Transplant Appointment

Jane took this photo of Nicole during a recent dcotor's appointment.

Jane took this photo of Nicole during a recent doctor’s appointment.

On November 20, 2012 we had our first transplant appointment after both Nicole’s cardiologist and her PH specialist believes the time for this has come. It was also agreed upon that she would go to the center that is local as opposed to the one 2 1/2 hours one way from our house.

In December she had a CCTA and TEE to get some pictures of her heart. The question is can she just have a double lung transplant or does she need a lung/heart transplant. Nicole has a large 2 1/2 cm size VSD (which is a hole between the right and left ventricle of the heart) as well as two or three other smaller VSD’s. She also has a PFO which is like an ASD (artial septal defect which is in the top part of the heart) but instead of a hole it is a flap. She also has Eisenmengers Syndrome which is reverse shunting of the heart. On Jan. 2nd, 2013 she had a right heart catheterization to round out the cocktail of tests.

Last week we had our first appointment back to the center since these tests. The lung director came in and told Nicole and I based on the tests they performed they believe she needs a heart/lung transplant. Let me tell you, this was like a kick in the gut… it was like the day of her diagnosis three years ago except for I didn’t lose my breath. We have always known that she would need a lung transplant but as the cardiologist said it would be “years down the road” . I didn’t realized that was only a mere three years after diagnosis in Jan. 2010. I tried so hard to keep my composure because I have to be strong for Nicole but I failed and some tears leaked out. The nurse caught on to this and got me some tissues. I think the doctor could tell too. Nicole was sitting in the middle of the room in her wheelchair and I was in the back so she had her back to me.

The doctor went on to explain that the reasoning for this is that while her heart is repairable it would take too much time to do this and they are under a time frame as the lungs have to be in the body within six to seven hours. I record all of Nicole’s appointments but haven’t been able to listen to this one yet. It was my understanding that Nicole’s PH specialist, her cardiologist, the two doctor’s at the transplant center and a pediatric heart surgeon (who we haven’t met) were going to get together and discuss the options. I was under the impression that this had happened. According to the cardiology nurse the meeting that was originally scheduled one of the doctor’s at the center had a transplant and only the other transplant doctor and the PH specialist showed up for the meeting. It was never rescheduled. It’s my understanding that the cardiologist doesn’t agree with this recommendation and believes that the heart can be repaired and she would only need lungs. They have even tossed out that I should go for a second opinion in Gainesville or Miami.

I don’t know what to believe. We also saw the social worker at this appointment. Nicole was diagnosed with generalized anxiety disorder (GAD) and obsessive complusive disorder (OCD) in 2005 and takes Zoloft for this. She sees a psychiatrist and a counselor/therapist. The social worker said that all the things that would be a concern for them we are already taking care of since she doesn’t have any drug, alcohol or cigarettes addictions. The doctor asked for the name of her counselor which I gave to him. He also said that he would like Nicole to start talking about her feelings toward transplant with her and also he wanted her to do research about it.

They are also going to get a mentor for her which is somebody who has had a lung or a lung/heart transplant. He also wants a conference with Rick and I and the social worker and it is my understanding that this would be without Nicole present which would allow me to ask questions that I wouldn’t ask in front of Nicole. She also needs to get another 6MW, a diagnostic test used to measure how well a medicine is working. It is basically what its name implies–a six-minute walk. She walks for six minutes at her own pace and they will log in the distance to see if she can walk farther than the last time she had one. I’m not sure if she will be able to get this done at rehab or we will have to go back to the transplant center. She also needs more bloodwork which we will go to the hospital for on Thursday. I don’t remember what the bloodwork is for though. I think and hope they will check her potassium as this is like a yo-yo going up and down.

I got a call that evening from Nicole’s counselor asking if I would give her verbal permission to talk with the doctor as he had already called her. I did give this and I can because I have power of attorney for Nicole and have since the day she turned 18. She sees her counselor the first full week of March so hopefully she will let us know what the doctor wants her to do.

This has been very emotional for both Rick and I as well as the rest of the family. I know it has for Nicole also but she usually has delayed reactions to trauma or stress. It will manifest itself in some way.

I have looked at some statistics for heart/lung transplants and in 2011 the estimated number of heart/lung transplants in the US was 30. The cost of the procedure was $1,248, 400. This is the lowest number of all the transplants listed. According to a 2010 study that assessed the long-term outcomes of people who have had a heart-lung transplant they found that:

70% will survive for one year
50% will survive for two years
39% will survive for five years

I’m not impressed with these statistics. I had a hard time coming to terms with a 50% 5 year survival rate for a double lung. I guess the biggest question for me is does the benefits out weigh the risks and I can’t say that I truly believe this.

One of my concerns is that Nicole believes that she will be “normal” if she gets a transplant and I don’t know if this is realistic. I heard Helene Campbell say on the Ellen show after her double lung transplant this it wasn’t a cure but a treatment and this is very true. Nicole will not have the illnesses anymore, nor will she have to be in a wheelchair because she can’t walk long distances or be on oxygen 24/7 but there is a lot of other things that she will have to do for life. The first two years after transplant is filled with a lot of tests, bloodwork, clinic visits, rehab etc. but her quality of life will be better so they tell me.

I wrote up to this point on my blog this morning. It automatically goes to my facebook page. I am going to say things here that I wouldn’t want seen on facebook or my blog as while I know this site is public I know that Nicole and/or Rick would likely never come here. One of the biggest fears that I have regarding the heart/lung transplant, other than the grim statistics, is the very real fact that she could die. I can look at her now with her illness and even though it is terminal and it is progressive and the drugs she takes will only slow down the progression, without making the disease better it seems I can deal with this better. A transplant is like a kick in the face which a major, major, surgery that could surely cause her death. I can barely handle walking into the recovery room and seeing Nicole coming out of sedation after a cath. or sitting in the waiting room for this two-hour procedure. I don’t think I can handle seeing her hooked to a ventilator or having all sorts of tubes and machines attached. I can’t believe that I wrote the whole blog up to this point without breaking down into tears and now they are flowing like water. How do I as a parent watch my child go through this?

I had joined a heart/lung transplant page/group on facebook a while back. I really didn’t go in there at all but yesterday I went and asked what type of fundraising did they do to cover transplant expenses as Nicole has Medicaid and it is my understanding that they will cover 80% which leaves us to come up with the rest. I also posted a short little snippet about Nicole being diagnosed at 15 and now we find out she needs heart/lung transplant.

I got a response from this lady who has had a heart transplant (I’m not sure why she needed one) who works with a transplant organization who supplies mentors to other in the transplant process. She friended me on facebook as well as sent me a private message to get my address to send me a packet of information. She is also suppose to hook me up with a caregiver who has gone through the transplant process.

She said something that totally blew me away which was “I’m now a professional patient advocate, specializing in transplants.” I didn’t know there was such a thing but it is really something I should be as well as a lot of other patients/caregivers. My question to her will be how did she become this.

There was also another lady in her 30’s who had the exact same diagnosis as Nicole and she had a heart/lung transplant eight years ago and has even had a child since then. She gave me her blog which I will read in depth in my free time. She gives me a lot of hope as well as another lady who had a heart/lung transplant–I believe it was 16 years ago.

As much as I love hearing these wonderful stories I know they don’t all end happily. I guess this is really where my faith and trust in God will come in even though I don’t feel like this most days because it is such a struggle most days with hardships always coming at me whether it is related to Nicole’s health or other areas of life. It seems like I have more hardships than blessings but I know this is because of my self-pity and woe is me.

I am truly blessed and need to remember this.

Avatar of Jane

About Jane

My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe.I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

11 thoughts on “Transplant Appointment

  1. Avatar of @gail

    Dear Sweet Jane,
    This post had me in tears, sweet virtual friend! You were the first in caregiving.com who welcomed me into newcomers chat on Mondays. How can you give so much after getting so little?
    Dear Jane, have you ever thought about talking to Nicole about the “future?” Albeit that maybe life after death? What are her thoughts about it?
    I don’t use facebook – so I know I’m behind here? But I care about you and Rick and Nicole, Jane! I hope you know that!
    Please know that I am praying for you and hope you continue to use caregiving.com in anyway possible and me too as an aid in this difficult journey you and your family are on! {{HUGS}}

    Reply
  2. Trish

    Jane, What a heart-wrenching decision. Let the tears flow here – we have your back, Jane. You are doing everything you possibly can (meeting with the doctors, joining the FB support group, connecting with others who have had this transplant). It is an awful, terrible, unfair situation you are in but you are moving forward anyway. It’s frustrating to not be able to see the whole picture or the end result and to have to just move one step at a time to get to the end result but you’re doing it. You have us right there with you holding you up when you cannot (and, of course, you have your faith as well).

    Thank you for sharing what must have been a very difficult post to write. As far as a patient advocate, if you ever need a reference, I’ll be happy to give you one because I think you are a kick-a** advocate. :-) Hugs & love, Jane!!

    Reply
  3. Avatar of DeniseDenise

    Hi Jane–I’m so sorry, Jane. It’s an awful to be a parent and yet wonder how to best protect your child.

    I think it’s awesome you’ve reached out for support. And, I think it’s awesome you know you want to be that kind of support for others. That’s kinda making me cry right now, actually.

    Okay! One step at a time. What’s the next step in the process?

    And, what would you like from us?

    Reply
  4. Avatar of KathyKathy

    Jane,

    I wish I knew what words to use to bring you comfort and support as you walk on this shaky ground.
    The best I seem to be able to offer is my continuing prayers for your peace and strength of mind as you all face this together.
    I’m glad you feel like your in a safe place to share your raw feelings with us. We love and appreciate you Jane. I hope you feel that.

    I found a video this morning I will share on my FB for you.

    I don’t know what it takes to be a professional advocate by I can’t think of many that have had the experience that you do and the amazing job you do as one. I pretty much think you are one! I think what I love the most about that is you still have a hope for the future. Hang on to that Jane. God knows the plans He has for you, plans to give you hope and a future.

    {{{BIG HUGS}}}

    Reply
  5. Avatar of ejourneysejourneys

    Jane, it’s taking me a long time to write this comment because I am awed by so much. By your strength in fighting for Nicole, past so many obstacles. By your outreach to help others even as you yourself feel beaten down. By your slogging through, one terrible step at a time, and persevering when the world seems to close in. I’m thankful that you can write here what you need to write.

    I’m a two-hour drive from you. If you need another hug, another hand to hold, anything, please call me. I’ll email you my number.

    And I would be honored to be a reference for your becoming a patient advocate. (((Big Hugs)))

    Reply
  6. Avatar of The Unit Known as ShandiThe Unit Known as Shandi

    Jane,
    I thought about you and your family this morning as I was making coffee, and wondered how things were going for you. As so many others have said, I so admire you and Nicole and the strength you have both shown. I am so sorry that your family is having to go through this, and make such huge decisions. I’m sending all of you a hug across the country, and I’ll keep you in prayer.

    Reply
  7. Avatar of JoJo

    Jane,

    Praying and hoping the best for Nicole and all of you. Cry here all you need and want.

    You’re not just “watching your child go through this…”, you’re doing everything humanly possible to aide your child.

    I know first hand that it is incredibly difficult to make life and death decisions regarding a loved one; it is unimaginably painful to feel helpless in situations where you feel like you should be able to make more of a difference.

    I won’t pretend to know what you’re going through, but you have my empathy and support.

    Reply
  8. Avatar of ChrisChris

    Jane,

    While I know our Caregiving journey’s are different, I was taken back when I read your post (in a number of ways) when you mentioned the statistics in regards to Nicole’s condition. When the TLO was diagnosed with cancer in 2011, I looked at all the stats and listen carefully to all the experts in the field in regards to his ‘condition and what to ‘expect.’ None of their predictions or expectations came true.
    What I learned in the process is that statistics do not account for the individual who is faced with this ‘crisis’ nor do the statistics account for the drive of the individual along with the love and support that comes from family, friends and the extended family here on Caregiving.com.

    Sometimes in the transmission of written words our message is lost in the translation, but please know from me and the TLO that no matter how hard this diagnosis might be; your love, care and support of Nicole (and her’s for you) will be paramount as you go through this.

    When the TLO went through is radiation and chemo, while we both knew it was serious, he was ‘hoping’ to be normal’ after the treatments. That was one of the main reasons why I withheld the original diagnosis of 3/4 months to live from him because, I did not want him to feel defeated before the recovery even had a chance to start.

    Obviously a transplant is a serious matter and we are here to support you 100%. I gain my comfort in the process when I decided not to look at the statistics and just let fate play itself out. Because in the end, fate is really the only thing that we have no control over, and that is where we find the hand of God.

    We are just down the road in Ft. Lauderdale if you need us.
    XOXO
    Chris and ‘TLO’

    Reply
  9. Avatar of G-JG-J

    Jane,

    There is little I can say that hasn’t already been said, but I want to add my support. You are one of the most amazing women I know! Like others, I am in awe of your strength.

    You are an incredible advocate for Nicole, and no matter how hard it is, you do it and you do a phenomenal job.

    I was thinking, and talking about you and Nicole on Thursday. My friend and I spent a couple of hours baking at the local Ronald McDonald House. During our time there we saw one mom with her child and many other parents. You were definitely on my mind.

    Jane, you have always struck me as someone who wants to hear the truth of a situation so that you know everything you can before making a decision. I think it’s important that you talk with others who have been through a heart-lung transplant so you can hear what it’s really like. This may be good for Nicole as well so she can learn what “normal” will be. I know you are also concerned about whether or not this is something that should be done. The statistics are scary. Maybe you could talk to other families who have been through this and ask if it is worth it and what they would recommend it, knowing what they know now.

    Jane, you know how to reach me. Please don’t ever hesitate.

    Reply
  10. Avatar of PegiPegi

    You absolutley take my breath away. What a weight on a Mother’s heart and soul. Not much I can add that hasn’t already been said. Have your cry, it’s well deserved; share with us. We are all here for you. Wish there was more I could do or say. You, my friend, are a true hero. You’ll know what’s best for Nicole when the time comes. Your focus and logic throughout this ordeal shines brightly through.

    Reply

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