Transplant or Not to Transplant?

[Krazy4Katie]

My daughter is 18, and been told its time to meet the transplant team. Prior to 2/15/15; her FEV1 were stable at 43%, on continous IV Imipenum for M Abscessus, and a daily cocktail of antibiotics for her NTM (m abscessus), room air during the day, and 1 liter of 02 at night.

She caught the flu on 2/15/15, got herself in the ICU and placed on ventilator for 8 days, only to be discharged home for 1 day, and return the next to be readmitted for massive hempotysis (requiring surgical emobilization to stop the bleeds). Her FEV1 is now at 29%, on daily 02 at 1.5 to 2 liters and on bipap at 30% at night.

She's having a difficult time adjusting to her new baseline (as she was told she won't get back to where she was prior to the flu). She went to college F/T, and worked P/T.

She hasn't decided whether or not to pursue the transplant process. We have told her we will support her decision no matter what she chooses. However, the waiting is driving me crazy as I don't know which way we are headed. We are scheduled to see the transplant team the end of this month.

We go to Hopkins and there's a good chance she will get rejected due to her m abscessus, and therefore we would have to relocate. That idea in itself is terrifying as I'm a single mom of two girls, (18 & 10 year old), but have support from her dad and stepmom.

My younger daughter is having alot of anxiety well wondering what her sister will decide.

I don't know what else to do, except wait it out and see what she decides.

 

[imported_Momto2]

Krazy4Katie, I'm not sure exactly what you are asking. Our opinion if we were in your daughters shoes? I would definitely go for the transplant. I'm currently where your daughter was prior to 2/15/15; 44% FEV1, O2 during the night, so I've been wrestling with this question, knowing I could be one bad infection away from the list. I'm so sorry you're in this position, I can't imagine the agony (I have 2 daughters as well, 13 and 9). I think all you can do is what you ARE doing. Giving your adult child space to make a choice she feels comfortable with. If she wants to have a chance at going back to college, there is really only one answer here, and that's transplant, but its not our choice. I would highly suggest family counciling, since this is a huge upheaval and stress in life. It will give both your daughters a voice, and hopefully a safe environment for everyone to be heard. It's also a good place to understand her choice and come to grips with it, no matter what she chooses. Peace and love for all of you.

 

[ethan508]

I too am sorry you are facing such a hard challenge. This is very tough. The consequence of this choice are shared by all three of you (Mom, CF-er, and little sister). From a patient side, I want my loved one to know that I understand that my treatment choices affects how they experience their life with me, but the treament is actually affecting me. So somehow you need to be able to discuss this in a way that you each felt heard, with understanding that every party might not get the exact outcome they want. Therapy to help gain some skills in having and coping with these discussion and the overall situation does seem like a good idea for all three of you.

I am so sorry that you are facing this. Please share with us any of your frustrations or challenges or triumphs as you need to.

 

[static]

I agree with the above posters.Having a transplant is a very scary decision, then to add on the impact on the family and I can see how it can be so overwhelming.

For your eldest daughter, I'd focus on the positive aspects of transplantation and maybe share some success stories. Ultimately it will be between her and the transplant team, but it may help to know she could do very well post tx

As for the rest of the family without knowing the family dynamic I can't really comment without making asumption, so I'll go back to the above posters in support of family counseling (If possible, with the inclusion of her dad and step mom as well).

Wishing you all the best during this difficult time.

 

[Aboveallislove]

I am so very sorry for all you all are going through. The above posters gave excellent advise. Just wanted to let you know of my prayers for your family and also to pass this on on case it is an option for your precious daughter.https://clinicaltrials.gov/ct2/show/NCT02390219?term=Vertex+cystic+fibrosis&rank=26

 

[Melissa75]

Krazy4Katie, I want to add my hugs, thoughts and prayers for you and your family. I'm so sorry you are going through this and so upset for you and your daughters that such a shift in health happened so quickly. Does your daughter spend time on this site? She might read the Transplant section or PM some of the people here who've been through a transplant to ask questions. My heart goes out to you.