What's the Latest? (Part 3)

We've missed doing a lot of things this summer,
but going out to Montana is probably at the top of the list

Dear Readers: I never thought I would be waiting this long! Thank you for continuing to follow my journey. I hope the wait will not fill another long page of updates.

Wednesday, October 22 - stopping IVs!!!
Had a very good clinic appointment at Duke yesterday. I went in there with a whole page of questions and came out a very happy camper. Of course he had no answer for the real question on all of our minds - how come I have been waiting for this long?? - other than that one never knows for sure how long they will have to wait. But he was very surprised I have had to wait this long. Here are the highlights from the visit:

• NO MORE IV OR OTHER ANTIBIOTICS!!! - I am discontinuing no fewer than 5 medications for the time being (4 abx, 1 anti-fungal). This is the first time I have been off IVs in 3.5 months. I am so happy to be able to sleep!!! (Sleeping is way more exciting than being able to shower, trust me.) Nothing has changed to take me off the meds but since I am stable, we don't want my body to become totally resistant to these drugs. When we started these with the plan of being on them until transplant, none of us ever thought it would have been for this long. We are also hoping that stopping the Cipro will make some of my random symptoms go away that may be side effects from the drug (inflamed ligament in my foot, muscle spasms, inflammation along my gum line, increased ear ringing.)
• We made an awesome new discovery! Instead of my crappy feeling over the last few weeks being what I had come to think of as "a new low" I would just have to get used to, we have discovered that in fact it is most likely due to low iron - anemia. I attribute my grumpiness, fatigue, headaches and memory problems to this. We are starting an iron supplement and I am hopeful that will improve things.
• We are going to redo my ECHO cardiogram to see if I show signs of worsening pulmonary hypertension that may be causing my lightheadedness with coughing. If there is significant chance, we may think about redoing my right heart cath in order to improve my LAS score.
• We are going to do an overnight oximetry (here at home, not a sleep study) to make sure I am oxygenating appropriately at night. This is again to see if this might be the cause of any of my headaches/memory issues/fatigue I'm having.

So yes - all good things. I was also able to have them change my routine arterial blood gasses (very uncomfortable needle in your wrist) to venous blood gasses (nice simple draw from my port.) And I got them to back off on the number of routine x-rays I'm getting - x-rays show so little change for cystics (unless there is an incident) that it's pointless to expose me to all that extra radiation! Wish I had that conversation with them months ago. I was thinking when I got home that the doc seemed so amenable to all of my requests...I should have asked about taking codeine for my back pain (also an issue lately)! But I have a feeling they wouldn't have budged on that.

So yes, still much going on, but feeling very good about the place I am at right now and a lot less overwhelmed by my schedule right now (rehab and IVs). I hope I can stay off these IVs for a while.

Friday, October 17 - just over 13 weeks listed
This has been a challenging couple of weeks for me. My IV antibiotic schedule of an hour and a half of infusions every eight hours is really kicking my ass. I have been tired, coughing a lot, not sleeping well, having fits of broncho-spasm (uncontrollable, unstopable coughing), other random things have cropped up. And I think that worsening anemia may be responsible for some of my recent fatigue, bad mood, headaches and memory trouble. I'm surprised that nobody caught that out of all the people I have talked to about these problems.

This week, feeling lost in the doldrums of the Duke system with respect to my CF care (as opposed to my pre-transplant care, slight difference) I went back to see my old CF doctor to check in and get his thoughts on things. It was so great to see him!! And to get his reassurance that he thought I was doing all of the right things. He did have a few little tips, but overall he said that I looked better than before he sent me over to Duke!

Also this week I spoke to the woman in charge at rehab. She was very understanding and accommodating about my recent frustrations and has allowed me some much better options for working out. (More on that in my post from last week.) I also talked to my coordinator about some things that have been bothering me as well. Good to have things out in the open.

The adventure continues!


Thursday, October 2 - 11 weeks listed
This week has been up and down for me both physically and mentally. Blah.

I finally started on an additional IV antibiotic yesterday, Cipro - I had been trying to make that happen all week. I have to say, for all of Duke's wonderfulness, I have found their adult CF care to be lacking. I have been running down slowly over the last couple of weeks...low-grade fevers coming and going, lower energy, not as much exercise stamina some days, more coughing, more shortness of breath than usual.

Me with cat, feeling shit-tastic from new IV antibiotics today

Unfortunately the schedule is kind of kicking my ass...both of my IVs are every 8 hours, which means I am running about an hour and a half of medicine (total) back to back three times a day. It's going to make life tricky for the next couple of weeks.

Psychologically I am also working on a few things.

• Continuing to find balance between compassion for those around me and prioritizing taking care of myself
• Adjusting my expectations of what this transplant wait will possibly look like so as to not be continually driving myself crazy
• Lowering my "baseline stress" level with some new mindfulness techniques that my very helpful transplant psychologist gave me
• Trying to stay positive, surround myself with peaceful and happy people and things

Thursday, September 25 - 10 weeks listed
Quick update:

• The lung drought at Duke seems to have lifted - yay! Of course that is no guarantee, but last weekend's dry run, for instance, was a part of two other dry runs and two other transplants at Duke.
• My lungs still seem to be holding steady. I do have days I feel like crap and run low-grade fevers but those are not often. 
• Rehab has been a bit of a physical struggle - I just don't seem to be able to do as much strength training as I was before. Also, I've been granted a bit of a relaxed schedule for a couple of weeks to help the mental burnout I had. That has helped.

Saturday, September 20 - I got another call!
Another call, another false alarm. The take-away? Duke will accept only the best...which is clearly why I myself am there. :)

Read all about my day.

Wednesday, September 17 - ~ 9 weeks or exactly 2 months listed
I'm not gonna lie, I have been struggling - with waiting, with rehab, with how to parcel out my energy. My positivity has waned. I'm tired of waiting for the perfect set of lungs!

Everyone at Duke - doctors, coordinators and patients - is frustrated with the lack of good organs available for transplant in the last couple of months. Duke's list is currently four times the size it was two months ago. And it has been that high for about two weeks. No one else who is close to 5'4" with O-positive blood and 25% antibodies come to Duke right now to be listed for a lung transplant! (That includes you sneaky life-flighters.) I kid...but being in this situation definitely gives you a morbid sense of humor.

I had monthly clinic yesterday, got to meet another one of the surgeons, Dr Lin. He was nice. Had a full day otherwise of testing and whatnot. Nothing has really changed. When I asked Dr Lin how long I could expect with my new lungs, he said that I have the pulmonary disease with the highest success for lung transplant and I am right in the middle of the age demographic that does the best with transplant (people in their mid-30s.) He said that I could expect about 8 years on average - that's amazing!

It's frustrating being sooo close to a new, incredible life yet still so far away. I can taste it, I can smell it, I can feel it...but at the end of the day I am still doing IVs every eight hours, three vest treatments per day, sterilizing nebulizers every three days, washing my hair in the tub and taking sink baths. (Super bonus flip side: still lots of kitty kissing time which will be a no-no for a long time after transplant...maybe even forever.)

And I'm still going to rehab. This has really been a struggle for me - I cannot figure out how much of it is mental and how much is physical but it's probably both. I'm just tired of it. I have been going almost every single day since early May! My coordinator is going to talk to the doc about me only doing three days a week. I think that would do wonders for my body and my mind. And I may just start by giving myself tomorrow off!
(Update: a M, W, F rehab schedule has been approved for me for the next couple of weeks, just to give me a bit of a break -- yay!!! However, if any fellow Duke people are reading this I have been told that this is a rare/unique situation and to keep it quiet so please, no broadcasting.)

But anyway, I'm not looking for practical solutions or suggestions right now, I'm really just venting. Thanks for listening.