Gracie Facie

A lot has happened since my last set of posts. I’ll do my best to fill in all the blanks since many of you have been asking about Grace.

I would first like to say thank you to EVERYONE who supported our family while I was in school. I graduated in April and passed the boards June 1st, which means that I’m officially an ‘RN’. I work full-time in the Neonatal ICU at Aurora West Allis Hospital and enjoy it very much. The people who work there are kind, and I like the challenge that specialty nursing presents.

Now about Grace. She has been doing well with her peritoneal dialysis (PD) since Thanksgiving. We’ve waitied to pursue transplant aggressively until now because it took quite a while to get Grace’s body as normalized as possible. (Also, we needed to close the nursing school chapter before opening another).

Transplant, as you can imagine, is very complicated and involved. Enormous amounts of lab tests, doctor appointments, and meetings need to happen to prepare for the surgery. Yesterday we talked with the transplant surgeon and transplant pharmacist, along with the entire dialysis team we meet with monthly. The meeting with the surgeon was by far the most disturbing and eye-opening appointment we’ve had yet. The picture that was painted for us was not terribly encouraging, but I understand that this was not his intent, he was just being honest and informative.

In a nutshell….

Acute (or almost immediate) rejection seldom happens anymore because the anti-rejection drugs are incredibly effective. The biggest risk for Grace is due to the fact that her kidney failure is auto-immune in nature. The chance of the FSGS attacking the transplanted kidney is about 40%, and while the doctors watch for this very closely and would treat it aggressively, she could very easily loose the organ and wind up back on dialysis.

It was mentioned yesterday that PD is only effective for a few years, and if she were to be on dialysis long-term, it would have to be hemodialysis. Hemodialysis patients need to spend many long hours/week in the hospital or dialysis center, and tend to feel well only about one out of every three days.  Also, we’ve been told that people who remain on dialysis indefinately have a considerably shortened lifespan.  For a child, a working kidney is by far the best option, and the outcome of the first transplant really sets the standard for how subsequent transplanted organs behave.   

In the event that the transplanted kidney was lost, Grace would most likely be a candidate for another one, but it would be another long wait.  It takes months to approve a live donor, and at least a year to wait on the donor list for a cadaver organ.  The same risks would still be there, but the compatibility of Grace’s immune system may be different with another donor’s tissue.  The main difference between live and brain-dead donor organs are the lifespan of the transplant.  Usually a live-donor kidney can last in upwards of 20 years, while cadaver kidneys last only about 12. 

Life post-transplant is not without its non-organ-specific problems.  Because of the anti-rejection medications, Grace has a high chance of developing diabetes, cardio-vascular disease, osteoporosis, etc.  The list seems endless.  The additional risks of infections and organ rejection will follow her throughout life.  Grace has an endless supply of ‘what if’s’, but I guess I don’t know any individual who doesn’t. 

Please don’t misunderstand my intent, here.  The purpose of this blog is to inform you, not to seek pity or sadness for Grace or our family.  I am asked by many people every day how Grace is doing.  After this information was presented to us yesterday, I just don’t feel that I can verbalize it over and over.  I love every one of you who asks about Grace and prays for her, and I ask for you to please continue to do so.  She needs all the positive energy she can get.

One thing our life with Grace has taught us is to try not to think about the future any more than we need to.  We try and live a life with fun and meaning.  We try to focus only on the things we can change, but this is always a challenge.  (I know it all sounds so cliche, but there are no better words). 

To end on a positive note……..Grace has been granted a wish from the Make-A-Wish Foundation.  She has always wanted to go to Disney World, so they’re sending us there for a week in October.  Our family (mostly Todd and Grace) is crazy about Halloween, so we’re excited to experience all the Mickey’s Not So Spooky Halloween has to see and do.

I wish everyone a healthy, fun, and safe summer.

Angie

Grace was discharged from Children’s Hospital last night and was very happy to sleep in her own bed, but happier not to wake up with a blood draw from her arm.  Her dialysis is going fine and she’s feeling much better now that some of her lab values have returned to normal.  If it gets to be too long between dialysis sessions, she begins to feel pretty sleepy and nauseous.  She’s had almost all of her dialysis sessions during the day for our training, but now we need to switch her to nighttime treatments.  The supplies needed for this are extensive, so Todd and I have much organizing to do, and we’ll do our best to keep Grace’s room from looking like a hospital. 

So things seem to be returning to normal, or an altered version of what used to be normal at least.  Grace’s spirits were pretty low after a few days in the hospital, but she seems much happier now that she’s home. 

Grace’s doctors plan on the next few months being a normalizing period where she can get into a daily routine and become as healthy as she can be.  It won’t be long before we can begin typing/cross-matching people for kidney donation.  Many people have asked about that, and the first requirement is to have a matching blood type.  Grace is O+ and so am I.  It’s a very common type, so finding a match that way shouldn’t be too difficult.  The next step is to see how many of the 6 HLA markers match (kids recieve 3 from each parent), and the last step is to do tissue compatibility/cross-matching.  All this test involves is to mix Grace’s blood with the possible donor’s blood and watch for a reaction.  This is all a few months away, but I hope I’ve answered at least a few questions. 

Thank you to everyone who has helped with caring for our girls while we were consumed with everything.  Thank you also for all the gifts, calls, prayers, etc. we have gotten from so many of you. 

Angie

So Grace is being admitted to Children’s Hospital of WI today to begin dialysis.  Her Nephrologist says she really, really needs it but wanted to try and give her catheter more time to heal.  It’s still a bit leaky around the incision site, so that’s why she’ll be admitted for treatment.  Usually she would get the peritoneal dialysis for 10-12 hours/night at home.  This is where a large volume of fluid is put into her belly, allowed to sit for a while to absorb the waste, and then drained out.  That cycle will eventually happen 4x’s/night.  However, because her catheter site isn’t yet fully sealed up, she will get a low volume of fluid cycling 24 hours/day and watched very closely in the hospital because infection is a big risk at this time. 

Due to the whole H1N1 thing, visitors are limited at the hospital.  I have to pick a list of only 4 people other than Todd and myself that will be allowed to see her for the duration of her stay.  I’ll try and get my hands on a computer with internet access and keep everyone updatedm but if not,  I may or may not get to see my emails, but I’ll keep my phone with me.  Todd and a few other family members will be switching off staying with her while we juggle our other daughters, work, and dialysis training next week. 

Thanks again for everyone’s overwhelming support.  I think the twins will have much fun next week with all the friends and family who are going to spend time with them.  It will hopefully be an adventure in their eyes.  I’m sure Grace will be pretty bored and the hospital food is kind of icky.  Please feel free to call her – I’m sure it will break up the time and keep her mind off of other things. 

Love, Angie

Hi Everybody,

This post will be brief because I have to run off to my last Psych nursing clinical….finally.   Anyway, Grace had her peritoneal dialysis catheter placed yesterday and is feeling ok at home.  It’s difficult to convince her that meds will help with the pain, but when she accepts them she does feel better.  Christmas came early for her and we broke down and got a Nintendo DS and 2 games for her (even though I said she would never have a video game) – but it keeps her mind off of things for a while. 

As for her renal failure, it’s progressing rapidly.  When your kidneys are really bad, you loose a lot of your body’s protein through your urine and this causes fluid imbalances.  The protein is necessary in your blood to keep the fluid in the blood where it belongs.  However, in Grace’s case the protein is being dumped instead of retained in her blood, so she is accumulating a lot of fluid in her belly.  The dialysis nurse today attached a drainage bag to the end of her catheter/tube in hopes that the excess  fluid drains through it instead of around it.  Too much belly pressure and leakage will not allow her abdominal catheter site to heal and we’ll need to temporarily do hemodialysis (thru a port in her arm).  HOPEFULLY, the draining of her belly will do the trick.   

Thanks again for everyone’s thoughts, prayers, wishes, and help.  It is a big, big comfort to me knowing that we are not alone and everyone is so willing to do so much.  I’ll keep everyone posted, but it seems that one way or another Grace will be on dialysis by Thanksgiving week.  Ugh.

Love, Angie

Last Sunday, Grace was admitted to Children’s Hospital of WI with H1N1.  Most people with the illness don’t warrant a hospital stay, but due to the delicate state of her kidneys, her body was unable to tolerate it on its own.  Most people don’t realize that the kidneys regulate much of the balance in the body and without them things go haywire.  After 4 days, her vital signs were once again stable, although we still need to monitor her pretty closely at home and her medications are now numerous. 

Her kidneys, however, are done and she will need to be on dialysis within about 2 weeks.  Her surgery to place the peritoneal catheter (tube put into her belly) is scheduled for Monday and she will most likely begin peritoneal dialysis the week of Thanksgiving.  We chose this type instead of hemodialysis (port in the arm) because we can do it at home while Gracie sleeps.  Her nephrologist did change her opinion about waiting on a transplant recently.  She suggests we get the dialysis going because in and of itself it’s a huge undertaking, but soon we can begin the process of donor matching.

The thing I have to be surprisingly thankful for is that I was just told that my sister, Cici, currently serving in Iraq, is now in Kuwait waiting to get on a plane to come HOME to her family in DC   This was completely unexpected because she was scheduled to be there for a few more months.   She will be home in a matter of a few days.  If anything could make me feel happy at this time – this was the one thing that could do it. 

Thank you from the bottom of my heart to ALL of our family, friends, neighbors, co-workers, tachers, and classmates who have offered to help in so many ways - some have even offered a kidney   Just knowing that we have so many people who care so much about our family is getting us (me especially) through this awful thing.  Grace knows she is loved and I’m so very thankful for that. 

I will continue to try and think of ways for people to help – there have been so many offers from so many different directions it is incredible to me and I am overwhelmed by it (in a good way).  Thankyou so so so much.

Love,  Angie

Q

Good morning!

So we’ve been busy this week with dr appts, cooking, and babies, of course.  I just made my first trip to Whole Foods this week and can’t wait to go back.  I am very impressed.  The selection they have was incredible and pricing was pretty good, great with some items. 

Many of our friends and family have been inspired to make some changes to their ways of eating, and have been asking where to start.  It’s so overwhelming at first.  Some of them are ready for big changes and others are looking for baby steps.  I tell them all the same things:

• Find one or two recipes a week you’d like to try.  They are pretty easy to find on the internet, if you know where to look.  I’ll give some resources at the end of this post.  Get the items you need into your house, and two thirds of your task is done! 
• Change to brown rice pasta.  The brand we use is Tinkyada and can be found at PickNSave and all health food stores I’ve been to.  Be sure to undercook it just a bit and you’ll never know the difference from your old stuff.  I always keep some in the house along with some Neuman’s Spaghetti Sauce(simple ingredients in his products).  This, along with tacos, are my fall back dinners. 
• Start making shakes.  To get more veggies into us, I throw basically anything I have in my fridge into a blender.  Carrots, zucchini, celery, cucumber, red cabbage, kale, avacado, fresh parsley, etc.  Then to sweeten a bit, I’ll throw a banana and some frozen berries, and pour either water or rice milk and sometimes even some ground flax.  I got this idea from the Montel Williams show and ran with it.  They used an orange, a head of romaine lettuce, and water.  A blender is all you need.  Very simple and you get so much out of it!

What I did at first was to take a field trip with Todd and the kids to a health food store, i.e. Outpost, Whole Foods, Health Hut, and wandered around for a bit.  It took a while to find things without dairy, eggs, gluten, white potatoes and almonds, but once you find a few starters, it gets easier from there.  Your restrictions probably aren’t as strict as Grace’s. 

Many people have been asking me when we’ll know if things are working.  Well, the nephrologist is going to be looking at her blood tests every three months, and we have another one coming up at the end of March.  BUT……..we visited Dr. Kim Saxe, our naturopath on Monday.  After evaulating Grace, Dr. Kim feels that Grace is definately improving.  One of the tools many alternative medicine physicians use for evaulation is feeling for a pulse in your wrist.  It’s a very subtle thing, and gives an idea of the general strength or energy of certain organs.  Kidney, liver, spleen and other organ pulses are what they feel for.  Dr. Kim checked Grace’s wrist pulses on Monday and mentioned that when we first came to her, she could barely get a kidney pulse from Gracie.  Now, she is actually feeling an improved kidney pulse, not a terribly strong one, but better than before.  This in combination with the dark circles under Grace’s eyes lightening and some other factors, make Dr. Kim feels there is definite improvement. 

The next day at Dr. Gandy’s office, Grace was rechecked by means of Muscle Response Testing.  Dr. Gandy checked for overall energy, emotions, chemistry, structure, integration, and a few other things.  Grace tested very strongly for all except structure.  Dr. Gandy, also a chiropractor, adjusted her, and then Grace tested well for everything.  I told Dr. Gandy about the wrist pulse improving and she was very impressed.  She stated that it’s such a subtle thing to begin with that any improvement is signifigant.  Both Dr. Kim and Dr. Gandy were very happy with Gracie’s progress.  WooHoo!

Dr. Gandy is keeping Grace on the Standard Process protomorphigen and the NET remidies for Scars & Adhesions and Water(the water system of your body i.e.kidneys, bladder, etc.).  Dr. Kim has changed now from draining/cleansing Grace’s systems to building up the kidneys and adrenals.  (In naturopathic medicine, the physician alternates between draining and building).  On that note, with Dr. Kim Saxe’s permission, I’m going to give a link to her website.  I’ve tried many times to explain naturopathic medicine when asked, and find it difficult.  Her website does an excellent job of clearly explaining the basic principles of this type of medicine.  It is:

http://www.milwaukeenaturopathic.com/

One of our new favorite shows is on BBCA, or the BBC America channel, just on basic cable.  Dr. Gillian McKeith hosts “You are What You Eat”, and she is awesome!!  Gillian is a holistic nutritionist and offers much knowledge and creativity in her quest to help people to improve their health.  Basically all her recipes are anti-inflammatory, which is basically what my family is on.  I just got her cookbook, ”You Are What You Eat Cookbook” from Amazon.com for about $21.00.  It is honestly the best cookbook I have ever had.  The few recipes I’ve tried are simple, colorful, flavorful, and very good for your body.  (If you do decide to get it, be careful to get the cookbook, not the one that’s her “You Are What You Eat” program).  She does a great job of prefacing every recipe with an explanation of what the ingredients will do for your body.  (Good for increasing energy, or kidneys, or for your liver, or to lose weight, etc).  I love having specific health intentions for my cooking!

Anyway, to find samples of her recipes, google “Gillian McKeith recipies” and you’ll find quite a few.  The lettuce wrap is one of our favorites.

Well, that’s it for now.  I’m off to eat some Golden Lentil Stew.  Yum!

Love, Angie