Monday, May 25, 2015

MY IC BLADDER VS. MY KIDNEYS!

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

SIX MONTHS POST TRANSPLANT - THE GOOD, THE NOT SO GOOD AND EVERYTHING IN BETWEEN!

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



Saturday, April 25, 2015

HONORING THOSE THAT GAVE THE GIFT OF LIFE!

As a Lung Transplant recipient, I have been truly humbled to have been given the ultimate Gift of Life. I have been grateful to the anonymous individual whose lung I received and think of them often. I have written my letter of thanks following the guidelines provided by my transplant team. It is anonymous and the donor family may or may not reply. I'm OK either way. I felt compelled to write to the family and express my deep gratitude for their supporting organ donation and to let them know that I think of my donor often. I will also never forget that person and will honor their gift every year on the anniversary of my surgery.

April is UNOS National Donate Life Month, so there are many activities going on around the country at transplant centers to honor organ donation and organ donors and their families. The other day, Loyola, where I had my transplant, held their 23rd Annual Candlelighting Ceremony to honor organ donors and their families.

It was a beautiful, moving, humbling and emotional ceremony. There were speakers who had received a heart transplant, lung transplant, liver/kidney transplant, but the most emotional was the mother who spoke about her children. One, a daughter, who needed an ankle transplant, having been born with a club foot. The other, her only son, who upon getting his driver's license signed up to be an organ donor because as his mother told the story, "our family recycles everything". Here was a mother who was waiting for so long for a transplant for her daughter's ankle and then the worst thing that can happen does. Her son is killed in a car accident and, per his wishes, saved the lives of multiple individuals. Her son's ankle was too big for her daughter, so it went to a basketball player who was then able to continue pursuing his basketball career. Her daughter finally got her ankle transplant and this mother spoke of what it's like to lose your only son, but have him save so many others, and then have your daughter be the recipient of a much needed transplant. It was the most emotional and amazing story and she received a standing ovation among many tears being shed in the audience.

Then it was time for organ donor families, organ recipients (like me) to go light a candle in honor of our organ donor and all organ donor families. When I was handed my candle, lit it and placed it among the other lit candles, I thought of my donor and was filled with gratitude and much emotion. Tears ran down my cheeks.

There was a lovely reception afterward and I was able to speak to many on the Transplant Team that saved my life and are still working to help me be a successful transplant recipient. It was truly great to be able to thank them for all they do and for accepting me into the Lung Transplant Program. There were lots of hugs all around. If you just stood and quietly watched, you would notice how every member of the Transplant Team knows every patient by name; the patients all want to hug and take pictures with their medical team. It's a special bond we have with each other as patients and with our medical team that saved our lives.

The event was even covered by our local CBS affiliate, Channel 2 News; here's a link to their story on the event.



Getting Ready to Head Out for the Candlelighting Ceremony
Wearing my Blue & Green, the colors of Organ Donation & Transplant Awareness 

Please consider being an Organ Donor!

This candle is lit in honor of the individual who gave me the Gift of Life;
I am forever thankful and will honor them and remember them always.


"Tears in Heaven" - Eric Clapton


Sunday, April 5, 2015

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

The Victor
by: C. W. Longenecker

If you think you are beaten, you are.
If you think you dare not, you don't. 
If you like to win but think you can't, 
It's almost a cinch you won't. 
If you think you'll lose, you're lost. 
For out in the world we find
Success begins with a fellow's will. 
It's all in the state of mind. 
If you think you are out classed, you are. 
You've got to think high to rise. 
You've got to be sure of your-self before
You can ever win the prize. 
Life's battles don't always go
To the stronger or faster man. 
But sooner or later, the man who wins

Is the man who thinks he can.


"Defying Gravity" - Idina Menzel



Tuesday, March 31, 2015

THE DAILY RITUAL OF THIS TRANSPLANT PATIENT!

Post transplant is a lot of work. My daily ritual goes something like this:

- Get up at 7:15-7:30AM
- Take Vital Signs and Log for Transplant Coordinator (Weight; Temperature; Blood Pressure)
- 2-3 times a week check Blood Sugar
- Use my Spirometry Device and record outcome; need 3 successful tests (the machine talks to you so if you don't blow hard or long enough, it tells you your tests was unsuccessful and you must do it again) - my torture device!
- Anti-Fungal Nebulizer (takes about 1/2 hour) - Awful tasting and makes me cough!
- Shower and change Wound Bandage; while in the shower, I must sit on the shower chair and my Mom must scrub the wound, and run the hot water over it to get it clean and healthy; put on new wet to dry bandage once out of the shower - yeah, that's fun.
- Take Nasal Spray
- Take Daily Morning Medications (11 different pills just in the morning; 33 pills total for the day)
- Take the one Medication that is a Suspension Liquid - Disgusting doesn't begin to cover it!
- I am required to wait one hour after I have taken my pills before I can eat my breakfast.
- Get Dressed and check the clock; can I eat yet? Usually take pills at 8AM, so breakfast can be at 9AM. Oh look at that; it's taken so long to get all this done, it's actually 9:30AM and yes, I can eat breakfast.

The morning ritual takes about 2 hours. None of it can be skipped and all of it must be recorded for my Transplant Coordinator to review when she sees me. 

On the days I go to Rehab I have to make sure I get it ALL done, including breakfast so I can get out of the house by 10AM to head off to Rehab. By the time Rehab is over and we get home, it's noon and it's time for more medication and lunch.

By now I need a nap. My wound is sore from Rehab and I'm usually worn out from the exercise, so I have my lunch and take a nap.

Before you know it, it's 4PM and time for more medication. I finally have some time for getting on Facebook, maybe working on my Blog, Twitter or trying to talk to friends.

And then the before you know it it's dinner time. 8PM is time for my final round of medications. I try to stay up until 10PM so I don't go to bed too early and then wake up too early. But my sleeping is all over the map. If my cough wakes me up, usually that means getting out of bed and coughing for two hours. 

Sometimes, like the other night, I was in pain and couldn't sleep. I have pain medication, but if I take it I'll be a zombie in the morning and yesterday's morning routine had to start early because I had a doctor appointment and couldn't be running late because I overslept.  So I sat up from about 1:30AM until 3:30AM before trying to go back to bed and fall asleep.

Most nights something wakes me up several times a night. My IC bladder is often one, so if it isn't transplant related, it's my IC. I know many can relate to the sleep problems; it's not fun for sure.

And the whole thing starts over again the next day. Tuesdays and Thursdays are always Rehab. This week I have a doctor appointment on Monday, then Rehab on Tuesday and Thursday and the Wound Care Nurse down at Loyola on Wednesday. So I have an appointment every day but Friday. This is typical. The same thing is on the calendar the next week. 4 out of 5 days I have either Rehab or a doctor appointment.

Then there's the side effects of all that medication that has to be dealt with.  Having a transplant is like having a full time job. They told us it would be like this. They didn't lie or exaggerate that's for sure!

Yes, it's a lot of work. Saturday or Sunday I must fill my pill box for the week and that takes about an hour to fill the 28 slots in the box. But it's worth it. I am here, I am alive and I am blessed and lucky. But getting a transplant isn't easy and takes a lot of dedication from not only the patient, but their support system as well. 

The daily ritual is time consuming and often feels like a job. But it is work well worth doing and I am grateful to be doing it!


"Coming Out of the Dark" - Gloria Estefan

Sunday, March 29, 2015

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!


I just realized that I haven't written a blog since last Sunday's Inspiration Poem. It's been a rough week for me; my wound is not healing and giving me pain, then I bumped it on the staircase railing as I was going upstairs - OUCH!  This cough is driving me nuts and keeping me up at night. I've had seemingly endless appointments and Rehab, so I'm out a lot. Next thing you know the week is gone and I haven't written anything. I'm working hard at Rehab and trying to get stronger, but I am tired and in need of inspiration, so here the usual Sunday Inspirational Poem & Song for the Day. May we each find the inspiration and motivation we need to keep going even when it's hard.

Magic Wand

I wish I had a magic wand
To make it go away;
I'd wave my scepter over you
Until you were okay.

I'd think good thoughts; I'd send you love;
I'd transmit healing vibes;
My wand and I would surely beat
Whatever the doc prescribes.

But there is no magic scepter, so
I cannot cast a spell;
Just know you're often in my thoughts,
And I hope you'll soon be well!

By Joanna Fuchs


"Keep Holding On" - Avril Lavigne

Sunday, March 22, 2015

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

DESIDERATA

Go placidly amid the noise and haste and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly and listen to others - even the dull and ignorant. They too have their story.
Avoid loud and aggressive persons for they are vexatious to the spirit.

If you compare yourself with others you may become vain and bitter, for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career however humble. It is a real possession in the changing fortunes of time. Exercise caution in your business affairs for the world is full of trickery. But let not this blind you to what virtue there is. Many persons strive for high ideals and everywhere life is full of heroism.
Be yourself, especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline be gentle with yourself.
You are a child of the Universe no less than the trees and stars. You have a right to be here, and whether or not it is clear to you, no doubt the Universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive him to be, and whatever your labours and aspirations in the noisy confusion of life - keep peace with your soul.

With all its shame, drudgery and broken dreams, it is still a beautiful world.

Be careful.
Strive to be happy

Max Ehrmann (1872–1945)


"Angel" - Sarah McLachlan