Wednesday, July 24, 2013

A Character Sketch...

I have been going through Nicole's old schoolwork as I had a huge hope chest full of all her books, papers etc. from 6th grade on.  I only need to keep from 10th on in case the county comes back and questions me.

I found this character sketch she did for an assignment in 10th grade English.  This character sketch is of me and this is what she wrote:

Jane Northrop is an awesome person.

She has shoulder-length dark brown hair that is usually in a ponytail.

She wears neutral-colored makeup and carries a big purse whenever she goes out.  She has dark brown eyes and wears glasses for her nearsightedness.  Her typical outfit is either jeans or capris and a t-shirt.  She usually wears sneakers even when she is doing things around the house.  She usually wears a cross necklace and a bracelet and earrings.  She is usually wearing something that spreads awareness about pulmonary hypertension whether it is a t-shirt, bracelet or button.

She tends to complain about her situations a lot.  She tends to be a bit impatient but not more than an average person is.

She has a melancholic type personality.  Generally, she reacts to change somewhat badly, not liking it at all, but she is very strong and takes the change head on.  However, she is usually stressed out about something whether it's because of what she has to do or because of other people.  She usually has a bit of a negative attitude, but she tries her hardest to have a positive attitude.

She tends to judge others easily, especially when she feels they have wronged her.  She tends to get upset at others, especially when they did something she feels they shouldn't have done.

Everybody believe s that she is a very kind person with a very godly heart.  They also think she's organized and very strong emotionally.

She is typically at home with me, stressing out about what she has to do.  She procrastinates a lot, though,  and is usually found on the computer checking Facebook.

She tends to agree to do a lot of things, and that causes her to stress.  She is a very devoted Christian and spends time every day on several devotions.  She is also very devoted to helping me with my medical illness. She is very loyal to her family and friends and will try and help them if they need.  She is an organized person, even though she doesn't see it because she can never find anything. 

I'm not sure if this is the end of it or I'm just missing the second page....

Wednesday, July 17, 2013


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. 

Monday, July 15, 2013

Nicole's Make-a-Wish trip

Nicole had her make-a-wish trip this past week.   If you aren’t familiar with this organization they grant wishes to children up to 18 years old with life-threatening illnesses. 

I nominated Nicole when she was about 16 ½ .  She didn’t want to do it because she didn’t know what  her  wishes were.  The wish child has to pick their top three wishes .  Initially, her wishes were to go to Alaska,  tuition for college, and professional camera equipment in that order.  Two volunteers came to our house to talk with Nicole and I had to fill out paperwork as she was a minor. 

I believed after this meeting I got a letter saying that the volunteer didn’t think that Nicole really knew what she wanted and when she did to contact them. Nicole didn’t seem to  interested so I let it go.   I eventually got a letter saying if she didn’t pursue her wish than her file would be closed which by this time she was almost or had just turned 18.  I contacted them and said that Nicole wanted  to pursue her wish.  Nicole spoke with a volunteer over the phone. Her wishes had changed because she had gotten the camera equipment so that was taken off.  Her wishes now were meeting her online friend Shayne, college tuition and Alaska.  The volunteer on the phone told her she didn’t think they would fulfill her first wish.  

The volunteer called in January 2013 when Nicole was in the hospital.  I accidentally deleted her number and after a couple of months without her calling again I emailed the last person I had had contact with at make-a-wish.  A week or two later, I heard from Christina the make-a-wish coordinator.  

She apologized for the volunteer telling Nicole this as well as telling me that she wouldn’t speak with me because Nicole wasn’t a minor anymore.   Christina dealt with me during the whole process without a problem.  Christina said if Nicole’s wish was approved it would be the first time that they had fulfilled a wish like this.  

For every wish, the recipient’s doctor has to approve it. Nicole’s cardiologist approved the wish so the next step was to find out if Shayne wanted to be part of Nicole’s wish… which he did.  At  this time it was up to Nicole to pick the date.  

Christina and I spoke and emailed quite a bit for the next couple of months to get the wish all set up.  

Tuesday, July 9th
This was the big day.  I don’t think either Shayne or Nicole slept much the night before.  Shayne was picked up by a car at his home in Maine at 5:30 a.m. for a 7:30 a.m. flight from Bangor to Washington D.C.  I had asked his mom to ask him to text me when he got to the airport in Bangor and D.C. so I knew he was okay and if Nicole asked I could let her know.  Shayne has never flown before except in a glider with his dad.  

A car picked Nicole and I up at our home at 1:00 p.m.   Shayne’s flight was scheduled to land at Orlando International Airport (OIA) at 1:53 p.m.  It is about a 45 minute drive from our house to the Ritz-Carlton hotel at Grande Lakes in Orlando.  Rick was following behind us as at the time of planning the trip he didn’t know if he would be able to get the day off.  

We got to the hotel about 15 minutes before Shayne was scheduled to land.  The oxygen arrived at the about the same time.  It was my understanding and I thought I had made it clear to the oxygen company that the portable tanks needed to be the smaller one’s because Nicole  would be in a wheelchair and they needed to be able to be in a bag and hung to the wheelchair.  What we got was the normal size tanks  which wasn’t going to do us any good so we would use the portable concentrator.  

The plan was to meet Shayne  in a lounge area of the hotel.  Our rooms were ready when we arrived so we went up to check them out.  There were flowers for me from the staff.  Nicole had an edible arrangement.  There were also three Ritz-Carlton bags with three pink hats.   I think they thought Shayne was a girl … they did exchange it for a blue hat.   There was also a big basket of chocolates and chips etc.  While we were in our room an employee came to the door.  I asked him if I could take the stuff out of the fridge without being charged for it.  He said it wasn’t a cold storage and if I needed a fridge I could rent it for $15 a day.  I had brought a bunch of water and some yogurt and Gatorade  and  Nicole’s Remodulin is kept in the refrigerator.  I told him I would think about it.  Shayne had texted Nicole that he was on his way.  We went downstairs to find the lounge area and was walking along the lobby when Shayne came up to us from the side.  He gave Nicole a big hug… I had planned that I would video tape their initial meeting … well, this didn’t happen.  All I got was a fuzzy picture of  them hugging which I had to make sure they said in that pose until I got my phone out of my pocket.   Rick had been outside  and came in to meet Shayne.  A hotel worker took pictures of us with my phone.  I decided to rent the refrigerator and  went to the front desk.  I told them I would like a refrigerator.  They said if it was for medicine they waived the rental charge. 

We then went up to our room.  It was two rooms that were connected by a living room type area.   We hung out for a while.  Nicole had to decide when to do her pump change before or after dinner.  We decided to do it before.  We then left to go to dinner at Chili’s which is Shayne’s favorite restaurant. 
When we came back to the hotel Rick went home for the evening but said he would be back on Wednesday to take part in Nicole’s surprise.  I believe that Nicole and Shayne played a game. 
Nicole had decided a few weeks ago that she wanted a new desktop computer to replace her Mac laptop as she couldn’t do what she wanted on it.  Shayne is gifted with computers and has built his own along with helping friends and family build their own too.  Shayne told Nicole what to buy.  Nicole had decided to bring it all to the hotel so they could put it together instead of waiting until Friday when Shayne would be coming to our house for a few hours.  This was Nicole’s first major purchase she has made with her own money.  

About the time I was ready to go to bed Nicole and Shayne came out of the room and decided to start putting the computer together on the floor in the living room.  I went into our room and shut the door.  A little while later I heard banging and thought it was from another room so I went back to sleep.  Later, I heard the banging again and this time I got up and looked out the window and then opened the door to the living room and Nicole was standing there glaring at me.  It turns out there was no knob for the door on that side.  Nicole had tried to get in our room with the room key but the latch was across and so she couldn’t  open the door.  I felt so bad… needless to say I didn’t close the door all the way again.

Wednesday, July 10th
Today was the surprise day that I had asked for.  Nicole and Shayne had no clue where we were going.  All they knew is we were being picked up at 11:30 a.m.  Nicole has had a bad rash on her thigh where her old site had been which I guess had spread to her new site which was over a few inches.  I don’t remember why Nicole went to change her dressing but when she went to take it off the gauze stuck to the catheter and started to pull it up.  Nicole was able to keep it down and still get the gauze off.  I contacted the Accredo nurse by emailing her a picture of the rash as my phone wouldn’t text message a picture.   She said that the site looked angry and that it needed to be changed sometime today.   Nicole was very upset.  This was her worst fear that her wish would be ruined by a site change and Shayne would see her at her worst.  With both Shayne and  I consoling her I finally got her to get up to start getting ready.  We would change it after the surprise.  She came out of the bathroom a few minutes later holding the catheter as it had fallen out which meant at 11:00 a.m. we had to put in a new site.  Nicole did this quickly, usually she has a hard time getting ready to stick herself  but she didn’t have the time to do this today.   I asked Rick if he would go down to the lobby and tell the driver that we had had a medical issue and we would be down as quickly as possible.   We came downstairs and walked out of the lobby to see a limo waiting for us. 

 I was afraid the driver, Wade, was going to give away the surprise when he asked if we wanted to go to lunch before or after we went to the Florida Mall.  It was decided that we would wait .  When we arrived at the mall the driver got out Nicole’s wheelchair that he had up front with him and  Shayne helped Nicole get everything situated.  A crowd started checking out the limo probably thought there was a celebrity.  Rick had gone into the mall to find a map to see how to get to our destination.  At the same time, the driver was on his phone looking where to go also.  The driver gave us his card and told us to call him when we were done.   

Shayne was pushing Nicole and I asked her if she knew why we were here and she said  “I think so”.   The mall is huge and we finally arrived at Build a Bear.  They brought out a bag for Nicole which had the two my little ponies that they had saved for her Pinkie Pie and Rainbow Dash.  Nicole had gotten the last Pinkie Pie.  It was so much fun.  They made the stuffed animals and then picked out and tried on outfits.  Nicole bought a small fry turtle for herself and for Shayne and an outfit for the turtle for each of them.   

They asked if they could also go to Hot Topic.  This is a goth type store with a lot of stuff pertaining to my little pony, Dr. Who and heavy  metal  t-shirts etc.  It was quite a weird store in my opinion.  Nicole who usually isn’t a shopper bought 5 shirts plus one for Shayne which was a matching one of the my little ponies shirt she bought.   She also bought a my  little pony rubber bracelet one  for her and one for Shayne.  Shayne bought her a vinyl collectible Fluttershy  (which is one of her favorite ponies) and a turret I believe from Dr. Who.  They had fun.  Nicole had to get out of her wheelchair and walk around the store because it’s not big enough and there is too much stuff to be able to get around.  This is a different blog for a different time!  I looked out into the mall and Rick was sitting in the wheelchair waiting for us.  I got a picture of him with the disposable camera that make-a-wish sent for Nicole. I started to walk out to talk to him and he said is that merchandise in your hand?   I quickly ran back in the store.  

When they were done we decided to go to Ruby Tuesdays for lunch since there was no way a wheelchair was going to be able to get around in the food court.   I asked the waitress if she knew if there was a drugstore in the mall as Nicole needed a heating pad and I didn’t bring ours.  I was lucky I brought her pain meds .  Rick went and got one while we finished up our lunch.  We then called the driver and he took us back to the mall.   Rick left to go home from the hotel.  Nicole was tired so she rested and Shayne and I had a nice conversation.  I said to him that he was so happy and positive and Nicole needed that.  He said he didn’t use to be but one day he decided that we are only here for a short period of time and that life was too short.  How wise for such a young person.   I asked Nicole when she knew we were going to Build a Bear and she said when we got there.  She thought I was taking her somewhere for an art class. 

After Nicole woke up, we changed her pump.  The kids didn’t want any dinner and just wanted to snack with the snacks I had and that were in the room.  I believed they watched TV, talked, laughed and played monopoly.  When it was time for me to go to bed they went to Shayne’s room to finish working and playing on the computer.  

Thursday, July 11th
Our plan was to go to Sea World but Nicole was in a lot of pain and could barely walk. She knew it wouldn’t be the best idea and Shayne had already assured her that he didn’t care if they went or not.  Nicole didn’t sleep good again which is normal the first couple of nights after a site change.   

Around noon or so after they had been up a couple of hours they decided that they were going to get lunch and walk around the hotel.  After they left I ordered lunch from room service and just chilled and read my book on my iPad.  I worried about Nicole but knew if something happened Shayne would text me.  When they came back I asked them what they had done and they said they had gone to the less fanciest of the two restaurants and gotten lunch.  I asked what they had and I believe Shayne said  Nicole had a chicken sandwich and he had an angus burger.  They each cut their sandwiches in half and swapped.  How cute is this?  They went to the gift shop and I said  to Nicole “and you didn’t buy me anything?”  She said she saw this notebook that I would’ve liked but it was $50.   I am glad she didn’t get it.  They also walked around a little bit.

I asked if I could go into Shayne’s room and see Nicole’s new computer.  Shayne came in a couple minutes later to show me the screen saver that he had put on for Nicole that she hadn't seen yet.  We talked for quite a while.  Nicole started to get upset and crying because tomorrow would be Friday.  I said why get upset he was still here now.  They decided to purchase a movie.  During this time the housekeeper came in to clean the rooms.  Shayne and Nicole were lying on top of the bed watching the movie.  She saw that Nicole was on oxygen and asked if she had asthma and I said it was much worse than asthma.  She said she hoped she felt better and gave her a bunch of chocolate squares that they leave on the pillow.   Nicole and Shayne fell asleep for a little while after the movie.  About 11:00 they got all their stuff together to go play on the computer and I went to sleep. 

Friday, July 12th
Nicole woke me up at 5:00 a.m. when she came in to the room to get into bed.  I believe they had stayed up all night.  She said she had fallen asleep for about 30 minutes on Shayne’s bed.  I heard Shayne walk her to the door and say goodnight to her.    I had to wake Nicole up at 8:30 a.m. because I needed to call at  9:30 to have our luggage picked up.  The driver was picking us up at 10:00 a.m. to take us back to our house.  I was upset with Nicole because she wanted something I had already packed to give to Shayne and she started unpacking things to find it. I snapped at her to trust me as I had what she wanted and I would give it to her when we got home.  I was also ticked off as they hadn’t packed up the computer etc.  I could tell as soon as I saw Shayne that the mood between them was somber.  Shayne was going to  push Nicole down to the car and I was going to take his luggage.  I checked out and we loaded everything  up and left.  When we got to our house I realized that Shayne’s bag wasn’t with us.  I called the driver and he said it wasn’t  in the car.  I called the hotel and sure enough I had left it out front.  They were going to hold it and the driver was nice enough to take Shayne back there on the way to the airport but he was going to have to leave at 2:15 p.m. instead of 2:30 p.m  I felt so bad.  Shayne said it was okay but I said it wasn’t.   Shayne cleared off Nicole’s desk as well as put up her monitor and hard drive the way she wanted it.  

I ordered pizza for lunch.  Shayne looked through Nicole’s sketch pad of drawings and then they went in her room so she could lie down.  The pizza took over an hour to get so Shayne had to eat it quickly.  It was very emotional.  Nicole started to say goodb…and then said “see you later”. 
Afterward, Nicole asked me if I liked Shayne. I asked if it mattered if I did or not.  She said she wanted me to like him but probably not.  I said “what’s not to like?”  I had a couple of nice conversations with Shayne and he is a very nice, respectful, mature young man.  

It is very clear that he cares a lot for Nicole.  Like Nicole, I worried that he will/would bale on her after  meeting her because he could physically see what Nicole’s life is like and the baggage she has.  He says he’s not going to bale on her and their friendship. 

I told Shayne this myself but I will say it again.  I am so grateful  to him for being the friend that he has been to her.  He truly is her very best friend and has been there for her.  I will always be grateful  for that. 

Nicole’s wish came true and it was all because of make-a-wish and Shayne.  I haven’t seen Nicole smile and laugh as much as she did this week in at least four years.  

When I was showing the pictures that I had taken on my phone to  Nicole’s grandparents her grandpa said when he saw the picture of Nicole with pinkie pie (I think) he hasn’t seen her smile like that in a long  time. 

Thank you so much Shayne and to his parents for allowing and encouraging him to be a part of this.  You made Nicole so very happy.  You made me happy as her mom to see her so happy.  You truly are her rock star/movie star. 

Sunday, July 14, 2013

"Not Being Sick Enough" Part 2

I didn't mean for this to have two parts.  While I was writing the first blog I thought of something I wanted to add and then when I finished typing my thought I couldn't remember what it was. 

I initially posted this blog on and I received a response which reminded me what I was going to say.

For those who may not know Nicole's story.  She was diagnosed 3 1/2 years ago with pulmonary arterial hypertension which in simple terms means the arteries in the lungs close up due to high pressure in the lungs.  There is no cure for this disease, it is progressive, and irreversible.  When Nicole was diagnosed she was in the severe stage which is the worst.  She does take a cocktail of three medications every day to try and stop the progression of the disease.  Two of these medications are oral one she takes three times a day and the other just once.  She also receives a continuous drug via an infusion pump subcutaneously (through the skin).  In addition to these medications she takes medications that combat the side effects of these PH drugs.  For instance, the continuous drug, Remodulin, has side effects of site pain when the site  needs to be moved (about every 5 weeks if it is a good location)  which last about 10 days so she takes a narcotic for this pain, she suffers from nausea and diarrhea and so she takes a prescription that helps with the nausea and over the counter Immodium AD to counteract the diarrhea. 

We were told from the beginning that the only "cure" was a double lung transplant.  This is another statement that I don't feel is correct.  Yes, it is a cure in the sense that she will not have PH anymore and would not have to use oxygen and would be able to breathe normal.   However, she would still have an "invisible illness" because she still would have to take medication everyday for the rest of her life to keep her from rejecting the organ(s) and those medications would include medications that treat the side effects of those medications.  She would still have to visit the doctor on a regular basis along with regular testing etc.  As the doctor once said "she is trading one problem for another". 

It's frustrating to know that at some point a transplant is inevitable but you still have to wait to even be considered, but I also know that the sickest should get the organs first and I also understand that the riskier the transplant the more it needs to be postponed to absolutely necessary. 

I would encourage everyone to please become organ donors as well as your loved ones.  It is the greatest gift that you can give.  For Nicole and those who will need transplants in the future this is their last hope. 

Saturday, July 13, 2013

"Not Being Sick Enough"

When we have seen the doctor at the transplant center it has been said by him that although Nicole's lungs and heart are very sick she isn't sick enough to be listed for a lung/heart transplant.
This really bothers me! The tech who did Nicole's last echocardiogram, Daniel, asked where she was in the process of transplant and I said right now she is just being monitored because "she isn't sick enough" . He said he hated that statement and it was one of the worst oxymoron's. I agree....
We have known since Nicole's diagnosis in January 2010 that she would one day need a double lung transplant unless there is a cure found. I had three years to come to terms with this and I think that I had and while I was afraid for Nicole and afraid for myself, Rick and the rest of our family and friends at the thought of losing her I was still confident. When we learned earlier this year that she would need a lung/heart transplant because while her heart can be repaired in conjunction with a lung transplant it would take to long. I can't tell you how much of a body slam this was for me. I felt like it was the day of diagnosis all over again and my breath was taken away. Heart/lung transplants are the most rare with the most risk of any of the transplants. In the last ten years in the state of Florida there has only been five of these done. I still haven't come to terms with this.
I know how sick she is, but I also know that she will have to become much sicker with her PH progressing and the medication that she is on no longer working to keep the disease in check. Her heart can also start to fail which isn't good either but the PH is by far the worse of the two. I can sometimes even forget how sick she is from time to time when things are going well even though I see her with oxygen all the time I don't notice a lot. Nicole has what is called an "invisible illness" as it can not be seen if she isn't on her oxygen or in a wheelchair which also makes it harder for people to understand just how sick she is if they are not around her much.
Kathy, who was Nicole's respiratory therapist for awhile at rehab and has been a wonderful friend to both Nicole and I were talking one day after having lunch and I asked her "how am I going to get through?" It rips my heart out when she has a heart catheterization and I have to see her afterwards. How am I going to handle seeing her hooked up to tubes and machines? She said to me that God would prepare me for this and when the time came I would be ready. I hope she is right. If you had asked me five years ago if I would ever be able to be a caregiver for Nicole and do everything that I have done for her I would have said "no". Most days I look back and don't know how I get through them and do what I do... as I am terrified for Nicole's future and mine especially if it is without her. I have to trust in my faith and God to continue to watch over her just like he has for the last 18 years.
After Daniel said he hated this statement I decided when I was asked about Nicole and where she was in the transplant process instead of saying "she's not sick enough to be listed" I would instead say "As long as she continues to remain stable she isn't in need of a transplant." I think this is much more positive.