I cannot believe that it is December 31, 2014. Where has the year gone? When I came down with this mysterious lung disease in November 2013, I thought it was a cold and it would be a pain in the neck but I'd be fine in a week or so. HA!
Time moves at a different pace - or it seemingly does - when you get seriously ill. As my condition continued to decline and we couldn't figure out what was wrong with me, time seemed to stand still. I was miserable, finding it harder and harder to breathe, we could get no answers and so time seemed to drag on.
After our trip to the Mayo Clinic and finally getting a diagnosis, time started to feel like it was moving so fast and I was going to run out of it. My disease was incurable. They had no idea how I got it, but the only way to survive was to have a Lung Transplant! Shock is an understatement. Deer in the headlights is how I would describe my reaction to this news.
Being told you need a Lung Transplant and actually getting one are two completely different things. Just because you need one, doesn't mean you're going to get one. One hospital turned me down, saying I was too complicated and they wouldn't take me on! WHAT?? Isn't that what you do? Give people transplants that need them? Well, doing a little research one finds out that certain hospitals only take on cases they know will have good outcomes so their statistics stay up high, which can impact their federal funding.
I was very lucky that my doctor fought for me and he got the second hospital to at least meet with me. They agreed to evaluate me and next thing I knew they had accepted me into their program as a transplant candidate. I was listed with UNOS on June 10, 2014, a date I will never forget. Now the waiting begins for an organ to become available. Time is ticking away and it feels like it's moving at lightning speed because I'm running out of time as I get sicker and sicker. And yet, waiting is slow agony as well. You never know if an organ is going to become available for you. Will I get my lung in time? I've been told I'm running out of time.
Finally, the call came and I got my Lung Transplant! It's my Re-Birthday - November 3, 2014! I have a new lease on life. Having a transplant isn't an easy thing and it's not the perfect answer but it is a life saving procedure if all goes well. There have been bumps in the post transplant road, but we are told to expect that. The Transplant Team knows how to handle them. So I must constantly monitor myself for any signs that my body is rejecting my lung.
The thing about transplants is that your body will NEVER, and I mean NEVER, accept the new organ as your own. It is constantly going to try to reject it and so fighting rejection is something we must do for the rest of our lives. I take about 60 pills every single day, a nebulizer treatment, I must check my vital signs every day and record them, I must do my Spirometry and right now, work on my physical therapy to regain the strength I lost while sick.
I look at time differently now. It's precious. I don't take a single minute for granted. I said before I got my transplant that all I wanted was more time. I'd take what I could get, but I hadn't had enough time yet. I have a wonderful family and I want more time with them.
For now, I've been given that extra time and I am so grateful. As everyone celebrates the New Year, I will be celebrating too, but in a different way. My New Year is also my New Life! The fact that I am still here, writing this Blog, enjoying my family and able to breathe on my own is truly a miracle!
I certainly will be celebrating the New Year, but not like most of you. I will be taking care of myself and my lung and probably be in bed when the clock strikes Midnight.
So from someone who is truly happy to be celebrating the coming of the new year, I wish everyone a very HAPPY NEW YEAR!
Time moves at a different pace - or it seemingly does - when you get seriously ill. As my condition continued to decline and we couldn't figure out what was wrong with me, time seemed to stand still. I was miserable, finding it harder and harder to breathe, we could get no answers and so time seemed to drag on.
After our trip to the Mayo Clinic and finally getting a diagnosis, time started to feel like it was moving so fast and I was going to run out of it. My disease was incurable. They had no idea how I got it, but the only way to survive was to have a Lung Transplant! Shock is an understatement. Deer in the headlights is how I would describe my reaction to this news.
Being told you need a Lung Transplant and actually getting one are two completely different things. Just because you need one, doesn't mean you're going to get one. One hospital turned me down, saying I was too complicated and they wouldn't take me on! WHAT?? Isn't that what you do? Give people transplants that need them? Well, doing a little research one finds out that certain hospitals only take on cases they know will have good outcomes so their statistics stay up high, which can impact their federal funding.
I was very lucky that my doctor fought for me and he got the second hospital to at least meet with me. They agreed to evaluate me and next thing I knew they had accepted me into their program as a transplant candidate. I was listed with UNOS on June 10, 2014, a date I will never forget. Now the waiting begins for an organ to become available. Time is ticking away and it feels like it's moving at lightning speed because I'm running out of time as I get sicker and sicker. And yet, waiting is slow agony as well. You never know if an organ is going to become available for you. Will I get my lung in time? I've been told I'm running out of time.
Finally, the call came and I got my Lung Transplant! It's my Re-Birthday - November 3, 2014! I have a new lease on life. Having a transplant isn't an easy thing and it's not the perfect answer but it is a life saving procedure if all goes well. There have been bumps in the post transplant road, but we are told to expect that. The Transplant Team knows how to handle them. So I must constantly monitor myself for any signs that my body is rejecting my lung.
The thing about transplants is that your body will NEVER, and I mean NEVER, accept the new organ as your own. It is constantly going to try to reject it and so fighting rejection is something we must do for the rest of our lives. I take about 60 pills every single day, a nebulizer treatment, I must check my vital signs every day and record them, I must do my Spirometry and right now, work on my physical therapy to regain the strength I lost while sick.
I look at time differently now. It's precious. I don't take a single minute for granted. I said before I got my transplant that all I wanted was more time. I'd take what I could get, but I hadn't had enough time yet. I have a wonderful family and I want more time with them.
For now, I've been given that extra time and I am so grateful. As everyone celebrates the New Year, I will be celebrating too, but in a different way. My New Year is also my New Life! The fact that I am still here, writing this Blog, enjoying my family and able to breathe on my own is truly a miracle!
I certainly will be celebrating the New Year, but not like most of you. I will be taking care of myself and my lung and probably be in bed when the clock strikes Midnight.
So from someone who is truly happy to be celebrating the coming of the new year, I wish everyone a very HAPPY NEW YEAR!
Auld Lang Syne - Mairi Campbell
I'm so glad your Christmas wish came true!!
ReplyDeleteThank you for sharing your story and helping to spread I.C awareness. I have had if for seven years.
I just started a new I.c patients resource called Feed My Bladder. It's the first ever store that carries only i.c safe food and drinks. It would mean the world to me if you would give it a look and share the link with those in need.
http://astore.amazon.com/feedmybladder-20
Thanks in advance. Stay strong!