Interstitial Cystitis: IC GAL'S JOURNEY (And More)
I am an Interstitial Cystitis patient and Patient Advocate. I was diagnosed with IC in 2002 and I am on Disability because of my IC. I decided to create this blog to share my journey through IC and hopefully help others as they go through their journey. This is a place of coming together, support and positivity even as we recognize the ongoing struggle we each face. Welcome and I hope everyone will find something here to help and inspire them!
When you find out you need an organ transplant, for me a lung transplant, I don't know about you, but I start to do some research. Transplantation isn't easy in so many ways. Just because you are told you NEED a transplant to survive does not mean a transplant center will accept you into their program and get you listed for the organ you need. Even if a center says they'll consider you, the testing a potential transplant candidate must go through is unlike anything you will likely ever experience. It took me a full week in the hospital of testing every single day for the hospital that finally accepted me to do all the testing they needed in order to make a decision about accepting me. Even after that, I still had out-patient tests and procedures I was instructed to get done and provide documentation that I had completed these tests (PAP Test, Mammogram, Dental Cleaning to name a few). The first hospital I consulted with where I live turned me down; refused to accept me into their program and get me listed with UNOS saying I was "too complicated". This was a very rude awakening for me. I couldn't imagine a transplant hospital denying a patient the OPPORTUNITY for the life saving procedure they need. Just because you get accepted into a center's program and listed with UNOS is no guarantee you will ever receive your transplant.
As it turns out, I believe I am lucky to have been turned down by the first hospital. I have learned from doctors and research that many transplant hospitals will not take on "complicated" cases because they have the potential to negatively impact their success rates. I have also learned that hospitals that do more transplants, more often - those doing the most every year - have more skilled, knowledgeable doctors and transplant teams, as well as excellent and top notch success rates.
I ended up being accepted by one of those hospitals, Loyola University Medical Center. It turns out that Loyola set the state record for the most lung transplants in Illinois in 2014.
If you read the above link to the press release, you will see that Loyola University Medical Center performed 51 lung transplants in 2014, the most ever by a single center in Illinois! I was lucky to be one of those patients to receive the gift of life last year! That's who I WANT doing my transplant and that's who I got. As far as I am concerned, they are the "A" TEAM! They saved my life and are working tirelessly to manage my post transplant needs, issues, complications and challenges.
Transplant surgeons at Johns Hopkins have evidence that hospitals
performing at least 20 lung transplant procedures a year, on average,
have the best overall patient survival rates and lowest number of deaths
from the complex surgery. Loyola did more than double that in 2014!
Having a lung transplant, while it can be a life saving procedure is not easy. As my doctor explained it to me, "you are trading one disease state for another." This is very true. The transplant seems a miracle to me every single day. Yet, the complex follow-up care and medications create a whole new set of medical issues the transplant patient must deal with and manage.
The side effects from all the medication can cause serious damage to other organs. For example, I am struggling with kidney function issues because of medications. My team is on top of it and it seems we are getting things under control. Last kidney function test was trending downward, which is good. We want to see it go down further and the next blood test should tell the tale. In addition, as all transplant recipients are, I am immunosuppressed and therefore, very susceptible to catching all sorts of infections: bacterial, viral, fungal - you name it. I have had a lung infection and I am currently experiencing my first episode of rejection.
Rejection: the scary word no transplant recipient wants to hear. However, my team assures me my case is very mild (the lowest score you can get as they score rejection) but it required an increase in my Prednisone dose for 30 days and then we will repeat the bronchoscopy to see if we halted the rejection. SO I anxiously wait for that to happen and hope it's good news.
But the point is I KNOW I have the best team possible taking care of me and they are on top of everything. I talk to my Post Transplant Coordinator often. She is so kind, caring, knowledgeable, helpful - no question from me is too stupid. She doesn't mess around and is always contacting me with my test results, instructions on tests or medication changes.
Loyola Hospital is certainly doing the most transplants in Illinois and I believe it's why I even made it through the surgery. I am a complicated case and I couldn't see how I could even get through such a major surgery. But they listened to me, my concerns; worked with me and got me through it and discharged in near record time: only 7 days post transplant.
And regardless of the complications I am having, they feel confident about how I am doing. I am back at Rehab working on regaining my strength. I've been told by the doctor to start getting out and about (except it's freezing *** cold outside). I've gone to the store with my Mom, gone to the hair dresser for the first time in over a year and got my hair done. Something I wasn't sure I'd ever do again.
My original Pulmonologist fought for me. He wouldn't give up until the Transplant Team at Loyola at least met with me. I owe him my life too.
I feel lucky that I was accepted and every single day is a gift. I'm working on taking this one day at a time and not looking down the road long term. But I am blessed and grateful for every single one of those days.
Loyola's 1-month, 1-year and 3-year patient survival rates are 96 percent, 86 percent and 68 percent, respectively; well above the national and local statistics that show that 55 percent of lung transplantation patients survive after five years. There are no guarantees; but I want the hospital with the better outcomes that wasn't intimidated by me being "complicated".
So, what I've learned along this journey with transplantation is:
Since coming down with this mysterious lung disease began, I have been unable to go see my IC Doctor. It was just too much; dragging along all that oxygen and it took 3 people to get me there. I couldn't sit in the waiting room not knowing if I would run out of oxygen even though we'd brought all I had. So I just had to stop going for treatment. Doing my at home instillations became too difficult. I literally didn't have the strength to mix them up then administer them to myself. I managed to continue to self-catheterize throughout this lung journey, but it wasn't easy. Ever since this whole thing began, my IC has not been happy with me. But I just had to learn to live with it. My lungs were taking control of everything and trying to care for my IC became impossible. I learned to just suck it up and deal with it as best I could. Well, it's 3 months post transplant and my Transplant Doctor has given me the OK to start getting out and about (mostly to Rehab). So the first thing I did was make an appointment to go see my IC Doctor! What a welcome return to care that was! The entire office staff was giving me hugs and told me how great it was to see me. When the doctor came into the exam room, he gave me a huge hug! It was enough to bring tears to my eyes. He spent 45 minutes with me and wanted the entire transplant story, every detail, along with how it has impacted my IC. Has any or all of my transplant medication helped or hurt my IC? He even wanted to see my incision and check out my not yet healed wound. Then he checked my InterStim, did an exam and gave me my first instillation in over a year! AHHHHH!!! I know they don't work for everyone but they are my life saver and to not have one in over a year has been rough. It was like a gift from heaven when that instillation went in and my bladder has felt better these past few days. He is going to write to my Transplant Doctor and give her the full update on my IC situation, much detail regarding my status so they understand better what is going on with me, how the instillations work for me etc. I am so blessed with so many wonderful doctors. A Return to my IC Doctor was truly a blessing and I am so grateful to have him caring for me. I am encouraged that I am thinking I may be ready to start giving myself my instillations again at home. This week is one year since I came down with this mysterious lung disease and my Blog morphed into the journey through Bronchiolitis Obliterans, being told to get my affairs in order, but finally being blessed to received the Gift of Life and get my new lung. That journey is not over. There are bumps in the road we are treating right now. It's still scary and I am still not completely healed even though I am going to Rehab and told to start going out more.
And so I am. I went shopping for new walking shoes over the weekend and I have an appointment this week to get my hair cut. I am making progress for sure. If we can just get the kidneys back on track and stop this rejection episode, I will feel much better.
But I have made much progress and I am grateful that I could finally make a Return to My IC Doctor!
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!
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.
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!