I haven't Blogged in a long time. I've been struggling with a bit of writer's block, and never wanting a Blog to be negative, I didn't feel right writing about my struggles post transplant.
But, I finally decided I needed to talk about the good, the "bad" and everything in between if I was to really be honest about this Journey I call Transplant.
I am 2 1/2 years post transplant. I received my lung on Nov. 3, 2014 and am rapidly approaching my 3 year anniversary. That is no small thing and I wake up grateful every single day for the Gift of Life that was given to me by a very generous donor. I get to breathe. To be able to say that, and DO that, to me is nothing short of a miracle. If you've read previous Blogs where I wrote about getting sick, finding out I would need a transplant to survive, getting accepted by the greatest Lung Transplant program in Illinois, then you know a little about what it has been like. My gratitude for the Loyola University Medical Center Lung Transplant Team is beyond words. They literally saved my life and I will be thankful to them for as long as I live. They continue to care for me post transplant and make sure I am doing well and taking care of me when problems arise. They are simply The Best!
I have been extremely lucky in that I have not had a rejection episode so far! While it's not unheard of, of course, it's also not necessarily "normal". I count myself lucky that my lung seems to be behaving and doing the work it should! Of course, this is likely due to the amazing Transplant Team who know how to manage my medication dosing to get the right results, but I still consider myself lucky to have not had to experience rejection so far. Fingers crossed it stays that way!
I am also so grateful for the generosity of my organ donor. Without people like my donor wanting to sign up as soon as they get their driver's license, I would not be here. We need more people to WANT to be organ donors. To leave a legacy of life and gratitude after you are gone is a beautiful thing and if you're reading this and are not a donor, I urge you to become one. It's so easy; here's the link:
THE "BAD":
All those drugs! They tell us prior to transplant what to expect. I'll never forget my very first meeting with the head of the Transplant Department. He told me then that while a lung transplant can be a life saving procedure, I needed to know that I would be trading one disease state for another because of all the side effects of the anti-rejection medications we must take for the rest of our lives. He did not exaggerate. I truly believe they want to see if an individual is ready to fight through all these issues or if they don't have that fight in them. I chose to fight if they would have me.
I struggle with multiple side effects from these medications; short term memory loss, drug induced myopathy in my legs requiring me to use a walker now to get around; chronic kidney disease where I am now being monitored by the Transplant Nephrologist though I am currently stable; extreme exhaustion; bruising all over my body, extreme mood swings; high cholesterol requiring more medication to control that; worsening of osteoporosis, again requiring more medication to control that.
I know I am not alone in this. This is not intended to be taken as me feeling sorry for myself. But as many transplant patients will tell you, these medications are not easy to deal with, yet we have no choice if we are to live, so we willingly comply and take our medications on schedule as instructed.
These drugs are not cheap either. Just one of my medications costs $750 every month. I am on disability and even with my insurance, that's my cost for this one drug. It adds up. And every time I turn around, I feel like I'm an ATM machine just pushing cash out for medical expenses.
There are good days and there are "bad" days where some of the side effects make life more challenging than I would like. But I agreed to a transplant, so that means I take the good with the "bad".
EVERYTHING IN BETWEEN:
These are most days where I go about my business, be a good and compliant patient and don't complain about aches, pains and not being able to remember what day it is. I just cope and am glad to be here with a wonderful lung that is doing what it's supposed to. Take my vitals, do my spirometry, take my meds. I go through my daily routine without really thinking about it now. It's just what I do. I've even gotten to the point that when I see a doctor and they read me my list of medications to make sure it's correct, I actually know every single one of them and if they are missing something or if they got them all right. But I can't remember what day it is - LOL!
This Blog post is meant to give those who read it, just an idea of what life as transplant patient is like, or at least what my life is like. I am lucky. The challenges I deal with from my medications are nothing compared to what some patients struggle with. When I'm not having a good day, I remind myself that it could be much worse and to be grateful for how well I am doing.
This has been a little insight into what I call my Journey through Transplant! I am lucky to be here to write about this and grateful for the donor who saved my life. It may not be perfect, but then whose life really is! I get to wake up every day, take nice deep breaths and live! Who could ask for more!
But, I finally decided I needed to talk about the good, the "bad" and everything in between if I was to really be honest about this Journey I call Transplant.
THE GOOD:
I am 2 1/2 years post transplant. I received my lung on Nov. 3, 2014 and am rapidly approaching my 3 year anniversary. That is no small thing and I wake up grateful every single day for the Gift of Life that was given to me by a very generous donor. I get to breathe. To be able to say that, and DO that, to me is nothing short of a miracle. If you've read previous Blogs where I wrote about getting sick, finding out I would need a transplant to survive, getting accepted by the greatest Lung Transplant program in Illinois, then you know a little about what it has been like. My gratitude for the Loyola University Medical Center Lung Transplant Team is beyond words. They literally saved my life and I will be thankful to them for as long as I live. They continue to care for me post transplant and make sure I am doing well and taking care of me when problems arise. They are simply The Best!
I have been extremely lucky in that I have not had a rejection episode so far! While it's not unheard of, of course, it's also not necessarily "normal". I count myself lucky that my lung seems to be behaving and doing the work it should! Of course, this is likely due to the amazing Transplant Team who know how to manage my medication dosing to get the right results, but I still consider myself lucky to have not had to experience rejection so far. Fingers crossed it stays that way!
I am also so grateful for the generosity of my organ donor. Without people like my donor wanting to sign up as soon as they get their driver's license, I would not be here. We need more people to WANT to be organ donors. To leave a legacy of life and gratitude after you are gone is a beautiful thing and if you're reading this and are not a donor, I urge you to become one. It's so easy; here's the link:
As of today, there are 117,710 people waiting for a life saving transplant. Please sign up to be a donor today!
My First Walk Post Transplant!
My New License Plate in Honor of my New Lung!
All those drugs! They tell us prior to transplant what to expect. I'll never forget my very first meeting with the head of the Transplant Department. He told me then that while a lung transplant can be a life saving procedure, I needed to know that I would be trading one disease state for another because of all the side effects of the anti-rejection medications we must take for the rest of our lives. He did not exaggerate. I truly believe they want to see if an individual is ready to fight through all these issues or if they don't have that fight in them. I chose to fight if they would have me.
I struggle with multiple side effects from these medications; short term memory loss, drug induced myopathy in my legs requiring me to use a walker now to get around; chronic kidney disease where I am now being monitored by the Transplant Nephrologist though I am currently stable; extreme exhaustion; bruising all over my body, extreme mood swings; high cholesterol requiring more medication to control that; worsening of osteoporosis, again requiring more medication to control that.
I know I am not alone in this. This is not intended to be taken as me feeling sorry for myself. But as many transplant patients will tell you, these medications are not easy to deal with, yet we have no choice if we are to live, so we willingly comply and take our medications on schedule as instructed.
These drugs are not cheap either. Just one of my medications costs $750 every month. I am on disability and even with my insurance, that's my cost for this one drug. It adds up. And every time I turn around, I feel like I'm an ATM machine just pushing cash out for medical expenses.
There are good days and there are "bad" days where some of the side effects make life more challenging than I would like. But I agreed to a transplant, so that means I take the good with the "bad".
All My Meds!
These are most days where I go about my business, be a good and compliant patient and don't complain about aches, pains and not being able to remember what day it is. I just cope and am glad to be here with a wonderful lung that is doing what it's supposed to. Take my vitals, do my spirometry, take my meds. I go through my daily routine without really thinking about it now. It's just what I do. I've even gotten to the point that when I see a doctor and they read me my list of medications to make sure it's correct, I actually know every single one of them and if they are missing something or if they got them all right. But I can't remember what day it is - LOL!
This Blog post is meant to give those who read it, just an idea of what life as transplant patient is like, or at least what my life is like. I am lucky. The challenges I deal with from my medications are nothing compared to what some patients struggle with. When I'm not having a good day, I remind myself that it could be much worse and to be grateful for how well I am doing.
This has been a little insight into what I call my Journey through Transplant! I am lucky to be here to write about this and grateful for the donor who saved my life. It may not be perfect, but then whose life really is! I get to wake up every day, take nice deep breaths and live! Who could ask for more!
Celebrating my 2 Year Transplant Anniversary Nov. 3, 2016
Hi Catherine,
ReplyDeleteI appreciate you telling us what it is really like after a lung transplant. How are you doing now, six months after this last blog? Hope you are doing well.
I am doing well. My lung especially is doing great! In October I had my "annual" check up (even though I get checked every 3 months) and all was good news. I still have challenges with the many side effects of all the medications I take; but try to deal with those as best I can. I have much for which to be grateful even with the challenges.
DeleteAppreciating the time and energy you put into your blog and detailed information you provide. It's awesome to come across a blog every once in a while that isn't the same old rehashed information. Fantastic read! I've saved your site and I'm including your RSS feeds to my Google account. zánět močového měchýře
ReplyDeleteThank you for your very kind comments. I've been struggling to Blog lately but hope to return very soon.
DeleteI recently found your blog and have now been reading along. I thought I would leave my first comment. I don't know what to express except that I've enjoyed reading. Nice blog. I can keep visiting this blog very often.svedeni vaginy
ReplyDeleteThank you very much for your nice feedback. I have been struggling lately with writers block, but there are still many blog posts to read if you're interested. I'm working on a new post now and hope to have it up soon.
Delete