In February of 2008 I was diagnosed with an incurable, progressive and terminal condition called Idiopathic Primary Pulmonary Hypertension (PH). In retrospect, we can trace this illness back to at least January of 2004, but you can have it for several years before you notice any symptoms. My diagnosis came after I was hospitalized for what ended up being almost three weeks - spent consecutively in three different hospitals - two of them being in ICU units. Over the past year we have been sending email updates to family and friends concerning my medical/physical journey as well as lessons I'm learning as a result.
These are those emails. There's no rhyme or reason as to when I send out another email update. It just happens when "the Spirit moves." But whenever I write and send one, I will also post it on this blog.
I can fall asleep at the drop of a hat - anywhere - anytime. This is a very useful trick I learned from my mother. I have never had sleep problems. But I've been lying in bed for the past 40 minutes wide awake, ready to tackle the day. It's 3 am - this is nuts! I finally decided to get up and type this email. Hopefully once I'm finished sleep will become my friend once again.
On Wednesday a week ago, someone who gets these emails (and found me on Facebook) posted the following verse on Facebook: "Be strong and courageous; do not be terrified or afraid. For it is the Lord your God who goes with you, He will not leave you or forsake you." (Deuteronomy 31:6). Well, I read that - it spoke to me - and I started speaking to God! "Oh no! Not now! We're moving in ONE WEEK - I don't need to go through an ordeal where I need to be reminded ahead of time that you're not going to leave me. This is bad timing!" But I felt incredibly pressured, so I changed part of my "moving battle plan" and worked on different things that were on the list - things that I needed to be the person to do. And sure enough - two days later I was on my way to the hospital for what ended up being four days. (So, I'm not sure why you posted that as your status update - but God used it to prepare me for what was about to happen, and to get my rear in gear in terms of getting ready to move. So, thank you!)
I last sent an update one week ago today (Friday). Aaron and I were driving to Pittsburgh for me to be admitted because I understood that I had septicemia again. I had sent out an email begging for prayers for our family. Apparently THEY WORKED! The blood cultures that were taken in Hershey showed that there was a REAL bacteria (not just a contaminate) in the blood in my hickman catheter. I think the doctors said it was gram negative staff (whatever that means). Well, when we got to the ER in Pittsburgh, two more complete sets (8 bottles) of blood cultures were taken right away. An hour or so later the docs finally decided which antibiotic to start me on, and I was admitted and sent to a real room. I ended up being admitted for four days, and ALL blood cultures that were taken in Pittsburgh were NEGATIVE! Real bacteria don't just disappear!! And I wasn't started on antibiotics until AFTER the blood cultures were taken. The docs were so confused that they did repeat cultures to make sure a couple days after I was admitted! ALL BLOOD CULTURES THAT WERE TAKEN IN PITTSBURGH WERE NEGATIVE. There's the power of prayer for ya!
So, if all the Pittsburgh blood work said I wasn't sick, then why was I stuck at the hospital for four days? Excellent question! I asked every doctor I saw that very question! The bacteria found in Hershey was a real one, and the doctors couldn't agree what to do. I looked healthy - I felt healthy (by the time I arrived in Pittsburgh though definitely not when I was at home) - but if there really was bacteria hiding somewhere in my hickman and they sent me home, I could have gotten deathly ill. So, the doctors had a rough time agreeing what to do. (And I felt like a child who was grounded for something she didn't do.)
Finally what was decided was that the possibly (?) infected hickman catheter would come out. That way if there was bacteria hiding in it, they'd be removed and problem solved. But I need the hickman to get my constant iv, so they needed to decide how to administer my drug instead. So, a PICC line was put in my arm. It's like a semi-permanent iv that goes in my right upper arm. The inside part also goes straight to my heart just like the hickman did. For some reason, the type of medicine I get can't go in just any vein, it has to go straight to my heart. But this solution posed some problems of it's own. If my hickman was really infected, and a PICC is replacing it, and those nasty bacteria were also at the end point (in my heart), then when the PICC goes in, it'd immediately be infected. Decisions - decisions. Technically since this new method can also get infected, it was decided by the powers-that-be that it could only be a temporary solution.
So, on Wednesday, November 11 I'm being readmitted for several days. I will start getting my medicine sub-cutaneously in my stomach area (kinda like an insulin pump). A little iv tube will be inserted into the fatty layer (which I have plenty of!) and my body will absorb the medicine. Since no iv tubes will be going in my veins anymore - no chance of blood infections anymore. Problem solved! There's just one catch. There's a 50-50 chance of me having excruciating site pain. I've met two ladies who get Remodulin this way (from my Hershey support group). One of them has the pain, and the other doesn't - just like the research shows - 50-50 chance. I'm praying that I fall into the "no pain" category!
So, once all of this was decided and worked out I was finally released late Tuesday afternoon (just in time for rush-hour traffic), and my mother (who had driven out earlier that day) drove me home to Mechanicsburg. Twenty-three hours after arriving home from my four day hospital stay the moving truck arrived. And praise God (thanks to my burning desire to be productive the weeks before hospital and lots of help from friends) we were completely ready for the truck! So, the truck was completely packed in 4.5 hours on Wednesday (thanks to 11 sweaty guys). On Thursday we finished up a few errands and by noon were on the road driving to Pittsburgh. Tonight we're staying in a hotel (which is free thanks to Aaron traveling for work so much recently). And at 9 am this morning (Friday) we're buying our new house! Originally the doctors wanted me readmitted on MONDAY to switch to the sub-q - - I just laughed at them. So, finally we agreed to give me a week and a half to at least find the toothpaste, etc. at the new house.
So - thanks for ALL the prayers! THEY WORKED! The bacteria "disappeared" miraculously. I was discharged in time to move. I got a doctor's note saying I can't lift anything for two weeks (because of the new PICC and hickman that was removed). And I am being given another week and a half to "settle in" before my next hospital stay.
Well, I'm gonna send this email now. And hopefully that's why I was wide awake in the wee hours of the morning, and I can get back to sleep now.
I know it’s been ages since I’ve sent an update.Life has been busy for the Feitners.Aaron has spent the past 8 weeks working (Monday thru Thursday) in Pittsburgh, and then coming home for the weekends.We sold our house, and bought one just north of Pittsburgh outside of Cranberry Township.Well, we’ve almost bought it – technically that happens this coming Friday (October 30th).I’ve been busy being a single-mom and packing for our upcoming move (with the help of friends).I’ve been so busy with daily life, that I’ve wondered if I was going to find time to send one more update before the move, apparently I am, ‘cause here it is!
As you know, I’m on a continuous iv that helps me breathe, and I also take a pill twice a day.Well, that pill can cause severe liver damage, so I have to get blood work once a month (before they ship the next bottle of pills) to check and see how my liver’s doing.For the past several months I’ve gotten a call from my doctor’s office letting me know that those results were moving closer and closer to the “bad numbers.”Each month he decided to “keep watching me.”Last month when I got that same phone call, I was asked if I drink tea.Well, yes I do – I love tea, especially when the weather turns chilly!Apparently for some people tea (hot, cold, green, fruit, etc.) can affect their liver.So, I was instructed to quit ALL tea and see if that helped keep me on the pill a bit longer.Today I received a call from the doctor’s office and was told that BOTH of the liver enzymes are ABSOLUTELY NORMAL again!!!YAY!!!So, still no tea for me, but at least my liver’s not being damaged (this month, anyway).Only God knows if my liver’s “healed” because of His hand, or because of quitting tea, but either way, PRAISE GOD!
I’ve not been feeling well lately – had all the symptoms of the flu.I know that my compromised lungs make me a “high risk” flu patient, so on Wednesday I called my pulmonologist to see what I should be on the look out for just in case.After listening to me, the nurse spoke to my doctor, and he decided to do some precautionary blood cultures in case I have something bacterial that needs an antibiotic.So, I went in on Thursday for the blood work, and got a call this afternoon with the first set of results.Apparently I do NOT have the flu.I have a cold. So, that’s good.Oh yeah, and I also have SEPTICIMIA … again.My mother came to town on Wednesday night (when I told her that I was sick and needed help with the kids), so she’s watching the boys at my house, while Aaron and I are driving back to the ER in Pittsburgh (he’s driving as I type).We’re still dialoguing with the doctor about what to do long-term to stop these infections (most likely a medicine change).But for the short term, they’ve got to get rid of this infection (which most likely means pulling this hickman catheter out).He told me to expect to be there a couple days (yeah – um – I’ve been through this once already).I’m REALLY hoping and praying that this time around I’m not delirious, or vomiting constantly, or, or, or, OR….Sigh.We could all use LOTS of prayers right now.
I really try not to be a complainer, but the last time I had this, the only way to describe it is PURE HELL.I’m praying that since they caught it earlier it won’t be quite as rough this time - delirium and not being able to open my eyes or move is quite unpleasant.I tried to smooth over how bad it was in my previous emails, but frankly put – septicemia KILLS.The research I did said it was like a 50% mortality rate for the category into which I fall.I’ve survived it once so far, and God’s promised me that I won’t die till I’m healed from Pulmonary Hypertension, but that sure doesn’t make the experience any less difficult.So, please keep ALL of us in your prayers extra this week.
Like I mentioned earlier, we’re supposed to settle on our new house next Friday.This means that we’re packing the huge moving truck next Wednesday, and driving to Pittsburgh next Thursday.Based on my previous encounter with septicemia, there’s NO WAY I’m going to be in ANY form to do ANYTHING regarding the move.I might even still be in the hospital!I know that the move can happen without any more input from me, but I feel responsible for making sure everything runs smoothly.“Managing” falls more under my strengths than Aaron’s.I already know I won’t be lifting even ONE box, but it’d at least be nice if I could be part of it. (Here’s a quick ‘thanks’ for all of the people who’ve offered to help us both here and in Pittsburgh!)
My biggest fear about moving to Pittsburgh is that we’ll be so far from our support network, and it looks like I’m going to need support immediately.Guess God’s wanting to make sure I’m completely dependent on Him once again.Ummm… I get the point.HE should be my chief support network, not just the people around us.
So, thank you for all of your prayers for our family.We ALL need strength, prayers, and love right now.I know God will work all of this out – it’s not a surprise to Him.But, it sure is a surprise to US.