Saturday, May 30, 2015


Having a Lung Transplant is one of the most complicated and serious surgeries a person can have. They are more complicated and complex than a heart transplant. The outcomes are not as good as other organ transplants. They were the last organ to be taken on for transplant because of the complexity of the surgery. All of this is to explain that along with such a difficult surgery, the recovery is also very challenging, slow and really requires a lot of hard work.  Not that this is a surprise to me; the Transplant Team does a great job of preparing you and telling you what to expect. They did not exaggerate!!

Step on up to the roller coaster. There are so many ups and downs that I'd swear I've boarded the biggest roller coaster out there. The good news is my lung has been doing fantastic so far. Every test and Bronchoscopy and culture we do, to check it, comes out great. I am told my lung function is fantastic and that's hugely important! Wheeee! The roller coaster just went down a steep drop with the good news.

But then there are the side effects from all the medications I must take for the rest of my life. All transplant patients must take immunosuppressants to prevent organ rejection. As the doctors explained, our bodies will NEVER, that's NEVER, accept the transplanted organ. Without the anti-rejection medications, our bodies would attack the organ because it thinks it's an invasive thing there to do us harm not save our lives. So immunosuppressants are going to be part of my life forever. I knew that too; they explained all this. But as that roller coaster heads up the steep climb to the top, problems with side effects from those immunosuppressants start to pop up. For me, it has been liver and kidney issues. We managed to get my liver function stabilized, but my kidneys are not cooperating.

I am told the lab reports show that I am dehydrated. I am shocked because I've been drinking about 64 oz. of water a day! They tell me to drink another bottle! Seriously?! I don't think there are enough hours in the day to drink that much water! Plus with my Interstitial Cystitis disease, my bladder is not enjoying this one little bit.

It's hard not to worry about kidney failure as it's a common problem for transplant patients, many of whom end up on dialysis and then needing a kidney transplant. I'd seriously like to avoid that. I am told by my team that I am nowhere near that yet and they will tell me when I need to worry if it even gets to that. I have blood tests coming up in about a week and we'll see how my kidneys are doing since the last test. I'm hoping they are at least stable and not any worse. They will check them again when I see the Transplant Team in July. So they are monitoring me. But it's hard not to be anxious, but I am working on it. I trust my team and they know what they are doing. So I close my eyes and hold on tight as the roller coaster makes its way up and down and around.

Then there's my physical rehab. I am working so hard on my physical rehabilitation. I was in a wheelchair and on oxygen for over a year, so I was completely deconditioned. By the time I finally got my transplant, I could not stand without assistance or even walk without a walker. Forget about stairs completely. So to get back in shape was going to take a huge commitment on my part and a lot of hard work. It also wasn't going to happen overnight.

I am working so hard at it. It began with in-home physical therapy until I was strong enough to begin going to out patient rehab. Out patient rehab was twice a week for 12 weeks. When you begin rehab you are required to do a 6 Minute Walk Test (I've also done these for the Transplant Team; before my transplant I could barely walk 100 ft.). They test your oxygen saturation during the test and your blood pressure. When I started back to Rehab after my transplant I was able to walk 684 ft. which at the time was a big deal! When I completed my 12 weeks of Rehab, I had to repeat the 6 Minute Walk and on my final 6 minute walk I was able to walk 1,337 ft.!!!! I was so excited by the improvement! So another big downhill on the roller coaster as I can see the progress that I am making. 

Now I am on my own for my rehab and must be dedicated to keeping up with my exercise. If you follow me on Facebook, you will often see posts about my workouts and how I am doing. It is HARD work, let me tell you. There are many days I wish I could skip it and just sit in my chair and be lazy. But I cannot. I promised the Transplant Team that if I got a lung, I would do everything I was supposed to do to take care of this great Gift of Life! So that's what keeps me going. Knowing I must do all I can to take care of this precious gift. 

I am making good progress when I walk or use the treadmill or bike at our Fitness Center. However, the stairs in our house up to my room are still like climbing Mt. Everest to ME. When I reach the top I am totally out of breath and need to sit down. Stairs, really no matter where, still do me in. This is the roller coaster making its way up the steepest climb on the ride. I feel I have made no progress at all when it comes to climbing stairs! It's frustrating. I have an app on my iPhone that tracks things like climbing stairs, how far I walk etc. So I carry it with me all over the house so I know how many times I've climbed the stairs in one day. Often it's as many as 10 times up and down. And yet I still struggle every single time I must climb them. Will it EVER get easier?!?! 

My wound (the part of the incision from my surgery that did not close) is still not completely closed. My Mother still has to scrub it every day and put on a clean bandage. That hurts like the devil. It hurts, really, all the time. The whole incision still hurts, although part of it is just numb. When oh when will this heal and the pain at least begin to dissipate?!?!

These are the ups and downs of the roller coaster ride that is being a Transplant patient. Nothing comes easy and I must remind myself every day that I am here; I am alive thanks to the ultimate Gift of Life given to me by an anonymous stranger. So I keep going, and keep fighting. One must learn to take the not so good with the good. 

So, I got on the roller coaster and I'm hanging on for dear life. I always hated roller coasters; never could ride them as they make me sick. So this feels a lot like that. I don't want to be on it; the ups and downs are not fun. But they ARE part of the deal when you become a Transplant Patient.

Oh, and I can never get off the roller coaster. It's like Groundhog Day; it just keeps repeating itself over and over and I must keep up my efforts to stay on it. This is hard, but it's worth the effort. And that's what I keep reminding myself as I climb those stairs!

Monday, May 25, 2015


My Transplant Team keeps telling me how great I am doing. And, most important, my lung function is excellent and I have no rejection issues at this point. All good stuff.

However, the immunosuppressants I must take for the rest of my life are giving my kidney function fits. The most recent kidney function test was the second highest number I have recorded since January. But my Coordinator tells me there is nothing to be done about it and I am nowhere near the stage where we have to worry or send me to see the nephrologist. It's hard not to worry, but they keep reassuring me and so I must trust my team. They saved my life and they know what they are doing. I need to work on trusting them and not worrying when they tell me it's not time to do so yet.

They want me drinking LOTS of water. All the lab results show that I am dehydrated even though I am drinking over 90 oz. of water every day! They said, drink more. Drink more! There aren't enough hours in the day to drink over 100 oz. of water in the day! But I'm pushing fluids as best I can.

And this is where my IC hates my transplant & kidneys. My poor IC bladder does not like me drinking THIS much water. Of course, I always made sure since getting IC to stay well hydrated, but not to flood myself. I feel like this is flooding and my bladder is screaming at me. And with my retention, that means even more catheterizing. The labs showing that I am dehydrated are because my kidneys are not functioning properly so my body is asking for more water. 

This is hard. It's hard to drink as much water as they want me to.  It's hard not to worry about my kidney function, especially since it's one of the most common problems transplant patients must deal with, often needing dialysis and ultimately a kidney transplant. They tell me I'm not there yet. I'm anxious to see the next set of test results. I go in two weeks for another Complete Metabolic Panel which will show what my kidney function is. I am hoping it stays level and doesn't go up. That would be a good thing.

Then my next appointment with my Transplant Team is July 6 and they will check it again then. So they are monitoring me.  My Coordinator keeps telling me, no news is good news. If she has something serious or important that I need to know, she WILL call me. Otherwise, I can assume all is well. This is hard for me; I want info. It helps me and I cope better knowing no matter if it's good or bad. So I must get used to this way that they work. It's hard for me.

But this is a real challenge and they warn you before your transplant that it will be like this. They warn you of potential medical issues from all your medications. So I expected this. But no one wants to hear the words renal failure. So here's to my test results holding steady the next two times we test them.

In the meantime, my IC is making it even more challenging than it would already be. It's interrupting my sleep as I am getting up constantly to pee (even more than before, if that's possible). I was already on Disability for my IC, so it was pretty bad. All this water isn't helping. But I have no choice and I will do my best to follow my instructions and be a compliant patient. I've been given the greatest gift, so I will do what I am told and everything I can to insure a successful outcome.

I already had IC when I came down with this mysterious lung disease. Seriously?! I didn't have enough medical woes (IC, Epilepsy, Cardiac Issues to name a few) that I needed another! And of course it had to be life threatening; if I didn't get a transplant, I would die. Gee, I wasn't having enough fun already, I needed this too!

Well, I never imagined I could get through a major operation as big as a Lung Transplant, the post surgery Rehab and all that goes with being a transplant patient. But I am doing it. So my IC will just have to take a back seat while I try to keep my kidneys functioning. I'll cope; my psychologist is a big help.

Sometimes I feel my body has turned on me and I just want to give up. But once I asked and was granted acceptance to being a transplant recipient, giving up was not an option. So I fight on; every day. I take my meds on schedule, I work on my exercise and my diet. And, yes, I drink all that water! I think I'm going to float away. 

I envision my bladder cursing at my lung and my kidneys. My poor IC bladder is not happy. Well, that's life. I'll have to cope with it.

My Water Bottle!

Saturday, May 16, 2015


I haven't Blogged in a few weeks for several reasons. We've been moving (not that I'm any help) and Comcast screwed up the change-over to the new house and we didn't have ANY phone, Internet or TV for nearly two weeks! It was such a cluster**** you wouldn't believe it. But leave it to my Mom to never give up and she finally got it straightened out and got us a bunch of free stuff too.

I also had my 6 month Post Transplant Bronchoscopy. It went well and got all good news from all the labs taken from the procedure! So that's the good. However, I had a delayed reaction to the Bronchoscopy, which was on Monday. When I woke up Wednesday morning I had a fever of 101.8! Time to call my Transplant Nurse Coordinator. It's not unusual for this to happen, although the 2 day delay is a bit out of the ordinary. I was given permission to take some Tylenol (I'm not allowed to take ANYTHING without permission) which I did. And while the fever went down over the next 24 hours, it did not break until Friday. I was WIPED OUT for the whole week! It really knocked me on my butt. So I've been slow to recover from that.

I had some blood work taken this past Friday and am anxious to talk to my Coordinator on Monday, as the kidney function numbers are not good. Whenever they've been this high before, I got a phone call about it and what my doctor wanted to do. My potassium level is also extremely high, which is likely the result of the renal function problems.

I have been so excited to have marked the six month anniversary of my Transplant. I've been told by my Transplant Team how great I am doing (although that was before these recent blood tests showing the poor kidney function). I feel pretty good and keep adding things to my daily routine. I'm making all my meals myself; doing laundry all by myself; keeping up with my exercise since graduating from Rehab. 

I feel confident that the Transplant team can take care of my kidney issues; they have before. It's usually a matter of adjusting some medication. It's a challenge for many transplant patients, so I'm not unique in this regard. I just want them to get it controlled as I would like to avoid the total kidney failure many transplant patients go through. I don't think I'm ever scheduling lab tests on a Friday again; waiting to talk to my Coordinator about this the whole weekend is nerve wracking. But I'm keeping up with my routine and trying to stay positive that all will be well.

Six months is a big deal in Lung Transplant vs. other organs. So having made it to this milestone as well as I have, is very positive. 

A year ago, I wasn't even listed on the UNOS Organ Transplant Waiting List yet. Now I am 6 months post transplant! Truly a blessing for which I am ever grateful. I wake up every single day and think of my donor, grateful for their generous gift of life that saved mine. 

I am confident the Transplant Team will get this kidney issue under control and I will continue to do well. I refuse to think otherwise. I am looking forward to marking other milestones and continuing to enjoy this wonderful life.

Celebrating My 6 Month Anniversary
I Walked a Personal Best on this Day of 1.55 Miles!

My "Bravelet" Bracelet for Raising Awareness
for Organ Donation & Transplantation
A Gift from a Dear Friend

"Be Brave"

"Win" - Brian McKnight