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Wow! Congrats on your anniversary, and thanks to your Mom for keeping a journal and allowing you to share some of it with us. It is truly uplifting!

Michelle G.

kristina,
CONGRATS young lady on your 1 year anniversary.
what a lucky young lady you are not just the success of your
transplant, but the love of your family and friends.
what your mom wrote gives me even more hope for my hubby, he is
closer know to going on the "machine" or transplant.
thank your mom for shaaring your story with us.
HAPPY HOLIDAYS.
from the gang in IOWA, Janet

Hey Kristina, congratulations on your anniversary!! It is easy to see why your such a fantastic young lady after reading your moms memoir. You are truly a blessed young lady and I feel it a privilege to know you.

I hope this holiday season brings you much joy.

Love always, B*

"Let us not be weary in doing good; for at the proper time,
We will reap a harvest if we do not give up.
Therefore, as we have opportunity, let us do good..."

Galatians 6:9-10

what kind of pain mangement is for migraines?
I have had 2 aneurysms repaired by Dr.Robert Breese in Denver
Colorado.Dr. breese is a great brain surgen.he is very kind and takes
the time to explain and answer questions,even after you are
dismissed.he will answer quesions e-mail.
but I have more migraines now.I have cat scan each time I go to the
E.R. and they give me pain medicine.
I use axcert now after 6 hours them I change to pain medicine.these
mirgrains last for days even with percocet.
Toni

Can I Keep It? I Promise I'll Take Good Care Of ItA Memoir
~The Call Saturday, December 3, 2005~
It was about 8 AM when the phone rang. My daughter, Kristina,
about a month shy of 17 years old, was next on the list as a kidney
transplant recipient and NY Presbyterian Hospital in Manhattan may
have a donor match. This was the 3rd time we'd been called to be on
stand-by, and the first time they told us to come to the hospital. We
had to be there within 2 hours. It looked promising. The timing
couldn't have worked out better. Kristina had just finished her
dialysis treatment, an eight hour per night process on a peritoneal
dialysis cycler. She hadn't taken her meds or eaten yet. My husband
hadn't left for work. He would have to be responsible for taking care
of our other 3 younger children. It was important that no matter what
happened, life remained as normal as possible for them. Keeping their
routines of school and extracurricular activities was crucial to
everyone's peace of mind. As we prepared to leave, I looked at the
new shipment of 30 boxes of dialysis solution (one box per night for
her treatment), the box of cartridges and the box of waste bags for
the machine that lined a wall of our apartment, and dreamt that maybe
this time we could send them all back. Kristina and I arrived at the
hospital at about 10 AM, our heads racing. Who needed to be called?
Will this be the day she gets her transplant, or will we be going
home and waiting for another call to be on stand-by? What about the
other children? I had to make sure their schedules were adhered to;
that my husband wouldn't forget to pick them up from their activities
on time, being our son was in one place and our 2 daughters at
another at the same time. Oh, sure, I was used to this, but he
wasn't. I stayed in touch by phone and needless to say, it all worked
out.
~Waiting (and Waiting)~
The nurses had us in an exam room. They told us Kristina would be
prepped for surgery, just in case. That meant she couldn't eat
anything. Eventually, the surgeon came in with his assistant and told
Kristina about this possible donor. He was a 24 year old male,
healthy, who had just died in a car accident, but his family agreed
to donate about 8 of his organs. They told her the tests were still
being done for the blood/tissue match, and she was allowed to eat a
light meal, but make it quick. I said "I know. Don't leave town."
Keeping occupied for all those hours was difficult. It seemed like an
eternity. At least there was a TV and VCR to play some old movies
that Kris would normally never watch. Occasionally, during the day,
I'd stop downstairs, have a cigarette and call a few people to update
them as much as possible.
~It's A Match!~
Finally, the Dr. gave us the news. We experienced a range of
feelings from gratitude and elation, to fear and anxiety. I was never
so grateful for a cell phone and the phone book on my SIM card! If I
ever had a doubt about how many people cared about Kris, how many
lives she touched, there was no doubt now. The people that prayed for
her, the concern for her, is incredible. Naturally, the first person
Kristina called was her boyfriend, Chris. At that time, they were
together for 8 months. Chris and his parents promptly made
the `journey' to the hospital via public transportation. They arrived
a little after 9 PM. Not long after, they took Kris to the operating
room. The surgeon reassured me that everything would be alright. I
gave Kristina a kiss and told her I loved her and she'd be okay,
actually believing it myself, and yet I was still restless. Chris
and his parents stayed with me in the Waiting Area the whole time. We
made small talk while we waited.
~Memories~
Some of the time, I thought of what brought us to this point in
the first place. Just two years before, in 2002, Kristina seemed like
a healthy 13 year old. She had just gone through a growth spurt that
summer, the kind where kids grow 3 sizes bigger within a matter of
months. Shortly after her 14th birthday, at the end of January 2003,
she got the flu. She had felt better for awhile, but in mid-February,
she had leg cramps, nose bleeds, couldn't keep anything down, had
trouble breathing when she walked and started having pain in the
kidney area. I took her to the pediatrician on the 18th of February.
The Dr. sent her for a sonogram and blood work. Her levels were not
where they should have been, and by February 21st, both her kidneys
totally shut down. It happened that fast. The sonogram showed Kris
has polycystic kidneys and they are the size of a 7 or 8 year olds.
In my opinion, the growth spurt she went through the summer she was
13, probably weakened them. Her pediatric nephrologist believes the
flu is what started the shut down process. The point I want to stress
here is there were no signs over the years to make us suspect
anything. She was always healthy, as far as we knew. Talk about
blindsided
On the 21st, at Staten Island University Hospital, they hooked her up
to a dialysis machine, through her blood. Her blood levels
(creatinine, BUN, potassium, everything) was so far off, that we
almost lost her twice while they were trying to bring them to normal
ranges. The Head Nephrologist of the hospital said in all his years,
he's never seen anything quite like this case, but have faith; they'd
get her through this. They did. By the 3rd day on dialysis, Kris
looked and acted like a healthy teenager. As soon as she was able,
she endured surgery to put in a catheter for peritoneal dialysis
treatments, which allowed her to live as normally as possible,
minimally watching her diet, as long as she connected the shunt piece
of her catheter to the cycler machine (the dialysis center provided
to us), every night for 8 hours, while she slept. We decided to put
her on home instruction for her academic education. The Dept. of
Education assigned teachers to our house as of March. Kris' medical
education was taken care of by life experience, one year and ten
months worth, before the transplant. It continues today.
~Success-Sunday, December 4th, 2005~
It was 2:30 AM. The surgeon came to tell me Kristina was going to
the Recovery Room. She did great. No problems and best of all, no
more dialysis! They left the peritoneal dialysis catheter in her for
a few days, for precaution. Chris and his parents were relieved to
hear the news and headed home. It was great of them to stay,
especially since they were taking public transportation home. Kris
was getting stronger and healthier by the day and she even underwent
the surgery to remove the catheter. About a week post-transplant, her
blood levels started going off again and considering the timing, she
wasn't going home as intended. For the next few days, the Drs.
adjusted her meds and thankfully the problem was resolved. Kristina
was home (with 12 days to spare) before Christmas. She wanted for
nothing else. She said "Mom, I got my kidney. I already have my
gift". The only thing she wanted was to thank the donor's family, but
she was told she'd have to look into that a year later.
~One Chapter of Life Ends, Another Begins~
As soon as we got home, I made the phone call I dreamt of when I
was leaving the house 10 days before. "Come pick up the boxes. We
don't need them anymore." We returned the cycler machine to the
dialysis center. Monday, December 4th, 2006 is the first anniversary
of the transplant! Over this last year, Kris has been to numerous Dr.
appointments to see her nephrologists in both Staten Island and
Manhattan. Monday, November 27th, was her last nephrology appointment
in NYC. Her last blood work showed her levels are better than normal!
Kris is a normal kid again. She has been attending school again since
September, this year. With Home Instruction, she was able to re-enter
HS exactly where she belongs, as a senior, and enjoy all the perks of
senior year. Her grades are up and she's involved in all gym
activities, except contact sports. I have so much gratitude to the
family, who in their time of grief honored the wishes of their loved
one, that he should be an organ donor. Because of that decision, my
daughter is blessed with a kidney that will hopefully last for years
to come.
HAPPY 1ST ANNIVERSARY OF YOUR KIDNEY TRANSPLANT, KRISTINA! WE LOVE
YOU AND WISH YOU MANY MORE!
*~Mom~*

Has anyone gone camping with drops, and if so, do you have any
suggestions? Has anyone used a Frio cool pack on these trips?
I'm going on a six day peace walk in Nevada March 19th through 25th:
and though I joined them the last two years, this is the first time
I'll have gone using glaucoma drops.
We camp out each night, and generally there are no amenities: i.e.
no restrooms, and no running water: the group leaders drive a van
that contains big bottles of fresh water and this is provided. The
van also carries our luggage, and we walk with a day pack.
Sherry told me about the Frio cool pack, and I have found it very
convenient and very freeing however have only used this in
activities in a city or where there are more amenities.
I plan to take along some kind of bowl to pour water into to soak
the Frio pack when it needs a refill, and to store the Frio pack
somewhere it will stay clean and will not freeze (like inside my day
pack while I am wearing it).
Currently, my drop schedule includes morning, and evening, however
due to vision changes, this may change to include also drops in the
day. So far I have not had to share with those who are not close to
me, the fact I use these drops. However this may change if my
schedule changes, so if I need to, I just plan to mention that I
have to take eye drops without going into details or unnecessary
medical labels, and that I need to take these during one of the
breaks.
I will also be especially careful, both in the evening and morning,
but also especially during the day if needed, to make sure to wash
my hands before touching the drops or my eyes.
How often does the Frio pack need to be refilled? So far I have
never gone more than 3 days without refilling it? The weather in
Nevada in March will probably be brisk during the night and either
warm, or cool, but probably not hot, during the day.
Any other suggestions?
Laurie

Hi Dave's Daughter,

Get all the medical advice you can, as soon as possible, and rely on their experience.

My son is now 28 years old, and things have changed a lot since then. I was already in an advanced stage of PKD and my pregnancy was monitored very closely throughout. I was taken into hospital 9 weeks before he was due, for complete bed rest, and with the intention of waiting as long as safely possible. Five weeks later, I started feeling sick and was induced that same day. Apparently the next stage would have probably been to go into a coma.

The birth was a strange experience. There were FOUR doctors! One held my hand throughout. It was only later that I was told he was there to revive me if necessary. One was waiting for the baby. He took one look at baby and decided he wasn't needed. Although he was a month premature, and very skinny, he was, and still, is unbelievably fit and healthy.

The room was also full of trainees, who had been drafted in because they knew, in advance, that they would be using a kind of delivery normally used only in an emergency - to put as little strain on me as possible.

The worst part of all that they then put me in a darkened room and checked my blood pressure every 15 minutes. They had taken the baby to another part of the hospital. After 12 hours they decided my blood pressure was not going to drop, as it should, and took me to a private room and brought the baby in a little while later.

We were in hospital another two weeks, because of me, not the baby, and finally let us go home on the coldest February evening you can imagine.

Even though he was a small baby, born early, the size of my kidneys made it very uncomfortable.

I don't want to frighten you. This is probably a worst case scenario.

Knowing what I know now, would I do it again? Yes, I would - but it would be extremely difficult, and perhaps foolhardy, to take the risks a second time.

Best wishes,

Pat

Laurie wrote:
I don't know about the wrist ones: but DON'T buy the ones you just
stick your finger into: I have found them extremely inaccurate.
I use an arm cuff meter that I manually pump up: however it has a
digital display that automatically calculates my pressure once
I pump it up and let it deflate. It seems to be pretty consistent
with what my doctor measures it as.
Also: large people with wider than average arms should take care to
get an extra large cuff for their meter, or it could be inaccurate.
Also if you are in this situation, make sure your doctor does this
as well.
Laurie.

First off, how old is MC? Most people are not tested for PKD unless there are abnormal lab tests during a physical, or it happens to be caught from a scan performed for another medical reason. Like this forum has been discussing lately, there is the 50/50 chance of developing the disease, or not. So as a young girl there really was nothing to test for if her regular check-ups were okay. Because of the expense of genetic testing, it is not something done unless medically necessary, otherwise insurance will not cover it.

Obviously being in the military and having to deal with TriCare and military doctors might be a little bit of a pain, but military personnel must undergo a complete physical each year and ANY abnormality in her labwork will be followed up on. When the time comes to be referred to a Neph, MC will do what needs to be done. Not all decisions about one's medical care is optional when a person belongs to the military.

PKD can present with a slow or rapid progression..it all depends on the form of the disease. The fact that MC's father had ADPKD is concerning, but it is important to look at all the factors surrounding his early death. Was he being treated for PKD? Was he undergoing dialysis? Was he following a proper diet, taking his medications, etc? Did he have any other health issues?

For you and MC's mother, I can understand the worry, but if this young lady is a Marine..I'd give her the benefit of the doubt that she will do what she must to keep a proper watch on the PKD. God Bless her for her service!

Best wishes and prayers!

Michelle G.

Chris,
If you accidentally drop the same drop in twice, I don't think it'll hurt
anything. I've done it many times myself. However, if you get only half a
drop in, that's fine too. If you miss completely, then you need to try
another drop.
Good idea to keep the drops in the fridge - easier to feel them going in!
Sherry