Friday, February 22, 2008

The Transplant Process

For CF, lung transplantation is simply another treatment...it is NOT a cure. Lung Transplantation is basically the last resort for CFers, and it's only an option when all other forms of treatment have been exhausted AND a transplant will probably improve the quality and quantity of life. Transplantation is ALWAYS the choice of the patient.

Although I've discussed most of this before, here's a more detailed overview of the transplant process. In my mind, there are basically seven steps (although that may differ between transplant centers)

Pre-Transplant:

1) Evaluation - the patient and medical staff have determined that the patient may be in need of a transplant in the near future. There are many transplant centers in the US, and finding one that accepts a patient's insurance and will accept a patient as a candidate can be tricky for some. Fortunately, we did not have any issues with this step. Each center has a different evaluation process. Duke requires a week-long series of tests and interviews.

2) Candidacy - the transplant center has identified the patient as a candidate for transplantation. A patient may be a candidate for a period of time without being listed depending on his/her health. Most transplant centers (like Duke) require candidates to complete a certain number of days of physical therapy and prove that they are physically capable of having a good chance at survival before they are listed. Candidates are encouraged to relocate to within two hours of the transplant center.

3) Listing - the patient's health is to the point where he/she either needs a transplant or will soon need a transplant. Most patients are placed on the transplant list and "activated" (see next step) around the same time, but some are listed and not activated for months or even years depending on the progression of their disease (many CF patients tend to plateau at certain points, and can be listed but not activated).

4) Activation - the patient has entered the window of opportunity in which he/she is sick enough to fall under the criteria at the top of this post, and not so sick that he/she would not likely survive the surgery and first year after. The wait for the right set of lungs begins, which could be the same day as the activation, or it could be months or years (many transplant patients die before receiving their new organs). Deactivation (while remaining on the list) can take place if the patient becomes too sick or weak to still be considered a candidate for the surgery. Some patients bounce back and forth between activation and deactivation. Once activated, patients are required to relocate to within two hours of the transplant center.

Transplantation:

5) Surgery
- when the transplant center is notified by UNOS that a set of lungs had become available, a call is made to the two patients who most closely match the available lungs. Both patients are prepped for surgery while the transplant team evaluates the lungs and determines if they can be used. If they are good lungs, the patient who is the best match goes into surgery. Surgery at Duke usually lasts between 6 and 10 hours. I prefer not posting the details of the surgery because it's very intense (feel free to look it up on your own). We've been told that it's equivalent to a severe, blunt-force-trauma auto accident.

Post-Transplant:

6) Recovery
- (the following is true for best case scenario) patients come out of surgery on a ventilator, are brought out of sedation over a 24 hour period, are up and walking the day after the surgery, spend less than a week in the ICU before moving to a "step-down" unit, are out of the hospital within 2-4 weeks, and are required to complete a certain number of days of PT before being totally released to return home. PT actually begins as soon as the patient is awake. Lots of complications can arise...most of them are very life threatening.

7) Life - (we're still learning about this part of the process) patients are sent home with a whole new set of meds, new equipment and a new way of living. Lots of steroids and immunosuppressant drugs. Avoidance of germs, sick people, and crowded places. A new, clean (and easy to clean) house. It's basically a trade-off of one way of living and drugs and treatments for another. (But, we're not complaining!)

I suppose there is a 8th step...death. CF is a death sentence...there currently is no cure. Lung transplantation is simply an attempt to prolong and improve life. Many CFers do not make it beyond 3-4 years with new lungs, and most CFers do not make it past 8 years. A second transplant is sometimes an option, but it's a difficult option. Infection and/or rejection are the two leading causes of death for a transplant recipient.

Anyway, I hope that gives some helpful info. As always, use the "Transplant" label over there on the right side of your screen to see what else I've written concerning organ transplantation, or visit UNOS.org.

Thanks!

Nate

25 comments:

Anonymous said...

I will pray for Tricias wait to be short. Congrats on being listed & activated.
-Bobbi

Anonymous said...

Very interesting---thanks for the run-down. I have e-mailed you briefly in the past, but did not mention that our pastor is now about 15 years past double lung transplant (primary pulmonary hypertension, I think it's called). He has some limitations, of course, but is another amazing story----continuing to pray for your family!
Lori in VA

Kerrie said...

I have been reading this blog since the beginning of the new year, and have found myself feeling more and more educated each day. You do a great job putting information in simple terms that people understand. Not only have I learned more about CF, but I have learned about the impact it has on a whole family of people. I will continue to keep your family and that of Tricia's donor in my thoughts as things move forward.

Thanks very much

Steph said...

Still in my thoughts and prayers. You are all an inspiration to me and many others. God Bless.

Stephanie/stl mo

JoythruHisGrace said...

Thank you for helping us to better understand the transplant process. As others have noted, this has all been very educational. I never realized how little I knew about CF and organ transplants. We continue to pray for you all, the hospital staff, everyone affected by your journey, and the potential donor and their family. Thank you for keeping us so informed. Love you so much!
God's love and peace,
Amy and Casey

Anonymous said...

Nate, Been following your post & praying for you and your girls since before the birth. My father had a heart transplant 11 years ago following about that many years of severe cardiomyopathy.(before he was struck down ran 10 miles a day and an athletic coach) He was in his 50's and in very poor health when the blessing of his transplant came. It sounds so scary the statistics for surgery & survival..& he had a kidney transplant last year b/c of the antirejection drugs, but he's living and living a healthy full life past the statistics for his survival....as you've said before, each case is unique. Tricia is young and a fighter......that comes through in your blogs & her beautiful photos. Her energy shines through. you guys are constantly in our thoughts and prayers.....FFMS heard she was put on the list today & there are a lot of young people who are praying.....your uncle Andy's blog was right on today! one of my father's favorite sayings to us when we were younger and felt discouraged was "don't let the turkeys keep you from flying w/the eagles"........

MCK Mama said...

Well, that was a very, very well-written informative post. Thanks for breaking it down for all of us. God bless you as you wait and trust His timing. All three of you are inspirational! How wonderful that you keep this blog and can let God influence so many through it...

Joanne said...

Thank you for the informative post and we will continue to pray.

My mother used to work for a hospital and one of the staff ER physicians had CF and received a lung transplant-- he was doing so well that he continued to work as a physician. It's amazing the miracles that God can do.

We will continue to pray for physical, emotional, and spiritual strength for all of you

Joanne said...

Thank you for the informative post and we will continue to pray.

My mother used to work for a hospital and one of the staff ER physicians had CF and received a lung transplant-- he was doing so well that he continued to work as a physician. It's amazing the miracles that God can do. Each case is unique but take heart that statistics are just that and are no match for God and for Tricia!

We will continue to pray for physical, emotional, and spiritual strength for all of you

The Adoption Of William said...

Whew...that is quite the process. Praying for Tricia. My daughter just had her esophogua replaced and I thought that was a lot....nothing compared to what Tricia has to go through. I pray you share MANY years together with your beautiful little girl.

With love and hope,

Jen-William's Mom

Anonymous said...

Thanks for the update Nate and for explaining the process. I will be praying for Tricia and your family.

Lisa in NC/C3

Anonymous said...

Thank you so much. You have done such a wonderful job of giving us all this transplant information. There will be a time very soon that my husband will need a liver transplant and so even though Tricia's is a much more serious transplant this has given me a glimpse of what life is like during the waiting game. And I appreciate the explanation on how to pray for the donor and his/her family. Thank you so much.

Anonymous said...

thanks for the info. where do you sign up to be a donor? (dmv?)

Blogfreys said...

Thanks for the summary... I know there is more to be tackled in medicine--but it truly amazes me that this is possible!

Sara said...

cheers mate for that overview! thinking of you all from london, england

Emmie said...

Hi Nate, well done on getting all that explained so clearly - I'd have probably written pages of waffle trying to get the same points across!

Just one thing - you mention that in the best case scenario patients are weaned off sedation over 24 hours, are walking the following day and are moved off ICU in a week.

Please don't be suprised if this doesn't happen for Tricia as I've only known one friend recover so fast out of the ones who have had double lung transplants.

One of my friends last year spent 11 weeks in hospital (7 in ICU) after her transplant going through every complication possible (and at one stage things looked really bleak), yet a year on she is so full of life I can scarecely believe it. She has got married, is working full-time and is just full of energy!

Another friend spent 7 weeks in hospital trying to be weaned off the ventilator. Again she is now glowing with health and vitality and full of life. Both of them were very weak and ill before their transplants, which makes the recovery harder.

Not sure if this comment was any help, I'm sure you are well aware of it all anyway having been through this process for so long.

Love to you both xxxxxx

Anonymous said...

Ok. I have managed to well up but the tears hadn't spilled...until I read this post. Wow. I guess I naivly thought once she had a transplant, you could all relax! NOT. Thank you for such a clear writing on the steps. Wow.

Kim said...

Thank you for this information-I was not aware of all that's involved! Praying for Tricia!
Kim

Jenna said...

I have been reading your blog since before the birth of your beautiful baby girl. Your story has truly captivated me and I must say that I think I've become addicted! The idea of an organ transplant hits very close to home for me as my grandfather had a kidney transplant several years ago. I am praying that Tricia will receive her new lungs quickly and that the surgery and recovery will be as smooth as possible. As we both know, it can be a very scary and stressful process, but God is watching over your beautiful family.

With your permission, I would like post a link to your blog on my family's blog...www.mjmanges.com

Congratulations to Tricia on be listed and activated.
-Jenna in Texas

Auntie Em said...

I was very excited to see that Tricia has begun the process. As the two of you must be also. I will continue my prayers that everything will continue to move along.
I love the pictures your beautiful girls. I also had a preemie. He was born at 27.1wks in 1999. To watch them grow outside is awesome. He is a healthy 8 yr. old with ALOT of energy.

In our prayers,
Em...from Massachusetts

Anonymous said...

Sorry that this says Auntie Em. Trying to change it back to Em. Having a heck of a tim changing it.

Anonymous said...

I haven't posted before because you have so many already, but did want to say I'm one of the many who are following your incredible story. My husband's sister and brother both died of CF, so I have a little familiarity with it. His sister died at age 19 before I knew her and his brother at age 35. These were 20 & 30+ years ago, so there has been so much progress in understanding the disease since then. Lung transplants weren't even a possibility back then, but at the same time, when they were diagnosed in the 1950's, their parents were told they wouldn't live past age 10, so even for them, it was a gift. Your information here on the process is valuable for all to know. Your blog is bringing a personal picture to what many more families go through than most realize. I will continue to pray for you and your family. You have such a wonderful gift there in your girls; I hope it last for many more years.

Tamara M. said...

Hi

What a great explanation!! Really!

I wanted to ask you if I may use it on my site too, as explanation voor Transplant. Of course in Dutch translated en maybe a bit changed, because not everything is the same here. But I would really like to use this! It's great!

greetings Tamara

Homefront Six said...

With regard to CF...it may be a "death sentence" but, in actuality, so is life. And even though most transplant patients do not live more than a decade beyond their transplant doesn't mean we can't pray that Tricia beats the odds and lives 20 more years. Or more. What a miracle that would be!


I don't post often but I read all the time. Please know that our prayers are with you. Thank you for sharing this part of your life with us!

Anonymous said...

Just how many comments will you delete?