Sunday, January 25, 2015


Since starting this Blog about my journey with IC, as most of you know if you follow me, this Blog has morphed into more about my mysterious lung disease that required me to have a lung transplant if I was to stay alive. So my IC took a backseat. This was much more serious, life threatening, scary as you know what and extremely debilitating. So I told myself that my IC would just have to "be". I'd have to just live with it as my lungs continued to deteriorate and my need for oxygen became more and more necessary and the amount ever increasing.

With my lung disease, my inability to breathe, even with oxygen, well enough to remain mobile became near impossible. As a result, what happens to sick people who can't get out of their chair or bed and continue walking or just doing their daily routines? You become de-conditioned and then you really can't do anything. It's a vicious cycle. The harder it is to breathe, the less you can do and the less you can do, the worse your de-conditioning gets and on the cycle goes.

My IC requires that I self-catheterize at least 7 times a day due to retention. It was never a problem, but continuing to do it when standing is near impossible when you can hardly breathe, and made it very difficult. I had to come up with alternative methods to getting this done. No small task.

Going anywhere was always a challenge with my IC as it was (as any IC patient knows); now with the need for oxygen 24/7, dragging tanks (even portable ones) was no small task. I needed a wheelchair to get anywhere we went, as getting from the front entrance of almost anywhere one goes, to where you want to be, was impossible as my condition worsened. When the Transplant Team insisted I go to Pulmonary Rehab in preparation for my transplant, I thought - how on earth will I ever manage that? But with help, I did it. However, my bladder couldn't get through an hour of rehab class, but I couldn't walk to the bathroom, so I'd have to get help, get the wheelchair and then hope I could self-catheterize once I got there. It took time away from class, was very tiring and I would have to increase my oxygen after I was finished. Then go back and try to finish my class.

The two diseases do not get along very well at all. I found I had to stop giving myself my instillations at home as it was just too much effort to get them mixed and then give it to myself being so de-conditioned; even with the oxygen, I'd end up huffing and puffing.

Being able to go see my IC doctor was too much effort. We did it once and that was the end of that. It was just too hard and took too much out of me. The same can be said for trying to go visit my Psychologist or any of my doctors. The amount of oxygen it took to get me to where their offices are, what I would need to be able to sit in the waiting room, get through an appointment, then get back home again took so much oxygen it was a major effort! (We also had to take at least one spare tank-we never went anywhere without at least one back-up tank in case of emergency, which proved necessary on at least one occasion-this was just so much work and took 3 people).

Since my transplant, as I recover, my IC is still a problem but for different reasons. As many know I am working very hard on my at-home physical therapy twice a week, plus doing the same exercises at least 3 days more by myself so that I can regain my conditioning.  But the exercises I must do cause my bladder pain to get worse. But I don't have a choice if I am ever to regain the strength I need to be able to just walk. Besides, the rehab is a mandatory requirement of being accepted as a Transplant Candidate. We are told "we are not giving you a new lung so you can become  a couch potato." It makes sense. As we all know, transplant organs, lungs especially, are very hard to come by. The Transplant Team isn't going to give a rare gift to someone who is just going to sit around and do nothing. They don't expect me to run a marathon, but I am expected to work at my rehab enough so that I no longer need assistance with daily living; so that I can do some level of exercise to keep my lungs healthy and my body in shape. So I am dedicated to following my orders and getting back in shape as much as possible. In fact, I am extremely determined. My bladder yells at me every time I do my exercises, but I just tell it to be quiet. It's even possible that strengthening my core will be good for my bladder and my IC. So I continue to work.

I know there are many IC patients with more than just IC who have to deal with multiple diseases that conflict with each other. I am not alone in this. None of this has been remotely easy. A lung transplant is the most difficult transplant (more difficult than hearts even) and also one of the hardest to recover from. Recovering from any kind of transplant is hard and there are always bumps in the road. We are told to expect them and they didn't lie; I'm struggling with several issues since my transplant.

All the medications don't help my IC either. One of meds is affecting my kidney function which affects urine output which makes my bladder hurt as the urine becomes more concentrated and causes the increase in pain. 

My IC and my lung disease have literally collided. It's challenging enough getting through a lung transplant and managing that pain. Then when part of your recovery requires exercises that cause your IC to flare up - well, to me that's a major collision. 

I don't have a choice. I could curl up in a ball and waste the Gift of Life I've been given  because it hurts too much to work on getting my strength back. Or I can choose to fight and be a compliant patient and do all I can to make this new lung stay healthy and keep the rest of me healthy too. Someone gave the greatest gift one can get and I do not take it for granted. Yes, it's making living with my IC even harder (I was already on Disability from my IC), but after what I've been through to get to where I am, it's worth the effort. 

So, while having two very serious medical conditions that are at odds with each other is no fun, sometimes I just have to tell myself to suck it up. I've had to tell myself that countless times as I go through the transplant process. I've had my moments. But my IC isn't going to take me down and I am going to do all I can to keep my new lung going strong.

Yes, some days feel like I've been hit by a truck. But then I remind myself I am still here, breathing and not needing oxygen. I know what it's like to be told I was dying unless I had a lung transplant. I am lucky and blessed. That "truck" will likely hit me again and I'll take it and remind myself why it's worth the fight!I get to live!

Live Like You Were Dying - Tim McGraw

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!