Sunday, March 9, 2014

Week of March 3rd 2014

This week started out on Monday with a trip to University of Florida in Gainesville.  This time Nicole was being seen by the pulmonologist in the Lung Transplant Program.  She was also having a chest x-ray, a pulmonary function test (PFT) and a 6MW (minute walk).  Nicole increased her walk distance from 913 ft to 930 ft.  This is good.  The doctor said that her PFT was better than the one she had when she was sixteen.  I was glad to hear this too.

Nothing new happened during the visit with the doctor. He basically said that he was a passenger and the Congenital Heart Center was going to call the shots.  The nurse coordinator did tell Nicole that post transplant she wouldn't be able to have any reptiles, cats, or birds as pets.  This wasn't taken well by Nicole as she does have a turtle that she adores.

It sounds like she will see the pulmonologist at or around the same time as she sees the cardiologist up there so we don't have to make two trips.  She will be seeing the cardiologist there on August 20th and will have another EKG and echo at that time.  She is suppose to have a right heart cath at some point between now and then and this will be up at the University of Florida.

Nicole seemed to like the nurse coordinator and the pulmonologist but Nicole does like everybody for the most part unless they are mean to her.

On Thursday,  Nicole had her 3 month visit with the PH specialist.  I had sent  an email to his nurse basically telling her what the cardiologist had suggested in regards to Nicole's medication.  The cardiologist at UF wanted Nicole's Revatio to be increased from 20 mg three times a day to 40 mg three times a day for three to six months and then increase it again to 80 mg three times a day.  The PH doctor didn't have a problem with this, however, he is going to switch her from Revatio (viagra) to Adcirca (cealis).  The reason for this is because Revatio while it is available in 20 / 40 and 80 mg strength it is only approved for 20 mg by the FDA and therefore it is very hard to get the insurance companies to cover one of the other doses.  With Adcirca she can get the equivalent of these doses with no problem and Nicole will only take it one time a day as opposed to three.   I will be refilling her Revatio for the month as it will probably take a couple of weeks for it to go through and get shipped.  I hope that she doesn't have any issues switching over. He said she may have some back pain.

The PH doctor had no problem with increasing her Remodulin but it will be only increased on the same day as she does a site change.  He said she might as well have the pain, nausea, diarrhea all at one time and get it over with.

He didn't want to change her pain management because the stronger the narcotic the more side effects such as drowsiness etc. and he just wants to keep it the way it is.  He said that the ibuprofen did not lower the platelet count but it does affect the way the platelets are formed or something like that.  I have to transcribe the recording of the appointment, hopefully, this week.

He didn't realize that Nicole was changing her site every 30 days because of infection which he said may be because of the very high dose of Remodulin she is on.  He also thought it might be good to try an antibacterial nose spray that she takes for 5 days but I am not clear on when she is suppose to take it.  I will have to contact the nurse tomorrow to ask about this.  He also prescribed Hibiclens in the pump that he wants her to use in the shower like a soap or he wants her to soak in it I'm not clear on this either but I do remember him saying to do it with a site change.  This will be a trial and error thing as he doesn't know how often she will need to use this.  He is hoping that these things will cut down on her infections.

He was upset with me because his nurse said I was rude to her in an email.  I didn't realize I was rude and I am not real sure what email she is referring to but it wasn't my intention.  I did send her an email apologizing to her.   I need to work on being a little nicer (I am nice but if I am having difficulty getting a medication etc. I can get frustrated and not be nice) and really watch what I say.  I am so grateful to the doctor and his nurse for helping Nicole as much as they have with the treatment of her PH.

After the doctor's appointment we went with Jackie, the other support group leader to visit one of our support group members who is in the final stages of PH as well as some other health issues.  The PH specialist (the same one Nicole sees) said there was nothing more he could do for her.  She was so excited to see Nicole and gave her a hug and told her that she loved her.    I don't think Nicole really realizes what that meant to Suzy.  We then went to Costco and Nicole drove a motorized cart for the first time she did an awesome job and didn't run over anybody, knock anything over etc.  

This coming week doesn't have any doctor's appointments on tap only her monthly blood work and a return to rehab.  This will probably be the last full week before she has to change her site again.

I have several things to do this week in regards to Nicole's medical issues.  I have to contact Social Security to find out if she meets the criteria for Medicare.  I also have to transcribe the appointment with the PH specialist. I need to re-order her Revatio.  I need to call Accredo and ask a question regarding some paperwork that they sent me when Nicole got her first shipment of Revatio through them.  I have to call Theralogix which is where I get Nicole's Vitamin D that her rheumatologist has her take because  the bottle of vitamins that they sent me in January expired in June 2013 so I want to be reimbursed for that.


  1. Hi there, I'm Lindsey! I have a question and would love to speak with you, please email me when you have a chance, thanks so much! Looking forward to hearing from you!

    1. Hi Lindsey:

      I would love to answer your question but I don't have your email. Find me at facebook url /jbones1961