Thursday, November 18, 2010

Transplant Possibility

Tiffany is now without a port.  Everything went well with taking the port out this afternoon and now Tiffany is having a blood transfusion because her red blood cells were low. We are hoping now for a  quiet couple of days with extra sleep.  Below is a letter that we sent out to some family and friends a couple weeks ago and that we were going to post earlier before all this excitement. Here it is finally.

Dear Family and Friends

It has now been around six weeks since Tiffany got out of the hospital. It has been so nice to be at home and to be enjoying the new hardwood floors that many gave to and many gave of their time to install. It really has been a blessing while eliminating many of the asthma issues. We serve a great God who continues to supply our needs.  Thank you for all of your prayer support these last couple of months.
This last year has been a pretty difficult one for Tiffany with constant infections and not being able to stay off of I.V.'s for much more than a month at a time. This last hospital stay in August and September was a harder one because of the length and because of how low her lung functions reached.  While in the hospital we were able to have a number of good conversations with her Dr. and some since with the CF nurse. The Dr. encouraged us to start thinking about a double lung transplant.  With the frequency of infection and the duration of healing, we have reached that point. The last six weeks of being home has been a time of much prayer and research as we look at all of the issues with lung transplants.   

I know that we have many questions -- some we have found answers to and some we continue to learn about but the following are just some questions and answers that may better help you understand and pray.

How do you know when it is time to look at transplants? Basically when the infections become much more frequent and the duration of recovery continues to increase combined with a decreased lung function to below 50% -- kinda sounds like the last year. When the lungs have a hard time doing their job.

What are the survival rates of transplants -- 80% make it through the first year and 50% are living five years later

Will Tiffany still have CF? Yes, but she will not have lungs with CF so the treatment is much different.  She would still have the digestive, sinus, and diabetes issues because CF is genetic and affects more than just the lungs.  In fact, we would really have to stay on top of the sinus issues as that can be a source of infection with the new lungs. Because the lungs don't have CF, all the breathing treatments, poundings, and such would no longer be needed -- I essentially lose my excuse to beat my wife. :)  The reality is that she is exchanging one set of problems for another because once she has the transplant she will be on medicine that suppresses her immune system to keep her body from rejecting the new lungs.  

What is the process of getting a transplant? The first step is our research and making sure this is a direction we want to go. We have done quite a bit of research and spent much time in prayer and believe this the right course of action for Tiffany. Secondly, you have to choose a transplant center.  We have decided on UCLA in Southern California to start the process.  We have an appointment with them Nov. 15-17 when we will run tests and have many meetings. They give you a LAS (lung allocation score) that determines how high of a priority you are for receiving a transplant.  It considers many factors from the tests, to support, to long-term viability and other such issues.  The higher the number the greater the likelihood of receiving lungs. After they do all that testing, we will then find out if Tiffany will be accepted into their program and if she will be listed now or need to wait. If listed, you then wait for the phone call, and when they call, you drop everything and go. If she is not accepted into the program at UCLA then we will look at other centers.

What is the recovery time? This is largely dependent on how your body reacts to the new lungs-usually about 3 months that they want you to stay near the transplant center.

What will happen if Tiffany doesn’t get a lung transplant? The reality is that her lungs are getting worse and that the infections are taking more and more out of her. The end result is that she would eventually get an infection that her body cannot fight off. No one can say how long her lungs would last but once your body is weakened it is very easy for it to drop quickly. The Dr. has not given any type of time factor of how long she could live without a transplant as you just don’t know what infections may come.  The reason we are looking at transplants though is the reality that that time is approaching. Hard to work through but yet a reality.

So what is the next step? The next step is establishing a relationship with a center and starting the process of evaluation and getting listed.  We are wanting to be connected to a center right away.  They may say that she is still not ready for a transplant but it is much better to have an existing relationship with a center that is watching her as she could take a down turn any time. We are scheduled to meet with UCLA Nov. 15-17. If she is accepted and listed, then we simply wait for the call. 

How long will she be on the waiting list? There is no definitive answer on that. The factors included would be her LAS, blood type, body size comparison, lungs being available, and many other factors. It could happen very quickly or it could take a couple years. We have many questions to ask in this area at the appointment.

I write you all of this so that you can come along side of us and pray.  There is still much to learn and we are confident that God is in control.  Here are some specific ways to pray.

  1. Pray that God gives us the emotional and spiritual strength to make wise decisions.
  2. God can use this in the lives of others. 
  3. Tiffany be accepted into the UCLA transplant program.
  4. The appointment would go well and we would be able to learn more
  5. God would accomplish His will in our lives.
  6. God will be in and through all of the big and little details.
  7. Be able to maintain Tiffany’s health that will allow all of the traveling and the transplant
Thank you for your continued love and support. 

Resting in His grace,
David and Tiffany Brock

update: Tiffany was not able to make the UCLA appointment although we are working at rescheduling it.

1 Response to Transplant Possibility

November 30, 2010 at 7:09 AM

We had not heard Tiffany was considering a transplant...that would be awesome! Sara had 10 GREAT years after hers and even then it was more the transplant meds that were her undoing (as those have greatly improved) and Luke is out 6 years now and doing very well! Praying for your peace in this possibility.