My Two Favorite Dorks

My Two Favorite Dorks

Tuesday, June 24, 2014

What's the Latest? (Part One)

With transplant I trade a world of treatments and oxygen for a world of pills and unknowns.
To my friends, family, acquaintances and other people following my journey:

I have decided to create a page that I can link to with more specific information on what's happening now that I am listed for transplant. The newest information will always be at the top.
I love you guys!! 

**For information since I have been listed, please see Part Two of this thread**

Thursday, July 17 - listed
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.

Wednesday, July 16
I thought today would be the day I was listed! But it was not. 

Had my final appointment with one of the surgeons today - it went really well and also ran really long. I was almost an hour late to my infusion that was scheduled afterward. Anyway, I waited and waited and waited for my coordinator to call and say she'd listed me - or really anything! I tried calling her and figured something must have come up. Turns out the surgeon's notes from today were not yet entered into the computer so that my coordinator could see them and get his final "okay."

Five o'clock came and went... Todd and I met a friend out for dinner, and then went to a movie to distract ourselves. I am going to touch base with my coordinator in the morning and we will proceed with listing as long as I am not feeling any ill effects from the infusion I had today (it's to strengthen my bones.)

Monday, July 14
I thought I had jumped all of the hurdles and was going to be listed today but no! My coordinator came back in town (vacation last week) and said that I need to come to clinic on Wednesday for a final set of labs, an EKG and to have a final meeting with one of the surgeons.

So, we keep waiting! Patience is the name of this game I realized long ago. It also helps that I am not desperate for lungs or else I may be singing a different tune.

Had a great day at rehab today! Walked 31 laps (just over 1.5 miles) in 30 minutes! I was worried that not exercising most of last week would set me back but apparently not! It is SO SO SO nice to get out of rehab at a reasonable time, to be able to run an errand on the way home if I'm up for it and to NOT be sitting in rush hour traffic. :)

Thursday, July 10
My admission to the hospital was ultimately successful but not without a lot of frustration. I waited 20 hours after being admitted to find out that an admission may not have been necessary. Long story short, desensitization was probably neither necessary nor would it help my itching and mild outbreaks from the Meropenem. But ultimately having me admitted was the fastest, safest route to get Meropenem on board with me.

So there was that. Instead of a full desensitization they simply gave me a 1% strength test dose (while closely monitoring me) followed by a full strength dose (also under close monitoring). It went well so we now know that I can tolerate the medication without major issues.

I got one additional item checked off my never ending (it seems) pre-transplant to-do list: an ENT doctor came and got nasal cultures from me. I was thinking it would be a torture session because going to the ENT truly is one of the most awful things about having CF but really it went very well. Check.

Blood sugars: I had two really good meetings with a woman from their endocrinology team who works a lot with CF patients. I was dreading seeing her because my sugars have not been the best and I get to feeling very defensive about my numbers sometimes, especially if someone doesn't know me well enough to know what a good patient I am!

Overall, the last six months have seen so many changes with my diet, eating frequency, exercise amount and amount of stress that it will end up needing to have been a fairly major overhaul to my pump programming when this is all said and done. But endocrinology assured me that I was doing the right things and that my numbers would soon reflect that and felt they would soon be kept under control about as well as one can keep them under control considering the circumstances and variables right now.

So that's a quick run down. Oh, and a status update on being listed? As I was leaving the doctor poked his head in "I'm going to go ahead and list you" he said. Then thought for a second, "oh wait, we have to see how your blood sugars do over the next couple of days. Let's touch base on Monday and get you listed early next week."

So it looks like Monday or Tuesday - barring no more hurdles. Holy shit!

I would not have survived this hospital stay without the gracious assistance of an amazing woman who both kept me fed and supported my coffee habit.

Monday, July 7
Tomorrow I go into the hospital to start my desensitization. I hope to be out by Friday, or Thursday if I'm really lucky. The remainder of the loose ends should be tied up while I am there. I will have more to report then!

An absolutely gorgeous weekend in the mountains, mostly sunny with temps in the 70s. Great to be there.

Wednesday, July 2
I know, I know, aren't I listed yet? The answer is no. There are so many ducks to get in a row for transplant. It has felt very much like the bear who climbed over the mountain only to see another mountain in front of him.

Here is what I know:
  • TODAY I graduate from pulmonary rehab!! This means I am officially done with the pre-transplant program and now move on to an equally difficult but self-paced routine that will have me NOT driving home in rush hour traffic every day - yay!
  • I am meeting my coordinator TODAY to sign consent forms - yay!
  • I am going to the mountains over the weekend to enjoy a relaxing 4th of July with Todd and the dogs - yay!
  • I will be admitted to the hospital sometime next week (yet to be determined) for desensitization to the antibiotic Meropenem, to get a bone-strengthening infusion of Reclast, and for an updated nasal culture. That will take 3 days or so.
  • Given all of this, it is likely I will not be officially listed until the week of July 14. 
It keeps getting moved around but - trust me - that is the nature of this game. Obviously I want to get listed but my health is also stable now so there is no big rush. Rest assured if anything did get bad I could be listed right away.

Thinking of Montana today...wishing my brother-in-law Brad a happy birthday today and dreaming of future trips with new lungs.

Thursday, June 26 - Todd's Birthday!
Today was a great day. Had a really good session with the transplant psychologist. Things are really coming together for me in my head - yay! My feelization for the day was, I can do this! What the hell have I been stewing about the last two months?? But of course, it's all been a process.

As far as my meeting with the pulmonologist, we now have a plan: as soon as the committee officially approves me (hopefully Tuesday) they want to start desensitizing me to an antibiotic I am allergic to that they want/need to use after transplant (and that I may need for a flare-up pre-transplant).

To desensitize, I would be in the hospital for a day or so, and once they know I can handle the drug without a reaction they will send me home and - wait for it - officially list me!

Because my expected wait time is 2-3 weeks (I think) I would be on the drug continuously through and then after transplant.

So it could be as soon as next week, although Todd and I requested another week so that we can go up to the mountains for the 4th of July weekend...assuming these fevers and fatigue I've been having off and on don't turn into anything worse in the next week. We haven't been up there for a really long time. AND we are having the house thoroughly cleaned and the carpets cleaned before we go - it will be a whole new house! And one in which I should be able to breathe a lot better.

That's all for now - I may add more later but it's time to join my husband watching a movie on his special day. :)

Wednesday, June 25
I am feeling very good after my appointment with the infectious disease doctor today. We talked about which antibiotics to use on me both now and after transplant with my recently developed drug allergies. 

Since I am in need of starting IVs again very soon (quite possibly tomorrow), it will be a good experiment to see if we can find a penicillin-based drug that I do not react negatively to.

So yes, I am starting on IVs again...after only 2 weeks. I have been having low-grade fevers and fatigue off and on since this weekend. Two weeks!

And one other thing, kind of big. Dr Wolfe and I decided today that now was the time for my CF care to officially change over to Duke. As much as I love all of my UNC people, I feel this is the best thing now. Heck, what's one more major life change, right?

Tuesday, June 24 - Endoscopy
Today I had an endoscopy - they stuck a scope down through my esophagus into my stomach and then the upper part of my small intestine. The procedure is usually done under anesthesia (i.e. totally knocked out) but whether due to one of the many many screw ups that happened with the scheduling of this appointment or not I only got lightly sedated (i.e. I felt every inch of that huge scope going down my throat and moving around for about 10 minutes.) Not the most fun thing I've ever been though. But the drugs were good indeed!

They took some samples to send off but there was nothing they were worried about which is great! They did take a sample from my small intestine to rule out what may be evidence of Celiac disease (gluten allergy) but hopefully that will be nothing.

This is a very important week, specifically Thursday is a very important day. I go to clinic that morning for labs, pulmonary function tests and an arterial blood gas and that afternoon I meet with one of the head pulmonologists who will potentially clear me for transplant.

What does this mean exactly? It does not mean that I will then be listed. It is simply the final hurdle that I have to cross.

What it does mean is that next Tuesday - July 1st - the transplant committee will discuss my case and likely decide to list me. Then I get entered into the computer, find out my allocation score and then the call could come at any time. Some people get called that very day. I keep thinking how insane that would be.

Have I mentioned that this is both super exciting and also terrifying? I think I may have once or twice...

So we are now waiting on the biopsies from today (won't be back until early next week), waiting to see how my numbers look on Thursday, waiting to talk to the doc on Thursday and then waiting to hear what the committee says on Tuesday. Oh yes, and we are keeping a watchful eye on some fevers that I've been having and hoping for them to go away. If not, they are likely due to my lungs acting up (one week off IVs!) and we will have to address how to handle it given that I am now allergic to at least two of the handful of drugs that now work for me.

1 comment:

  1. We're waiting on all those things with you, L D - A - D and Mary Ann