Sunday, January 25, 2015

WHEN IC & OTHER ILLNESSES COLLIDE!

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

TRANSPLANTS AREN'T FOR SISSIES!

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!





Wednesday, December 31, 2014

IT'S A VERY HAPPY NEW YEAR!

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!



Auld Lang Syne - Mairi Campbell



Thursday, December 25, 2014

IT'S A MERRY CHRISTMAS!

I'm 7 weeks post transplant and things are going about as expected for a transplant patient, given we know there will be bumps in the road to recovery, but we just don't know what those bumps will be.

I've had my share. Side effects from medications, wound issues from the incision, pain, and we're waiting to get culture results to see if I have a lung infection. I'm on an antibiotic because the preliminary tests show something so they don't mess around when it comes to transplant and the Cipro was started immediately. 

This Christmas is so special. A year ago, I was sick. I had come down with this strange lung disease but we didn't know what it was or how to treat it. Now a year later, I've been blessed to have gotten my lung transplant and I am on the road to recovery. 

Like I said, there are bumps in the road to recovery. I had to be re-admitted to the hospital due to some medication side effects back in mid November. Now we're fighting what looks like it might be a bacterial infection; we'll see. 

But, this Christmas is not for reflecting on what I almost lost this past year but instead what I gained - my life. I am working on my rehab so I can get my fitness level back. I can breathe without oxygen. I am so grateful for the Loyola Transplant Team who got my my Lung and continue to take care of me even after discharge. 

Christmas is a time for being thankful and reflecting on the year gone by. I'm glad it's gone by. I do not wish to repeat it. I am so thankful for my new lung and the fact that I am on my way to recovery. My family has helped me more than I can say. There is just so much for which to be thankful that I run out of words.

I am blessed and thankful. My Christmas gift to my family is a huge hug and my love for standing by me. I could not have done any of this without each and every one of you!




This Picture Is Truly a Miracle!




Saturday, December 20, 2014

I ALREADY GOT WHAT I WANTED FOR CHRISTMAS!

The Christmas Season is upon us. I can't believe December is half over and we are rapidly approaching 2015! I don't know what happened to the past year. My life changed forever but not in a way one wishes for.

It's been over a year since I developed the mysterious lung disease that would mean I needed a lung transplant. I still can't believe that this happened to me. Such a mysterious and rare disease requiring a lung transplant; where the heck did I get THAT?!

Idiopathic Bronchiolitis Obliterans; not something I ever expected to hear of let alone get! The doctors still don't understand how or where I got it. They never will and I guess it will remain a mystery from here on out.

As we approach Christmas, I am still recovering from my life saving lung transplant. I still can't believe I got my transplant! I seriously still find it hard to believe my lung came and I got my transplant! It is truly a blessing and a miracle. Just having doctors that can perform such a complicated surgery as a lung transplant is a miracle. And I got one of the best in Illinois. I am so lucky. My Christmas present arrived early and I cannot express how grateful I am.

We are going to have a VERY low key Christmas this year. No presents and just one of my brothers and his wife and my niece. My other brother and his family have issues and they, too, will be having a low key Christmas. We'll get to see them at some point and that's all that matters. All I want for Christmas I already got. I got my lung and that means if I take care of it, follow doctor's orders, take my meds and do all I'm told, then I get to live and be with my family. All I want is to sit with my family, share memories of Christmases past, enjoy our tree and rest. 

So I have many to thank for getting here this Christmas: 

-I have my family to thank for so much I can't even list it all, but without each and every one of them, this would not have been possible.
-I have so many friends to thank for calling, visiting, sending cards and gifts to help support me as I went through the process of trying to get on the list and then supporting and encouraging me while I waited for my lung.
-So many friends and neighbors who have driven us to countless appointments and brought us meals-this was so much help I cannot say, especially for my Mom.
-I have Loyola University's Transplant Team to thank for even taking my case when no one else would and saving my life! They are the "A" Team and I had a top notch surgeon, that things could not have gone better than they did. I was able to meet and shake the hand of the surgeon who saved my life. That will move a person to tears, let me tell you.
-Finally I have to thank the family of the individual who gave me the gift of life and donated the lung I received. I have no idea who they are but I am grateful beyond words. One day, Loyola will help me anonymously thank them and if they want to respond they will; if not that's OK too. I just want them to know how grateful I am.

This will be a very special Christmas; the best ever really. I am doing well after my transplant and we are so grateful. 

I already got what I wanted for Christmas - my family did too. I got my transplant. We will raise our glasses (mine filled with water) in a toast to my new lung and life. 

I have much joy in my heart to share with so many. Take time to be with those you love; you never know how much time you have. We will be enjoying Christmas in a whole different way this year; grateful for the gift of life!


MERRY CHRISTMAS
HAPPY & HEALTHY NEW YEAR!







Friday, December 12, 2014

MY EARLY CHRISTMAS PRESENT!

I just realized it's been almost two weeks since I Blogged! It's been a BUSY two weeks; so much so that the days get away from me. There is so much to do every single day to take care of my post transplant needs, that it seems we do nothing else all day long but take care of me.

The morning ritual is the most complex. I am required to take my vitals every single day: weight, temperature, blood pressure, blood sugar, spirometry (not fun), medications. In addition, there is a place on my incision that is not healing well at all and causing me a lot of pain.  This requires wound care twice a day. My Mom has to put this special prescription ointment into the wound and that debrides the wound, then she has to pack it with a damp piece of gauze followed by covering it with a dry piece of gauze. In the morning, I must get in the shower so that the wound can be showered clean before being re-dressed. We have to change the dressing twice a day, although I do not have to shower in the afternoon. The wound care nurses at the hospital said if it does not look better this coming week, then I will have to see the surgeon. Fingers crossed we see some improvement!

The meds must be taken 4 times a day, so I must set alarms so that I don't miss taking any of my meds, many of which must be taken at very specific times - no excuses - (14 pills 4 times a day - close to 60 pills every day)!

There is at home physical therapy twice a week, but I am also expected to do my p.t. every day, twice a day - if I can find time for that second time that is! There is a medication that I must take via nebulizer, which requires mixing the medication from the vials and then using the nebulizer to administer the medication. This is not for my breathing, but one of the medications most transplant patients take is an anti-fungal, however, the one I was taking caused my liver enzymes to increase to dangerous levels, so we had to stop that medication and switch to a different one. The only other one happens to be this one that you take via nebulizer. It tastes AWFUL and burns the back of my throat and often makes me cough. A necessary but unfortunate side effect that I must just learn to deal with!

I have had multiple doctor appointments, lab tests, my first Bronchoscopy. There are constant changes to my medications which means updating my 6 page list so I get it right; making sure my pill box gets updated with every medication change. Just filling my pill box takes 2 people over an hour to fill! 

I have the best team helping me and I am so thankful. My medical team, my family whose help is SO invaluable. This is a lot of stuff to remember and it really takes a team to help me get it all done and done right.

The Transplant Team told us it would be like this; they didn't lie! It is a never ending process on which I must focus and it's key to keeping my new lung healthy and working for me as it should. 

It's been a bumpy month since I was discharged after getting my new lung, I'm not going to lie. But it is definitely worth the effort. I see that I am making progress and the doctors are extremely happy with how I am doing. I like hearing that! Now if we could just get this wound to heal and the pain to subside, I'd really be happy. 

But this Christmas is a far cry from last Christmas when we didn't even know what was wrong with me. Here we are a year later and I got my Christmas present early and I have my new lung and I'm breathing on my own with no oxygen. It's all I ever asked for. I couldn't be happier about that!

Yes, I got my Christmas present early! I have lots to celebrate this year!

My Medication Table!

My Pill Box!

My Spirometry Device!

Doing my Spirometry!



Sunday, November 30, 2014

HAPPY THANKSGIVING (A BIT LATE)!

I have so much for which to be Thankful, I hardly know where to begin. My thanks and gratitude are in endless supply. I am SO thankful for my lung transplant and the Gift of Life I received a mere 3 1/2 weeks ago! It is truly astounding and not something I find easy to put into words. I am thankful my surgery went as smoothly as it did; that I had one of the top surgeons operating on me.
My FAMILY - well, there just are no words to express how grateful I am to have such a loving, supportive, encouraging (even when it must have been hard for them to do it for me) family that lifted me up and helped carry me through this journey, which is by no means over. In some ways, it's just beginning. They have STEPPED UP big time to help me and I love them all dearly.
To so many friends who have visited, driven, made meals, called and just listened when I needed it. I am so grateful!
This Thanksgiving is special on so many levels. Having had to be re-admitted to the hospital this past week due to some post transplant medication side effect issues, and being discharged just in time for Thanksgiving just adds to my happiness.
With much happiness, gratitude, and thanks, I want to wish everyone a Happy Thanksgiving!


Happy to be at Home on Thanksgiving