Monday, January 12, 2015


Since I was given the Gift of Life and received my Lung Transplant on Nov. 3, 2014, my life has changed in many ways, many of them very dramatic. What I have learned, and yes, I was warned by the Transplant Team, is that Transplant isn't for sissies! We are told up front that there WILL be bumps in the road but that they can be managed. We must be ever vigilant to watch for signs, follow our medication regimes and all our instructions to the "T". When they say to take a certain medication 12 hours apart, they mean 12 hours! NOT 11 1/2 hours; NOT 13 hours - 12 hours! If they say take your medication with food, do it!

Well, let me tell you, since coming home from the hospital after my transplant, I've had my share of bumps (twice re-admitted to the hospital due to side effects from medications, just to mention a few!)

We are told that our bodies will NEVER - that's NEVER - accept our new organs. Our bodies are going to spend the rest of our lives trying to reject our new organ because it thinks it's an invading foreign object there to do harm, so without all the medications we are given and immunosuppressants, our organs would be rejected.

But along with all the medications (about $7,000/month) - I take about 60 pills per day - the thing is; they come with side effects. We are constantly having to have blood tests to find out how our liver function is, how our kidney function is, what our white blood count is; what is the level of this drug or that drug. It's a delicate balance and many changes are made to our medication routine. This means going to my pill box (which takes an hour to fill!) and either adding in or taking out medications that have either been added or removed. I have a 7 page list of my medications that I am constantly updating so I can properly keep track of what I am to take and when. This is no small task.

Recently I came down with a bacterial infection that is making me cough and is producing a very unpleasant green colored mystery goo that I had to take in to the lab to have cultured. Turns out it's a very unusual bacteria and there is only one antibiotic that can treat it and I'm allergic to it. So the call comes that I must come to Loyola immediately, get admitted and begin what they call de-sensitizing me to this drug so that they can give it to me to treat this infection. They prescribe a super high dose that I must take twice a day for 14 days. Shortly after starting it, all sort of unpleasant things start happening that I will spare my readers, but suffice to say we thought it was possibly a virus, but I didn't get a temperature. That's possible. Also, it could be side effects from the medication; there's no way to know for sure. So I suffer through these symptoms for nearly a week.  Apparently, transplant patients sometimes have their "thermometer break"; in other words, we can't get a fever, but we still have all the symptoms (body aches, chills, sweats etc.) So, it's a mystery trying to figure out what I've got. Oh, and after 14 days of taking this super-max dose of antibiotic, the infection isn't gone! So now I have to try to cough up another sample to take to the lab. I wish I could produce one on demand!

This morning I had to go for my weekly blood work which has to be done at 8AM. So I must get up at the crack of dawn because they require one blood test to be done at a specific time. So, we do that and I wait for the call from my Coordinator. This is how it seems to go lately. My liver function is not good; my kidney function is way out of whack; my white count is seriously too low and I need to report to the hospital tomorrow for an infusion that will take two hours; then I need to see a nurse for another test where they insert a tube down your nose and put saline in but you can't swallow (and try not to choke). So much fun. Then back to the lab at 8AM on Wednesday for more blood work to see if any of the things we are doing are working. 

Oh yeah, and let's not forget the wound on my surgical incision that won't heal that is requiring constant wound care at home and regular visits to the wound care nurse. 

And on it goes. Yet, I am one of the lucky ones. It is hard to go through all of this. It has seemed no sooner do we get one thing taken care of, another pops up. I've had my moments, but I'm lucky to be alive. And compared to some transplant patients, I've had it easy. There are some that two months post transplant (as I am) are still in the hospital due to complications. I was released 7 days after my transplant and my bumps have mostly been medication related. My Transplant Team is learning what I warned them about before my transplant: medication and I do not get along! I think they believe me now!

It's been hard, but I still feel lucky. But with that said, I'll say it again: Transplant Isn't for Sissies! And so I'm going to share some pictures that aren't for sissies either. This is my life as a transplant patient.

At Home Spirometry
(Or as I Call It; My Personal Torture Device)

My Pill Box

Surgical Incision
(Over 2 feet long)

Surgical wound that won't heal!