(Just so you know.... It's a long blog!!! Talking about Spencer's recent clinic appointment and what was said with his health status after this Day 15!!!!! very long!)
Day 15 - A bible Verse
"... I taught you to remember the words of Jesus. He said 'It is more blessed to give than to receive!'" Acts 20:35
How true this verse is! I tend to give WAY more than I receive and it feels so GOOD. I love helping others and doing service. Puts a smile on my face and in my heart. Good things will come to those who give and I really do believe that. Something I've wanted to get into the habit of doing is waking up in the morning and asking myself "Who can I help today." I've noticed that when my morning starts off with helping others or even just taking a moment to say hello and ask a person how they are doing, my day goes SO much better!! Even if it is the simplest thing as realizing a man cannot figure out the breaks to the wheel chair and quickly doing it for him even though you are in a rush (This was a couple weeks ago that I did this!).... It makes me feel good =) I have also been on the receiving end of giving and service and so I know how amazing it feels to know that others are willing to take a moment and help you out. Such an important thing!!!
Now on to yesterdays CF clinic appt with Spencer. Oh what a morning it was!!!!!!!! First stop was the PFT lab - yikes. things just didn't go as we expected. Spence was consistent with an FEV1 of only 25%. We both at least thought that he would maintain his FEV1 of 31%. So that was a shocker and an immediate disappointment and fear. So while trying to hold back the tears and panic we waited to see the doctor. Got back there and after a lengthy vent session of how disappointed and upset we were with the last hospitalization and doctors - we got to business! This appointment went very well. So many good things were said and we learned a lot.... So here we gooooo!
Since Spencer has been compliant with all of his treatments and medications - they thought it might be a really good time to try a new-ish antibiotic, cayston . They are thinking that Spencer might be one that needs to be on some kind of antibiotic all the time. And so when he is off of Tobi for 28 days, he would take Cayston. This has the potential to help him cough up a lot of mucus that he had no idea that was in there thus improving his lung functions and KEEPING HIM OUT OF THE HOSPITAL LONGER!!!!!! They said that it kills off the bacteria in a different way than Tobi and other antibiotics do, so it could (but also could not) really help! He would have to take it 3 times a day (which is just fine, he does 3 treatments anyway) and has to be verrrry good about cleaning the equipment right after every single dose of the med. It only takes about 2 minutes so thats a huge plus!!!!! We're very excited about it! Spencer and I talked it over and he thinks it's something that he REALLY wants to try - anything to keep him out of the hospital LONGER!
Downside: It takes awhile to get. About a month, give or take. Insurance approval, shipping it here, lots of paperwork.. etc. But My thoughts are that if he can go out of the hospital right before the wedding and start Cayston, he will have a good chance to be feeling GOOD for our wedding in June!!!!! :)
We spoke with the pharmacist and he had some excellent news for us - Spencer is, again, sensitive to IV Meropenem!!!! =D This is very good. His germs were resistant to Mero for about a year and we were forced to switch IV antibiotics in the hospital. He was on ceftazidime (?) for awhile and it was doing the job, but the Mero has always worked best for Spencer. We were told that the Mero is actually MORE sensitive than the Ceftaz! So next hospitalization they are going to put him back on Meropenem and in all hopes he will respond very well to it! So currently he is NOT RESISTANT to any antibiotics!!! =D can you say YAY!!!!!!!!!
While speaking to his doctor, we expressed our concern about Spencer's low PFTs and how when we were last in the hospital some other docs were telling us that his may be his new baseline (FEV1 at 31%). Carveth was VERY encouraging to us and said that she will not accept a new baseline. She said there is always room for improvement and she doesn't think that we should be accepting a new baseline right now!!! How AWESOME is that?! Yes, she is concerned with his PFTs, oxygen needs, and shortness of breath - but she thinks that since he is able to exercise at least a little bit, that he's being compliant with everything, and that he is doing very good chest PT that those numbers could come up! Not to mention if he starts Cayston that could mean even more room for improvement. So as long as Spence keeps doing what he's doing - she believes he can AT LEAST maintain these numbers, if not make them better.
She is also concerned about his absorption. She doesn't think that he's absorbing his medication well enough and so it's not working to the full extent. If you know Spencer's case, you know that he has multiple organ involvement which makes everything really complicated. He has both kidney and liver problems and so when one acts up - everything acts up. She thinks that his liver might not be doing all that great and so she told us to start MCT Oil which will help absorption of the meds and taking them with meals so that he's taking enzymes with them - she said the enzymes will help maximize absorption.
We found out that Spence hasn't seen his liver doctor in over THREE years!!! Whoops!!!!! That's not a good thing - so she thought it was priority that he get in to see him asap. Soonest appt was in August - figures. So she told him next time he was admitted that they would make sure he gets seen in the hospital :)
Alllsoooo Spencer and I brought up transplant. Yikes. scary topic - but something that really needed to be talked about. She told him that as far as compliance with things he has proved himself (I am SO proud of you Spencer!!!) The only thing he really needs to work on is going to rehab while in the hospital. He's been kind of spotty with making it to rehab 100% while he's admitted, but we're going to work on that and next admission he's not going to miss even ONCE! (right Spence!?). She said that of course since he has bad kidneys and liver that a lung tx would be a lot more complicated because there is a big chance that he would need a double lung/ liver transplant. Uhmmm. holy crap. We knew this - but that's just crazzzzy. 3 organs..... They've had someone in the clinic do this before and things went well. That's really encouraging that maybe his muli organ involvement won't hinder his chances for a transplant as much as I thought it would. Only downside - we would have to relocate to Pittsburgh, PA for it all. This is all a lot to take in, but if he qualifies and everything - I guess this is what We'll do!!!!!
She said that of course tx is a LAST RESORT option to everything and the reason they are very careful with when they do this is because there becomes a time that by getting a transplant it will either take years off of your life (because you could have had more years with your current lungs) or it can add years on to your life (because you will now live longer with new lungs than you would have if you kept your old). It's a fine line and they want to add AS MANY years to a persons life as possible. the doc wasn't sure if he is at this point yet - but we will be finding out soon!!!!
She said that she is going to put all of his variables and numbers into the computer and figure out his "transplant score". He's had 16 admissions in the last year... and his PFTs are consistently dropping. (though nothing is to say they can't come back up!!!!). She wants us to come back on Monday so he can blow PFTs again and hopefully his O2 need will be back down. She also said that we will discuss these numbers for transplant on Monday. Ahhhh NERVOUS! We will find out Monday how close, or far away, Spencer is for being considered for a TRANSPLANT!!!! It is all so exciting and wayyyy crazy scary. The prospect that he could get NEW lungs and be able to BREATHE is just amazing and beyond words. But it's also such a SCARY process to go through. Please pray for the best, whatever it may be.
Spencer also got a call from the clinic today... and well.... instead of meeting with just the liver doc... they are going to have him go to the LIVER TRANSPLANT CLINIC!!! holy crap! I don't know what all of this means - but they had a cancellation on Monday and I guess carveth really wanted him to see the docs - and they made it for the tx clinic.. We're confused.. I hope this is all just to get his status on his liver and not at all an indication that we have to think about this much sooner. You know what I mean?
So Monday is going to be a CRAZY crazy day.
clinic with CF doc to discuss transplant options.....
liver transplant clinic for whatever reason.....
I am going to be a mess - I am so nervous!!!!!!! I can't imagine what is going through Spencer's mind right now... He must be going insane thinking about all of this!!!
I will of course update - Please pray and think and hope and wish for the best best best outcome that there is in our situation. :) We're excited, but nervous, and scared, and AHHHHHHH! This is all REAL and yes we are talking about some HUGE things, now.. it's not a dream!!!! -sigh- only praying for the BEST!