In the end

With tears in my eyes and a heavy heart this will be my last entry about being a CF wife. Jerid filed for divorce and it was final Jan 10th. I'm not sure why but it is what he wanted so I wish him nothing but luck in life and in his health. I will still be involved in the CF world for those who need and want my help. Some CF patients have removed themselves from my Facebook. I wish them nothing but the best! :)

One year and two months later...

Well a nasty cold was going around and Jerid caught it. It went right to his chest so his over a year streak was cut short.

We were both disappointed but the cold dropped Jerid's PFTs down 10% within a month.

I couldn't be up there with him the whole time this visit so he did get bored a lot. I would go see him and bring the kids with me. They love visiting him while he's there. My Abbi and Zoey were his little nurses.

This was the first time he was on the new floor and so we both watched like a hawk.

The new CF floor was awesome! They had things up there to keep him occupied. The view from the window was cool... Especially at night. The nights I did stay up there I would lay on his chest, listen to his heart beat and look out at the beautiful view.

Jerid seemed in good spirits despite having to be in the joint (hospital). At one point he did lose his voice but got it back within a few days.

The nursing staff was very vigilant. They were always making sure he didn't need anything. He got the best care from them and I could not be happier :) He did have his favourites but they all did a great job.

At one point I ran and got him some sushi. The hospital serves it on Thursdays and he was craving it LOL

When the day came for him to go home, he was ready. I pulled the needle from his port and we sat and waited... And waited... And oh here comes the discharge papers! WOOT!

It's nice to have him home. My ex husband Rick and his wife Stacy threw him a BBQ the same day he got out! He had a blast! Jerid and Rick made plans to go fishing and hunting. LOL I hope this blog finds everyone doing well. Please remember all CF patients in your prayers. Some are not as lucky as Jerid is... Please donate to the Cystic Fibrosis Foundation, because everyone deserves to breathe easy...

Almost 4 years!

Our 4 year wedding anniversary is coming up and Jerid has been out of the hospital for over a year now! It doesn't seem like it's been that long. I guess we're still in the honeymoon stage ;)

He went with his dad this weekend to go snow mobiling in Idaho. It's hard being without him not knowing how his health is and if he's been doing his treatments. I miss him BUT he comes back today and I'm SO excited!

We got word that the VX-770 should be out next year! I'm excited for that to come out. Jerid has the CF gene that it targets. I'm really curious to see how well it'll work for him. What if it'll make him stay out longer?! Oh that would be so awesome! I'm almost in tears at the very thought of we are that close to a cure. I'll be able to grow old with my husband,  hand in hand!

Jerid does maybe 1 treatment a day now, if that many. He's feeling so good that he thinks he can skip out on some of them. That upsets me. Why gamble with your health because you "feel good"? CF is something that needs to be worked at.

My sister in law, Alicia has been a HUGE help lately. I have not been well lately. Jerid, Alicia and Shondell have been big helpers in my life. It's really a comfort that my husband and 2 that I claim as my sisters are so supportive. They even help with Jerids health care. It's a relief that they have my back when it comes to his health because he's stubborn...

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.