Blood moon karma...

Blood Moon 2014

Don't you just hate it when you anticipate something all day long and then when it is finally time for the event, you totally blitz it. That was me yesterday with the Blood Moon eclipse.  To add insult to injury, I lay in bed with raging insomnia during the 2 1/2 hours of peak watching time. Ugh.

Rewind to earlier in the day.  I went to Denver for my post hospital doctor's appointment.  I thought it would be a quick in and out but unfortunately I got the full CF team treatment--dietitian (yes, I know which foods are rich in iron and yes, I am fully aware of good protein sources as well and I consciously eat them; it just doesn't seem to make a difference to my blood!); social worker (yes, I feel supported and I know I can call your office any time with concerns I have with my care.)  Maybe at this point, the careful reader has noticed a wee bit of irritation with quite normal and average things...thank you steroids for making me irrationally annoyed.

As my appointment progressed, I was able to chill a bit thanks to the reports I got.  My pft's were back up to 29% and my lungs sounded good under the stethoscope. Finally, a bit of good news for a change! Dr. S was very encouraged that our new regimen actually gave better results than we thought at discharge. I believe it was getting off the Vancomycin, which tends to seize up my airways, which allowed the progress to be recognized.

We also discussed my treatment plan going forward.  I am going to stay on my two IV meds and be desensitized to Cipro on Thursday.If I tolerate that well, then we will take away an IV med the following week and the last med a week after that. Then I will be on oral Cipro for the total of a month before stopping it too. At that point we will see if my body is able to maintain a reasonable level of stability (longer than the current three weeks) before needing additional intervention.

Rheid and I were both so happy to get a good report and have a plan.  We talked about maybe taking a trip to visit family or something fun while I was feeling so good.  We thought ahead.  We dared to think we were due a break.

Fast forward to later that night.  After my restless legs were starting to settle down and sleep felt like it was within my grasp, I coughed. Not hard. One small throat clearing cough and I was on my way to dreamland. Then the blood came. Then the sleep fled. Then the plans stopped. Then I felt defeated. Not the blood I had anticipated seeing all day--no matter how much I wished it was. I can only look to the heavens for strength to look forward.

March madness...

February--entire Olympic games--in hospital.  March--entire NCAA Basketball tournament--in hospital. Does anyone see a pattern here? Since I am leaving the hospital tomorrow after a 3 week stay, I feel confident The Masters can go forward on schedule this weekend without my hospital assist. Hoping to make it past the Kentucky Derby and aiming for the World Cup!

This hospitalization began with a heart cath.  Duke wanted me to have one to check for pulmonary hypertension.  If the pressure was found to be high, I had a one way ticket punched to Duke and lung transplant. The procedure went well and found no significant pressure change from when the cath was first done during evaluation week there two years ago.  Good news for my lungs, bad news for knowing any more about when to go forward with transplant.

Being sick again so soon is a step towards transplant however. So in this hospitalization, Dr. S decided we needed to try medication that my Pseudomonas infection hadn't seen in a long time. (Cue scary music here.)  It was time for a trip to the ICU to be desensitized to Zosyn, a penicillin drug. Fortunately, the desensitization went well and 18 hours later I was back on my floor.  Unfortunately, the Zosyn doesn't seem to be the silver bullet we were hoping for--just average. Bummer.  To keep my positive trend going after leaving the hospital, I am going home on IV's; I'm not sure how long I'll be taking them.

I did have an experience this admission where I was reminded of the power of prayer. After a night of very little sleep, a nurse came in at 6 a.m. to get a blood test. Because these draws are done through my port, I usually try to go back to sleep while the nurse fusses with it.  But this time she couldn't get the port to draw back blood.  After what seemed like an inordinate time of fussing, she finally announces that the port will now not even push fluids.  Fast forward to a total of 4 re-accesses and 2 nurses and my port is pronounced  DOA.  At 8 a.m. Interventional Radiology (IR) is notified that my port needs to be evaluated.  If they can't get it to work or if they see damage, then the port would have to be removed and another surgically implanted. I was very concerned because no heparin had been able to go in to avoid clotting. I waited all morning and afternoon for IR to come get me and finally at 4:30 they called and said I would not be seen till tomorrow.  Not a happy camper with the IR staff.  I'd spent all day waiting and getting no medication.  So after 3 attempts, the nurse started a peripheral iv in my arm.

One main concern I had was that at Duke they remove all ports at transplant. So I didn't want to get a new port just to turn around and have it removed again. That's a bit of trauma I would rather avoid.

My fluoroscope had a large screen on
the side so I could see what was
happening.

At 11:00 the next morning I went down to IR with a prayer in my heart.  The head technician accessed my port and it looked good on the fluoroscopic screen. But when she went to flush it, nothing but pressure--nothing going in and nothing going out.  There was no way to get the contrast into the line to see what was wrong let alone get the clot-busting TPA in where it needed to be. When she said it looked like my port was a goner, my heart sank.  But then she asked the others if Dr. ? was available. They grabbed him from next door. He thought the needle looked like it was in the right place as well but he said he would give it one last try.  So he put in yet another huber needle and this time with his strength, he was able to push a small bit and get a few drops of blood to return.  He got a little contrast in and they could see the end of the catheter was blocked. My hope was that enough TPA could get in to make a difference, only time would tell.  I had two hours to wait and hope and pray.

As I was leaving the procedure room to go back to the post op waiting area, the technician said, "If this works, you should go to Vegas because you will be one lucky girl."  So I sat and sat and sat for almost 4 hours before they could get me back to the procedure room to check if my port was viable now or not. When she attached the flush she said, "Cross your fingers."  As the contrast flowed in, I could see the liquid move on the fluoroscopic screen.  I was so thrilled and so were the techs who had been helping me.  "Wow, you really are lucky!" the head technician said.  I turned to her with tears pooling in my eyes and said, "Luck had nothing to do with it--I was blessed."  She smiled and agreed with me.  What a tender mercy to have this sixteen year old port continue to function.

It's been a long three weeks but I've made it. So as I look forward to getting home tomorrow, I need to remember the blessings and not focus on the madness this disease creates.

On a winning track...

Here I sit on a Monday afternoon at the Denver Bed and Breakfast watching the Men's Aerials and wondering with all the wild genes I've inherited, why I didn't get at least some "wild" in my DNA structure.

These winter Olympians are fearless!  Due to my adrenaline-phobic self, I've determined my only shot at glory, should I be so inclined, would involve stones sliding down an alley of ice with me wielding a Swiffer and sweeping like a possessed housekeeper. And honestly, I've watched about a combined hour of curling and I still can't figure out what the point strategy is.

But one thing is for certain, being able to watch these Sochi games has helped pass the time during my latest hospital admission.  I came in on the 4th following three straight nights of hemoptysis and shortness of breath.  Waiting another week to make it to my Duke appointment became too much for me to deal with.  I felt like if I made if successfully to Durham, I wasn't sure if I would have to be admitted there.  What a mess that would be.

Coming in turned out to be a good decision.  My pft's were a non-stellar 22% and an x-ray revealed an area of pneumonia in my left lung.  No wonder I was feeling so crummy.  But now after two weeks on colistin, linezolid, merropenem, and ceftaz, life is feeling much better.  We rescheduled Duke for March 10th and will see what happens there.  And I hope to be home watching the closing ceremonies from the comfort of my couch.  Sounds like a winner to me.

Editorial note:  Although the Super Bowl turned out to be a super bust, I still love my Broncos and my Peyton shirt with its damaged mojo is washed and ready for next year.  We will live to win again.

I've got Bronco fever...

Time on my hands = a new blog look.  A week ago last Friday I started running low grade fevers and they have been basically non-stop ever since.  I went to do my rehab on Tuesday and it was brutal.  I had to slow way down to breathe because my heart rate was so elevated--from the fevers I think.  CF center said to ease up on the exercising and get fluids down me.  So I've been flopping around and drinking water like a sponge.  I was just short of three weeks off IV's when all this began and the previous two weeks I had felt better than I have in quite some time.  I should have knocked on every wooden surface within spitting distance.  People were telling me I looked good and I had the audacity to say I felt good too. Might as well put a bulls-eye on my chest playing fast and loose with the CF Force that way.

Somehow I need to make things work so I can get out to my Duke appointment scheduled for the 10th of February.  They gave me almost 4 months of freedom and I was determined not to go back with newly cleaned-out lungs like I've had the past three times.  I wanted them to see the true me in all my crackly, wheezy glory.  Not sure how it's gonna work.


On a much happier note, our mighty Broncos are Superbowl bound!  I've worn my team t-shirt the past two games and refuse to wash it just in case Peyton and the boys need some of the lucky mojo still clinging to my #18 apparel.  Bronco mania is everywhere.  One can not turn on the news without hearing what Peyton had for breakfast, what the newly-projected weather forecast is for Giant's stadium (it changes daily), what Peyton had for lunch, what the injury status is for key players, what Peyton had for dinner, and on and on it goes.  I am loving every minute of it.  After thinking we were set to win last year and then going out in the first round of the play-offs, we fans believe our team deserves this chance to win it all this year.  GO Broncos!!

2013 good riddance...

What a year this has been.  I've had a difficult time writing my blog because to quote a famous film star, "If you can't say something nice, don't say nuthin' at all."  Yep Thumper, that about sums it up.  Between spending all of 2013 in different degrees of dizziness, to cataract surgery with its three months of wearing ugly glasses, to an embolization that did more harm than good, to being diagnosed with glaucoma, to IV's every two months with new side effects of stomach pain and mini migraines, to losing more lung function, together with other family stresses,  2013 hasn't exactly made my top ten list.

I just finished up another 25 day course of IV meds two days after Christmas and although I am not coughing near as much or feeling so congested, I seem to be breathless doing the least little thing.  Not sure what to make of this but really don't want to mention it to my CF team for fear I'll be admitted for stronger meds (the ones that scare my kidneys) and I just wanna give my poor body a break.  We'll see how things shake out in the next week or two.

Christmas was very low key this year. Found out Amazon is a sick girl's best friend since I didn't feel like leaving the house most of the month.  Due to my Prime account with them and the speedy "Men in Brown," we were spared a Dickensesque Christmas however.  Even Christina's holiday box made it to Virginia in the nick of time (a Christmas miracle!) which would have been doubly tragic since she couldn't make it home this year.  On a strange but true note, we decided to take down our Christmas tree early (usually wait till after New Year's) because the green-covered metal thing caused interference with the wireless network thus causing all our computer electronics to go randomly on the fritz.  Christmas tree or internet connectivity--we have our priorities!  

Here's to a great new year in 2014!  May I be as blessed (because despite all my complaining, I truly was) as I have been in the past.  May you see the blessings in your life as well I pray.