Before and After

Well, today marks four days post-op for my mom and her donor. 

This is what they removed...

Yes, that's right.  That is my mom's kidney--filled with nasty cysts, hence the term POLYcystic Kidney Disease.  It measured a little over 10 inches in length (that is a 5 inch surgical ruler) and weighed between 5-6 POUNDS.

This is what it was replaced with....

Isn't it beautiful?? The prettiest 5 ounce normal kidney I have ever seen.  We are eternally grateful to Bettyann. 

I promised I wouldn't post any hospital pictures, so I will stick to that.  If I could, I would've taken and posted a picture of Mom's catheter filled with the most gorgeous urine I have ever seen.  New kidney began working immediately!

Now Mom is battling nausea from what we assume is a shock to her system since she is on super high doses of anti-rejection drugs, steroids, and others as well. 

We were hoping she would be released today (Happy Birthday, Mom), but tomorrow is looking more probable.

Here is a link to the most recent news article that was published about the surgery.  There were a few misprints, but overall this one contains relevant facts about PKD, organ donation, and living donorship.

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<> <> <> Lifelong friend steps in to donate kidney to Shrewsbury woman She received the transplant from her friend, who is from Baltimore, on Tuesday. By ERIN THOMPSON For the Daily Record/Sunday News From left, Bettyann Russell, 52, of Baltimore, Md., and Barbara Dohler, 53, of Shrewsbury, meet for testing at Pinnacle Health - Harrisburg Hospital prior to the surgery, in which Russell donated a kidney to Dohler. (SUBMITTED) York, PA - A normal kidney weighs about 5 ounces and is about the size of a computer mouse. That was not the case for Barbara Dohler, 53, of Shrewsbury. At least not until Tuesday morning, when she received a kidney transplant from a lifelong friend, Bettyann Russell, 52, of Baltimore. Russell had jumped at the opportunity to be tested as a possible donor when she learned that another donor had backed out. Dohler's kidney had grown to about 5 pounds before being removed at Pinnacle Health-Harrisburg Hospital. Dohler had Polycystic Kidney Disease, a genetic disorder characterized by multiple cysts on the kidneys. It affects about 500,000 people in the United States and has been found in at least four generations of her family on her father's side. Her grandfather, both uncles, her father and her sister have also battled the disease. Dohler said she was diagnosed at age 38. "I wasn't surprised," she said. "I knew I had it when I started to get kidney stones." Tuesday was not only memorable because of her surgery, but it also marked the seventh anniversary of her father's death, which was brought on from to complications related to the disease. "We watched her father being taken to dialysis three times a week," said Russell's husband, Gary. Throughout all of this, Dohler had kept in contact with Russell, who she met in high school. "We became fast friends," Dohler said. Russell served as one of the bridesmaids at her wedding. As they began their new lives, they kept in close contact through letters and phone calls. "This past December (Bettyann) inquired about (my disease) over the phone," Dohler said. "When I told her the time was getting close when I'd need a transplant -- and the original donor fell through -- she asked right away, 'How do I get tested?'" From there, Russell was tested and found that her kidneys were compatible. Dohler considers herself lucky. Of the 86,000 men and women on the waiting list to receive a kidney, statistics show that fewer than one in seven will receive an organ donation, according to the Living Kidney Donor Network. "I'm extremely thankful that Bettyann has been doing this with me. I'm very blessed," Dohler said. The two women and their families arrived at the hospital for surgery at 5:30 a.m. Tuesday. Both were in good condition following the procedure. If there are no complications, Russell is expected to be released Thursday and Dohler on Saturday or Sunday. Learn more To learn more about kidney health and organ donation, go to www.kidney.org.

My Mom's a Local Newspaper All-Star!!!

Front page...right under the "Japan" main headline!   

Kidney transplant another bond between
friends

LAUREN WHETZEL The York Dispatch

Posted: 03/28/2011 12:40:02 PM EDT

Barbara Dohler, 53, right, of Shrewsbury, will be receiving a new kidney from Bettyann Russell, 52, of Baltimore. (Submitted Photo)

There's a reason why, as a young teenager, Barbara Dohler befriended "the new
girl" in her neighborhood.

Bettyann Russell still remembers back to how nervous she was prior to
entering a new high school as a freshman in 1973. But luckily, Russell said,
Dohler took her under her wing and helped ease her worries of meeting people and
adapting to life in a new town.

The pair, now in their early 50s, remained close friends over their adult
years through lengthy Christmas letters each year and occasional phone
calls.

And a casual call between the friends this past Christmas led to
life-changing decisions for both women, said Dohler of Shrewsbury.

Dohler has battled polycystic kidney disease (PKD) since she was 38 years
old. Each night, the 53-year-old woman is required to undergo a nine-hour
dialysis treatment in her home. She said she's seen first-hand how the disease
affects one's body, as her father and grandmother both died of complications
from the kidney disease.

"I knew my functioning would decline to the point where I'd need dialysis.
But I really didn't think about it until about five years ago when I knew my
kidney functioning was declining," said Dohler.

About a year ago, Dohler said her doctor suggested she start seeking
potential kidney donors since her kidneys were failing and she was fatigued each
day.

Shortly before the holidays, Russell asked Dohler about her health during a phone conversation.
While Dohler would typically reply that she was doing fine, she admitted that
time was running out before needing to begin dialysis because her first
potential donor was unable to follow through with testing for compatibility,
said Russell of Baltimore.

That's when, Russell said, she suggested she be tested to see if she could be
a kidney donor for her friend.

'So blessed': "I didn't want Barbara to miss out on the joy that I
have with my grandsons," said Russell, noting she needs a lot of energy to keep
up with the youngsters. "I've been so blessed, donating my kidney is my way to
thank God for the blessings in my life."

Russell said her entire family supported her decision to donate a kidney to
her childhood friend.

"There's a reason why Barbara befriended me and helped me through freshman
year of high school. That 1973 meeting was purposeful, she never asked me for a
kidney, I just felt it was my call to help her," said Russell, of Baltimore.

January's preliminary test proved the pair's kidneys were compatible, she
said. January and February were spent undergoing extensive medical physicals to
be sure that she was physically well enough to donate her kidney to Dohler.

Surgery Tuesday: After a few short months of preparing for the
transplant, the two will undergo the surgery Tuesday at Pinnacle Health's
Harrisburg Hospital.

Dohler, who enjoys traveling with her husband, Gary, of 33 years, said she
looks forward to being able to live an energetic life free of dialysis
machine.

"I feel very blessed and thankful. It's overwhelming that someone is willing
to do this for me," said Dohler.

As for now, Dohler said she's excited for the surgery and looks forward to
not having to worry about how her health will limit her interaction with her
grandchildren.

Awareness of a Different Kind

Normally my posts revolve around Cameran and what she is doing, or incorporate advocacy for Down syndrome. 

This post is different.  This post advocates, but for another type of need. 

Living Organ Donation.

The following is a letter I drafted and then sent to various media junkets in the area.  Within a day, two have responded, one being a confirmation of a future news story.  I hope that people will see what a selfless gift that Bettyann is providing to my mom, and that no possible words can convey how thankful and grateful we are to her and her family.  I cannot wait to see how the final newspaper story turns out!




To Whom It May Concern,




At a time when news is bleak, patrons cling to the rays of hope that come from uplifting human interest stories and other such pieces.


Next Tuesday, March 29, 2011, a voluntary kidney transplant will take place at Pinnacle Health’s Harrisburg Hospital. My mother Barbara Dohler, 53, of Shrewsbury will be receiving a new kidney from Bettyann Russell, 52, of Baltimore.


Barbara’s family history of Polycystic Kidney Disease (PKD) is so dominant that it has not missed a generation in over four. Both of her uncles have battled this disease to the point of dialysis and transplantation, and her sister also is afflicted with PKD as well. Barbara’s father had an emergency double kidney removal in 1997 and lived the rest of his life on dialysis until his death on March 29, 2004.


What makes this a remarkable human interest story is two-fold. One aspect is the general raising of awareness about the importance of kidney donation, or any donation, whether voluntary or post-mortem. A second noteworthy aspect to this story is the manner in which Bettyann came to be Barbara’s life-saving donor.


As teenagers Barbara befriended Bettyann, the new kid on the block. Their friendship blossomed over the years, Bettyann serving as a bridesmaid at Barbara’s wedding. As they each began new lives with their respective families, they stayed in contact. Years turned into decades and the two continued to correspond via lengthy Christmas card letters.


During recent years Bettyann would inquire about Barbara’s kidney functioning. Barbara’s kidney functioning has technically been considered “kidney failure” for well over a year, but not wanting to begin dialysis Barbara remained resilient to her fatigue and other bodily symptoms that accompany PKD.


At Christmas of 2010 Bettyann asked the same question of Barbara. This time Barbara admitted that time was running out before needing to begin dialysis and shared that her first potential donor was unable to follow through with testing for compatibility. Bettyann responded by stating that she would like to be tested to see if she could be a kidney donor. She wanted Barbara to regain energy and be able to spend time with her two year old grandchild as well as be able to help her daughter with the arrival of a second grandchild in September. After the holidays she would speak to her husband and children to be sure she had their blessing. She did. January’s preliminary test proved the two were compatible and the rest of January and February was spent undergoing extensive medical physicals to be sure that Bettyann was physically well enough to donate.


This coming Tuesday, the two will arrive at Harrisburg Hospital and begin their journey to surgery. Both patients. One recipient. One selfless donor.


March 29th. The circle of renewed life for Barbara on the 7th anniversary of her father’s death.






Thank you for your consideration in using this as a feature.






Respectfully submitted,




Jennifer

Bettyann and Barbara

Donor and Recipient

Enjoying Cameran's 2nd birthday

Babysteps (Don't mind the husband in the background--and what it is he is doing with his tongue and cheek, I have not a clue!)

Have a great weekend!

Firsts and the Future

You know how when you want your child to do something/say something on cue it never works out?? 

Case in point...I went to pick Cami up from daycare yesterday, and upon arrival her daycare room teacher J, who I love, said that she took 3 or 4 steps yesterday unassisted!!! I tried like crazy to get her to do it for Ryan and I at home but she just got her sassy grin, and would drop and crawl.


She is also eating all sorts of new foods.  Her two (and only) teeth (both top molars) are coming in handy for pot roast, unpureed veggies and fruits, bananas bitten from the peel, Goldfish crackers, and other crunchy items.  She will pretty much crawl after whoever is closest and currently eating.  Now we need to get to the self-feeding part.  Slow and steady, slow and steady...

Baby #2 is still kicking ;) I am 14 1/2 weeks. Thought I would be finished the happy-go-pukey stage, but that isnt the case at all. I actually got to work (7th grade) and ran like crazy to the bathroom and lost it during homeroom earlier this week. Not cool.

They are sending me to our maternal/fetal medicine unit this time for the 20 week ultrasound. We passed up all the testing once again. I was afraid they would give us a hard time because of Cameran and an apparent increase in odds, but oh well. We were never supposed to get pregnant without IVF in the first place, then Cami came along. After Cami, we figured it wouldn't happen again, but if it did then it was obviously God's plan, and so I (foolishly?) didnt go back on birth control. In any case, bam...September 9th is on its way.

I would be lying if I said I am not petrified. I obviously know that there is a chance this cherub could have Ds or some other issue, and I will be okay with that, but I want more than anything for Cameran to have a typical sibling that she can grow close to and have to model behaviors and to learn from as they both grow. I know that I can't expect this sibling, if she is "typical" to be Cameran's guardian later in life, but I hope and pray that they are close enough that it is a non-issue. I really try to live in the present and not dwell on future but this baby makes me think of ALOT of potential issues...sigh.  Everyone tells me that it will never happen twice, and there are quite a few other mamas who currently pregnant with their second child after having the first with Ds who seem to all be "good to go" right now.  I just can't imagine that all of us will come out of this being in that 99% of "everything's okay".  So I worry.  Not a lot, but off and on...So if you feel compelled, please pray for us. 

In other news, my madre's kidney transplant is still on for March 29th!  Pray no one gets sick between now and then and for wisdom and guidance for the surgeons that day.

:)  Happy Wednesday

Rough Start

To say the least March has been on the rough side so far. We are just now recouping and recovering. Cameran and Mom have been home from the hospital for a week or so now. Catching up on sleep and housework is the biggest challenge at this point.

The montage covers Peanut from before her trip to the ER/bronchiolitis/RSV diagnosis to coming home and recovering. Phew. I hope not to return to the hospital prior to delivering this baby unless it is for my mother's kidney transplant!

**Update to clarify** I have been a terrible blogger between catching up at home and at work grading papers, etc, blogging has gone by the wayside.  After they did a chest x-ray of Cameran prior to being admitted to the ER, it showed bronchiolitis, we were given antibiotics, a nebulizer treatment and sent home.  The next day she was worse coupled with a high fever...They didn't bother testing for RSV,just quarantined her and assumed that is what it was and then began treating for pneumonia.  At the same time we were admitted, my mom was taken to the ER for what felt like kidney pain, and wound up needing to begin dialysis. **

Speaking of transplants...Mom found out on Friday, the day which was to be her transplant prior to being hospitalized for kidney pain, that her new transplant date is Tuesday, March 29th.  Talk about the circle of life/destiny/God being in control...For us, this date is way more memorable then Friday, March 11th, because on 3/29/04 my grandfather passed away due to complications from kidney failure and being on dialysis for 7+ years.  Even though my mom is bummed about having to start dialysis (at the hospital they discovered her creatinine levels had gone up significantly), now she has an end in sight which makes it all worthwhile.  She's a fighter and has waited all too long for that special person to come along and make the selfless sacrifice of giving up a kidney so my mom can be healthy, and to BA we are eternally grateful.

March: In like a lion, out like a lamb...

Make video montages at www.OneTrueMedia.com

Yay for...

...taxes being done!  Serious refundage is on its way (by the end of the month, of course)!!!
But on a more serious note, my madre finds out this Friday (if all goes well) whether or not the woman who has been undergoing testing (a high school friend) will be a kidney match for her!  All has gone well so far in the potential donor's own health screenings, and the blood typing is a match.  Now comes the fun part of which I imagine occurs in a petri dish where the blood of my mom (which she has to give monthly to keep fresh for instances such as this) will be meshed with the blood of the potential donor. 
Praying that this is the match we have been praying for.  Up to this point everything has occured rapidly.  The potential donor came forward around Christmas time stating that she would like to donate.  After Christmas and holding a family meeting, her family was totally on board with her selfless decision, and the month of January has been a whirlwind!

So, if you have a second, pray for my mama and that this match has the potential to be a success!

(I'll save requests for prayers that morning sickness goes away ASAP for another post ;) , and thank you to all who have sent us well-wishes for our unexpected future addition...More to come on Baby #2 soon...

31 for 21: Day 4

Today was grey and rainy here in PA.  It made my sinuses drain and my head hurt and all of the unpleasant things that are byproducts of incoming Fall weather. 

That said, after I got myself out of my sick day funk, I picked up the LO and off we headed to the doctor's office.  In the end it turned out to be quite the good day.  I learned that Cameran and any other future children have absolutely no chance of Polycystic Kidney Disease since I do not have it.  Apparently I was sorely misinformed when I believed that it could skip generations, which is GREAT news.  Now I need to stick to a better diet and lower my blood pressure slightly in hopes of continuing on to become a possible donor for my mom.  No Halloween candy for this mama!

Short and sweet.  That is the motto of today's post.  We are counting down to the YADSA Buddy Walk. Stay tuned for pics.  We have some sweet team buttons being made by our friends at daycare!

Random thoughts

It has been 4 days in a row that we have not had projectile emissions spewing from Cameran!  Who knew the doctor actually knew what he was talking about when he said the Prevacid takes about two weeks to get regulated in one's system?!  Awesome!

In other news, this is the weekend of house painting.  Ryan hates painting.  I am not sure why this is.  Given that we are akin to Felix and Oscar, I would like to think that it is because he is uber anal and doesn't feel he does a good enough job as opposed to just not wanting to get the job done.  He cleans like a trooper.  I am a piler and he is a pitcher--as in, he tries to throw away everything he gets his hands on.  In any case, it is a good thing that one of us is neat and orderly or I just might have a future on A&E's Hoarders.  Apparently being a pack-rat is the first step to old person hoarding.  What.ever.  You never know when you might need something.  Seriously... What does this mean?  It means that our dear friend is giving up her weekend to come paint.  I finished ripping out the nasty carpeting under the baseboards since the carpet is getting installed in two weeks.  It is just easier to paint them that way.  What isn't easier is my breathing.  I think I started up a dust bowl.  Filthy carpet.  I smite you.

If I write on this blog that I am dieting, will I actually stick to it (for more than a week)???  It's not like I don't have a good reason.  I am going to get tested to see if I am a match to be a kidney donor for my mom.  My mother-in-law has graciously stepped forward and is already undergoing testing, but she is at the "high end" of normal levels, meaning that she is still a candidate, but she needs to watch out for her own health because she is borderline in terms of safety to her own body.  I figure, why not?  I found out about a month ago that I somehow became one of two individuals on my mother's tiny family tree that has avoided Polycystic Kidney Disease.  That alone is such a blessing that I would feel weird sitting around with two perfectly good (potential) kidneys knowing that my mom is staving off dialysis in two month increments.  Plus, laproscopic surgery should be a breeze (okay, mildly sugar-coating here) because they can use Cami's C-section scar for one of the three openings!  (I wonder if a tummy tuck is possiblewhile they're in there???) With that said, I don't want to get rejected before I get started, hence the NEED to lose weight...

Amen.  Good night.