Stay Strong ANYA

$20,921 of $50,000 goal

Raised by 142 people in 57 months
Anya has cystic fibrosis, received a double lung transplant in 2008, and is currently waiting for a second transplant.  Funds will be used to defray medical costs for Anya's care.  Most recently she has been in the CCU at INOVA Fairfax since August 17th and when she is stong enough will transported via air ambulance to  Houston Methodist Transplant Center for an evaluation for re-transplant.  


More of Anya's Story:
http://anyasstory.com/about-me/   


Anya Crum was diagnosed with Cystic Fibrosis (CF) when she was three months old. Throughout her life, she has needed close medical supervision. During her childhood and adolescence, she went through a 30 minute respiratory therapy three times a day. 

Anya’s CF also affected the ability of her body to break down and absorb food, thus she has taken enzymes before each meal and snack for her entire life. 

Throughout most of her life, Anya was very active and healthy and led a normal existence. In 2002, however, her health deteriorated rapidly. Anya was hospitalized for the first time since she was 6 months old. Over the next few years, she found herself in and out of the hospital nearly every 6 months due to pneumonia and other lung infections.

In 2004, because of the severity of the disease and its progressive nature, she was evaluated then placed on a lung transplant list.
On June 24, 2008, the call finally came that lungs were available from an anonymous donor. After 35 days in the hospital, Anya went home to Chantilly, VA with new lungs.

In the fall of 2010, she participated in the US Transplant Olympics in Madison, Wisconsin. She won silver in the 100 meter dash. A picture of her, with her medal, hangs inside the transplant clinic at Inova Fairfax Hospital still today.

In March of 2012, Anya noticed that she wasn’t able to run as far or as much as she had been running. After several months of declining lung function, numerous bronchoscopies, IV antibiotics, and a lengthy hospitalization for pneumonia, the Fairfax transplant team officially diagnosed her with chronic rejection, also known as bronchiolitis obliterans syndrome (BOS), a common condition with lung transplant patients.

Anya's lung function has continued to deteriortate over the past two years.  She's been in the ICU twice over the past two months, and hospitalized three times in the past year with lung infections.  Anya's currently in her window for retransplant.
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HAPPY NEW YEAR!!!! It has been a while since we updated you on Anya. She was in fact listed on the transplant list in late November. On this Tuesday evening, Anya received the news that there were potential lungs available. They were a MATCH! She went into surgery around 2:30 am on New Years Eve and the surgery was completed around 9:30 a.m. So far, so good. She is alert and progressing. However, there is still a long way to go to get her up and moving and back home to VA. As you can imagine, medical bills and expenses are continuing to grow. Every little bit helps and will go directly to Anya and her family. If you haven't donated or want to donate again please do so. A new year has started and new step in getting Ms. Anya back to her old self . . . .
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ANYA IS OFFICIALLY ON THE WAITING LIST FOR A SECOND LUNG TRANSPLANT!

She was listed on November 19th.

Not much has happened over the past two weeks. Our dog, Remy, ate an entire box of cookies, which put him into a food coma for 2 days. Our other dog, Rudy, somehow got his lower canine embedded into his lower lip, which resulted in a trip to the vet.

Anya’s mom and I spent Thanksgiving with Anya in her room. Jocelyn and Patrick sent us Thanksgiving dinner in a box from Omaha Steaks (thanks for that!). Becky, Lauren, Stephen, and Luke stopped by to say hi on Thanksgiving evening.

Not much else has really happened since Anya got listed two weeks ago. We’re just waiting for “the call” now. As of November 28th, there is still only one other person with the blood type B and an LAS of greater than 50 in our donation service area, so Anya is most likely second in line right now. She may even be first in line, depending on the size of the incoming lungs.

Anya is continuing to get stronger every day. The occupational therapist comes in daily to do breathing and weight exercises for about 30 minutes. The physical therapists take Anya on walks at least once a day, but usually twice a day. Anya’s been doing great on her walks lately. Yesterday, she walked 1,200 feet without stopping to rest. It’s probably the best she’s done since we’ve been here at Kindred. She walks anywhere from 900 feet to 2,500 feet daily, the length of 3 to 8.5 football fields. Post-transplant success is directly related to physical strength pre-transplant, so that’s why every doctor has been stressing the importance of exercising daily.

Anya’s weight has been steadily increasing too. She weighed 84 pounds yesterday. Last week, she was 88 pounds, but we knew that something was off because she was putting on a lot of weight, quickly, so we told the doctors and they prescribed a diuretic (Lasix) to help reduce some of the water weight. Her arms and legs were swelling a little bit. We figure that her real weight is probably around 80-82 pounds, which is great considering where she was just a month ago.

Anya’s feeding tube twisted inside of her stomach last Wednesday, so the GI docs had to replace it. This is the second time that it’s happened. The first time, the entire tube came out, so they had to wait for the incision to heal before replacing it. This time, the tube was still in place, so the docs just had to pull the old tube out and thread the new one back in, which was much less invasive and much less painful. Unfortunately, Anya lost about 5 days of weight gain during that time because it happened the day before Thanksgiving and there were no doctors able to do the procedure until the following Monday.

Anya’s hemoglobin fell below the critical level (7.0) a few weeks ago.
“Hemoglobin (Hb or Hgb) is the protein in your red blood cells that carries oxygen. A low hemoglobin count is a below-average concentration of the oxygen-carrying hemoglobin proteins in your blood.”
http://www.mayoclinic.org/symptoms/low-hemoglobin/basics/definition/sym-20050760

The low hemoglobin is most likely the result of the nutritional problems that we’ve been dealing with. The doctors are giving Anya intravenous iron to help with the production of the red blood cells. It’s going to take a few weeks, but hopefully it’ll help with the blood problems. The doctor explained to us that her levels are not at a “severe” level yet because she’s been hovering around 6.8 to 7.5 depending on how they draw the blood, but he wanted to see what they could do before it got to a bad level (below 6.0). The alternative would be to have a blood infusion, but the problem with that is that antibodies could build up causing post-transplant rejection problems, which is something the doctors want to avoid. The doctors are keeping a close eye on it, but as of right now, it’s not a major concern.
That’s really about it for now. Anya’s doing pretty good. The good days seem to be way more frequent than the bad days now. Being here at Kindred has really been the best thing for us. I feel that Anya is the strongest that she’s been for the past 3 months. Just waiting for a good set of lungs now… I have a feeling that they will be coming soon…
mid-walk group selfie
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It’s hard to believe that we’ve been in Houston for over a month already. There’s been so many ups and downs during our time here. I imagine that it will be like this until we actually get out of this place.

The thing that Anya is having a problem with now is her weight. They’ve been weighing her daily. Yesterday, she weighed 72.8 pounds. She’s been having some major stomach problems which could be the underlying cause of her weight loss. She told me that it feels like someone is stabbing her repeatedly in the gut. The only thing that’s been helping her is IV morphine, which is not something that a pre-transplant patient should be on, but the pain is unbearable for her. The doctors just changed her feeding tube food and added an anti-diarrhea drug, so hopefully her stomach problems will be fixed soon.

Nutrition and weight loss is a pretty common thing for CF patients awaiting transplant. The ideal BMI for a pre-transplant patient going into transplant is between 17 and 30. Anya’s BMI is currently at 14.2. In order to get to that minimum 17 BMI, we need to get her to about 87 pounds. With all of these potent antibiotics that she’s taking, along with the round the clock tube feeding, numerous bouts of diarrhea, and some major stomach pain, it’s going to be yet another challenge.

I feel like almost everything else is under control right now — her breathing, the mycobacterium infection, her strength and mobility — the only thing now is her weight. The good news is that the doctors are being more proactive with her weight loss.

For her diarrhea, they prescribed Lomotil (Atropine), which seems to be helping (Immodium did not work). For her stomach pain, they did a CT scan in her abdomen yesterday to see if it’s gall stone related. The IV morphine really seems to be helping as well. And for her nutrition, they are going to start her on something called TPN (Parenteral nutrition), which is “food” administered through an IV line. The TPN is in addition to her feeding tube and whatever she can eat through her mouth. Of course, as with anything new, there are some added risks with the TPN, like infection, but at this point, I think whatever we can do to increase her weight is necessary.

Now for the good news. A lot has happened over the past 5 days. First off, one of the chest tubes was removed this past weekend…the bigger one. I was hoping that the smaller one would come out too, but I don’t think that’s going to happen for a few more days. Secondly, Anya’s talking again. The respiratory therapist capped her trach with a passy-muir valve, so that she can talk while she’s on the trach collar.

Anya’s also been walking almost daily. The first time that she walked, she did a full lap around the floor, which was roughly 440 feet. The second time, she walked 880 feet. And the third time, she walked 880 feet on the trach collar. Today, she did a full 1,180 feet! The doctors were worried that she wouldn’t be able to walk 100-200 feet, but Anya showed them!

Another bit of good news is that Anya can eat again. Kind of. She did a swallow test two days ago to see how her tracheal flap responds to food and liquids as they enter her throat and she passed! So, the doctors cleared her for a “clear liquid diet”. She had her first taste of real “food” last night. Out of all foods that she could have, she wanted some Miso soup and edamame beans.

In addition to any calories that she consumes through her mouth, the tube feeding is currently giving her 2cal/mL at 60mL/hour, which puts her at 120cal/hour or 2,880 calories per day. Just with that alone, she should be able to gain some weight. If we add the TPN, I’m hoping that we’ll see some weight gain soon.

Other than her weight, I really feel like Anya has made a lot of progress lately. Her unwavering strength is truly inspiring. The next time I think about quitting something or stopping an exercise because it hurts too much, all I have to do is think about Anya and I know that I will get through it.
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Here is the latest update about Anya, if you have not yet seen it. We still need as much support as we can get. Share with your contacts and continue to support her.

http://anyasstory.com/houston-methodist-day-16-17-no-more-setbacks/
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$20,921 of $50,000 goal

Raised by 142 people in 57 months
Created August 28, 2014
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