What will be, will be

I do believe that the insurance fiasco has been cleared up...what happened was we got new insurance cards effective January 1, 2012.The policy is the same but all of the numbers on the card has changed. It's my understanding that usually just the member ID number changes. In our case, that changed but so did the plan number and the code number. We presented our new card when I was hospitalized a few weeks ago but apparently they only changed the member ID number and didn't bother to check the other numbers. So it was coming up that I had no insurance. Lovely. Hoping that doesn't cause me a headache when the bills start coming in...I really hope they re-ran them with the correct numbers. I guess we will see. The lady doing the insurance check for transplant told me that it could be a 10 day turnaround time because it still has to go to a case manager and then to clinicals (whatever that all means)...so with that being said, I'm not sure my case will be presented tomorrow or not.

I of course was pretty frustrated last Monday when I wasn't presented. I just hate that I'm told something will happen and then it doesn't. I was told if there was an issue with insurance they would get back with me and when I heard nothing, I assumed all was ok and good to go. I guess that is what I get for assuming! I was still feeling pretty horrible from being sick too, so that didn't help my mood any. Another thing that really got me down was that just a day before this, I had seen one of my "lung friends" had passed away. Her first name was Kristi and she had CF and was listed at the Cleveland Clinic. She was such an inspiration...she was always optimistic, she had a bubbly attitude, and just an all around good person. She had been listed, then had to be off the list for awhile for some other medical issues, but was just re-listed again around Christmas time. It was my understanding that she was at the top of the list. She was so excited to have her second chance at life and to be able to breathe again. When I was in the hospital, she had messaged me a few times telling me to hang in there. She never mentioned not feeling well, so I don't know how she was doing at the time. I was floored when I saw she had passed. She was air lifted to Cleveland and passed away soon after. My heart just broke for her and for her family.

I would like to think that I will be presented tomorrow, but I doubt it. I guess this is why my transplant coordinator told me that they would probably just wait until I go up next on the 15th until they would present me again. (so, actually the 20th I would be presented) So what will be will be. I've been feeling pretty decent the last 4 or 5 days, so that helps with thinking I can push through until then.

Last Monday when I was feeling really down about not getting listed, Jenny Pleiman, one of my very good friends and one of my biggest fans sent me an inspirational quote that I just love and had to share. It read:

"If God answers your prayer, He's increasing your faith.

If He delays it, He's increasing your patience.

If He doesn't answer, He has planned something better."

Through my illness I've definitely learned patience. I'm hoping that He hasn't answered my prayer yet because He has planned something better....a miracle of no transplant would be nice! ;) I guess we will just have to wait and see if I wrap myself up in that cocoon and transform into that butterfly! My little caterpillar feet that I thought were one step closer to getting into that cocoon are just in limbo right now. Just picture me tapping my caterpillar feet....waiting...patiently...

"Don't worry about anything; instead, pray about everything. Tell God what you need and thank Him for all He has done. If you do this, you will experience God's peace, which is far more wonderful then the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." ~Philippians 4: 6-7

-You will feel God's presence.

-You will begin to see with God's perspective.

-You will hear God's voice.

-You will sense God's love.

Gun Raffle

I had posted a few days ago in "ways to help" about a gun raffle that the wonderful co-workers of Doug's at the Sheriff's Department is putting on. I "jumped the gun" (teehee) a little as all the info wasn't available, so I deleted the info from my post. I just got the official go ahead to post. The tickets are now available!

The types of guns again are: 410 Moasburg Pump Shotgun and a Ruger 10-22.

The drawing will be on February 25th at 12:00 noon at Cope's Distributing. You need not be present to win, however, your presence is encouraged to simply say "Thank You": to Cope's Distributing for the donation of the guns and opening their establishment for this worthy cause! Come check out their store and see what products they have to offer!!

Tickets will be sold from now until sold out; or shortly before February 25. If you would like tickets, or more information, you can contact any member of the Sheriff's Office, or Shawn at 459-0161.

Discouraged

I waited all day for the phone call from Cleveland. I truly thought that this would be the day that I would be listed. Last time they had presented me I got a call fairly early in the day...so by 3 pm today I was concerned I hadn't gotten a phone call. So I called and left a message on the transplant coordinator line and I also emailed one of them.

About 5 pm the phone in the kitchen rings (our "home" line which is a cell) but there was no way I could make it to the phone in time to answer. Alexa brings it to me saying it was Cleveland but she didn't get to it in time either. I listen to the voicemail and was told that my case wasn't presented today because I didn't have insurance clearance. What?? I had insurance clearance before. We got new cards with new numbers in the mail last month to take effect January 1. We had given this card to Cleveland when we were up there last week and I also spoke to 2 different people on the phone about it. I thought it was all taken care of. I thought all I had to do was get another Hep B shot and pneumonia shot and all would be good.

So the message said that I wasn't presented because there was no insurance approval. So since I am coming up February 15 they will wait and present me after that because insurance should be cleared by then. I don't think that is good enough. That is a whole month!! And I should hope that insurance would be cleared  by then...it should be cleared now. I'm so mad!! It seems like I get a little bit of good news or hope and then it's just shot to pieces. Waiting a week is torture...how am I going to wait 4 weeks? I emailed her back to see what we can do about getting insurance cleared so that I could get presented next week...that 4 weeks is an eternity in my world.

I'm trying hard to be patient. I'm trying hard to accept what is given to me. I thought I was doing pretty well at these things. I just want to get better and I am just so frustrated and discouraged and disappointed really. This whole illness of mine has felt like a bad dream. I feel like it's been an out of body experience that it's not really happening to me. I'm not really sick...am I? For so long the doctors had no clue as to what was going on with me and so it just feels like they still don't know because it feels like I'm not getting any help at all. What does it take to be heard???

Ways to help

For those of you that know me, it's hard for me to ask for help. I really think it's hard for any of us to ask for help when we need it..whether we think we need it or not. I know it's a pride thing, you don't want to seem helpless and that you can't provide for yourself or your family.

Over the course of my illness we have had soooo much help from so many people that we just can't thank everyone enough. Whether it was helping out with our kids, meals, prayers, cards, gas cards, meal cards, donations, whatever it was has been a tremendous help to Doug and I. Having worked 2 different jobs at school and photographing for Bella Baby, both places of work have helped us out above and beyond what I ever could imagine. Doug's co-workers have all helped out tremendously too and the generosity from others just keeps coming in. (He tells me that his co-workers like me more then they like him! lol!)

With this in mind, people are still asking what they can do to help. I would just like to add a few things here to my blog of what is currently in the works. If you would like to help out in some way, that is great, and if not, that's great too. :) (like I said, hard time accepting help, haha) **SEE BELOW FOR MORE INFO ABOUT THIS**

I am hopeful that on Monday I will be officially listed for lungs at the Cleveland Clinic. When I am listed I will have to be ready at pretty much a moments notice. I will get a number and the higher the number the sicker I am and the higher on the list I am. They also have to match my blood type and my body type. So while I may get listed Monday it is anyone's guess as to when I will get lungs. It could be within a day or it could be years.

I do have insurance through Doug's work, but only so much is covered with transplant. There will be many out of pocket expenses that we will incur. One of the major expenses we*might* have to have is a plane ride there once I get the call. This is because we live so far away. We should be ok to drive, but there is a possibility that we cannot. I have a friend that knows someone that has offered to fly me to Cleveland and so I think that this is covered...yet if the weather is bad, or something else would happen to go on then it is possible I can't use him and would have to use Cleveland's jet which would be about $7000-$8000 out of pocket. Once I do have the transplant and I am released from the hospital I will have to live within an hour from the clinic for at least 6-8 weeks. So lodging, food, and gas are just many of the things that will not be covered. There are also some devices I will have to purchase to use for my lungs that I was told will not be covered by insurance, and then there are all of the lovely medications that I will be on for life. We were told to expect at least $20,000 out of pocket for transplant; could be more could be less depending on how I do. Regardless, money will be used for medical expenses whether it's for medications or for future trips to Cleveland because I will remain going there for follow ups frequently at first and then for the rest of my life as well.

With that being said, there are a few things going on to help raise some money for my transplant. The first one is a wonderful website that a wonderful friend has put online for me. Jenny Pleiman, my Bella Baby Photography manager has one of the biggest hearts and has rallied to help raise money for my cause! She has been amazing and I love her! :) If you would like to donate online, the website to use is: http://www.giveforward.com/thejourneyofkarathecatepillar?utm_source=facebook&utm_medium=fb_wall&utm_campaign=user_vanity_page

I do have an account set up at Second National Bank. So if you would like to donate at one of the area branches, my account is named "Kara L Didier Benefit Fund".

I feel my caterpillar feet ready to twirl up in that cocoon....

Home Sweet Home

Finally got home late last night. I didn't know if I would be going home, but I saw one of the transplant doctors about 4 pm and he said I could go home. We didn't actually get out until after 6, so it was a late night. They treated me with antibiotics and steroids and like I had pneumonia. The air found in my chest cavity was explained that I had been coughing so much and irritating my airways that my bronchioles were "blowing up" and thus seeing the extra air on the scans. On Friday I had to go for a barium swallow test to make sure my esophagus wasn't leaking air. It wasn't. About an hour after the test my right cheek started to swell and before long my entire face, and neck was about twice the size. It is uncomfortable, but the doctors said it is harmless and will go away on it's own. May be a few days, a week, 2 weeks. Hopefully soon because I look horrendous and it is uncomfortable. Not only that, but as we were driving home last night I tried to lie down and sleep. How I was positioned made my left eye go swollen shut. It's better today but my left eye is half open, my right eye is fully open, my face is 2-3 times normal size. The kids didn't know what to think when they saw me last night, haha!

I asked the transplant doctor if there was anything to help relieve the pressure in my face and he said not really but that I could up my oxygen and that should help bring it down quicker. They did a quick walk on me before I left to see what amount of O2 I should be on...I was at 2L, now I am at 4L. Hopefully I'll start to feel a little better and can come down from that amount. One of the transplant coordinators came in the room to tell me that she wanted to call me tomorrow (today) to make sure we had everything covered so that my case could be presented next week. She said, "I want to make sure we have everything so that we can get you listed." So, I'm taking it that I will get listed...at least I sure hope so! She did call me today and we will go back up for appointments the week of Feb.13. Not sure what day...she wasn't sure at the time, but will FedEx the papers today so we should have them tomorrow.

It was so nice to get home to see the kids. They had a banner for me and balloons. I was so out of breath and so tired (and funny looking) that I didn't seem as excited as I wanted to be. :( They were so sweet though and it was good to give them hugs and kisses. It was a little bit of a rough night last night. It was good to be home,but scary I wasn't in the hospital in case something happened. But I made it through and today was a little bit better. Hopefully the rest of the day goes well and I can get some rest tonight.

Update (and cabana boys...)

Woke up this morning not feeling the greatest. I slept ok but still have a lot of mucous that I just can't get out. Nurse gave me some nausea meds that didn't work too well so got more and those made me loopy. They also made me feel like I just can't do this. If I can't handle this upper respiratory infection and feeling this way how in the world am I suppose to get through a double lung transplant? Aye! I wish life would just go back to the way it were. I know that there is no such thing, but wishful thinking I guess. It doesn't help that I have been in some sort of hospital since Tuesday night either...not really seeing the light of day....going just a tad stir crazy. I don't feel much like being on the computer, or feel much like doing anything really. Doug has been totally awesome (no, he's not writing this, lol) he is going crazy too...poor guy. I have such a great guy. Glad we are already married because seeing me yesterday with my funny face I would have my doubts! lo!l I know that I drive him crazy (he's already told me this) but he is here with me and I love him very much.

So, not too much other info really. I had a chest xray this morning and also an echocardiogram. I will have another echocardiogram with bubble (for transplant testing) tomorrow morning. We are waiting on infectious disease to see what will happen there. My antibodies are low and at some point I will have to have infusions, but it is unsure if/when they will do IgG infusions. The dr. said today that we may do them while here, but that is probably unlikely right now. We will also see from infectious disease if I will go home with pill form antibiotic or iv port. Hopefully the pill form!!! I really don't want to go home with an iv...but we'll see I guess. Dr. Akindipe said that my case will likely be presented next Monday (not tomorrow) because all of my info will not be gathered and together for tomorrow. So I should know if I am listed next week or not.

I think that about covers it for now. When I first got here on Thursday I had to smile for some of you that know my "cabana boy" story. When I was in the hospital last year I pretended to be on the beach with cute cabana boys fanning me and bringing me margaritas. Well I get here on Thursday and I actually had 2 cute cabana boys, for real! :) They wanted to start 2 ivs, (one in each hand) so my bed was raised and there was a cute cabana boy on each side of my bed! They just were not fanning me and bringing me margaritas...dang it. Funny thing is that Doug was on his way here yet and before this I had texted him telling him that I had a really hot nurse. The reply to my text was "Yes!!" I smiled because he had no idea my nurse was a male and not female. I had to laugh when he walked into the room and figured out who my nurse was. haha! He's a good sport! :)

I just want to thank everyone again for everything. Doug and I feel truly blessed to have so many loving and caring people in our lives. We appreciate all of the help with the kids, prayers, words of encouragement, etc. It is all amazing!!

Quickie

So I was going to post about everything going on over the last few days but I am too exhausted. I promise I will post more soon. I am feeling just a little better today then the past few days. There was air trapped in my mediastinum (chest cavity with lungs and heart) and more then usual. The doctors think it is from all of the heavy coughing I did with the upper respiratory infection I had...and that I strained my bronchioles and they expanded so much that air leaked into this cavity. I did a barium swallow test yesterday and soon after my chest and the right side of my face swelled up. My face is huge and it hurts. But they were glad for this result because it could have been that I had a collapsed lung.

Still trying to figure some things out. We will likely be here at least until Monday. I am still getting IV steroids and IV antibiotics for now. They will re-present my case to be put on the transplant list on Monday as long as they have all of their stuff together. I was told if not this Monday then next Monday for sure. So it's a waiting game. Xrays of my face was taken just a little bit ago to check on the air that has released from my chest cavity into my neck/throat and face. probably won't know anything until tomorrow about that. That's it for now. I promise to post more at another time when hopefully I will have more energy.

I do want to say a HUGE thank you to so many of you that have been there helping with things for Doug, the kids and I. Also the support and prayers just seeing on Facebook from all of you mean the world and are amazing. We can't thank everyone enough...we love you all!!! God is good! More later, xoxox, Kara

From ER to Observation to Cleveland

Wow, what a whirlwind last few days. I started last Friday January 6 with a lovely respiratory infection. Had went to the ER at Wayne to make sure it wasn't pneumonia (it wasn't) and got on antibiotics and an increased dose of steroids. By Monday I still wasn't feeling the greatest and by Tuesday more pain.

Doug's sister brought me to Good Sam ER about 9 pm on Tuesday night. The ER doctor here was very quick, did the usual iv port, bloodwork, chest xray, and ekg. Everything came back as fine. I felt as though I was swimming in mucous. I was miserable. The ER doctor said, "Well, everything looks just fine. You're not really sick, are you? You're just making this all up." and he laughed but seemed kind of serious and I told him yes, I was making it all up for attention. I just love to waste my time and money on medical bills too. So as he said this he said he talked to the pulmonologist on call and he wanted to admit me for observation. So he would be back with the orders and away he went. I looked at Beth and we were like...whaaat? Didn't he just say I was fine, but now I'm being admitted? So yes, I was admitted by midnight. I got no sleep...no sleep for about 37 hours to be exact...and even after that it was choppy because of having to do breathing treatments, meds to take, shots to give, vitals to do, many bathroom checks. My heart rate has been crazy ranging from 120-160, especially with any movement. I have a bedside commode 2 feet from my bed and my HR jumps to 150-160. I cough and it goes to the same. I've not been able to cough much phlegm out because I don't have the strength and because my HR jumps so high the nurses come running.

I had a CT of my chest last night. Having no sleep since 10 am Tuesday morning, I joked with the tech about  the nice cocktail he gave me in my IV. I normally hate this test because the contrast makes you feel warm and flush and like you have to pee your pants. But this time I actually enjoyed it. (Minus the peeing my pants part...heehee) I envisioned myself on the beach with my drinks in hand and got my warm, tingly sensation of drinking a yummy drink. Haven't had a drink in some time, so it was nice, lol! It was also very nice that I didn't have the hangover! So I joked with the tech and asked if I could have another. He said the first one was free but the next one would cost me. Darn it! Got an Ambien when I got back to my room, but I knew that my sleep would be far from great. I still had many treatments to do through the night, meds to take, vitals to take, restroom trips, etc. At one point I remember sitting on the commode (sorry for the visual) and looking at my bed and thinking...what am I supposed to be dreaming about? I know I'm supposed to be dreaming about something, but I can't remember what it is! Doug brought me my pillow from home and it has a brown cover and the rest of the bed is white so I remember thinking that maybe I'm supposed to be dreaming in color or black and white. I don't know but my nurse got a kick out of my ramblings. She told me preliminary results of my ct scan of my chest showed no pulmonary embolism. I would get a full report later. She hugged me at the end of her shift. :)

So I wake from my slumber to have an echocardiogram this morning, that was fine from what I understand. I saw Dr. Malik and he said that the CT of my chest showed the air trapping behind my lungs has gotten worse and that he has contacted Cleveland and they were going to transfer me from here to there yet today/tonight/tomorrow. He also said that they (Cleveland) is going to re-review my case to see about getting me listed! Finally! He says I am stable and I will be taken via squad as soon as they call and say a room is available. I will likely do all the tests tomorrow that I was supposed to do Monday. The board of doctors usually don't meet until Monday so I am assuming that will stay the same and I will not know if I will be listed until at least then. I will (or Doug will) try and keep everyone posted through here or through Facebook.

Thanks everyone for everything. Prayers, good mojo, love, support, meals, cards, donations, all is appreciated so much. More then you know.I am truly blessed to have soooo many great people in my life and I thank God every day for blessing me with a good life that I have had so far and for what is yet to come!!

I think I may just see the top of the tree getting closer. :) Love and hugs to all!!! xoxoxoxox

My Prayer Quilt (and found 3 butterfly fabrics on it!) :)

Below are photos of my prayer quilt sent from a Nevada Bella Babe. The quilt was made by a church in Nevada that call themselves The Piecemakers' Quilters. It is probably one of the best gifts I have ever received and I've already gotten so much comfort from having it. I even found 3 different butterfly fabrics used in the quilt! :)

I was just recently cleaning out my wardrobe dresser where I keep cards that I've received. I came across one that I really love..the front says:

I believe

I believe in mind over matter.

I believe in the human spirit to prevail.

I believe in miracles and blessings; both great and small.

I believe in possibilities.

I believe that hurdles in life are meant to be jumped over, not as something to stop us.