Semi update..

So a few things have happened since the last time I wrote. My breathing has defiantly become a little more constricted. It is getting harder to catch my breath. This it's self will almost sends me into orbit. All I can do is close my eyes and go to my happy place till I have caught my breath that is even hard to do most of the time. Last Saturday I was having a really hard time catching my breath, more so than it has been lately. I went to E.R and they gave me 3 albutrol treatments back to back. Holy crap did that ever make me jittery. After that had a moment to set in and start working it had only improved my breathing a small amount so in result of that I was flown by air-med to Salt Lake. The air-med team was fantastic; I love those people with a great passion. They make every things feel like its all okay during the whole flight. Thank you my friends!! After I arrived at the U of U I already was getting more air than before. I had the o2 mask, witch at the time I loved. Cool air blowing on your face feels very refreshing when you can’t breathe well. I ended up only staying until Monday night. That was however enough time being spent in the MICU. I couldn’t even get out of my bed without assistance. That is the floor policy being ICU and all. I sure loved all the nurses though. I did get to see some of my RT's from 3 years ago from when I was CF sick. After all they are my family away from family!

Thanks Jake for almost being to the U before I was, speedy driver haha!! I needed someone there and you were there without me asking, you just somehow always know!

Tomorrow is Monday and I have clinic, so I will see what further actions we will take to try and make these lungs a bit happier or at least clam them down. I just want to thank everyone for their support and all their love I have been given to make it through these obstacles of life!

Gray..

Is the color it has been outside for a couple days now... We have snow in our mountains and I had to turn the heat on in the house... Not ready for the weather change, I am all about the sunshine year round!! Okay, ill take the snow on Christmas!! Who wouldn’t really!?

Well the only thing I have to update you with is about the culture that grew out from the lungs. It is one that is hard to treat and is resistant to most antibiotics. I am continuing with the one antibiotic that we started almost 2 weeks ago... Can’t really stop in mid treatment, even if it not helping with the new bug I have. It has a purpose some where in there... We tacked on another oral abx and not really sure that I feel that it is working... I do know that it makes everything taste like rusty metal... lol (Not that I would litterally know what that tasted like but it sounded like a good comparison to me!!) All that leads to finding foods not appealing in anyway. But I push through and eat anyway... I can NOT afford to loose anymore weight...
My picc line is working like a champ... Been running in meds constant for almost 2 weeks now with no problems! I still miss my Port though not going to lie about that. I go back to clinic Monday. I hope they have a good abx combo for the new bug...
That about wraps it all up on what has happened this last week... As for right now I think I am going to crawl in bed and hopefully wake up to sunshine tomorrow!!

Good day!

Today was a better day than yesterday! Thank goodness for that. Yesterday I was real junkie and my emotions were all over the place. My grams came over after she got home from work and she did CPT to try and loosen up all the junk. It helped, however the dogs did not like it one bit... They thought she was hurting me... Those boys were so worried. The have never saw that before.
My arm is still sore from where they placed the Picc line... I can’t remember if I mentioned the process of the Picc I had gotten Monday at clinic... If I did, just skip over this paragraph... I’m sorry for my absentmindedness at times... Well it took them over an hour to get it in... They tried 2 different places and the second spot they chose to poke me well it eventually went in... After the threaded it up my neck the first time. So they had to pull it half way out and start again... I have 2 bruises on my arm from them fishing around with it... I finally can straighten my arm all the way. Yesterday I could not because it was so sore... Like I said, today is a better day all around!!

My dad and I went to Texas Roadhouse for some great food this afternoon... I defiantly get my love for steak from him... We both had a very delish steak. Yummy!! I think it is a great way to put my weight back on!!

I do think it is time for bed and so do my boys so I think I will make this the end of entry for today!!

Until tomorrow I hope you are having a great week and enjoying the last of this nice weather!

xoxo T

5 months Later

First off I want to apologize for the severe delay in my blogging upkeep.. I was trying to enjoy the rest of the summer I guess and just simply got out of the habit of my blog. ALOT has happend since I have last posted. Not the best news either, but I have kept a positive attitude through it all.. Of coarse everyone has there days where you just want to do nothing but relax at home, so on those days that is exactly what I do.. I will break up all the info into a few posts, so you don't have so much thrown at you all in the same read..

So Late April early May I was diagnosed with Chronic Rejection. Which is basically the lungs going through long-term (permanent) rejection that is not reversible.

One month before rejection hit I was blowing (Pulmonary Function Test) in the high 80's.. Suddenly after I dropped to 35%.. HUGE drop and the adjustment for me to get thrown back that far was tough in so many ways, that words can not explain. Don't let me forget to mention I had pneumonia at the same time. It just added that much more toughness to the whole situation.

I was treated with 3 weeks of I.V treatment to get rid of the pneumonia. That did help me get some air a little easier, thank goodness!! With all this going on at once it was strange to me that my oxygen level was running pretty good still. I think I was still reading in at 96% O2 on room air. My weight was still good as well. I think I only lost 1 lb is all..

After the 3 week treatment and the pneumonia clear I thought I was on the mend to higher PFT numbers.. I have maintained the same this whole time, I have been blowing between 32 to 38 or close to.. It is hard to keep track now since I was blowing every week for a long while. Believe me its easy to loose count.

Over all I had a nice recovery from it all. Keeping stable is the most important part of chronic rejection. That I have managed to do with the help of new anti-rejection medication.

In July I caught pneumonia once again.. The same treatment took place as the first time I had it, so I will not repeat myself and bore you to much..

Huh Perhaps I can get all this in one post.. Good for me then I can start fresh next entry..

As of yesterday Monday September 26, I have pneumonia again. I feel this time has been the worse spell I have had yet out of the other 2 I mentioned above.. My PFT's were 25 this time. Lowest I have been yet, so I will work on getting back to the 30's. I am alot more junky in the lungs. It sounds like I have CF again. I have to say I sure feel like it too. I am now on oxygen all the time to help keep my lips from turning blue. They did that before transplant.
Anyway I also had another Picc line placed for 21 days of antibiotics. This time I got the continuous pump, so I will be getting infusion for the full 3 weeks pretty much non-stop.. I am completely fine with it cause I think I may get better results with a antibiotic running constant for the 3 weeks!! I am also on oral Cipro. So I will be kicking this in the butt when this is all over.

My arm is so sore right now where they placed the Picc (i.v) They had trouble threading it past the bend in my arm and ended up pushing it up in my neck. That part did not hurt I actually did not even feel it, but I could hear it.. Very weird.. so the part that hurts is at the site where it goes into my are. It is all bruised from them digging at it to try and make it turn the corner. It will be better in the next day or so.
I keep loosing weight, so I eat and eat and eat till there is no possible way I could eat another bit for the day.. UGG.. So that is something I am working very hard on as well..
The dogs know I am sick and they are very gentle and so sweet with me.. It's cute. I love those boys so much!! Well I think I have covered tho important stuff, if I have forgotten something I will add it to the next post. Oh I am still going to finish that 30 blog challenge, though I am giving it a new title.. 300 day challenge!! hehe

I do hope everyone gets a great start to the fall season!! I LOVE fall!!!

Still so Surreal

4 Ever Breathe Easy Beautiful Cysta







It has taken me so long to write this blog cause I just knew that it was not true. She was ALWAYS the one to bounce back from her sick hospital stays. Yes Tiffany has greatly earned her wings from above. I don't really think of it as she lost the battle but she crossed that finish line with the biggest fight possible and she gave it her all and then some! Tiff you were the biggest ray of sunshine, even on your worst day. I will never forget what you said to me when I got my lungs "T you just gave me the best Birthday present ever" I just wish I could have told you that you that you gave me the best news of a life time. Every day that you were a part of my life you made me smile and you kept the hope alive.. So now its my turn to keep the hope alive and find that cure! I am doing my benefit this year in honor of you and all that fought and crossed the finish line and those who are still fighting! I will never loose hope! I am so glad you got to meet Lisa and in that 5 min you changed her life for the better, so thank you from the bottom of my heart. I am so glad I got to see you in the last weeks of you smiles and contagious laugh. I probably was not supposed to but I couldn't stop my self from giving you that 10 min hug. I will always and forever carry that moment with me! Thank you for being a huge part of my life and showing me the true meaning of living life to the fullest. Tiffany, I have always looked up to you. I will never forget your beautiful smile and our countless laughs together, our "long walks" in the joint, our 3 am bucks coffee runs.. How can I forget the 1st time you introduced me to Sushi.. We went on one of our "walks" You, Jake and I. Well you started something cause I could eat that stuff all the time now!! So now I guess its up to Somer to keep the cysta sushi days alive!! I love you and will miss you so much cysta.. Breathe Easy my beautiful Angel!!

Side Tracked

As I have mentioned before on how it is going to take me longer than the actaull 30 day's to compleate this challenge.. Well I was no more than right about that statment!!
I have had a few obsticals that got in the way so I will share them with you all. I first went to clinic with what I thought was a start of a cold or someting small like that. I arived at clinic and did all the standard test before clinic. Blood work, PFT's, and finally X-ray. Well my white blood count was a tiny bit high what is usually a sighn of infection somewhere. Well then they took a look at the pft's that I had blown that morning, whitch I had already saw the results of that.. I still thought the results were an error.. Come on really can I go to 90% down to 47%. Well the answer is absolutly.. So They got me into a Bronch that very day to see what was going on inside of the lungs. Nothing out of the ordinary they reported they saw. So I went home with the treatment of pnemunia.
I arrived babck to clinic 1 week later in hopes that I had shown some inprovments in any earea. Lung function, weight gain...anything.. Nope my pft's were down to like 39%.. Yes my concern has grown incredibly. So now I am being treated for pnemonia on top of rejection. In hopes this is a fix and I will be back on my feet with all my energy in no time. I am so so tired all the time and I get the anxiety attacks severel times through out this whole thing.. The feeling of getting so short of breath really freakes me out and it takes me back to old days were im looking for my oxygen and by pap. I do have some pills that help with the axiety that do help, thank goodness!!
I go back to clinic wendsday to see some more results.. Hopefully they will be good results!
I am sure glad that I have a Fantastic Partner in life that is with me every step of the way!! I thank god for her every day!

So after looking at the computer screen more that I have in the last week my eyes are falling shut.. I will hope to get a bit more energy to continue with my challenge!! Thank you all for tuning in on my long lost blog..
XOXOXO

Day 2....My Meaning

Well off to a good start at keeping up with this challenge.. HAHA however it has only been 2 days!! But hey that is more than I have wrote in quite a while, right?!

So today's post is about my blog name. Well it took a bit to come up with the perfect name. I was waiting on the transplant list when I began blogging. All I could think of was getting these new lungs and breathing again. That was on my mind when I was awake and when I slept. I had alot of dreams that I had got the call and everyone of them were so real. You know the dreams when you wake up and cant decide if the thought in your head was real or not? So I was blogging about one of those dreams one day and all of the sudden the name came to me. I just wanted to be able to breathe forever. So there you have it.. 4 ever breathe.. I like to be a little unique so that is why I have the number and not just the word forever, just to throw a little kick to it!!

30 here we GO!!

So, I found this nifty list for a 30 day challenge for blogging and thought I would take it on. Right, I can pretty much guarantee now I will likely take longer than 30 days to do this… but it seemed interesting, and I am hoping this will give me a push to start blogging again! Lets see where this whole thing goes.

Day 1-Recent picture, 10 interesting facts
Day 2-Meaning behind your blog name
Day 3-A picture of you when you were little.
Day 4-Your parents
Day 5-Your siblings
Day 6-A picture of something that makes you happy
Day 7-Favorite movies
Day 8-A place you've traveled to
Day 9-A picture of your friends
Day 10-Something you're afraid of
Day 11-Favorite TV shows
Day 12-What you believe
Day 13-Goals
Day 14-A picture you love
Day 15-A picture of somewhere you'd love to travel.
Day 16-Dream house
Day 17-A picture of someone you could never imagine your life without.
Day 18-Something you regret
Day 19-Something you miss
Day 20-Your Nickname
Day 21-Picture of something you can laugh at
Day 22-Favorite city
Day 23-Favorite vacation
Day 24- A picture of something that has made a huge impact on your life recently.
Day 25-Put your iPod on shuffle, first 10 songs
Day 26-Picture of your family
Day 27-4 legged Fur-babies
Day 28-Something that stresses you out
Day 29-A picture of a person you'd love to trade places with for a day.
Day 30-a picture of something, anything



Day 01- A recent picture of you and 10 interesting facts about yourself


10 Facts:
1- I used to HATE seafood.. I like it now though!!

2- I hate wearing shoes in the house

3- I am SOOO tired of this weather, I want sunshine!

4- I LOVE my roomies! They are the best!! Cj and Kel!! <3

5- I do not really watch t.v unless it is DVR

6- I am planting my first veggie garden this spring, If we don't float away

7- I have gone 32 months without having transplant rejection yet

8- I could not live without my dogs

9- I love my house even if it is old, it has a ghost and ALOT of character

10- My FAVORITE flower is Star Gazing Lillie's

ZZZZzzzz

Well it has been sooo long from when I wrote in here last that I thought I would go ahead and try out this 30 day blog challenge that everyone is doing.. I don't want to do the exact same one so I am kinda making a mix of my own.. I will have alot of time to blog in the next little while. I have been feeling under the weather for a couple weeks. I went to clinic and I blew a 47%. That number totally freaked me out. Do that same day I had a Bronchoscopy done to see what was going on inside. Nothing grew back in the culture. Well that was a week ago this last Monday. We thought it might be a case of rejection. So I went back to clinic this last Monday the 11th. Dr Cahill said that I have pneumonia. So I had a Pic line placed and for now I am doing home I.V meds with 2 other new antibiotics oral. So that leaves me not feeling the best. Gotta love the Cipro.. UG.. I will go back this coming Monday to see if there has been any improvements in my lung function.. I hope so.. I will be knocking that 47 out of the field soon and be back up to the 90 range!!

Carless Vet

Bad vets need to be aware of.. When I adopted Steele they require ALL animals to be spayed and neutered as I have mentioned before.. Well this particular vet obviously did not care about her work she preforms on the animals from the shelters or any animal other than her own as far as I am aware.. I brought Steele home on a Thursday and the fallowing Friday I already had him to the vet. He was SSSOOOO swollen from the neutering that he looked like he was not neutered at all, and even more swollen than that. MY vet was alarmed to see this abnormally swollen site. I was told that he had a hemorrhage from the surgery and a time or 2 they have saw this happen before. So Steele was sent home on antibiotics to prevent infection. Well I thought cause I saw him everyday it seemed like the swelling was not going down.. So a few days later I took him back to my vet.. He pulled the stitches out and gave me a couple more days to watch it.. The stitches really helped the site go down, but he was still dripping blood.. Yes after 15 days this was still bleeding.. I knew this was not right,, So once again I took him in and said I needed this removed.. What ever this huge pocket was I needed it gone!! NOW!! So on with a new surgery with a whole new set of problems.. UUGG.. Well that pocket of stuff was ALL scar tissue from the CRAPPY job the original vet left from the neuter.. So I get Steele home to discover he is now having seizures. So back to the vet I go.. We gave him a shot to reverse the effects of the anesthesia. So far so good.. No more seizures.. UG what a mess this has made.. All because of carelessness from 1 person. If it were not for a 4 legged fur-baby's mother going with instinct this would have been a disaster worse than already had developed..

This week will be a much better week for all!!!

Steele

Here are the pics I said I would post after I gave Steele a bath.. He smells SSOOO much better... That pound smell is terrible.. I had to re wash all the dog bedding cause that bad pound smell attached to everything he touched.. Believe me it was to strong to stand.. He is so much better looking, very shinny and the white on him is so crisp looking.. The rest of the dogs even like him more.. Really they do.. I know its cause of the pound and the death smell that the other dogs could smell... He is being a very good dog so far.. He is great with the cat.. All he wants to do with Spike is play.. Well he forgets that he is so big.. He weighs 62 lbs.. I hope that is full grown weight.. He even knows how to honk my car horn.. Yeah I was in the store today and he started to push on the horn.. As soon as I walked out the door he stopped.. I have never heard of an animal doing that before.. It was so funny!! He is a very proud young boy!! He loves the camera too!!

New Addition

Today I added a new family member to my little family!! I went to the pound in West Vally cause they were euthanizing a bunch of dogs today.. Sad sad world it is.. Anyway I had my heart set on a particular dog.. They call him Steele, he is a Pit Bull/ Lab mix.. The same as Bently was. My dad went with me to check him along with a couple more out just in case there was some kind of conflict with Steele.. I was looking at another dog and was figuring out what one would best fit my life style.. Well I turned to walk back down to Steele and some dude came and took the other one I was looking at along with her kennel mate.. I just thought some one else was looking at them.. Well come to find out they were taken back to be killed.. Oh man that was a sad moment in time.. He was coming back to get steele when I had someone take him out for me so I could play with him and see if we got along.. Everything was perfect.. He came to me as if he had known me for a while.. The guy that worked there came into the room and sad the Steele did not like men very much cause of the abuse his first owner put him through.. Well after he came to say hi to me he walked over to my dad and sat on his feet and laid his head on his lap.. No one could believe it.. I think that dog knew what was going on.. The reason he HATES men at first introduction is the dude that had his first took paper scissors and cut his ears off.. It is sad that people can do such things.. He has a little bit of an ear left on one side but not much.. Him and Ziggy had no conflict either.. So I adopted him!!! I get to pick him up tomorrow at 5pm.. they had some vaccinations they needed to do before he comes home and make sure he is in good health.. They don't do any of this before they get adopted cause you never know who will find a home or not and that is alot of dogs to be able to make sure they are well.. Cause sadly most of them don't find homes.. I have never bought a dog from a breeder and I never will either.. They need to take a walk through a shelter/pound and see just what they are helping populate.. there are over 300 dogs in just 1 Pound and most are sweet dogs that would love you more than anything.. I will post a picture tomorrow after I give him a bath and he gets settled a bit.. I know he will be very loyal and loving just by the 10 min I spent with him!!!
No dog will ever fill Bently's place bit they will fill the cracks that that hole made when he died..

RIP Bently

Today is the saddest day I have had in a long time.. Someone hit Bently this morning. Right in front of me. To make things worse the people didn't even touch their breaks the just kept driving. I hope Karma will find them. I will always carry the imprint of the sound smell and most of all the sight of it. How can a dog break your heart so much. This is killing me cause there was nothing I could have done. He died on the way to the vet. I will miss that boy like crazy.. Run free Bently bear..


My gentle giant's gone to sleep.
It's quiet, yet I hear his sound,
his feet still dragging along the ground.

He made all welcome, no bark, no growl,
just the largest grin, with licks all around
He asked for nothing but gave his all,
right to the end, to that final call.

When it's time for us to take that final ride,
that fearful trip to the other side,
we know he'll be waiting, as he was in life.

No more will follow, they couldn't compare
to that giant, gentle, big black bear