The Bartlinski Bunch

" Teresa "

" Teresa "

Teresa "Fang Fang " Bartlinski

Teresa was born on December 25, 2006 in China. She was born with a very complex heart condition. In July 2010, GOD added Teresa to our family through adoption. We have been blessed with 9 wonderful children. Gods grace has woven us together as a family. Upon bringing Teresa home from China we unfortunately learned she not only needed a heart transplant but also a lung transplant. Her doctors feel she would not survive this operation. Please help us to pray for a miracle for Teresa's heart and lungs to be healed. She is a very special little soul who has touched so many lives around the world ...

Saturday, March 24, 2012

Transplant Update

Last Friday we started the process to be evaluated for a heart transplant for Teresa. Yes, just a heart transplant, not a heart/lung transplant. To even be considered for a heart transplant is a miracle all by itself. I still can not believe that Dr. Hanna feels she is at this point after being told for almost two years it would NEVER happen.

To say the process was stressful is an understatement. I knew a little about what would be involved but we were not fully prepared for the enormous amount of information that was presented . There is just so much to learn, plan for and consider.

We first met with the transplant coordinator. She discussed the whole process from pre transplant to post transplant. We learned Teresa could be matched with a heart from a donor 80% her size to twice her size. Her wait time to receive a heart depends on her wait list status. 1A status are patients who are the most critical and are in the hospital. 1B status and then 2 status. Teresa would be a 2 status because she is waiting at home . She will be tested for Panel reactive Antibodies. High PRAs lessen the chance of receiving an organ that will not be rejected. Rejection occurs when the body tries to destroy a transplanted organ . Almost all transplants are rejected at some point with the average heart lasting 10-15 years before she would require another transplant.
This is usually a surprise to most parents but 10 years sounds wonderful to me considering what the alternative is right now for Teresa.

Next we met with the Psychologists . I think she wanted to see if we would be mentally stable enough to go through this process . I think we fooled her because she seemed to be very content with all of our answers . (I wouldn't say Ed and I are mentally stable right now considering the past week ) but if she thinks we are, we're going with it. Her last question was "How are we handling all the stress ?". I don't know what answer she was looking for or what is considered the correct answer. I could see Ed was going to answer that question with , "How do you think we are handling the stress? We have 9 kids , 5 special needs daughters, one daughter gets a blood transfusion every 3 weeks another is in heart failure, another is getting ready for surgery, our insurance may drop us in July , I am self employed and losing money because I had to take off today to come up here and answer this ... question ". BUT luckily I intercepted the question first and told her why we had chosen to adopt Teresa and how we rely fully on GOD to help us with the stress . We take one day at a time .

The pharmacist was the next stop. We had a "test" on all of Teresa's current medicines . After she felt comfortable that we were not missing any doses and we would be capable of giving her the new meds. post transplant she allowed us to move on to our next stop.

Blood tests- 14 vials of blood !!!! The phlebotomist was unsure if she would be able to walk after losing so much blood , but she did great . She didn't even cry .

The day ended with us speaking to one of the transplant Cardiologists. He was in the process of reviewing all of Teresa's medical history and was unsure yet what his decision would be. He did say he had never seen a child survive a heart transplant with lungs in the condition Teresa's are. We definitely did not want hear this . But yesterday we met with Dr. Hanna and he is the expert on Pulmonary Hypertension and he feels she would survive the transplant but it would be VERY high risk and she could struggle for a few weeks.

Yesterday we also met with the nutritionist . Her main concern is Teresa's weight . She has plateaued at 29 pounds and needs to gain more weight . She gave us a lot of helpful advice on how to add calories to all of her foods.

After another echo. , 6 minute stress test, EKG and more blood work we were done!

We arrived home last night totally exhausted from the whole process.
We are now trying to figure out (should their answer be "Yes") , how we will juggle everything. (mostly life at home while i am gone with Teresa). Another major concern is if our insurance will cover the transplant and if so how much of it . Since Ed is self employed we purchase our own insurance. For the past five years our insurance premium has doubled every year because of all the girls medical requirements. This past July, after having Teresa on it for one year our insurance once again doubled and stated the increase from "over usage". I can only imagine what it will be this year especially after seeing Heart Transplant Evaluation on the statement this week. The insurance department of the transplant team suggested that most families do fundraising to cover what insurances do not .The estimated U.S. average first year heart transplant fee is -$787,700 . O.K.....just for ONE YEAR !

Trying to wrap my head around all of this information has left me feeling in complete panic. When I think of it all , I just don't know how it will all happen . But then again a year ago we did not think a heart transplant would happen and here we are being evaluated . So obviously God is in complete control and moving things in the direction of His Will.

Should Gods will be a heart transplant - we are praying for peace and to trust that God will work out all of the what ifs...

Should Gods Will not be a transplant - we are praying for the same thing.

Sometimes, if God doesn't give you the Miracle , you will be the Miracle for someone else...


Annie said...

Praying dear Ann!!!

K said...

I am very confused by your medical insurance company's doubling your rate because of "over usage." Who measures over usage? Insurance is for when we need medical care. Period. How can they say over usage when that's just care to keep your children alive?

I'm freaking out about the free market economy of health care in our country. I cannot believe that over usage is a legal reason to increase rates.

I'm sure glad you have faith because if you didn't I can't imagine what this would have done to you.

Please know that I am so angry over this for you! Steam is coming from the top of my head!

I wish you could put Theresa on TV and let them do an expose about your insurance company, which I'm sure isn't the only one to do this. No one seeing her and feeling her sweet spirit would let a company get away with that.

Lynda said...

Continuing to pray for healing, PEACE, wisdom and provision. Look to the "alters"/results of past miracles and know nothing is impossible for God. He hasn't brought you this far to leave you hanging. So glad to see Gemma looking so much better! God continue to keep and bless you all.
The Carr Family

Wanda House said...

Thank you for the update on Teresa. Will continue to pray for you and your family that everything will all into place when it is time for the transplant. God is faithful. I know he will continue to give strength to you and your family as you wait for Him to work in Terasa's life.

Aus said...

Ann - great update - thanks for all the details! As always - you and your family are in our hearts and prayers.

As for the insurance company - I have to agree with K - I don't think they can legally raise your rates...and I think a human interest story is proper at this point. I see that as two and maybe 3 fold - 1) To smack the insurance company back into line, and 2) To pay for your daughters medical expenses - I can see the donations streaming in once folks see Teresa and learn her story. And the probably is 3) It would bring to the attention of the world the crises in the health insurance industry - what they have done is create an industry (health care) that is so expensive that you must have insurance to help pay for it - but in so doing created their very own profit making industry - health care insurance.

OK - that third one is probably a dream - but you never know!

It's easy to get overwhelmed - remember that you can deal with all of it every day - so deal with just one thing today - and then maybe another tomorrow approach!

Regardless - prayers and many hugs - aus and co.

The Jiu Jiu said...

I work in the health care industry, and your insurance company's behavior is disgustingly, obscenely common. It's a for-profit industry, and they're REALLY good at it. That said, sometimes a little good publicity will make them reconsider -- there ARE human beings in there, you just gotta dig to find 'em.

The ordeal of getting through this 1st step in the process sounds... well, like an ordeal! More power to y'all on getting through (and a quick "You tell 'em, brother! to Ed).

Keeping you all in my thoughts... I couldn't hit "chip in" this time but will as soon as I'm able...

Anonymous said...

I just wanted to offer some words of encouragement to you and your family. Our daughter (also adopted from China) had a heart transplant 5 years ago this week! It is tough to manage the meds at first (she came home on 18 oral meds, 3 times per day) and it is a huge life style adjustment BUT the reward is worth it and with time it will just become routine for you to care for her and to enforce the rules that must be in place to keep her safe (like no one comes in the house who is coughing, sneezing, etc.). I had to become the bad guy with family and friends but my daughter is alive and well 5 years after the transplant. If you ever have questions about what life is like after a heart transplant, please feel free to contact me and remember...God's plans are always better than anything we could think of on our own and His timing is perfect!

Mary Wusterbarth