|Waiting for transplant means being as strong as a lion and as nimble as a little kitty cat|
To my friends, family, acquaintances and other people following my journey: I am going to try to keep this page updated with news about what's going on with me now that I'm listed for transplant. Thank you so much to everyone who has opened her heart to my adventure.
Thursday, Sept 11 - 8 weeks listed
Today marks two months of me being listed for transplant. This is roughly double what we thought the highest estimate would be. It feels like we are starting to settle in for the long haul. Unlike last week where the wait had really started grating on us, we've resumed more of our normal lives (doing things with friends, making future plans, etc.) and that has done wonders for our mental health.
Not a lot of news to report from the last week. I have heard of only one transplant that happened, and it was a single lung.
Health wise I'm remaining stable...my white count is creeping up again, same old story there. My energy is pretty good, rehab is awesome (walked 2 miles today in 40 minutes!) although getting really old...five days a week just feels like too much right now. I am giving myself tomorrow off. My rib is doing better. I have also managed to put on a couple of pounds.
On the not so positive side, I am completely sick and tired of doing IVs every 8 hours!! It has been 10 weeks with no break. I'm. So. Over. It.
I am still coughing a lot, coughing up choice goodies (no blood though!), coughing a lot at night, sometimes I feel like I'm going to pass out when I cough...that is something new. Often things just feel stuck in my lungs. I've been having some back pain and hip tightness. I forget stuff constantly. Every day on my way to rehab I decide if it's a two-Advil day or a four-Advil kind of day - Advil takes the edge off my general "yuck" tired, worn out body feeling.
Basically, my life right now = one big party!
Next week I will go back to clinic for my monthly "check in," testing, meeting with doc, etc. I'll let you know how it goes unless there is something to report sooner!
Thursday, Sept 4 - 7 weeks listed
Waiting is getting old. Really fucking old. It's old for me, it's old for Todd, and I know it's old for all of you, too.
There has been a "lull" in organ donation recently - no shit!! According to my coordinator, Duke has gotten offers but none of the organs have been up to their standards. I feel a little better knowing they are at least getting offers. And it does not appear that my antibodies are playing a larger role in my wait as I previously suspected.
Duke has 16 people on their list right now! That is huge for them - the highest I've ever heard it be is 12. Usually 10 or fewer. And it's not just my blood type that there has been a lull for, although there are a lot of O's on the list right now. Also, the donor surge over the Labor Day holiday didn't amount to much. Although there have been a few calls this week, perhaps a trickle out from that.
So that's pretty much it: No one's getting transplanted and Todd and I are getting cranky.
Wednesday, Aug 28 - almost 6 weeks listed
Awesome news - my LAS score has gone up to 40.94!
How did this happen so quickly without a big drop in my health? At my last pulmonary appointment, the pulmonologist and I agreed that I should come in one day before exercising, before doing my vest, before hypertonic saline, Pulmozyme, inhaled antibiotic, Prednisone, Singular, Zithromax and Zyrtec (all the things that prop me up and keep me as healthy as possible) and do pulmonary function tests. My last couple of PFTs, we think, make me look healthier than I actually am.
So I went in today without doing any of that stuff to get a truer reflection of where my lungs are actually at. (Man it was strange leaving the house without doing therapy. I can't tell you the last time I did that.)
The experiment was a success! My score went up about a point, which doesn't seem like much but puts me further ahead in the pack. Higher score + holiday weekend = very good chances of me getting a call this weekend!
Thursday, August 21 - 5 weeks listed
Lots of good news today!
- We retested my white blood cell count yesterday after concluding that the spike must be "just" from lung infection and my number has gone from 30 to 13! This is awesome and means we must be doing something right. So no antibiotic changes for now.
- I told you we were tinkering and my LAS score has been adjusted from 38 to 39. While that doesn't seem like much, I have moved up two places on the list which is awesome.
- We retested my A1C (diabetes control) and my number was down to 6.8! That is awesome - my blood sugars have been really good so I was the one who requested a retest. I feel happy for all of my hard work. In the end, I don't think it's so much any major changes I made did but rather more natural fluctuation in control...because seriously, if you saw all the sugar I've been eating lately you would be amazed!
If no calls come this weekend, I have a doctor visit on Tuesday which will give me another chance to possibly adjust my score a little higher. We'll get there!
Thursday, August 14 - 4 weeks listed
Today was supposed to be a quick trip to clinic for drug levels before rehab, with an add on of PFTs (pulmonary function tests) and ABG (arterial blood gas) to see if my condition has worsened any to make my LAS (lung allocation score) better, speeding up the likelihood of transplant.
Labs went as planned. The PFT lab was running behind so I decided to go to rehab and come back later. I had my heart set on trying to floor class today which I've been avoiding with the excuse of my rib hurting. Floor class was alright, I got my weights and also my walk in and headed back to clinic.
In order to have a change to my LAS for even a point or two, my PFT/ABG numbers were going to have to be significantly worse than they were two weeks ago. I wasn't convinced that would be the case. BUT, I appreciated what my coordinator was trying to do - use what's in her power to move me up on the list - so I went along with it. She knows I have been struggling, and my white blood cell count has been creeping up, I'm now needing the pain meds to rehab, and I'm on three antibiotics to curtail infection with not a lot of other good options pre-transplant. Basically, there is a lot that is "propping me up" right now, and if these things start to fail, we may get into serious trouble very fast.
The result? My numbers - every single one of them - were higher than last time. Maybe it's because of all the exercise I'd had today, but I think it was basically as I suspected, that my infection is sort of under control right now and my broken rib isn't affecting my PFTs.
So that was a waste of time! I was on my way home for the day (ok, you caught me, I was in the Starbuck's drive thru!) when my coordinator called me to say that my white count from this morning was really high. It's not uncommon for me to run high, up into the low or even mid-20s, which is pretty damn high ("normal" is under 10) - today I was up to 30! They wanted me to come in for blood cultures asap to make sure I don't have a blood infection going on or that my port itself is not infected.
So back to clinic I went for the third time today! (Did I mention that each trip to clinic is a 10 minute walk to and from the parking garage? Yea, got a lot of walking in today.) They took three giant bottles of blood from my port, and three identical bottles of blood from my vein (think slightly larger than airplane bottle size.) I will find out results tomorrow.
My speculation as a lifelong patient, etc. is that my port will end up coming out and will be replaced by a PICC line if there's any chance at all that it could be the culprit. It's coming out during transplant anyway, so there's a low threshold for removal, and there's no sense in putting me on even more antibiotics/anti-fungals to try to treat it right now.
To me, a port infection makes the most sense. I've never had a white count this high to my recollection, and I would not have been able to make three trips to clinic and go to rehab today if this was from infection. Or so my thinking goes. But enough speculation - I will update when I know results in a few days.
Friday, August 8 - Broken Rib = Ouch
Today I felt vindicated - proven right, reasonable and justified - in my search for pain control over the last week.
I met with an Infectious Disease doctor today who I really like to discuss whether or not we were on the right track with my antibiotics and to address the pain I've been having. It didn't take long for him to discover examining me that, as I suspected all week, my rib was fractured.
After that, it was like music coming out of his mouth as he explained that while Duke has a strict no narcotic policy, this was most certainly a case that should be an exception - especially as the pain is hampering my airway clearance and pulmonary rehab. He was going to have a chat with my pulmonary doctor but as soon as he said that I knew they would allow me to take some of my Vicodin for pain. Yes!!!
I felt so happy after that appointment! We finally know what's going on (although I do think I am also having some pain from infection in that lower lobe, but hopefully that will go away with some of the meds I've started recently). And not that they didn't all believe me before, but now I have something concrete to show them: coughing with a broken rib from coughing is painful people!!
So yes, that "clicking/popping" noise I've been having when I move or breath sometimes - that's right where it's cracked. Unfortunately there's nothing to do for a cracked rib except give it time to heal. The doctor didn't think it would impact my transplant surgery, which is great. And pain management is critical as I need more than ever to be able to exercise as much as possible and clear secretions.
In other news...it's the weekend again!!! Waiting for that phone to ring any day now.
Wednesday, August 6
No calls over the weekend like we hoped. I did hear that one person was transplanted and then two people had a dry run yesterday. According to my coordinator, my score puts me in the middle of the pack (9 people currently). This doesn't necessarily mean I have to wait for half of these people to be transplanted, I just need the right set of lungs to come along at the right time!
Unfortunately I did not end up having a good weekend otherwise, either. My lung pain that started on Thursday got much worse on Saturday. I was almost to the point of needing to go to the ER just to get something to take the edge off. Fortunately, I found some cream that seemed to settle things down (Capzasin). But with my constant coughing dealing with pain has once again been a struggle at times. I was also clicking in the spot with pain!! I was making everyone feel it and freaking them out. The folks at rehab had no idea what it was but were kind of fascinated by it.
I had a CT scan yesterday to again attempt to find out the exact cause of my lung pain (although at this point, "exact cause of lung pain" seems like an oxymoron to me.) It showed no problems with my ribs or cartilage, but it did show an increase of infection in my lower left lobe where the pain is.
SO, we are now thinking that the infection could be making me cough more/heavier which led to some kind of cartilage/muscle/tendon displacement which is causing my pain. To address this, they are putting me on an additional oral antibiotic, changing the anti-fungal medicine I've been on and, if I'm not better by Friday, I'm going to see the Infectious Disease doctor (who is awesome) to decide what other IVs/things to do. They also prescribed Lidoderm patches for pain - I'm happy to try them, but I'm not optimistic they will be effective in treating the kind of pain I'm having.
As for the pain, I don't know what to tell you people - buy stock in Advil! Because I've been using a lot of it. Also my non-benzo muscle relaxers, Tramadol and Capzasin cream. But none of that helps very much, if at all. Rehab has been increasingly difficult this week - it hurts when I take in deep breaths during exercise. Today it kicked my ass. I was so tired afterward I was almost to the point of falling asleep on the drive home.
Friday, August 1
Can you freaking believe it's August? Can you believe it's August and I haven't been transplanted? I am surprised...the doctor yesterday said if I had no antibodies (I have 25%) I surely would have been transplanted by now. I just wanted to complain for a minute about how inane Duke's anti-narcotic policy is.
My side/lung pain escalated today after a distinct "popping" when I coughed while driving after rehab. I emailed my coordinator sure that I could get her to go along with my reasoning: it's Friday afternoon, I'm not sick or in pain enough to go to the ER, but if I continue my Advil/Tramadol/heating pad and continue to be in pain could I take some Vicodin?
Well, no. If I get called for transplant, they will screen me for narcotics. If they are present, they will not transplant me. This is crazy! I know the type of people for whom Duke's policy is a good thing to have in place. I am not one of them. And I feel like my coordinator should know me well enough by now to know that. They refuse to treat me for infection, so I am stuck with treating pain...kinda bad pain...with freakin' Advil! I am so disgusted by all this.
My one avenue to narcotics, potentially, would be to get an appointment at the pain clinic. There they do a thorough assessment, suggest as many alternative things as they can think of (sound familiar?) - but then if that doesn't work they will give you pain meds. Real pain meds. The problem is it takes weeks to get an appointment there.
Thursday, July 31 - 2 weeks listed
I have been waiting for two weeks today. No more calls since the 19th.
Had transplant clinic today - it was good timing because I've been feeling kind of crummy...not exactly sick or full blown exacerbation but just super tired and not myself, a few sniffles and harder coughing. And I developed some pretty decent pain in my left lung with indeterminate cause.
I am doing well by the numbers! My PFTs (pulmonary function test) and ABG (arterial blood gas) were up slightly from a month ago. I was surprised about the PFTs because I really thought the lung pain would have impacted my breathing. I also had an x-ray which showed no significant change (wanted to make sure a collapse wasn't the cause of my pain).
Lung pain is very mysterious, and I am no stranger to it. Lung collapse, mucus plugs, pulled muscles or tendons/bruised ribs, blood clots and pleurisy, can all be culprits.
Pulmonary doctors will always say, "there are no nerves in the lungs!" -- as if that somehow means there can't be pain sensations coming from there. This is very frustrating because of course our pain is very real and does indeed feel like it's coming from the lungs. I am not the only one to experience this.
Anyway, my pain is probably either a mucus plug or infection that has gotten so bad it is irritating the pleural lining. Duke being Duke they want to make sure it's not muscular so I was sent home on Advil and am to start taking my muscle relaxers three times daily as well.
And besides my sort-of vague symptoms from the last couple of days and lung pain, I'm not showing signs of exacerbating. The plan is to treat the pain and if it doesn't go away, try another antibiotic or possibly increase my Prednisone a bit. I know what would help...Vicodin! Well I can dream on about that because Duke will try every last possible thing - and then some - before they will let me take that pre-transplant. <>
The wait continues... It has been hard for me to keep a positive outlook since putting my cat down last week but I feel like I have turned a corner and am once again excited instead of dreading the call. I still miss my little girl terribly.
Saturday, July 19 - Dry Run!
Got THE CALL at 4:20pm today!! Unfortunately turned out to be a dry run but it went as smoothly as it possibly could have. Now we know what to expect - except for, you know, the actual getting down to it stuff. :)
Find out what went down in my blog post from the next day.
Thursday, July 17 - I am officially listed for transplant
I am LISTED! This is both incredibly exciting and one of the most terrifying moments of my life!!
What can I expect? Half of Duke's listed patients receive lungs within two weeks of being listed. The lung allocation score (LAS) is the single most important thing that dictates priority on the list. However, blood type, blood antibodies, body size and whether or not you are willing to accept higher risk organs also play in. I'm sure a lot of you are wondering about the term "higher risk" organs - I will expand on that if I continue to have more time to wait.