Nicole and I had our monthly support group meeting last night. I am trying to be more involved in the group with hopefully one day being a co-leader but I don’t want to step on any toes. Anyway, one of the respiratory therapist who works with Nicole was there. She saw us and since we had a field trip to the chocolate factory we didn’t go to rehab like we normally would so she was glad that we were there. She has gone above and beyond the call of duty for Nicole and I so greatly appreciate it.

She showed me a folded up piece of paper which she said she received from Nicole’s current PH specialist. Later, she sat next to us and was talking to me and told me that back in the middle of January she had contacted the current PH doctor to find out what perimeters that they had to work with in regards to Nicole’s oxygen, her oxygen saturation levels, and her exercise routine. Well, she finally received a response via fax yesterday, even though the letter was dated Jan. 19th or something to that nature. She said she would get in trouble if she showed it to me but she was planning to fax it to the PH specialist I am hoping will treat her. I also asked her to fax it to her cardiologist as I knew they would fax me it right away.

Anyway, she finally let me read what it said. Basically what it said was that she was to be on 3 lpm (liters per minute) of oxygen at rehab and if her oxygen saturations level dropped below 78% there weren’t under any circumstances to have her oxygen increased as it would not approve her condition and that she was suppose to instead decrease her level of exercise.

He went on to say that she was a Class 3 (this is like the stages of cancer and with PH the stages are Class I through IV with IV being the most severe). He also said she was maxed out on her drug therapy at this time. This isn’t true at all… she is when it comes to inhaled or oral medications but there’s still the IV meds which she will have to go on as the disease progresses and until such time as those medications no longer control the disease this is when it will be time for lung transplantation. I do not understand where he is coming from and I WILL NOT allow a doctor to give up on my daughter’s life. I like the doctor very much and he is very nice but he is of the same cloth of doctors that have mis/non diagnosed Nicole all her life.

I refuse to give up on Nicole. I want her to have a better quality of life even if this means IV meds that scare us both to death. Nicole was sitting right next to me when I was reading this and I can guarantee you that she read it and I also know Nicole and she will feel “why bother… it won’t make a difference anyway…” which is exactly what this doctor is saying in my mind. I told the RT (respiratory therapist) that on Tuesday when we go to rehab on one piece of equipment which they can decide I want her to be on 3 LPM of O2 (oxygen) and see what her oxygen saturation levels run and how she reacts and we will document it because I can guarantee you that it does make a difference what her oxygen intake is.

I am curious to see what the (hopefully) new PH doctor says. He came to the meeting last night and he saw me and Nicole was in a wheelchair as we were taking a tour of the transplant unit and so he (the doctor) peaked around the lady standing in front of Nicole and Nicole smiled at him. He said … look at that smile… next time give me some advance notice before you do that… I know this was something nice and a compliment just not sure what. Nicole has a smile that will light a room … it is the thousands of dollars of braces! The respiratory therapist asked one of the employees there if there was a copy machine and she made a copy and folded it up and gave it to the doctor. As I walked past him I said…. “that piece of paper is about Nicole.” The RT, Kathy, told me that she saw him reading it.

I will talk to Nicole today about whether or not she read the note and what her feelings are about it.

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