Re-Focus

I went to the doctor last week.  It seemed uneventful, but afterwards I was left confused.

First,  I had an ultrasound to check status on my blood clot.  As always, the first tech needed to get it reviewed after taking forever to get the first set of pics.  He came back with a second tech and ultimately brought the radiologist in.  The radiologist said he believes the clot is not in the artery going to my pancreas(as was previously concluded) and the the clot is still the same size.  I understand the same size part(not good news), but I don't get the "not in the artery" part.  I'll need to consult my doctor.

At my clinic appointment, my nurse reviews medication and expresses concern over my recent weight gain.  I had first thought very little of it, but she's right, its extreme.  I have gained 12 pounds in two weeks...ugh.  She tells me to look in the mirror and notice that my face is swollen and round; I have "moon face." Linda explains to me that these are side effects of the prednisone I am taking.  I'm still not too concerned, thinking I'll be able to exercise any additional weight off.

Dr Jonnson, who I met once while hospitalized,  comes in, asks a few questions, and basically I am ok...Yay!  He lowers my coumadin dose because my blood is now getting too thin. Everything else is stable.  I ask him about the blood clot.  He tells me not to worry - if its not in the artery, it wont affect my pancreas and kidney, which are functioning great.  He tells me to schedule an appointment with my nephrologist next month and that I am beginning the transition from the transplant clinic back to my nephrologist.  "Merry Christmas," he says.  "Come back in three months."

Three months?  I don't feel ready to move back to my nephrologist.  I am still paranoid each time I get my blood drawn that they're going to find something that puts me back in the hospital. I breath in his statement and realize its probably good news.  It means I am improving.  Dr Jonnson leaves.

Linda asks me if I have more questions.  I do...what about the clot? I'm wondering if its not in the artery, where is it? Linda explains to me its therefore in a vein. Ummm...I remember reading that the risk of a venous clot is that it can break loose, return to the heart and cause a pulmonary embolism.  I am confused as to why the doctor said not to worry.  Linda explains to me that if it doesn't affect the transplanted organs, its not a big concern to the transplant doctor.

Wow...I'd like to avoid a blood clot blocking blood flow to my heart or lungs.  Good news is that, despite a lot of coumadin, the clot hasn't decreased or moved yet.   I need more answers.  Linda promises to get me some more information.

The next day, Linda calls me to let me know she went over my lab results with Dr Wali, who is much more familiar with me, and he wants me to come back in three weeks and to continue weekly labs.  I feel reassured that he's going to look over everything.

When I get home, I look up venous blood clots and side effects of prednisone.  I don't find anything definitive on clots and the prednisone info is disappointing.  Essentially, not much can be done about the weight gain and will probably take a long time to lose it after coming off the medication.  I am disappointed.  I have worked hard to get where I am physically and I feel it slipping away.  

Hmmm. Now I know what my New Years resolution is. I need to make a healthy, regular exercise program a priority. I need to focus on the fact that my lab results are good, my kidney and pancreas are working great and I am way healthier than I was before. 

I smile a pudgy, swollen cheek, purposeful smile. 

I will control what I can and let go of what I can't.

With Thanks, Respect and Love

Dear Donor Family,

It has been over two months since I received from you the most generous gift anyone has ever given me: a kidney and pancreas from your loved one.  As I gather my thoughts and reflect, my mind often wanders to your family, wondering how you are, imagining you recovering from your loss and wishing you strength now and always.  

I wonder about meeting you, I wonder if you would welcome this idea. I wonder how difficult it must be living with the loss of your loved one.  On the day I celebrate my new beginning, I wonder how you are mourning the last day of his life.  I wonder if this letter, filled with my own optimism and gratitude, will cause further grief, knowing that it was the death of your loved one that fueled my new beginning.
  
I hope that in reading how his generous gift has brought about my new beginning, you will find comfort in knowing what a valuable impact your loved one, my hero, has made.

This new beginning is miraculous for me.  My twenty-two year struggle with diabetes and  two-year battle with kidney failure are over. I am no longer plagued by insulin shots, dialysis, high blood pressure, a heart condition, high cholesterol or anemia. My children no longer bear the burden of my limitations. 

How do I express my appreciation for the gifts you have given me? How do I thank the family whose grave loss renewed my life? I haven't figured this out yet, and I hope that this letter is a start.  I hope that you find some solace in knowing that our appreciation for your generosity is limitless.  

I know that my new-found life is only possible because of your family's selfless act, a selfless act that unveiled your generous and benevolent spirit even in your darkest hour. I promise you that this selfless act will never be taken for granted.  I look forward to learning more about you and your loved one, celebrating his life and honoring his memory. I promise to carry him with me, to take good care of him and to honor him with everything I do.

Please accept our deepest sympathies and our sincerest gratitude.                       

With thanks, respect and love,   

Michelle, Gabriella and Campbell

 

Happy Transplant-iversary!

Today is my two month transplant-iversary!

I have been home from the hospital for more than a week now, and nothing exciting has happened(which is exciting in and of itself).  My paranoia about returning to the hospital is subsiding. I am still waiting for my energy to kick in, but I am going to jump start it a little by getting on  the treadmill.  I am tired of being tired.

Despite the uber-importance of my two month anniversary, today I do normal things.  I meet with my son's teacher, go to the bank, stop at the grocery store, have blood drawn, work from home, make dinner, clean up, etc.  Interacting with others today, I realize again that I am not sick.

Before the transplant, I always tried to live my life like I was not sick. I am aware that is not the way people viewed my situation.  My grandmother used to introduce me to her friends as her granddaughter "who has fallen sick."  My college coach stopped expecting me to meet rigid demands once he witnessed a low blood sugar episode. When I was pregnant with my son(and feeling fine), my OB told me she wasn't sure if I should go on vacation because she was worried I was "too sick."  I was confused. I knew I had diabetes, a heart condition, high blood pressure and was pregnant, but I didn't feel sick. I just felt like me and this was my reality.

Recovering in the past two months, I have often felt sick, and this has been probably easy for people to recognize.  I walked slowly and carefully, sore and tired. I got exhausted trekking to the house from the car.  I was often dehydrated and dizzy. Without explaining anything to anyone, most people treated me gently and with kid gloves.  I imagine the fact that I wasn't feeling well has been visually obvious. I looked pale, exhausted and, well, sick...

But today...no one treats me like I'm sick.  People cut me off with their carts in the grocery store. An elderly man asks me for directions. My son's physical therapist does not ask me how I'm feeling. The dogs bark at me for treats, but don't nuzzle in to comfort me. The Fed Ex guy has no idea that I am the frail person who answered the door last month.

It's a big shift.  

Twenty two years of diabetes - POOF! Gone. 

Kidney disease, high blood pressure, high cholesterol, anemia - 
Gone, gone, gone, gone. 

Happy Transplant-iversary!

I am not sick anymore. 

99% is an A+ !

I have been home for four days in a row. It hasn't been hard to adjust.

Little by little, I am returning to real life. I sleep on a regular schedule, get up with the kids, go to all my appointments, work a little, taxi the kids around, do chores and make dinner. Mostly. And I nap a lot.

I am so lucky to have had my dad here to help me.  Well, sort of.  Up until this point, he hasn't actually been helping, he's been doing.  I've been the one helping him.  I know he wants to and enjoys time with his grandkids, but being a dad when you're really a grandpa looks exhausting.

My removed stent

I have my stent removed today.  It was placed inside my transplanted ureter at transplant to keep it open, but its no longer necessary.  The procedure only takes a few minutes and is uncomfortable but not really painful.  (I think I've built up an almost impenetrable strength/resistance to this kind of stuff.) The doctor advises me to be wary for excessive bleeding, but all day long, there's been none.

 

 After stent removal, I have my first post-hospital-release outpatient clinic appointment.  I'm feeling a little paranoid that anything could go wrong given my history, but everything falls in place.  My blood work looks great and I get back the best results I've gotten yet!

Dr Wali had previously explained to me that my CD3 level measures the amount of rejection cells present in my transplanted organs.  This test takes two days to culture. Upon admission, my CD3 was an acutely high 41%. (I'm not sure that I understand this completely, but logic says that leaves only 59% for the healthy organ cells...Ugh!) Dangerous and a little scary, he told me the safe zone for CD3 is less than 10%, so we are shooting for 90% healthy cells.  I am hoping for a trending down number, like the 20%'s or so. My post-hospital-release CD3 test comes back today with rejection cells at less than 1%!!

"This means the Thymoglobulin worked," Dr Wali says, but I'm really not paying attention at this point, just in awe and excited. Less than 1%?
 

"YAY!" My typical business-like approach to clinic appointments takes a back seat to my ear-to-ear grin of astonishment.

He goes on to tell me that he wont need me to return to the clinic for four weeks...woah! But I will be doing weekly labs and conferring with my nurse for any medication adjustments or unplanned check ups.  I'm looking forward to the break in trips to the hospital but a little nervous about being given such a long leash.  I remind myself that the only thing the doctor goes by in our clinic appointments and at the hospital is the lab work anyway; I can live with this.

What am I going to do with all my new free time and energy? I confirm with my nurse that I am allowed to do normal activities.  I can spend time in a kindergarten classroom, clean bathrooms, teach classes, go to the gym, eat at a pot luck?  Yes. "Live your life. Love your kids," Linda tells me. "You need to build up your resistance - just take it slow and use common sense."

My mind wanders and I imagine myself in my real life, busy again, really working and taxi-ing and changing diapers and paying bills and going to the gym and...I realize I wont be living MY real life anymore.  MY real life will be different than I have ever experienced. I don't know life without dialysis and diabetes, without taking the time to check my blood sugar and run the machine and all the other preventative and reactive measures I never seemed to have enough time for. 

Dr Wali interrupts my inner monologue and we say goodbye, shaking hands like old friends. I almost want to hug him. 

I smile and tell him I hope to not see him anytime soon.

Hooray for Home!

Homeward Bound :)

Blurry Memory

Today is my sixth day in the hospital this round. Since surgery, I think I've spent as much time in the hospital  as out.

It's becoming routine. 

• Blood draw at 4:30
• Resident comes by around 6:00
• Vitals at 7:00
• Breakfast by 8:30
• Morning medicine 10:00
• Doctor rounds around 10:30
• Vitals and Pre-treatment at 11:00
• Thymoglobulin treatment from noon-5:00
• Eat lunch before nodding off
• Treatment knocks me out every afternoon for a long nap, repeatedly interrupted by vital sign checks
• Dinner by 6:00
• Walk the stairs/tour the hospital after dinner
• Vitals, evening medicine and blood draw by 10:00
• Try to busy myself with iPad, phone and tv until bedtime

it's predictable, tedious and not productive, but I want to get the benefits of treatment, so it's do-able. I remind myself it's necessary and the end results will outweigh my current frustration.

When the resident comes, he goes over the update as he knows it. He tells me I am going home today, that I'll need to go back on a blood thinner at home, and the blood in my urine is not really bleeding; it's the clearing out of the dead rejection cells.

I listen to everything he has to say, ask pertinent questions, and then remind myself the attending doctor will do rounds in a few hours and he's likely to have a completely different assessment.  There hasn't been a day yet when the resident and the doctor didn't give me conflicting updates, and the attending doctor's opinion weighs heaviest.

When Dr Wali rounds, he tells me I won't go home today; there is still evidence of too many rejection cells in my blood work and this number needs to go down to confirm the rejection is at bay. I grin and hold back a chuckle, amused by the two doctors' contrary updates.

Translation: Two more days of Thymoglobulin treatment to attack the rejection. A blood test taken today will take at least two days to culture to check how well the Thymoglobulin is ridding  the rejection cells. 

"And potential rejection will always be an issue," Dr Wali says. "We will have to monitor lab work routinely to screen for issues."  Ugh. I want for this to be behind me, to be able to hit a fast forward button and jump to a time when my post-transplant complication memories are blurry and abstract because of all the tangible positives I've experienced since.

Dr Wali provides me with my first one: both my kidney and pancreas performance numbers are up, and he believes we are on the right track. 

I really want him to be right.

I'll Take Uneventful

Yesterday and today pass slowly. There are no drastic changes, and I am stable. 

Treatment makes me sleepy, so I rest a lot.

My lab numbers are a little better, but not much. There's still lots of bleeding.

Dr Wali is not concerned, and says they're going to find my baseline normal and target that, but only thing that can be done right now is Thymoglobulin treatment to suppress rejection. I should be able to go home Friday or Saturday, as long as my numbers continue to trend in the right direction.  If my bleeding has subsided enough, I'll also have my stent(from transplant surgery) removed on Friday.

He tells me there's a slim chance I'll have to stay two more days if there's not enough improvement in five treatments. 

So, I'll wait. It's just a few more days, and my kids and my dad will come for our in-hospital Thanksgiving visit. It will be rewarding to see them and revisit everything we are grateful for; there's plenty this year. I'm looking forward to tomorrow.

And I'll take uneventful and boring over traumatic and exciting anytime.