Never Stop, Never Give Up

nc sun rise

I am feeling very motivated to bring more awareness about transplant to the CF community.  It seems like it is something that isn’t really talked about until you are needing it.  And even then we had to learn a lot of lessons the hard way.  I can’t do anything to bring Melanie back but if I could go back there are things that I would do that I didn’t know to do. I am able to take those lessons and help Rosie, but if I can also help others be more informed along their journey I want to do that as well.  I have contacted the Indiana Organ Procurement Organization to begin training with them on speaking about organ donation.  I hope to be able to speak at our local CF center parents night as well as other events to encourage people to be organ donors and to educate patients and families with CF on the process of lung transplant. I am hoping that very soon I will have been through that process with Rosie and will be able to speak fully on the before and after process.

Many years ago we went to St Louis Children’s Hospital to have Melanie evaluated for transplant.  She was almost 15 at the time.  We were told that she was a candidate for transplant but she was too healthy to list.  We were told to come back in 6 months.  When we brought her back in she was actually healthier than she was at the first visit because she did what they told her to do regarding an exercise routine. They told her to come back in another 6 months.  So on our third visit we also took Rosie to be evaluated.  We were told the same thing.  She was a candidate but still too healthy, Come back in another 6 months.  Melanie was getting closer to needing to be listed but they felt she had more time.  Time for the next visit came and we were very shocked to learn that due to an issue we had with the girls pulmonologist they were not going to list either of the girls.

We had been at a non CFF center for about 5 years and one of the doctors was convinced that we were not taking care of the girls at home.  We had care conferences where he told us that he was under the impression that were did not make the girls do their treatments and vest therapy when at home.  They only go it during hospital stays.  It came to the point that we decided to go the CF center at Riley and put the girls under the care of a different physician. On the last hospital stay with the old doctor, he lost his temper with Rosie, yelled at her and drug a chair across the room and told her she had to sit in the chair all day.  All because he had walked into the room just as she was waking up and had just taken off her bipap mask but was not out of bed yet.  The RT was even in the room shutting the bipap machine off.  So I filed and complaint with the hospital.  He retaliated by calling CPS.  They came out and found no evidence of medical neglect and closed the case.  At the time we had already met with or new doctor and had an appointment set for her to see the girls.

The team at St Louis pretty much said we are not going to get in the middle of this situation.  They said they would talk to our new doctor in 6 months and if she felt we were complying with all the medical treatment then they would see the girls again.  At that point Melanie was old enough to be considered by the transplant program at Methodist in Indianapolis.  So we began the process of transplant evaluation with the program at Methodist.  Rosie was doing well and it was decided that she did not need to go to St Louis just yet.

Our experience with Methodist started out very well. Melanie really liked the doctors and transplant team.  She did all the tests for work up, attended pulmonary rehab and met all the requirements they gave her when she was evaluated.  By August 2013 we thought she was ready to be listed.  Then we were reminded that her weight was not where they wanted her to be.  This started a whole slew of “new” requirements.  They continued to move to goal post for her multiple times.  Sometimes on a weekly basis.  One concern they had was that she didn’t brush her hair when she came to a clinic appointment.  She had brushed her hair but as is the style with younger kids these days she had it pulled up in a messy bun.  Then in December during a hospital stay they decided that even though she was a 90 lbs they really wanted her at 96lbs.  She started at 87lbs. The next week they decided that Melanie could not live at home after transplant for at least the first year.  We made arrangements for her to live with my parents after she was transplanted.  Then they decided that she needed to live with my parents before transplant.  She was discharged on Dec 24 and we moved her to my parents house on December 28th. They told us that if she was living at my parents house and was going to pulmonary rehab everyday they would list her even though her weight was not 96lbs.  So after a little over a week we went back for an appointment expecting to be listed.  It was then that we were told that she needed to get a chicken pox vaccine and could not be listed for 30 days. Later that week she went into the ER with pneumonia and died 4 days later.

We should have taken her to another center in August when they told us she needed to gain weight.  We should have had a back up plan.  When they continued to “move the goal post” we should have taken her to another center.  It was the end of December when I started making calls to other centers.  Melanie had an appointment with Loyola in Chicago in Jan 24, 10 days after she died.  We had waited too long.

People ask us now if they put her on ECMO to keep her oxygen levels in her blood stable so that the acid would not build up and attack her heart the way it did.  They didn’t and it was never offered and we didn’t know enough to ask about it.  We were told that she had a 20% chance of surviving a transplant and that was not good odds and it would be a waste of the donor lungs.  For me 20% was at least something.  If they didn’t try she had 0% chance.  What if they tried and she did survive?  We will never know.  Each center has the freedom to make their own choices on the risk they are willing to take.  They have to keep their statistics for survival at 1 year at 85% or risk being investigated and ultimately shut down. Melanie’s life was not worth the risk to the team at Methodist.  But it might have been at another center.  We didn’t have the chance to find out.  We waited too long to get a second opinion.

We are not making that same mistake with Rosie. When we saw the first red flag with Rosie at St Louis I started the process with Philadelphia.  I’m glad I did.  This Monday we went to St Louis and we were told that even though Rosie is in the transplant window (not too sick, not to healthy) they are not going to list her at this time.  They have several patients who have the same blood type and size as Rosie and have a higher LAS score (they are sicker than Rosie is).  So we are not wasting time waiting for St Louis to list her. We are going to Philadelphia. Philadelphia has told us that if she needs to be listed they will list her no matter how many people are on the list at their center. And if Philly doesn’t work we will go to Pittsburgh or Orlando or Stanford or Houston.  If she is not listed she has zero chances for a transplant.  But even if there are 5 people ahead of her on the list she still has a chance at transplant.  Some is better then none.

This is what I want patients and families to know.  You have options.  Don’t give up, don’t wait, have a back plan and a back up for your back up.  This is a matter of life and death.  Fight until the very end.

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