The last few months at home

Valentines day came and went. It was an awesome day! I got two pajama pants and 2 apple scented candles from Jerid. I got him a Mountain Dew hat, pajama bottoms and a cactus. Yes, I got him a cactus. LOL! It was unique and I thought that he  would enjoy it. He loves it. It is sitting on his desk next to the computer. He checks it once a day to see if it needs water.

The swine flu scare at our home is finally over! Only my Abbi had it. My son had strep throat on top of a cold. Now I'm getting sick. I have been wearing masks that my friend Shondell bought me so Jerid wouldn't get sick but he's insistent on being right next to me. I know he loves me, I just don't want him to get sick. I told him my concerns and he said "Well I've been out for a year. I can live with going in once a year." Yeah but if it can be prevented longer than that's what I want him to shoot for. I don't want some small stupid cold to ruin his year long streak.

There's a study for a CF med called the VX-770. It is showing a lot of potential in the defective rare CF gene my Jerid has. One of my friends are on it and she is making super progress! She went from wearing oxygen 24/7 to only wearing it at night! How awesome is that?! I can't stop smiling! I hope Jerid can get on that study! I can only imagine the results for him! He could possibly stay out another year! I'm going to have him call the study coordinator to find out if and when he can try out for the study. I will see a cure in my life time... I can feel it!!!

Midnight coffee and swine flu

At times it is nice to find comfort in friends and family. Especially those who understand what you are going through. Those who do not take CF lightly and understand the defective monster that lies in the genetic strand. Friends and family visiting are always a comfort to Jerid whenever he is in and actually helps build his morale. It's amazing how even a 5 minute phone call from someone will mean the world to a CF patient and actually helps in their recovery. His parents will come up every other day and bring him up munchies. Sometimes they ask him what he wants and other times they surprise him.

 

At times some of our CF friends would be admitted the same time Jerid was and we would get together for midnight coffee. The hospital has a coffee shop with plenty of tables. It was really nice to sit around, joke, laugh and sip on our coffees for about an hour. We didn't go past an hour because at this time Tonya was in and out of the hospital every few weeks and she needed to have an oxygen tank and a wheel chair to get around. Despite having to have a few extra things with her she was always up for midnight coffee. Everyone would have a blast. I really loved it. I got to sit and see past the CF, the oxygen tubes, picc lines and port-a-caths and see past the thorns on the rose. If I thought too much about what they were going through I would catch myself starting to get a little weepy and I did not want to miss any laugh everyone was sharing with each other. Most of the time I would sit and listen because they would talk about going to CF camp and the fun things they all did together. I loved those stories. They were special childhood moments and they shared them with me. I was very honoured.

Two weeks in the hospital was a long time to just sit in the hospital. I know many CF patients who would agree with that. I would try and stay up whenever I could with Jerid. There were many faces who would come in and out of his room. Whenever RTs would come in I would love to curl up behind Jerid. Between the shaking of the vest and the low hissing of the nebulizer I would always fall asleep. As weird as it sounds, it was actually comforting for me. He was getting good care and I was able to relax.

Jerid likes to do CF studies. I'll support him in it. It is a good idea and it helps others with CF. He was on one study and they were finally able to come out with the medicine. It's an inhaled antibiotic. Jerid has been out for almost a year now because of this new med!n I find it very exciting and hope that the others who use it receive the same results. Jerid is not a fan of doing it three times a day but he needs to do it. At first I'll ask him if he's done his treatment and if he says yes I'll run down the list of meds he has to do for that treatment time. If he says no, then I grab his meds for him, start hooking him up to his vest machine and get his neb ready. He gets annoyed with me at times because I do that but as far as I see it, he will not fight alone as long as I am still around. He had told me at one point that when he met me he was just waiting around to die. He didn't want a lung transplant either. That was out of the question. Then one day he changed his mind. I asked him what had changed and he looked at me and said ""You". I can not imagine how someone could impact another life in such a way and with such intensity. I still can not comprehend it, which is why I give his health care props to him. He's the one sitting there several times a day doing treatments.

The swine flu broke out and people were in a panic. There was a huge rush to get the H1N1 flu shot. I was worried that anyone with lung issues were going to be looked over. I was wrong! Thank goodness! Jerid was able to get his along with a few CF patients I know. Long after the swine flu panic my 10 year old daughter Abbigail somehow caught the swine flu. As soon as my ex hubby and his wife found out they rushed over to our house and got the kids. I had just had surgery and they knew with Jerid’s CF they didn’t need to be around us. I talked to the kids step mom and asked her to care for them like I would. She told me that it wouldn’t be a problem and expressed how she knew it was hard for me having a sick child and not being able to care for them. I talked to my kids everyday they were gone and they seemed to be in better spirits and assured me Stacy was taking good care of them. I couldn’t have asked for a better step mother for my children. I love her. Now my son tonight started running a fever of 100.6 and had a huge headache so I called my ex hubby and told him about it. He said they'd be right over to get him because they're contagious when they have a fever. It's not 100% that he does have it but none of us want to chance it, especially when it comes to Jerids health. He assures me that he is fine. He is taking the tamiflu as precaution but I still worry. I can't help it. I love him.

Denial and sweet Anna

I give Jerid all the credit in his health care. His hospital stays have become fewer during the years we have been together.  For some reason though he still tries to give me credit. I cannot and will not accept that. He does the stuff he needs to on his own.

During another hospital stay one of the RTs came in to do one of his treatments and talked to him about a meeting they had earlier that morning. Jerid and I were online chatting and this is how our conversation went:

Jerid: I guess I was one of the topics in the CF meeting today

Jerid: the "main" topics

Jerid: according to Steve

Rachel: why is that?

Jerid: I guess 3 or 4 years ago I was in 8 times in one year... and then 5 the next year and 5 last year...

Jerid: they said either he's more conscience about taking care of himself or his wife takes really good care of him... more people agreed with the second one

Jerid: I agreed with it too

Rachel: LOL stop it

Rachel: you do it on your own

Jerid: you helped me to get that way

Rachel: you did it yourself honey... all you... I just cheered you on is all

Jerid: and my overall pfts have improved... even though I’ve been in the same amount of times the past two years

Rachel: good job baby I’m very proud of you

Jerid: I still stand by what I said though... I couldn't have done it without you... and for that I thank you baby... very much

Rachel: you did it on your own... no need to thank me

Rachel: you’re in the spot light not me

Jerid: honey... it's not just me saying it though...

Rachel: stop please

Jerid: everyone else has noticed

Rachel: it’s you all you

Jerid: quit being so modest

Jerid: lol

Rachel: I’m not

Rachel: you did it

Jerid: not by myself.....

Rachel: all I did was cheer you on honey

Jerid: honey... you helped whether you want to admit it to yourself or not

Rachel: no it was all you

Jerid ok... you tell yourself that... but on the inside you know it's true

Rachel: nope it’s you center stage honey and I’m just your biggest fan

Jerid: ok

Rachel: you make me proud... don’t ever give up

Rachel: if I accept what you just told me then how do you think I’m gonna feel after you’re gone? Like I failed...

Jerid: no... you added that much more time to my life honey

Rachel: so it was all you

Jerid: fine... lets compromise here... it was good efforts on both our parts

Rachel: no it was all you

After that we went onto a different subject. It still is hard for me to accept that there is a chance that we will not be able to grow old together.

I do what I can to raise awareness about CF. I have a myspace.com and a facebook.com account. I post or repost videos and other CF related stuff. Suzanne, who I talked about earlier, posted a video about a little girl named Anna who was 8 years old and fighting CF. Poor Anna was losing that fight and yet she still smiled. Cystic Fibrosis may wear out a body but it cannot break the spirit. I noticed Suzanne had also commented on the link of Anna's story she posted and her comment read "This video may not have the happy ending you want to see but this is cf's reality. People tell me to post only uplifting stories but I will not candy coat CF. Too many people are still dying from this disease every day. And until I am no longer here to do it or until there is a cure I will continue to post all aspects of Cf." After sitting and thinking about what people were telling her to do when it came to posting CF stuff, this was my response "I have seen 2 happy endings (you and Tonya) and I have also see what CF can do (breathe easy Mary and Mindy)... Next time someone tries to tell you to post uplifting candy coated CF videos let me know and I'll have Jerid cough up a good one and tell them to try and candy coat that... lol Seriously though CF isn’t something to be taken lightly... It’s horrible and heartbreaking and knows how to break the bank." It really is. I watched Anna's story with a heavy heart. Even the news reporter who did her story was having a hard time. She didn't think she could finish the news broadcast but for Anna she somehow found the strength and told the viewers that little Anna had passed away. So young and full of life and this horrible disease just takes over and yet little Anna still fought it. Breathe easy Anna, you brave CF sweetheart

Fighting for CF patients

During one recent hospital visit Jerid and I heard that they were moving the CF patients to different floors of the hospital and the nursing staff on 2 East in the University of Utah Hospital would no longer be caring for them. I was very upset when I had heard this. Some of the nurses and HCAs were not happy about the news either. I had joked about staring a petition and sending it to the hospital admins but the more I thought about it the more I felt something had to be done. Those wonderful staff knew the CF patients and that floor was a second home to them. I view the nursing staff as the CF patients other mothers. They have watched the CFers and took care of them.

When a child is sick who do they want? Their mother. I felt like the hospital was breaking up a family. I talked with more of the nursing staff and a few of the CF patients who were admitted at the time and they gave me their full support in the petition idea. With the help of Jerid’s dad I got the petition written. It said:

"University of Utah Hospital putting Cystic Fibrosis (CF) patients care on the back burner!  The U of U plans to disband its CF care unit and reduce care of CF patients levels not seen since the 1970s.  This atrocity will place CF patients in a situation that will be life threatening!

The Cystic Fibrosis patients at the University of Utah hospital need special care. The specially trained staff at the U of U was designed to treat them in the event of hospital stays, which can last up to two weeks or longer. It has been brought to our attention that with the new hospital expansion they are breaking up the 2 East unit which is the unit trained for CF care. This move is due to happen in October this year (2009). The U of U hospital admins are doing little to ensure the CF patients are going to get the proper care they need. They have said they will adjust where ever they go. This is not acceptable care for CF patients. There are several patients who are in and out of the hospital several times a year. Sometimes anywhere from 3-8 times a year or more. When CF patients are on another floor other than 2 East they do not get the proper care. In all cases the CF patient has to train other nursing staff on how to care for CF patients, some of which are not responsive to their help. They need a specialized unit with their highly trained and caring nurses that are currently taking great care of them.

According to www.CFF.org: "Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). It is a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. About 1,000 new cases of cystic fibrosis are diagnosed each year. More than 70% of patients are diagnosed by age two. More than 40% of the CF patient population is age 18 or older. The predicted median age of survival for a person with CF is more than 37 years."

The average cost for an inpatient Cystic fibrosis stay is $60,000. The amount could be more depending on the type of care the Cystic Fibrosis patient needs. These wonderful patients need your help. Please join us in our cause to help better their health care."

Here is where I had another epiphany. I realized how much CF stays and the costs of their meds were and some do not have medical insurance, so with the help of some other CF patients we came up with an idea of starting a foundation. Of course we knew we would start small but we wanted to help the patients pay for the medications they needed and if at all possible pay for the meds out right. We called our foundation "Born to Breathe Easy."  Our mission statement is "Our mission is to help improve the quality of life for those fighting Cystic Fibrosis (CF). All CF patients need access to the medication they need to maintain a healthy lifestyle. Every little step counts toward another year and eventually a life-time so support in the research of new treatment is a crucial and vital part in helping any and all CF patients around the world because everyone deserves to breathe easy."

We have quite a few board members who are CF patients. I am honored to have them there. They know more about their healthcare than I do. They have done it almost their entire life. Only a few are friends who have been touched by a CF patient. One of our board members is doing a fund raiser for us once a year. All our board member are volunteers. No one will be paid for doing what we do. We feel that the CF patients need the money more than we do. They are worth it to me and I do not mind donating my time. One day we hope that we can be big enough to help the CF doctors at the U of U hospital pay for their research. They work very hard and are awesome.

After talking to the CF doctors about the move I was given some good news. They were setting up a CF area with 10-12 beds and they will have nursing staff trained to care for them. Some of the nursing staff will be from their old 2 East unit. That was a huge relief and I did not have to deliver the petition to the U of U hospital admins. Of course the rumor was still going around that they were not going to do this and reassurance was one e-mail away. I would write one of the CF doctors and he was always willing to ease my mind. He and I agree that the rumor needed to stop going around because it was very upsetting and some of the CF patients talked about moving their CF hospital care to a hospital closer to them. The University of Utah Hospital is the intermountain CF care hospital and they get patients as far as Idaho and it is the only hospital in Utah that is trained to care for CF patients.

The miracle of organ donation

Tonya waited almost eight months for her lungs if I remember correctly. She was in the hospital longer than Suzanne was. I talked to Tonya more than I do Suzanne and so when I thought I was ready to go and see Tonya I thought I could handle what I was about to see. She was beautiful despite the tube she had in her throat. In fact she made that tube look good. Her cheeks had so much color in them. Her eyes so full of life. I was speechless. I started to choke up a little bit and she reached for my hand. I told her I was okay but in reality I wasn't. She knew that. I thought that I was going to lose another friend to CF and seeing her lying there with full color to her face was very overwhelming.

I had gone throughout my life thinking that birth was the miracle of life. Seeing Tonya and Suzanne changed my perspective. Organ donation is wonderful. It gives people a second chance. Wonderful people like Suzanne and Tonya. Organ donors and their families are my heroes. They give people a second chance at life.

The circle of life

I have noticed little signs when Jerid is getting sick and I will ask him if he needs to go in. Of course he'll tell me no and that he feels fine. I had to talk to him about doing that. I do not mind fighting CF. I do it willingly. It does get exhausting when you have to fight the CFer as well. Jerid knows that I know when he needs to go in but he still will try and put it off to see how long he can stay out. I understand that the hospital can be boring. I didn't like being in the hospital 2-3 days after having a baby and I could not imagine staying 10-14 days. I try to have plenty of things for him to do packed in his suitcase.

I count down the days that he would get out and hoped that he did not need a medicine change. They will change the antibiotics that the CF patient is on if the bacteria in a CF patients lungs is showing some resistance to the antibiotic.

We had talked about a lung transplant for him as well. He wants to do one. He is now a father and CF stats told him he would never have children. He had made a promise to the kidder doodles that he will be there on their wedding day. Jerid doesn't like to set goals or make plans because CF is unpredictable but he made that one promise to them and he has every intention on keeping it.

I got to make many new friends through Jerid and most have CF. It is amazing how they embrace life. They really did teach me to not take it for granted because there are no guarantees in life. I often chatted with one online and her name was Mary. She was wonderful! She helped me understand how Jerid would be so stubborn with not wanting to go into the hospital and would understand where I was coming from being a wife. Mary had set up a team for the Cystic Fibrosis Foundations Great Strides walk-a-thon. She named it Team Faith. Jerid and I signed up for it and I was excited to meet her face to face. A few weeks later she sent us an e-mail saying she could not walk and had to dissolve the team. The infection in her lungs was getting worse. She always kept a positive attitude that she was going to get better.

One night while I was a work I had gotten a text message from another friend to told me that Mary was passing away and they gave her maybe a few days. It broke my heart. I was at a loss for words and tried to hold back tears. I got up from my desk and called Jerid to see if he had heard the news. He had and got a hold of her mother who did confirm that she was not going to last till the weekend.  Broken hearted by  the news of losing my friend soon I still went back to my desk and worked but all the while I was watching the clock waiting impatiently for the time I could leave so I could go home and hold my husband. He was close to her. They went to CF camp together and shared many childhood memories which I loved to hear about. Her funeral was on a Friday and I could not make it. I did not have the time to get off work.

I had hoped things would have turned around for her. I had the honor to see what miracles organ donations do. Two other of my rockin' CF friends got a second chance at life. They finally got the long awaited phone call. They were getting new lungs. Suzanne and Tonya are two Cf patients and they are also very best of friends. Suzanne got her lungs first after being on the waiting list only about one month and she set a record of getting out the fastest after a lung transplant. That lady was super woman!

Our new life together

We would find things to do to plan the wedding. It really made the stay go by faster. At one point we actually got all the invitations stuffed and stamped. They were ready for the mail! WOOHOO!!! We had given the 2 East staff an invitation as well and they hung it up in their break room. I see it as they were Jerid’s other family and play a big part in his life.

Our wedding day came at last! I was so nervous. I had this insane thought in my head that I would walk out and Jerid would be gone. He would have changed his mind. I slipped a little bit down one step. I am not so graceful. As I gathered my cool from my little slip, I walked down the stairs and I saw him. He looked so handsome in is tuxedo.  The man I will spend the rest of my life with. I walked down the aisle arm in arm with my daddy and all I could see was Jerid. My soul mate. My handsome 65 roses.

Being a mother, as most mothers do, I have this "got to make them better" instinct. I get frustrated because I know I cannot make him better. I have this fear that I will wake up and he would be gone. His CF had taken him during the night. The thought haunts me daily and in my sleep. I could choose to let it consume be but then I would be wasting so many happy times with Jerid. That would not be fair to either of us or the children who have grown to love him.

I use to sit and think and at times I would get angry and sometimes I would cry. How could such a wonderful man have such an ugly disease? It doesn't seem fair but nothing in life is fair really. So instead of sitting around worrying about what's going to happen next with Jerid, I would sit and write. God knows that sitting around and making yourself a nervous wreck over something that you cannot fix or change is not good for ones wellbeing. These are just a few I have written when I sat down to write:

Blessed Curse

I had an idea from the articles I've read,

The thought of his last breath lingers my head.

Be by his side, cherish, honor and love.

I pray day after day to God above,

"I knew what I was up against when I said 'I DO!'

"Let us grow old hand in hand, us two!"

I know there's a chance this cannot be.

The very thought of it tears my heart from me.

So I sit here cursing damned Cystic Fibrosis,

And loving my husband, My handsome 65 Roses.

Life hope

A mother sits with a heavy heart

As her world starts to fall apart

She keeps vigil beside the crib

Knowing what lurks beneath her babes rib

She prays quietly with a heart full of sorrow

"Please God" she says, "just one more tomorrow"

She can't explain the pain or the hurt

She just sits and holds her life’s greatest work

Her babe has now grown to a man

There's someone new, he makes his life plan

He and his sweetheart will be wed

She will now stand vigil over his bed

A wife and a mother now share the same hope

They have each other to help them both cope

She'll hold his hand tight and make it through

She meant what she said when she promised "I do"

Bittersweet

An ugly disease and a beautiful man

To keep him healthy I'll do what I can

The first time we met he stole my heart

My goal, death and him, keep them apart

There's four he has now to tuck into bed

The son who couldn't wait for us to wed

Three daughters he promised to walk down the aisle

In the life I hope he has a long while

I know he and death will surely meet

In the end, sadly, will be bittersweet

Until then my sweetheart please do your best

When they find a cure is when I will rest

I'm with you my love cross my heart

I'm by your side, till death do us part

You're giving CF a really good fight

CF, I hope there's a cure in sight