Venting....

This is just going to be a rant because of frustration and not knowing what to do about it. 

I absolutely LOVE Nicole's PH doctor.  When she sees him he makes her feel like she is his only patient.  The problem I have is all the other times I have to deal with his office. 

The transplant center requested a new echo back in May  and since Nicole was seeing the PH doc the following week I thought this would be easy to get it done at his office.  Well, you know what they say about the best laid plans.... he decided that he wanted it done at the hospital (not the same hospital as the transplant center is through) because there machine was better.  We finally got it scheduled for June 20th.   I still don't know the results of the echo nor has the transplant center gotten a copy of it. I emailed the PH nurse the first time on July 2nd.  She responded on July 9th as she had been on vacation.  She told the doctor that I had requested the results.  Test results should be reviewed with the patient before the reports are released (I'm not sure if this is his policy or she was saying this).  She said the doctor wanted a phone conference with me and asked when would be a good time between the 9th and 12th.  I said either early Friday morning prior to 9:00 a.m. or anytime after 4:00 p.m.  On the 10th  I told her Nicole had her metabolic panel bloodwork done on July 2nd and wanted a copy of that.  She did reply to this that the doctor would call on the 12th at 6:00 p.m.  Never addressed the blood work.  The doctor never called me for whatever reason. 

I got a call from the transplant center on Monday asking if I had the results of the echo.  I  sent an email to the transplant nurse that I didn't have the results and that they may have better luck getting them then I have.  I also said that in the future whenever Nicole needs an echo I will have it done through her cardiologist.  They will get it to the transplant center and to me  in a timely manner.  This problem taken care of. 

Nicole has monthly blood work for a complete blood count (this lets us see her red blood count as well as her platelet count which is always low) as well as a liver function test as one of her medications can cause liver damage, a pregnancy test (regardless of sexual activity) as this same medication that can harm the liver will cause serious birth defects so can't be taken if there's a chance of pregnancy, a metabolic panel which among other things checks the potassium (this is usually low for Nicole) and a magnesium count.  She has a standing order through the PH doctor for the metabolic panel and magnesium testing and the CBC, liver, and pregnancy is through the cardiologist.  The hospital faxes the results to each doctor that requested it.  I emailed the cardiology nurse asking if  the doctor would write a script for all of the standing orders together and he would get the results because I know I will get them in a timely manner.  I am waiting to receive this script in the mail.  This problem taken care of. 

The last issue that I have and this is where I am frustrated as how to handle this.  Nicole is on subcutaneous Remodulin which means that she has a tiny little catheter in her skin that is attached to an infusion pump that delivers the medication.  On average every five weeks the catheter needs to be taken out and a new catheter put in at a different location (abdomen, thigh, arm, buttocks).  When she initially puts in the site she has extreme pain for about 10 days during which time she has to take Hydrocodone.

Nicole had a site change on June 26th in the hopes it wouldn't interfere with her Make-a-Wish.  She actually put it in dry on June 24th but that day and overnight it started bleeding so Nicole had to take it out and stick herself again.  I'm not sure if she got too close to the old site on her thigh or what but she got this really bad rash that seemed to spread from her old site to her new site.  Bottom line was she had discharge and when Nicole went to take off the gauze that covers the catheter it stuck and Nicole had a hard time getting it off without pulling out the catheter. After texting a picture of Nicole's thigh and speaking with the Accredo nurse she said the site was angry and that Nicole would have to change it that day which was July 10th two weeks after the last site change. This same day July 10th I sent an email to the PH nurse that Nicole had to have a site change and that I wasn't sure if she would have enough pain meds to last for this site change and I would like another script. Previous to this, right before this site change I had asked for another script before the doctor went on vacation I never received the script that I requested nor did I receive one the time before when I asked for it but was just ignored.   Only the doctor can write a script for narcotics and it must be mailed or picked up and taken to the pharmacy.  She said she would have the doctor write it on July 11th and she asked me if I was going to pick it up.  I said "no" just get it in the mail to me on Thursday and I will have on Friday and I can fill on Saturday.  As of yesterday which was the 16th I still haven't received the script.  I ask you... if he puts her on a medication that causes extreme pain where she has to take narcotics than he better make sure that I get the scripts when they are needed and in a timely manner.  This isn't the first time I have had problems getting pain meds. 

Initially Nicole was on Tylenol/Codeine which she had some reactions to... nausea and dizziness.  When Nicole was in the hospital in January they gave her Hydrocodone and she did much better on it.  I asked for a script of it on discharge but didn't get it so when she saw him for follow up ten days later I got a script.  The doctor wrote it wrong ... hydrocodone has to be mixed with acetaminophen or ibuprofen and he didn't realize this and just wrote it for straight hydrocodone because you use to be able to get it like this.  She had a site change and I went to fill it and couldn't.  I was livid and called the doctor's office and talked to one of his NP's and he said that he would get it out to me ASAP... it was put on someone else's desk to get mailed out and I didn't get for at least a week.  During this time Nicole was forced to take the Tylenol/Codeine.   I can't control what other people do or don't  do only what I do... I emailed the cardiology nurse to see if the cardiologist would be willing to prescribe the narcotic and he doesn't have any patients who take pain meds so he won't do it (at least I tried).  I shouldn't have to fight every time I need a script to get it.  The only options that I see is that I either find a new PH doctor or I get more than one script every 3-4 months when she sees him but I don't think this will work because of the strict laws of narcotics.  The only other solution I see is that I will have to travel down to his office which is about 25 minutes from my house if the traffic is good and pick up a script every time.   I also could email the doctor personally and let him know of my frustrations.  Fortunately, Nicole will have enough pain meds to last through this site change I believe but I think she has not taken them as much as she should because she was afraid she would run out and just tolerated the pain.  She thinks I don't know when she is in pain and how bad it really is.