Hi, It's Friday now.. and I'm going home. My pft's were .89... 0.01 lower than what is considered my "baseline" right now.. and equally lower than what I came OUT of the hospital with 18 months ago. I should be pretty happy about my re-gained 60 mL, but I can just tell these drugs didn't do their best, which makes me wonder what I could have achieved. I questioned why in clinic the past 3 times Dr.T used her convincing skills on me by saying 'we have so many drugs to use on you, you're never on iv's and you aren't allergic to anything' and then goes and picks the exact combo I was on last time. The combo that saw me leave the hospital for the first time NOT back to baseline. seriously??
I have talked about this all week with whoever would listen, and I got pretty much the same answer.. The "good" stuff is reserved for when things are really bad and you need to be dug out of it. Fair. I get that. But a couple things come to mind. The obvious one is that I would have been happier with ANY other combo than I got, based on all 4 previous admissions and their results. The less obvious one is that although I am comforted that if something serious should happen they can dig me out, shouldn't part of the goal be to once in awhile see how much farther from transplant they can get me right now? Anyone waiting for transplant doesn't want to be there, and wouldve given anything I'm sure to have an extra year or two before they had to do it. If they use these magical super drugs once, does that immediately mean that they aren't nearly as good the next time (assuming the next time is in, say, 2 years?) or that the lesser drugs also do not work?
Maybe I'm just hoping for too much at this point in my CF life.. I'd love to hear some opinions. Anyways, for now I await my ride home to the life I love and I will go back to working hard to stay there for as long as possible.
I have learned something about what you are saying. And this is something you should keep in mind.
ReplyDeletea. I have been told the same thing time and time again, that there is still SO much they can do (so many new drugs) and usually there are not. I still to this day, don't get why we are not told things as they are, not just to calm us down. I don't like being calmed down, I just want to be told the truth. Our clinic has a problem with being open and direct and to the point.
b. you are 100% right that you should try right NOW to get yourself the best that you can, because really the time is now. You should be on the best drugs, you should try to work out as much as you can, and you should do whatever it takes to buy yourself some time pre-tx
c. 6-8 months ago I was told that I was far from transplant and just needed some extra time in the hospital to 'tune up' and i would even get off oxygen - It was 100% my idea to get asessed for transplant. Nobody approached me about it. I felt that it was time, and thank god I did. I had to fight for it every time St.Mike's put off calling TGH. I wasted about 4 months trying to get their attention.
d. don't ever be afraid to explore transplant a tad bit earlier to get yourself familiar with the diea. I wish I was asessed earlier without the urgency that I felt when I was doing it. But again, I was told not to even think about it. Just because you are being asessed does not mean you have to be listed, but it may save you precious time later.
Remember that you are the only person that is really responsible for your own health. Dr.T is just a doctor. It may be her job, but it's your life.
To make you feel better, I had 4 blood gases in the past 2 days. And I didn't feel a thing all 4 times!! So it's not all bad! Feel good about being at home, work hard at getting that lung function up over 1L, and embrace the idea of transplant as a great option for the future. Be strong, positive, and brave. (but realistic - it's the best road to happiness)
Your already wise-ways seem to have grown even more. I love this advice.. because it seems so practical. Thanks for it, and thanks for making me not feel crazy about the way things are done.
ReplyDeleteI am learning to be more questioning, but in a less emotional manner with the docs (because when I cry or get angry they seem to give me even less of what I need to know). I regret not being here earlier, but I'm grateful I can extend the time I still have to my best ability. I often think about transplant assessment, but am trying to somehow figure out when is slightly early, and when is silly early (to the point that I will DEFINETLY have to re-do most of the testing).
Great to hear about the blood gases, my one decent one wasn't a fluke! :) One last question, does your hand ever have pain/pins and needles for a week after the blood gas test? I think when he hit my nerve it was pretty significant because I still feel it when I move my hand certain ways..
I agree about the whole drug-combo thing... one of my cystic sista's and I have had this discussion a few times. They especially seem to like ceftaz and tobramycin... I've been given that combo since the Sick Kids days (and I was admitted at least 10 times there, so that's a lot of the same combo.)
ReplyDeleteBut my last admission at St. Mikes saw me switching drug combos every two weeks...I felt my 'endless' list of options was quickly slimming down. Also, don't know if this is true, but I heard they like to 'save' some antibiotics for after tx?
Weird, Natalia I have had a different experience with the transplant referral. It was mentioned to me quite often, and I think I'm healthier than some other people who have not been referred for tx assessments.
Initially, it was mentioned to me when I transferred from Sick Kids, then again two years later, then I caved the third time around (another two years later). And I felt silly going, because when I'm healthy I look and feel so good... I know I will have to repeat all these tests again. But also, we are not able to see into the future, so I shouldn't be so cocky.
Reality is, when you have low lung function, we are one bad chest infection or one cold away from tx.
Michelle, I will add that the process is a long one. They sent my referral in March, my TGH consult wasn't until May and then the assessment wasn't until August. So there is an example of how time consuming it can be.
First, about the ABG. My hand is sometimes 'tingly' for a while. Sometimes a week. Sometimes not at all. I tend not to worry about it. I think it's from the freezing, I always ask for too much!!
ReplyDeleteAbout tx:
I have noticed that the one real consistant thing about CF is that we are all so different it is hard to tell what's working for whom. I know people that were doing amazingly well, and had one big episode, and ended up needing new lungs all of a sudden. And then people that hung on with low lung function for ever and ever and finally got it done. For me, it ended up being about IV use. I have spent most of 2008 on IV's and ALL of 2009 on IV's. My lung function was higher than most people's when they are referred, but my chronic infection became the problem. I also know someone that had 25% for years and years. They were asessed for tx and did not have to go in for tx until nearly 6 years later. But they were never on IV's. They never had infection. Which seems crazy to me, since I always thought one came with the other. But everyone's different.
I generally follow the rule of thumb (or I always have) that once I fell under 1L for a couple of months, and was not able to get myself up from that number after Iv's, I was going to go in to TGH. I felt the same way about oxygen. The day I got oxygen at rest, was the day that I told them that I wanted to be asessed. Truthfully I found the tests so easy, and SO over rated, that I think doing them twice would be worth not 'missing the boat'. Meaning that if the worst thing that would happen is you having them all done again since you were too healthy, well, that would not be the worst thing ever would it now?
Laby, you are right, the process is a long one.
Michelle, one last thing. You said something in your post about the fact that most people don't want to be on the tx list, or that they rather not be there. I have mixed emotions about it actually. I mean when we're talking about being sick in general, obviously I hate having CF and the full bit. But I do have to say, each day I am more and more excited about what it will feel like to go through this crazy operation and what it will feel like on the other side of things. I guess it's because I have been limited for so many years now, and I know the reality is that CF will kill me. The fact that we have this chance, I think it's incredible. When you think of what could be, this being the end of our lives (what would have been not that many years ago) we have to be so thankful! And I am so thankful. I wish this was a little easier right now, but I can handle it. I can tell you that I am more and more excited every day about how big of a deal this tx is for me and my family. So even though I would love to be healthy, who wouldn't!, I would not want to re-live 2008 again, just to avoid tx. 2009 was even worse for health. What I am trying to say, is be smarter than those people that try to avoid tx at all cost, and end up paying the ultimate price. I know too many people like that. Give yourself the best odds you can. Always ask youself about your quality of life right now. When does CF run things totally? That's a good tx indicator.
sorry so long girls. I should have a blog of my own. Oh wait a minute, I do. =)
hi heart of matta, i think that is awesome you were able to gain back your lung function through IV's. it seems every time i am on them, i never gain anything back anymore.
ReplyDeletei think people like us with such low lung function should start getting assessed for transplant, not that we are going to go on the list or anything, but i tell ya, if i were to be sick and go through all those tests, i wouldn't have made it. it was emotionally and physically sooo draining that week of testing. i never want to do it again. by the fourth day i was a zombie. it sucked.
we had to bring it up to the doctors about assessment, because i knew a few other people who had higher lung function then me, who were already on the list, so i did not understand why they were not even assessing me. i'm glad i got it over with and now can wrap my head around the whole process....becasue it is a huge and scary deal.
i agree with natalia though...i can't beleive we are given a 'second chance'...to think that Cf doesn't have to end us...to think that we can go and breath normally after transplant is hugely exciting. modern medicine is amazing.
i hope you enjoyed your thanksgiving at home. now that you've gained a a bit of lung function back, get exercising like crazy to get over 1 liter!
oh also, i got my first blood gas in june when i first started to need oxygen with exercising...i nearly fainted because i worked myself up into such a frenzy since i had heard such horror stories, and it wasn't even that bad, but i definitly had tingles for a week afterwards, it was weird!
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