Tuesday, December 17, 2013

CF Hurts...

CF hurts. That is the one thing I wish people knew or could understand. It hurts physically, emotionally, and spiritually.

Let me start with the physical. I ache every single day. Imagine coughing so hard your whole body tenses and hurts, so hard that you pull muscles and even crack ribs. So hard you get an instant headache. So hard you are afraid to eat for fear of only throwing it up later. So hard you can't control you bladder and pee yourself or even worse poop yourself because the meds that are suppose to control that aren't working right either. And now you have to clean yourself and whatever else you may have messed on all while trying to catch your breath from the coughing fit that caused it all.  Imagine every single breath you take hurting, hurting so much you take shorter breaths which only make matters worse and you have to use O2 because your stats drop and your heart rate climbs. Now imagine doing this several times a day. It all might not happen everytime I have a coughing fit, but it hurts everytime I cough. I also have arthritis and osteopenia caused from CF, which causes more pains else where. I take ibprophen twice a day to help with the pain, and when I pull muscles and it gets real bad I have to take muscle relaxers and stronger pain meds.

Let's move on to the emotional. I break down more than I'd like to admit. Those coughing episodes I just spoke of are exhausting. I'm a mom and wife, although lately I'm not very good at either. I sleep about 12 hours a day if not more. This is because of 2 reasons 1. My body physically requires more sleep to breath than most. 2. On top of that I also have narcolepsy which causes excessive sleepiness. I do have a medication to help me stay awake more often, but that causes weight loss I cannot afford to lose. Not to mention imagine having energy to do things but your body failing you at every attempt  to do things, you your stuck with all this energy to do nothing or fight your body doing so. So I don't take the med to keep me awake. Colton hates how much I sleep. So I'm left with the guilt of sleeping away my time with Colton that I know is limited because he is growing up so fast. Then there's the hurt of not having enough energy or air to go outside with him and play in the snow, make snowmen, go sledding. So I watch out the window and cry while he does these things with his dad or my mom. I'm also riddled with guilt of not being a good housewife. Brad works everyday at an unthankful job to provide a good life for us, but then he comes home to do the work I should be doing. Cooking, cleaning, laundry, all the things I use to be able to do. He does these things without complaint and completely forgiving to me for not being able to all while helping me to try and stay healthy. He calls everyday to check on me and worries about me relentlessly. I'm ashamed to say I'm not always nice to him. I'm terrible at being empathic to him or anyone really that doesn't have a grave disease when they are sick. I just think must be nice to only have a cold, to wake up and all that's wrong is your back or head hurts, must be nice to know after a while you'll be better and back to your life. I don't have that luxury as many don't. So here I am feeling bad for not feeling bad! Well sometimes I don't feel bad about not feeling bad. But for Brad I do, because I'm his wife and he should be able to complain to me without feeling like I'm just gonna tell him to suck it up, which I have said before. I break down the most when I'm sick, when I'm sick I get scared, when I get scared I cry, yell, and have been known to throw and break stuff. I'm scared I'm going to die, I'm not scared of dying, I'm scared of what my death will do to my family and friends, most importantly Brad and Colton. So I fight, when I feel like giving in when this disease is ravaging my body I fight, when I think I can't do another treatment I fight and do it anyways, when I'm covered in my own body fluids and want to scream, I say fuck you CF and I fight. I am almost always emotional drained from the battle that goes on between my body, my heart, and my disease.

Last but certainly not least is my spiritual well being. I was raised on Prayers, I am living proof to the power of prayer. I believe in God and I believe Jesus will come back for us all one day. My spirituality has not always been strong and I go through times of wavering in my faith. I think it's natural with all I go through to have those seeds of doubt sometimes. Then Colton will do something so profound I can't doubt Gods plan for me and my family. It all wears on me like a heavy cloak I can't take off, like I was cursed with this burden and I must carry it to my death. I don't know His plan for my life and more often than I'd like to admit I ask why, that answer has not come yet. Or maybe it has and I missed it. Either way I just continue to pray for myself, that I may be worthy of His kingdom when my time comes.

I'm sorry if this disappoints readers who are use to my usual positive attitude about life and CF. This is the truth of my existence right now and I will always be honest about that. I'm having bad days but it's not a bad life, and when it gets better I'm sure I'll have a more positive look on it again. It just gets hard sometimes to always keep that smile when the truth is all I want to do is cry.

Tuesday, July 16, 2013

Transplant Evaluation

As I wrote about in a blog back in September I have been seeing the transplant doctor at my hospital in Grand Rapids, Spectrum health. They have been following my progression, and for a while it was really unchanged. After January of this year it did change a little bit. I have not bounced back from a couple CF exacerbations like I typically do. Leaving my lung numbers to stay in the lower 30's, and also having more symptomatic signs of lung failure. After a couple months of still waiting to see what would happen, if I might bounce back up some, if it was just taking longer than usual, I decided that although I was feeling better, it still wasn't my baseline. Dr. Gergis had told me that if that was the case it might be best to start the process of being evaluated to be listed for a double lung transplant. There are a few more things other than just my lung function and symptoms that are leading us in this direction, a few being my weight (or lack there of), my increasing resistances to antibiotics, and increasing need for hospitalizations. So next week I will start the process of evaluation. This includes to start with meeting the whole team including surgeons, nurse coordinators, and pharmacy staff. A financial run down, where they go over my insurance and what will be covered. Then there is clinical tests such as PFT's, 6 minute walk, blood gases, right heart cath, echocardiogram, and psych. evaluation. After they gather all this information from my body and me the doctors compile and review it to decide whether I am indeed a good candidate to be listed for lung transplant or not. If I am and I decide its the direction I want to go and am ready they can list me. If I was listed the way my health is now I would likely have a low allocation score, or could even be on the inactive list. The allocation score is the system they use for lung transplants, the higher your score, the sicker you are, and higher on the list you are. The benefit of me being listed even though I am not sick enough to need lungs just yet, and would be listed with a high score or as inactive, simply put, being ahead of the game. If I suddenly became very ill and needed lungs it's much easier to increase my allocation score moving me up the list, rather than while I am sicker going through the process of being listed then or even in an emergency setting. I could also refuse lungs at anytime if
they were offered and I didn't feel I was ready. Whether I will be listed I don't know, am I willing to take that route need be. Yes. There are also other things that will be taking care of before I will be listed, those things are terms that I have personally. Those being my family being ready for it also. Colton is very anxious about me even seeing the transplant doctor, so me being evaluated has been a touchy subject for him. He knows I can die from CF and he knows I could die with a transplant and that rightfully scares him. I have spoke with the nurse coordinator at clinic and they are working on getting me some resources for him, this is new to them, having a patient that is young enough (because they are a new transplant facility) to have a school aged child that needs the support also. Thankful they can reach out to the Helen DeVos Children's Hospital for those resources for Colton. In the mean time I still fight CF like hell to keep my own lungs! As much as they suck and hate me and I hate them I'd  still like to keep them as long as possible.

Monday, June 10, 2013

My opinion on Sarah Murnaghan.

I don't know if you've seen or are following the story of Sarah Murnaghan, 10 year old cystic fibrosis sufferer who is dying from CF. She has been on the pediatric list (12-) for lung transplantation for 18 months and recently her parents waged a media war and petitioned to get her also listed on the adult list (12+). They achieved what they wanted and she was placed by court order on the adult list. You can read media reports on it here, here, and here for full details. For weeks now I have seen her story shared all over my friends facebook pages, I read all the articles that I seen posted and followed her story the best I could. Now let me say a couple things before I state my opinion on this topic. I do not pretend to be an expert on the subject, I know what I have read through the media about her story and about lung transplants through UNOS, Gift of Life, and other peoples experiences with it. Opinions are always going to vary and especially on hot topic issues like organ donations. In fact my Mom and I disagree on this case. Putting this into words has been a challenge for me over the last couple days, so bare with me if my thoughts seem jumbled or not put together.

I completely disagree with Sarah being placed on the 12+ list based only on a court order by a judge who has no expertise in the field, instead of a panel of doctors and experts on organ/lung transplantation. There are a few reasons I believe this and let me just start with the one that to me seems so obvious, her life is no more valuable than the person that might not get lungs now because she was put above them. No one persons life is more valuable than another. Now I know people are moved above others all the time on transplant lists, but that's based on medical necessity, not because they got court orders to be there. I can understand how that might sound harsh. Are children more precious? Absolutely! I am a mother so I can speak from a parents heart. If it was me I would want everything done to save my child also, but I could not do so knowing that it could come at another child's life. Which in her case it very well might. Could you look another mother in the eye and say my child is more worthy than yours? I could not. She was on the top of the pediatric list where she rightly belonged, and although they speak of it as the adult list it is 12 and older. So there are deserving children that are just 2 years older than her on that list as well, not just adults. The rules for the difference in pediatric and adult were set in place for clinical reasons by many doctors and experts in the field to be as fair as possible for everyone. There could be more complicated issues with a child being transplanted to young, than with an adult and that's why the rules stand as they do. Another issue I have with this is they will most likely have to modify adult lungs to fit her, which this is practiced in adult to adult transplants too, but I can't imagine to the extent it would have to be to fit a 10 year old. Why shouldn't a person who is just as sick but is a better fit get those lungs? If there was no one to fit them by all means try to make them fit for her or a smaller person. I believe the person that has the best predicted outcome based on need should get them first. Adults generally have better predicted outcomes, so should we start saying children get precedents simply because their children and it's to sad to watch them die? Another perspective is that even though adults are grown they are someone's child too, for a parent I don't think it hurts any less to watch you 20-30 year old child die any more than it would if they were 10. Some of those adults listed may also be parents to children themselves, do their children deserve to be parentless at the expense of another child's life. I just really don't like the way they went about getting what they wanted, it seemed very temper-tantrum-ish to me, Had this decision been made by experienced people from the UNOS/OPTN than I might have a different opinion. After review today they have decided that the rules will stand the way there are, but will start to review some children under 12 on a case by case basis, you can read about that decision here. There is a couple articles that also explain things from a different perspective that I thought stated pretty much my thoughts on it as well you can read those here and here.

It's not fair, CF never seems to be, nor is it fair to need to be on a transplant list. I truly wish nothing but the best for Sarah and her family, have and will continue to Pray for them. If you want to do something to help 1. Become an organ donor 2. Donate to CF research so we can find a cure so there's not a need for us to have lung transplants!

Sunday, May 12, 2013

Knowing when it's time to head to the hospital.

I have talked in other blog post about certain signs to me that I may need to go in for a clean out. Being tired more, not being able to keep up with household chores, getting short of breathe faster with things that don't normally make me short of breathe are some. Then there's startng to need O2 more than just at night, Brad telling me I am moaning at night, I apparently do this more frequently when I am close to a clean out. Now there is a new factor for me, Colton has started to get clues he picks up on as well that I might not notice, and tells me "Mom I think it's time for a clean out!" in his matter of fact way. Seems theres never a "good" time to go in, I mean to avoid it at all cost is the goal, but that just doesn't happen in my world. So when I start to think about it and when it would be a good time to go in, sometimes there's a time period where nothing major is going on that I can just get put away and get better for a few weeks. But most the time CF's timing is really crappy!

You get where I'm going with this don't you?!? It's that time all the symptoms are there, and worst of all I've had to wear my O2 almost all day every day since Friday. So I'm calling clinic tomorrow morning, they will probably offer oral anti-biotics, I will decline because 9 times out of 10 they don't work and I don't have time for that! I usually just tell them I need Iv's and they say "okay you know your body better than us" they set it up and I'm off and running for my 3 week clean out. So last time I was in in January it was horrible timing because Janet was in the worst battle fighting cancer. This time around it sucks too! My Great Strides for CF walk is Sunday May 19th! When I get a clean out I do at least 2 weeks in patient, that leaves me in the hospital the day of my walk one week from today, so my plan of action may change up a bit this time. I may go in and get started and then finish up on home Iv's, or I may go in and stay my 2 weeks and take a LOA (leave of absence) for those few hours that day than go back and finish up my stay. Either way I just can't see myself missing my walk, I  am the chairperson for this walk, I do almost all the work for it, and am pretty much the only one that knows how everything gets done that day! Would it go on and be as successful without me there? Yes I'm sure it would, but i just can't stand the thought of missing it, it's my baby! Either way it will be fine and life will go on, but as always I have to do what's best for my health.

Saturday, May 11, 2013

Mothers Day

Mom and I on the night of a lifetime! At P!NK's Truth About Love Tour concert.
One of thee best nights of my life!
Tomorrow is Mothers Day, the day we celebrate our Mom's for all they are to us and do for us, also the day I get celebrated for being a Mom.

Sadly I only get to celebrate my mother in law in memory, I sure do miss her. I swear I heard her come to my house the other day. The way she always did, opened the door and calling out "Hello" I would stop my therapy (because she always stopped by around the same time of day I did my treatments), say "Yeah I'm home" she usually had something to drop off, to tell me, or just nothing really. I could have swore I heard her last week, even stopped my therapy before I realized, that wasn't possible, that she was gone. Or trying to buy a watermelon at the grocery store, there I stand with wet eyes, people probable thought I was crazy. But the thing is she always brought me watermelon, and it was always really juicy, sweet, and delicious! I don't know how to pick out a watermelon, I had to have my Mom do it. It's the small moments like that that hit the hardest. I miss her and I miss those moments. She was no doubt one of thee best Mom's I knew and was just as great of a mother in law. Happy Mothers Day Janet! I bet it's a great celebration where you are.

Having lost Janet and worse yet watching Brad lose his Mom has given me an even deeper appreciation for my Mom. I have always appreciated my Mom, but when we lost Janet I almost felt guilty because I still have the luxury of having my Mom, unlike Brad. Aside from Colton and Brad my Mom is my world. She is ALWAYS there for me regardless of what I may need. She is more than my Mom she is my best friend. I can't imagine what it must have been like to raise me. Being giving a gift of a little girl and then being told she wouldn't live through elementary school, all while raising my older brother. That must have been heart wrenching. I only know what it's like on this side of CF, although I know what it's like to be a mother, I don't know what it's like to be the mother of a CF child. I can only imagine, because seeing Colton sick when he was born and almost losing him, and then when he had to have his appendix removed, and surgery for his broken arm. But once Colton got through those things we got to move on with our life, he got healthy again and gets to be a healthy child. But my Mom and my Dad had to work so hard to keep me healthy everyday, had to watch me get sick, and spend many nights in the hospital. My dad was the only one that worked, they had one vehicle. My mom's journal has writings in it about not being able to get to the hospital to see me for 3 days! Can you imagine leaving your baby in the hospital in the hands of the nurses and doctors for 3 days without seeing her?! My Mom had to, they didn't let you stay at the hospitals with your children back then, she had my brother to take care of, and at one point there was a snow storm, and the one truck they had, the lights had broke. I can only imagine what trying times it must have been for them. But when I was healthy and home they took care of me, but they also let me be a kid and raised me as if I was going to live to be old and grey. No special treatment, no pity parties. I had my big brother to play with and when we weren't fighting we were best buds, we'd take turns playing Cars and Barbies, he'd play Barbies with me for a bit and then we'd play cars and trucks out on the sand hill (I think we played cars and trucks more though)! I can't imagine what it was like for him to have to deal with having a sick sister. Later in life we still play with cars and like to go to the sand hills and play in trucks, only now it's the big kid toys! My Mom was always so good at playing dolls and Barbies with me. I remember when I was in about 1st grade and I came home from school and she had all my Barbies (I had A LOT) sitting up around the dinning room table, with all there hair combed and dressed nice. I loved that. She would do the same with my Cabbage Patch Dolls too (I had A LOT of those too) she'd let me take pictures of them all nice. She taught me to blow a bubble with my gum. I had a great childhood. My parents didn't have a lot and we only got toys or gifts on holidays and birthdays (and not like today for EVERY holiday only Christmas, Birthdays and Easter!). But when those days came they were the best ever! I remember when I got in school my Mom went back to work at nights, so Dad took care of us at night and Mom during the day if we weren't in school. I also remembered I hated it, I wanted my Mom!! I was a Daddy's girl too though maybe I'll write about him on Fathers Day. She could be a mama bear too and came to my defense on more than one occasion. One I remember well, I was in the hospital and only about 10, we shared rooms with others at the time. I was sharing a room with a baby, the mother had left me, her other daughter who was maybe 8 and the baby in the room alone to go to the cafeteria. While she was gone her older daughter was going to take the baby out of the crib, I thought she shouldn't do that so I called the nurse. When the mom got back to the room she pretty much attacked me verbally and told me I had no right to tell her daughter what to do. My parents had left not long before all this happen, and they lived about 1 1/2 hour away from the hospital, no cell phones back then, so I had to wait until they got home and called me to tell my Mom what happen, she was not happy and after speaking with the nurse decided that because it was late they would deal with it in the morning. Well when my Mom got there she laid into that other mom like nobodies business, giving her the 3rd degree for verbally attacking me for trying to keep her baby (who was hooked up to all kinds of stuff) safe. I never felt so loved and protected in my life! We promptly moved to a new room. You don't mess with my Mom and you sure as heck don't mess with her kids. My parents always told us, if something happens and you tell us and it's the truth you'll have our full support, and they did! If we lied though and they found out after having trying to defend us, we were in hot water! I guess I'm rambling now, but I truly had thee best Mom growing up. Even through my teen years we stayed very close and she gave me some great advice that stuck with me and made me the wife and Mom I am. She doesn't give herself nearly enough credit sometimes. In the words of P!NK "She's F*#@%^g Perfect, to me" There's only one thing that's better than having her for my Mom, and that's having her be Colton's Grandma!

Happy Mothers Day Mom! I love you more than you could ever know.

Monday, April 29, 2013

Loss of a loved one.

Janet Ann Purchase
RIP 12/21/51-4/21/13
I had recently wrote a blog about the battle my mother in law was having with cancer. Sadly she passed away last Sunday April 21st. I had felt in my heart as she was slowing slipping away that I wanted to give a eulogy in her honor at her memorial service. So I'm going to share that here on my blog.

Janet was my mother in law; I am married to her son Brad. Often times we hear of stories of mothers in law being over barring, or never approving of their daughter in laws, with the logic that no woman is good enough for their son. That was not the type of relationship I had with Janet. If you don’t know about Brad and I’s courtship, it was short. We met, married and had Colton within one year! I’m not so sure Janet and Jerry were always on board with how fast things happen with us, but they always supported us and they welcomed me to the family with love and support. Janet was a care giver by nature, she wanted to take care of you, whatever it was anyone may need she wanted to take care of it. She has been there for Brad and I countless times to take care of Colton while I was sick or in the hospital. Often calling me and asking if she could take Colton to do things with him, like taking him to Anderson’s Orchard to pick apples, or to Easter egg hunts, she just loved spending time with him and us.  You didn't have to know her long to know that she would welcome anyone with open arms, love, and food! Everyone knew her in town, whether by her bright blonde hair or for the one who talked a lot that you couldn’t get away from in the grocery store! If you wanted to know something she most likely knew about it, and she knew and told you stuff you didn’t want to or care to know about as well! Someone in the family told me she had the nickname “the newspaper”! She knew things before anyone else and she loved to talk. She was a socializer, she could meet a person she never knew before and know their life story within minutes, and they too would know hers! I often say she gave her gift of gab to Colton, because he is the exact same way, and in her last days she claimed that he was worse than her! You could often find yourself on the phone with Janet not being able to get off, that was just who she was, a talker. Food was often her way into homes and hearts, she was an amazing cook! She was always making food for one occasion or another. She would often offer to make something, and then complain about having to do it, but we all knew she loved doing it!  She would often make us dinner and bring it down, or we would go to dinner at their place. I’m not sure I could have made it through some events without her bringing food for me. When Brad and I first married and were starting out she would bring us groceries’ on a regular basis and bought Colton clothes too. That leads me to another part of Janet, shopping! She loved to shop! Grocery shop, clothes shop, yard and garage sale shop it didn’t matter she could shop anywhere! Boy did she love a sale; she would buy something she didn’t even need simple because it was on sale! She would often say “well someone can use it!” But I loved that about her because we were about the same size usually so she would get me stuff too! She has a stock pile of groceries in the basement which is also very useful when we would run out of stuff since we live only about 2 miles away. We could and would often call and ask her if she had an ingredient we needed and she usually would and if she didn’t, she would volunteer to go get it and bring it to us. Janet loved to fish and hunt, and often out fished and out hunted the boys! Her and Jerry spent hours and days on the lakes fishing, often times coming home with enough fish to feed a small army.

It seems I could tell you a lot about Janet, but in reality I only knew her 1/3 of my life, a short 10 years. In comparison to a lot in this room that have known her their whole life or most of it, that is a small amount of time. It was, although plenty enough time to love her and appreciate all she has done for my family and I. So today I am going to celebrate her life and all that she was to me, finding Peace in the fact that she has gone Home. Her mortal life may be over, but she is only just beginning her eternal life in Heaven. I will rejoice in the fact that when I join her again, she will be there waiting with the same welcoming, open arms, and love she showed me here on earth.

I love you Janet, will miss you dearly, and may you fly high as an angel to watch over us.

Wednesday, January 30, 2013

What I do when I'm in the hospital

What do you do while your in the hospital so long? That's a question I get a lot. So I thought I would try to put a little list together of what I have done during this 2 week hospital stay.

  • 1,680 Minutes of vest treatment
  • 84 Aerosol medications
  • 42 meals, 56 snacks
  • Slept approximately 150 hours
  • 56 Doses of Iv meds
  • Taken 644 pills
  • 7 showers
  • Read 2 books and 4 magazine's
  • Watched 10 movies and about 114 hours of TV
  • Wrote 6 blogs
  • Spent hours on facebook and pinterest
  • Had visits from Aunt Charlene, Uncle Ken, Lori, Mom, Dad, Colton, Brandon, Sarah, Katie, Megan, Alex, Paul, and Jamie
  • 42 Vital checks
  • Walked 180 minutes

So although it seems I have all kinds of time on my hands, I am actually doing a lot of sleeping, eating, and treatment. Do I get bored, absolutely, especially the last few days when I feel so much better. But to feel so much better it is worth it.

Monday, January 28, 2013

Inspirational, who me?!

I get told rather regularly that I'm inspirational. The definition I found for the word inspirational is:

 1 a [noncount] : something that makes someone want to do something or that gives someone an idea about what to do or create : a force or influence that inspires someone.

I find this very flattering and a true compliment. I also find it hard to understand why they would say that I am. I once asked a friend that had told me that, why she thought that, her response made sense and helped me understand why someone might feel that way.

Me:   I'm not sure how I have been an inspiration to you though, but thanks!

Her:  Really?!? There are so many things that could be limiting you, Jamie. But you refuse to be limited. You are a fighter. I've read some of your blogs and they leave me in tears. You have a daily battle in your life. Sometimes I allow things in life to get me down, and then I'll think of what other people have to deal with and realize it could be worse. Statistic wise, I don't think you were supposed to have a baby, but look at you now! You have a precious little boy! How can that not be inspirational?

Another friend tells me sometimes "At night when I go home and I'm too tired to even want to brush my teeth, I think about you and how you have to do an hour of treatments before even thinking about brushing your teeth and going to bed!"

So I thought about it and realized, that yes I do have things that could limit and do limit me. I am a stay at home Mom and wife (to an amazingly supportive husband), I have every single responsibilities that a "normal", "healthy" mom and wife has. I also have CF which requires my constant care as well, with hours of treatments, and tons of pills, and yes I have to do hours worth of treatments before thinking about brushing my teeth and going to bed (I don't floss regularly...okay never really, and I go to the dentist and the hygienist is all like you really need to floss, and I'm thinking lady ain't nobody got time for that!). The thing is to me I'm just a "normal" woman, mom and wife. I have been doing CF my whole life, I don't know what it's like to not have CF, not do treatments, and not take pills. This is my normal. So when someone tells me I'm an inspiration, I think, really? I'm just living my life like a regular person. This I think comes from my parents teaching me growing up that no matter how bad you have it there is always someone worse off, fighting a harder battle. That's how I live my life, always have. Another thing I was told and taught was, yeah you may have been dealt a bad hand, but that don't mean you can't play the game, you play the hand your dealt. I'm thankful for the life I have CF included. Does CF get me down sometimes, yes, it's hard sometimes, but there's so much more to my life than CF. If CF ran my life and mind all the time I would drown in it. One of my favorite quotes is "Love your life, love the life you live" I love life and I love living my life! Life is so precious and taking any bit of it that I have for granted would be ignorant.

My blogs, facebook posts, and videos are never intended to make people cry or feel sorry for me. I write and make videos to educate others about CF and what it is, and is like living with it. If in my efforts to raise money and awareness for CF, it has brought some to appreciate life a little more and be thankful for what they have or don't have, than yes I guess I can accept that I might be an inspiration.

Monday, January 21, 2013

My Married family

When some speak of their in laws it isn't always because they love them or even like them, you hear horror stories of the dreaded mother in law. My experience with my in laws couldn't be farther from that, I absolutely love mine!

I have always liked my in laws, Janet and Jerry, since Brad and I got together. I was always afraid of what they thought of me, meeting their son, getting married, and having a baby all within a year! They must have thought we were crazy!! I think I remember Jerry asking Brad at one point if that was what he really wanted to do, was marry me, and we were told by mine and his parents don't just get married because your gonna have a baby! But we knew we were soul mates and would spend the rest of our lives together.

I know now that they absolutely love me! Like most couples starting out Brad and I didn't have a lot of extra money. Janet would always be bringing over groceries for us, or would give us a little extra cash to go out to eat. She has always bought clothes for Colton that she either found on sale or at a garage sale. If you know her you know that she is one of the most giving people you could meet. They both have always been there for us, and most parents are for their children. They are always willing to take Colton when I'm in the hospital or even when I'm not he loves spending time with them. We are a very close knit family.

You can imagine how devastated we all were in August when Janet was diagnosed with Kidney and Brain Cancer. It was followed by brain surgery and having her kidney removed, and through the grace of God came through those surgeries with flying colors. Unfortunately it was short lived. In December she became sick again, and after a CAT scan in January they discovered another tumor in her brain. After a MRI she was referred to Henry Ford Hospital in Detroit where she seen a neurologist who presented her case to a panel of 25 neurologist and oncologist. They then called and said she would go down again for a PET scan this week. They also said she will have to have brain surgery again, we don't know when yet, and some form of radiation. There are several different types of radiation they can do, we don't know which one it will be yet. She was admitted to Midland again on Thursday with a bladder infection, she was very nauseated and throwing up all the time for a few days while there, but that has gotten better and she came home yesterday. She is very weak, especially on her right side, her speech is slurred, and she is sometimes confused or can't focus. This is all symptoms from the tumor. It's hard to see such a strong woman look and feel so weak. I have faith in God she will return to the strong, can't hold her down woman!

I didn't even mention my sister in law Shannon and her husband Phil! Shannon is going through so much being there and taking care of her mom and dad. She still texts me to check on me, ask what she can do for me at home, if Colton is taken care of, does she need to make Brad lunches just telling me if I need anything to let her know! She picked up Diesels medicine for us, you just can't ask for better. And Phil, he's from the south with a thick southern drawl. He chatted with me on facebook for a bit the other night, and the first thing he said just put a smile on my face "Hey sugar" and I read it to myself in his voice :) lol It's just the kindness of being there, chatting with me, knowing that they are there if we need anything, and all while going through one of the hardest things there is.

Brad's cousin Lori has also been a blessing, she has flown home twice from New York to be with the family.  She has been a tremendous help, because sadly she came through cancer with her husband. Knowing how things go, and processes that need to be taken is very useful. Having her there to listen as well and give feed back has been great. She is also hosting a benefit in her hometown for Jerry and Janet in the next month or so, to help them with there expenses. Taking the time to stop and see me here in the hospital in Grand Rapids when she flew in on Saturday. She is a beautiful soul, and I am blessed to have her in my life.

There is so many of Janet and Jerry's family that are truly great people and I am so happy and blessed to have married into such an amazing family.

Saturday, January 19, 2013

A plan of action in place!

It is my 3rd day here in the hospital, so far everything has gone pretty good. I did have a headache yesterday and some nausea that was kinda miserable. I talked with Dr. Fitch yesterday too, he said my x-ray showed infiltration in my left lung, and my blood work was all in "my normal" range. I asked him about doing the desensitization to the bactrum now or wait until my most resent sputum culture comes back to see if the results yield better susceptibilities. He thought it was unlikely with my history of Resistances that my new cultures would change enough to make a difference in the course of treatment. Our plan is to now move forward with the desensitization tomorrow morning. I will be given small amounts of bactrum over the course of 8 hours, if each dose goes with no reaction I will remain on it for probably 3 weeks. If I start to have a reaction with any of the doses they then go back one step and start again. It is successful with bactrum, not as successful as a penicillin may be, but Dr. Gonzalas feels I should do good and have success.

So I will continue my treatment plan and after the desensitization hopefully I will be on Zosyn, Bactrum, and Inhaled Colistin. I will probably be here a couple weeks, that will include lots of vest treatments!

Wish me luck :)

Friday, January 18, 2013

You know you have CF and are in the hospital when...

This is kinda inspired by my friend Jenny over at My life as a Livingston who wrote this blog a couple days ago that was hilarious and spot on! If you don't read her blog already you should she's a great writer and really funny.

So you know you have CF and are in the hospital when....
  1. You tell the nurse tech to zero the scale first and to measure in kilograms not pounds.
  2. You request a room by number based on the window space and view.
  3. You tell the on call doctor what meds you will be taking, the doses, when you will be taking them, and for how long.
  4. All the nurses on the floor know not to wake you before 10am.
  5. You bring a full size suitcase and at least 2 other large bags for your stay and still somehow manage to forget something.
  6. The nurses know you by name. (I love my nurses on 6 South at Spectrum in Grand Rapids)
  7. Instead of calling the doctors first when you need to come in you text you nurse who is also your friend and tell her to save you a bed.
  8. You also know the cleaning and transport staff by name.
  9. You know the menu by heart, Tuesday lunch Lasagna, Thursday dinner beef tips and noodles, Friday breakfast cheese omelet. Because in the 4 years I have been coming here it has not changed!
  10. Last but not least you don't wear a hospital gown and people look at you strange when you leave the floor, because your pushing an IV pole but look like a normal healthy person!
I could probably and will probably think of more. Can you think of some? Post them in my comments!

Thursday, January 17, 2013

Admitted to Club Med AKA Hosptal

If your a facebook friend you already know I'm in the hospital and you also probably know the timing could not be worse. My mother in law is fighting cancer and some other nasty stuff that has come along with it, including a recent bladder infection that has landed her in Midland hospital again. She will be having another brain surgery sometime soon, but can't while she has this infection. She also has gall stones but I don't think they are bothering her so they will just leave them be.

Coming into the hospital is pretty routine for me. I normally don't have too many issues putting my life on hold for a few weeks to get myself feeling 100%. This time has been very hard. I tried to take oral anti-biotic at home for 2 weeks hoping that would put whatever was stirring in my lungs to stop, it didn't work. It started with me just not feeling great, I wasn't feeling really bad. Then one morning while doing my therapy I started coughing up blood, not a lot, and it is common in CF with irritation from coughing or infection. Then fevers started to come in the mornings and at night unless I took ibuprofen every 6 hours. The blood would come and go through out the past 2 weeks along with the fevers. Yesterday I woke up feeling pretty crappy, had a fever and was coughing up blood again. I finally said this isn't working I need to go in.

Over the past 2 weeks I had mulled over several ways to avoid this and reasons I wanted to avoid it are legit!

Reason 1- Wanted to be home for Brad and Colton and the rest of my married family as they are going through the hardest of times right now.

Reason 2- Scared coming in a hospital full of sick people could actually make me sicker, don't know if you've heard but there's a flu epidemic!

Ways I thought I could avoid it.

1- Oral anti-biotic (tried, didn't work)

2- Do home IV's. This question has been posed to me in the past and again today. If I ever do home IV's. The answer is yes I do every time I am on them, but only for the last week of treatment. I have always stayed in the hospital for at least 2 weeks to start with. There are a couple reasons for this.
  • When I start IV's I always feel worse before I feel better, the meds make me feel like I have been hit by a truck, all I do is treatments, eat, and sleep.
  • My IV schedule is usually an IV anti-biotic every 6 hours, which usually equals out to be 6am, 12pm, 6pm, 12am. That schedule leaves me exhausted.
  • I don't "stop" life to take care of me. I am a mom and a wife, if I was home it would be very hard for me not do anything and rest. I have a great support system at home thankfully, my parents can take Colton and take care of him when I'm in here, but it's not as easy to ask when your home.
  • I have tried to do at IV's home only in the past when Colton was a baby, I never felt I got 100% out of the IV's because I just wouldn't rest.
Ultimately this time around depending on how things are going I may cut my 2 weeks in house to 1 week in and 2 weeks of home IV's. When it comes to my health I tend to be selfish, because if I don't take care of me I can't take care of others. I will always do whats best for my health and well being, it's not always easy, and has been extremely hard this time.

The plan for my stay right now is to get results from my sputum culture and x-ray and go from there. I am resistant to a lot of anti-biotic and allergic to many others, it leaves very few that my bugs respond to. So I may have to be desensitized to a med I'm allergic to. It's just wait and see right now, in the time being I'm continuing the oral Cipro and starting IV Zosyn. I will update when I can.