bore His pain with such courage and grace on the cross - May I only do partially as well as I face my pain - let courage and grace and love and joy still flow from my body, even when it is crumbling. May His message of forgiveness, love, hope and eternal life be shared through my life each day.
Disclaimer - Please overlook errors due to my being mentally challenged and over-drugged at the moment (remember my "I have a customer on my head update" - should have been cyst not a customer but that provided a good laugh. :-)
6 comments:
Wow, Stacie. I don't understand some of what you write but I do understand being BORED and also claiming that God is your HERO!!
Just wanted you to know that some of the wedding stuff was used this past weekend for a friend of mine who's daughter was married. Both bride and groom are homeschooled and it was a wonderful wedding. We're up next this October!! Thanks again for blessing us with that stuff!
My brother in law put a very large rope swing up today for the children. They have been swinging all day. I can see them from the window by my computer and hear their laughter. As you lay there bored remember the laughter you have ringing through your head from when your children were young and little man as well!
Dear Lord
Please wrap your arms around Stacie and help her make it through this with no new problems.
In Jesus Name. Amen!!!!
Love you, Stacie!!!!!!!
Kelli
You are always in my prayers. A special prayer request sent after I read your email and before I sent this response.
Deb
Dear Stacie,
I am delighted to read your account of the past couple of days. Though in so much pain and having those really scary moments, your sense of humor thrives! This adventure of yours is so surreal sometimes, I just saw your beaming face on the news Sunday evening! And as a matter of fact someone asked me that very day how you were doing and I said "Well she was interviewed this evening on TV and she looked great!". Ah, but I should have known that looks can be deceiving and then I get your urgent request for prayer! Thank God He is in charge!
No matter what we have to deal with may it be with grace and peace that only comes from our heavenly father.
Take care and keep us updated.
Love ya,
Tina
Thanks for keeping us posted. My parents saw a news story you were in over the weekend & really enjoyed it.
Glad you were able to write after being 'cloudy'. Yesterday was the first day of 14th & Chesnut summer program, & it sounds like they've got a great group of interns. Don't know if I told you, but I am Angela's big sis through BBBS. It's been neat to reconnect with her & her family over the last 5 months.
God Is Our Hero!!
Bethany
Hello Stacie, I just want you to know that I follow your posting. I sometimes find myself asking God why is it necessary for you to have to deal with all of the pain that you deal with, and when I read your postings I sometimes feel that I am in the pain along with you. I know that God makes no mistakes, and He is truly with you, I also know that you are a living testimony to all that God is. We all have a purpose here, and I believe that part of your person is to inspire others. I can truly tell you that you have been a true inspiritation to me. When I first came to the center, I came because I thought there was something that I could give to the center. But because of you, and Bill I now realize that there was something that the center could do for me. Because of you and Bill, I am a changed person, and I am not afraid to do the work that God has given me to do. I have been facing many challenges in my life, and because God gave me the opportunity to know you, and to love you, and more important to be loved by you, I have been able to do so many things, to help so many others. It is so amazing how God works in people's lives. It is so amazing how God brings together the people He wants together for His purpose. He put you in my life to be the inspiritation that I needed to do the things I do for others. I have never been so happy in all my life. Because of you and Bill, I have been able to find the true direction that the Lord wanted me to be on. I am currently helping to build up a new church, working with the children at the center and away from the center. Doing community service projects, and nursing home ministries. Youth Group, Praise Dancing, Drill Team, Choir. So many things to make sure that the children will have what they need to be able to have the life that God wants them to have. If God had never placed you and Bill in my life, I often wonder where would I be. Lord where would I be? I love you Stacie Marlin, and you are forever in my prayers.
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