1. April 2008 by Carol.

I’ve been meaning to write this for awhile now and am finally getting around to it.  Another person on the Loyola team that I am just getting to know more is the post-transplant nephrologist and the director of renal transplantation at Loyola, Dr. Susan Hou.  She was kind enough to attend my kidney’s birthday party a few weeks ago and during that afternoon she mentioned that she was a kidney donor herself. 

Wow!  I already admired her from my previous connections with her but now my admiration jumped up even more.  So I did a little “googling” tonight using her name and came across this article from another transplant recipient who wrote about Dr. Hou and her work.  She is an amazing woman who walks her talk in ways I only wish I could.  Read this article and be amazed…  http://www.associatedcontent.com/article/275737/a_tale_of_two_transplants_the_story.html.

My life is so greatly blessed with phenomenal friends and family and the most wonderful medical caregivers ever.  My regular doctors here in the western suburbs, Dr. Beth Larson and Dr. Greg Kozeny have poured so much into my life and now this amazing team from Loyola that I have been blessed to have in my life as well.

Thanks for reading…and may we all walk our talk!

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25. March 2008 by Carol.

There’s been this strange little sadness surfacing in me lately and I haven’t been able to figure it out.  And I’ve been trying to ignore it but not particularly successfully. 

Tonight a simple, empathetic comment from a Medicare telephone representative started opening that up to me a little.  In the last 24 hours (literally - because I had it yesterday at this time) I have misplaced my invoice for my Medicare premium.  And it’s due tomorrow.  When I commented about how much I felt like a dork for losing the envelope her response was “It’s okay.  You’ve got a lot on your plate.”

Wow!  I was in tears as soon as she said that.  I realized that since the transplant I’ve been trying to “tough it out” as often as I can and that I (and I’ve felt like a few others) have imposed all kinds of expectations on myself that  I should be strong and capable and acting like a  ”normal” person (whatever that means).  And that I should no longer have any problems or struggle with being sick and all of that stuff that goes along with being chronically ill.

But the truth is that I will always be chronically ill.  The transplant is not a “cure” - certainly an ENORMOUS boost to my physical well-being, certainly the best form of treatment and medical care for my kidney disease - but not a “cure.”

And I’ve realized tonight that the stress of the expectations I (and I’ve felt like a few others) have placed on myself had begun to break down by just that simple, kind word from a stranger at Medicare on the other end of the phone.

So any of you who may be reading who are also struggling with chronic illness, take heart…”You have a LOT on your plate.”   And while we who are sick can’t use that as an excuse it is certainly a reason for being kind to yourself and having reasonable expectations for yourself and not letting others control those feelings.  I pray that I can take those very words I am preaching and apply them to myself on a regular basis.

Thanks for reading!  And thanks to the anonymous Medicare representative who unwittingly spoke a word of healing to me tonight.

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24. March 2008 by Carol.

Today I went to the clinic at Loyola for the usual follow up.  It had been a month since I’d been there.  Right after the transplant it was every week, then every two weeks and this time a month.  But today my wonderful surgeon Dr. Holt said “See you in three months”….whew!  I’m passing from one phase of post transplant to the next.  Feels scary and happy all at the same time.  So today’s elimination is my passage into the next phase.  And also not having to drive down to Loyola as often.  That, too, is a happy elimination because it is a bit of a drive and a long morning in the clinic but it is also mixed with some sadness.  Loyola has almost felt like home the last three months so I feel like a (54 year old) child who’s about to head out on her own with only occasional visits to home now.  Happy and sad…

Thanks for reading.

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22. March 2008 by Carol.

Recently my milkman delivered samples of really good orange juice and pink grapefruit juice.  I LOVE pink grapefruit.  Until this year I’d order them by the cases from my favorite place in Texas that grows them and ships them fresh to you just off the tree.  Oh YUM they were the BEST!  And oh how I wanted that grapefruit juice!  But one (or maybe even more) of the drugs I take would be very unhappy if I consumed grapefruit and while my kidney is happier for it, I lament the elimination of them from my diet forever.  But if I held a grapefruit in my hand and Jaime’s kidney in my other hand and weighed them out…grapefruit…kidney…grapefruit…kidney…oh puhleease, no contest. The kidney allowed me to eliminate the possibility (at least for now) of dialysis or death from kidney failure.  So I sadly and happily took the grapefruit juice to work and shared it with my colleagues to get the temptation out of my fridge.

Another elimination in my life is one of the drugs I’ve had to take everyday since the transplant.  I took two of them a day so slowly my number of daily pills is shrinking.  I’ll always take a bunch but I’m down quite a bit from the 50+ I took when I first has the transplant.

Another type of elimination that it seems like many of my friends have been experiencing recently (six in the last few weeks and several others with parents who are very ill) is the death of elderly parents.  I have watched my friends care for their aging parents, go through the stress of determing the best course of care (in home or in a nursing home), have regular visits to the emergency room with their aging parents and now grieve their loss.  It is an experience I remember well as I went through it several years ago.  My parents were older when I was born and as I’ve gotten older (and gone through the decline of my kidney function) I have found myself grateful of that fact.  It meant that I went through what my friends are going through but at a younger age when I had more strength and energy and health.   I see God’s wisdom in this for me.  It also allows me help my friends through this time because I’ve known it and can relate to it experientially.  I pray that I can be an encouragement to them all.

Today is Good Friday and I recognize this day in my life as a time of rejoicing even though it is a day of remembering the crucifixion of my Lord Jesus Christ.  His death on the cross and resurrection three days later have eliminated my need for eternal payment for the sins of my life.   “He paid a debt He did not owe, I owed a debt I could not pay, I needed someone…” to eliminate that debt for me and Jesus paid it all on the cross.  That is the ultimate elimination.

May you know this truth in your heart, too! 

Thanks for reading!

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18. March 2008 by Carol.

My clever friend Nancy “found” the perfect card to celebrate my new kidney’s birthday:

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18. March 2008 by Carol.

     The amazing kidney switcheroo - taken just before transplant.

   Her kidney now mine!  Wow!

Something I’ve been meaning to post but had misplaced for awhile was the ultrasound of Jaime’s kidney inside me.  Someone commented that it’s the closest I’ll ever get to experiencing pregnancy…yes, that’s true but I get to skip the diapers - at least until I need them myself…okay too much information.  Here’s what it looks like inside me.  My doctor says that the entire oval part across the middle is the kidney and the white part in the middle of the oval is the filtration system (for those of you, like me, who wonder what you’re looking at).

 Thanks for reading…and looking!

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17. March 2008 by Carol.

Today is my kidney’s birthday!  Actually it’s Jaime’s birthday (and I won’t tell you how old my kidney is today but suffice it to say it is a number of years younger than the rest of me!) but since her kidney that’s inside me was born on the same day as she was I decided to celebrate by throwing a party to thank all who have helped me in so many ways through these last three months.  We had so much fun - it was a beautiful sunny day and we had good food to munch on and a cheery birthday cake to mark the occasion.  And I wore my Scarlet Satin Sequined Sneakers and my Loyola Medicine sweatshirt along with my new piece of jewelry, my medical alert bracelet that ties me to my surgeon, Dr. Holt, forever.

I am blessed with such wonderful friends!  I am humbled by my great blessing.

I am also humbled at all that each of them have done (and are still doing) as I’ve transitioned into this new phase of my life.  I have had limitations in how much weight I can lift and so a number of friends have lifted 3 gallon water bottles and other heavy things for me.  While I was recuperating there were times when I needed groceries - many friends took my grocery lists and visited the store for me and then carried them up to my apartment.  I needed help with housecleaning and several friends stepped up to that daunting task either by coming and doing it themselves or providing someone to do it.  It is humbling when someone sees all the dirt in your house and is willing to clean it up anyhow.  All of these friends called often to keep me company via phone in the long days of recovery.  Many supplied wonderful meals.  There were hospital visits and emergency runs to the hospital and all day vigils at the hospital.  There were visits to my home and lots of laughter and fun with those visits.  And there was prayer…lots and lots and lots and lots of prayer by these friends and by tens of thousands around the world (literally - between Jaime and me we know a lot of people who know a lot of other people who know even more people - all of whom are prayer warriors).

And my friends Paulette and Ruth reunited today at the party and they reminded me that they were there with me the very first time I went to Loyola to learn about having a transplant.  That was a very difficult day - one very much like a gigantic slap in the face to bring me to reality - and I was blessed to have my friends with me to stand with me and listen with me and love me through that time.  That was nearly four years ago and today we celebrated the culmination of that first visit.

 I continue to learn about how much the Lord loves me.  I have had many struggles with understanding that in these last several years as I got sicker and more tired and more weary in heart.  But I am incredibly blessed with phenomenally wonderful friends and doctors and other caregivers and today we celebrated what the Lord has done!

Thanks for reading!

  One of the Scarlett Satin Sequined Sneakers!

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14. March 2008 by Carol.

My friend John B. called me tonight and said “Happy Kidney Day” to me.  I figured he was acknowledging the fact that it was three months ago today that Jaime and I becamed joined at the kidney.  But he said that there was a real “World Kidney Day”.  So I googled it and, sure enough, there’s a whole website for it - http://www.worldkidneyday.org/.

So then I got thinking that it’s ironic that this is also my third month anniversary - that it should fall on World Kidney Day!  One one hand the surgery seems like it happened ages ago.  On the other hand it seems like just a very short time ago.  On the third hand [I’m allowed to have a “third hand” because, after all,  I have three kidneys! :-)  ], if it wasn’t for the scar and the handfuls of pills I take every day, I sometimes find myself even wondering if it ever happened!  There are SO many ways in which it still hasn’t hit me that I have a piece of my friend Jaime inside of me.  I do believe there is some emotional denial still going on inside me that I’m even sick at all.  that’s always been a struggle before the kidney - I used to sometimes wonder if I was just making up the kidney illness but the blood tests and my declining health told me otherwise and brought me back to reality often.

But now I feel reasonably well - still tire easily but I feel better than I have in years - and I think because of that the whole surgery experience almost feels like a dream.  But once again I see the 10″ scar and the alarms go off to remind me to take my pills and I have the bi-weekly blood draws and it all brings me back to reality.

I’m still formulating “Wow! Part II” to bring more of the emotions and thoughts about this surgery to the forefront but in the meantime I wish to you a joyous “Happy World Kidney Day!”

Thanks for reading.

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5. March 2008 by Carol.

Tonight I realized that I have not written about three amazing women at Loyola who have been a big part of getting me to this point in my post-transplant life.

The first one is Billie Kostro.  Billie was my pre-transplant coordinator and patiently took my phone calls and questions and concerns for 3 long years!  She was wonderful in the process - always patient with me and always giving me good answers to my incessant questions.  I want to thank her publicly.  She has bequeathed me to the next person on my list.

The next one is my post-transplant coordinator at Loyola - Anita Pakrasi.  Anita has inherited me from Billie and, of course, with that inheritance has come my incessant questions.  Anita is an incredibly busy person but she always is willing to answer whatever questions that I have with patience and cheerfulness.  She is stuck with me for awhile and because of that I want to thank her publicly as well for being willing to take me on!

The third one is Risha Moser who I believe (if the information I heard while I was going through the surgical process is correct) is the chief resident of urology at Loyola.  She is one amazing doctor!  She is very kind and caring and listens carefully to her patients’ concerns.  And she is very gentle in performing various “procedures” (which will remain nameless for the sake of all of you sqeamish folks out there) that she is called upon to do.  She has a remarkable career ahead of her.

All three of these women have been a part of the great blessing that has been and is still being bestowed on my life.  I wanted you to know about them.

Thanks for reading.

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2. March 2008 by Carol.

This past week I went to Loyola for the Monday morning clinic they have for all their post-kidney transplant patients.  It was a regular weekly thing until the first of February, then became bi-weekly and now I’ve been given the reprieve for a month.  I’m glad for having this extra time in between the visits.  It is quite an experience. 

It starts with a blood draw and whatever other lab tests needed for that visit.  Then it transitions upstairs to the surgery follow up area.  Many - perhaps even most - of us in that waiting area are there for the clinic although there are others there who are post surgical for other reasons.  But it’s a little bitty waiting area for what is becoming a bigger and bigger crowd.  This week there were many of us who had to stand for awhile.  Then the waiting begins for your turn to go in and get your vitals done with the nurse, review all your drugs with the pharmacist and her intern.  Then you visit with a variety of medical students (all of which I’m old enough to be their mother - an older mother at that) and anywhere from one to three doctors and residents.  Then at the end there’s a brief meeting with your assigned post-transplant nurse coordinator.  All of this becomes nearly a whole day’s commitment when you factor in the driving to and fro.

But this last week I looked around the waiting room at my fellow waiting patients (I had a two hour wait so had plenty of time to look around) and saw so many REALLY sick people and it caused me to startle and inwardly say “wow - do I really belong here?  These people are really sick - am I really that sick?”  I think I’ve always tended to be in denial about the seriousness of my kidney failure with an occasional reality check that would slay me emotionally for a few days.  But as I went through the surgery and the recuperation time and the couple of setbacks, I still was pretty much in denial about it all.  I was busy dealing with all the changes and just getting myself back to a more normal life.   But I knew the time would come when reality would begin to hit and I think it was this week at the clinic.

And each day I look at the 10″ scar down the front of me and that’s starting to set in some reality.  That scar is not going away and underneath it not very far down is Jaime’s kidney.  It’s starting to become a reality…

But I think there’s much more reality to come and that’s why I titled this Part 1.  I see the Lord’s hand in this as he slowly allows me to see the reality and I’m grateful for the gradual process rather than a “slap me in the face” all at once reality.  I think this is the time that I will really start to begin the sort of “soul searching” that comes with the fact that I am no longer planning my funeral but instead I’m thinking about the years to come.  Wow!

Thanks for reading.

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