Transplant Evaluation

Yesterday was Nicole’s initial transplant evaluation. On Monday, it seemed my emotions were all over the place. I was nervous, scared, tense etc. I have known since Jan. 22, 2010 that she would need a transplant but when the doctor said years down the road I didn’t think it would be three. While most days Nicole seems to do quite well we/she still has a life of medicine, doctors, side effects, oxygen, fatigue and shortness of breath. I know that with the transplant she will have a much better life but it will still be filled with medicine, doctor’s, and possibly side effects but no oxygen.

I tried not to go into this appointment without any expectations. We got to the clinic at the time we were suppose to 12:15 p.m. for a 12:30 p.m. appointment. Nicole had rehab prior to this and the hospital connects with two parking garages and then the transplant center so I pushed Nicole in her transport chair. We waited in the waiting room until about 1:10 p.m. when we were called. Nicole got weighed and height measured. From here she had her vitals taken. Her O2 stats were lower than normal but she was on her portable oxygen which is pulse ( means she only get the O2 with the breath) and I had her lower than she is suppose to be to conserve the battery. They switched her over to one of their tanks (which is continuous flow) and upped the O2 and then got a better reading.

It wasn’t too long before the surgeon came in. He was very nice. Told Nicole that her life would be so much different after transplant. Talked about her heart issues and what the plan was for this…. repair or transplant. He is leaning toward transplant but there has to be testing done to see how her heart functions. He also explained the procedure of the transplant evaluation. It is hard to write all this down as he is talking. I taped the appointment so I will go back and listen and type the notes on my computer. He left after about 15 minutes or so later. The heart transplant coordinator continued to talk with us and told us that the next step will be an appointment with the lung transplant director. I should be hearing from the center within the next week with an appointment for this. After that we will see the pediatric heart surgeon that will be on the team to consult/repair the heart.

The nurse stressed to Nicole that this procedure will be intense and stressful as there are many, many, tests and a lot of lab work as well as clinic visits before the transplant team even sits down and makes a decision as to whether or not Nicole qualifies for a transplant it will be at this time that she gets listed if they take her on as a patient.

A couple of the nurses recognized us and the heart transplant coordinator was surprised and asked how we knew each other which of course is because of the PH support group which is held every other month at the transplant center.

I know Nicole wants the transplant because she would be better and “normal” but I am afraid that neither one of us really fathom what she and our family will go through during this process. I am not real, real knowledgeable with transplants but I do know that the statistics aren’t real high when it comes to lung transplants and maybe heart for that matter. In actuality though the statistics are real high for long term survival with the disease either.

The first hurdle that must be overcome is how to get Nicole a cardiac MRI with her pump. The pump can’t be in the room with her because of electromagnetic waves or something to that affect that will mess up the pump. The coordinator, Kathy, told me that I should call Accredo who is the speciality pharmacy that I get the medicine/supplies from and ask them what they do in this instance. It would be simple if she was on IV Remodulin but because she is on sub-q Remodulin it can’t be done by adding to the tubing like with IV. The only option that the pharmacist knows to do is to disconnect the pump for the hour it takes to do the MRI. I don’t know whether the PH specialist will consider this and I don’t want to do this if it will jeopardize Nicole’s health so we will just have to see what happens. The question will be will the benefits of the MRI out way the risks of disconnecting the pump. This is for the doctors to decide.

Also, we have to think about the financial aspects of this procedure. It is, I believe, something like a quarter to a half million dollar procedure and insurance will not cover the whole cost and we will be responsible for the rest. We have not gotten into that aspect yet. I know I will learn a lot of things in the days to come going through this procedure.

I also know that I will need to be more disciplined with keeping meticulous and very detailed notes which up to this point I have not because of a little thing called “denial.” The lady I met at rehab said after transplant they want to know if your eye twitches because it could be rejection of the organ.

I hope and pray that Nicole will be in good hands between all of these doctors but ultimately she is in God’s hands.

The coordinator also said that the team is very close and they are in constant communication by text and phone … they all have smart phones and I have a dumb smart phone.

I don’t believe in coincidences so I know this was met to be… when we got to rehab yesterday there was a lady there who was wearing one of those little white surgical masks which is a dead giveaway that they are a transplant recipient. The transplant center while they have been doing liver, kidney, pancreas tranpsplants for years this year they just started lung/heart transplants. She was the first person to receive a double lung. She talked freely about it and how wonderful the transplant team was. I know that Nicole’s case is much, much complicated but it really did put my mind at ease especially about whether we were choosing the best transplant center because of their inexperience. The woman’s husband heard me ask Nicole what she wanted to drink at the gift shop and she said orange Gatorade he went to the gift shop and bought her a bottle. I can’t tell you how much appreciation and gratitude I have for the RT’s (respiratory therapist) and the other patients at rehab for being so nice to Nicole. Everyone was so happy to hear that she was finally being evaluated for transplant.

I have to believe that God will give both myself, Nicole and the rest of our family the strength to get through this process with the best possible outcome.

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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.

5 thoughts on “Transplant Evaluation

  1. Avatar of JoJo

    As scary as this all obviously is, it does sound like you are in great hands and of course with God you have the best of hands. I don’t believe in coincidences either. Praying for continued encouragement and for a great outcome.

    Reply
  2. Avatar of DeniseDenise

    Hi Jane–As I read your post, I couldn’t help but think of your very first comment on the site, in the spring of 2011. (I’m going on memory, which tells me it was March 2011. But, my memory could be wrong.) Anyhooo…

    Jane, you have come so far in managing Nicole’s diagnosis, her medical care and your emotions relating to all of the above. You are a strong, faithful advocate. Jane, I truly believe you have come full circle and are ready and prepared to walk to what’s next for both you and Nicole.

    I admire you very much, Jane. :)

    Happy Thanksgiving!

    Reply
    • Avatar of JaneJane Post author

      Denise:

      So what was the comment in my first post? I really am not comfortable with people saying (better than saying hate) that they admire me or I’m an inspiration because I don’t see myself like that. That compliment coming from you Denise means so much because I admire and respect you so much.

      Hugs:o)
      Jane~mom to Nicole, 18 yo, VSD, ASD, Eisenmengers, (dx 1/22/10) BHJS (dx 2/4/11)
      “You’re braver than you believe, and stronger than you seem, and smarter than you think.”

      Reply
  3. Avatar of KristinKristin

    I can only second all that has been said above, Jane. You are such a wonderful mother, caregiver and advocate. You are in my heart and prayers everyday.

    Reply
  4. Avatar of ejourneysejourneys

    Jane, I wish you could see yourself as we see you. If I try hard enough, I can recall how uncomfortable I used to feel whenever I received a compliment. I used to feel I didn’t deserve it, or hadn’t earned it, or that somehow it made me stick out like a sore thumb and made me a target. Or that acknowledging a compliment meant I was insufferably boastful, which meant I was ripe for being struck down. I had to work to overcome my own fear.

    Your strength, compassion, and perseverance affect the world and those around you and you make a difference. You are an inspiration to others because you teach them (and us), simply by being who you are, to advocate for those they love and to keep moving forward, even through fear and heartbreak. I am very thankful that you are in this world.

    Reply

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