USE YOUR VOICE

Sleeping on our own beds last night felt really good.

 Just before we were about to go to sleep Thursday night a small amount of blood came out of Philip’s navel. Because of the concern about internal bleeding, I told Philip to start getting dressed and I called the after-hours number for the Transplant Clinic. A doctor came on the line, asked me a few questions, and said he didn’t think there was anything to worry about. He suggested I keep a close eye on Philip through the night and call back if there were any changes. This response didn’t sit well with me.  I went over what had taken place during the week and explained that there was some concern about internal bleeding. He explained that internal bleeding would not show up through the navel and again suggested that I had nothing to be concerned about. My worries were not eliminated, I explained to the doctor that I was still concerned and asked him to please share with me his professional status at the hospital and his specialty. He explained that he was a Fellow in the program under our liver specialist. I felt much better knowing that he is training under  our liver specialist. Frequently patients and their advocates are not comfortable asking questions. There is no doubt that asking this question took a great deal of nerve. However, I got the information that I needed to be comfortable, and the doctor was very kind and patient. I think we both benefited. I used my voice and got answers, and he learned that you can sometimes help people if they understand your position and status.

 Friday was the day for the Pulmonologist. This was the appointment that I was the most anxious to have. I was looking forward to getting a better understanding of his heart and lung condition. It seems that the liver disease has caused the right side of the heart to become enlarged and the pressure to be elevated, this is called pulmonary hypertension. This is a big deal in terms of getting Philip on the transplant list. A cardiac catheterization done in August showed that he has pulmonary hypertension. Philip’s number for this pressure is 50 and needs to be 35 or less to be on the transplant list. We need to wait two or three more weeks to do an echocardiogram to see if the heart looks better. If it looks better, they will do another cardiac catheterization to see if the pressure levels are low enough.

 

8 Comments:

  1. Hi, I meet Philip online at Pogo.com. He had started a chat in a “game room,” Saying, “Hi, how is everyone today?” NOONE answered him. Having had this experience myself, many times, “I” answered him. I am a Mom, Gramma, Great-Gramma. I am a Christian. Philip did NOT care about age, choice of faith, etc. We started to e-mail, and became friends. We even spoke on the phone a few times. I did NOT know about the liver disease. I knew about the brain tumor. Philip was and will continue to be in my prayers. HE e-mailed me this morning to tell me of this blog. I have tears in my eyes, because I really care about Philip. I will pray for him daily, and even EVERY time he comes to my mind. I DO have a question, please. What exactly IS his liver disease? It’s not cancer, right? God bless you all, and please tell Philip that Lois says “Hey, and hang tough buddy!!” Okay, thank you. I am going to read more, now. love and bighugz to my dear friend Philip, and to all of you. He HAS told me about his family, and how loving and kind they all are to him, and each other~!!!! :*))) Have a Good Day.

    • Dear Lois, thank you for all of your prayers for Philip. He is quite the young man,
      No, he is not suffering from liver cancer. He is suffering from liver failure and we are hopeful that he will make it onto the liver transplant list before too long. Thanks for caring.
      Lorrie Klemons

  2. Hello again. It’s Lois. Philip had sent me an e-mail this morning, asking me to “check out” the blog his Mother, and a friend, made for him and let you know what I think. I am VERY thankful you have put up this blog. I can check daily to see how Philip is doing. I e-mailed him back to let him know I DO like the blog, AM praying and that I think he is very brave and strong. Also, his positive and good attitude is so awesome!! Thank you for letting me/us/ know about Philip. My prayers are also with all of you, his family and loved ones. God bless you all!!! ~~Lois

  3. Yes, you are absolutely welcome. I DO care, very much. I am proud to be called friend by Philip!bighugz, Lois

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