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July 27, 2020

I know I don’t update like I use to, and you can blame COVID on that. It just gets you out of the mood to do anything as you can see.

I’m back at my second come home, I’ve been here since Wednesday for pain and breathing. They have the pain under control, but my breathing they are still working on.

I’m in good spirits because God is in control always!

May 25, 2020

Hello all, I know I have not posted in a very long time. It’s because I’m trying to deal with life and this dang Covid-19.

So I have been indoors since January, it’s one thing to not be able to go out. But when you can’t go because what’s out there can kill you. That’s never wrecking like no going to get coffee, or small stuff.

Like I would go to the office if I felt up to it. But my job said I’m to work from home until further notice. Because I am a liability which really sucks, but I know it’s for my own safety.

My babies keep me company then my other baby does too. But it’s still hard so I understand the frustration people are having. But understand life is greater than death!!

April 4, 2020

I’m sure a lot of you all are going stir crazy right about now. Well think about the fact that being in the house is something, that I have basically had to do for the last almost 2 years.

Why because every time I go out I get sick and end up in the hospital. Because I always catch whatever is going around. Which is why this is so damn SERIOUS right now!! Because I would catch it so quickly and the outcome would be death.

I hate to put that harsh reality out there, but my lungs are damaged badly now with the lung disease I have. Anything else what do you think would happen?

No worries I’m in the house and I’m not going anywhere.

March 30, 2020

I know it has been a month since I have updated you all on my condition, that’s only because of the fact that so much is going on especially with the COVID-19.

It has been hard but let’s face it staying at home is something that I am good at, they are still supposed to be doing transplants but they are having to test the organs over and over.

February 13, 2020

Back in the hospital since Monday, my LAS scores have gone up to 50. Which is extremely high considering that the highest is 100.

So maybe I should get the call for new lungs some time soon. They are supposed to be letting me go home today.

I know I did have an infection on my lungs, they gave me a whole lot of antibiotics and I was in ICU my first few days here.

Before I was moved up to the transplant floor, I have been up here since I think Tuesday night Wednesday morning. Not sure I was kinda out of it when I was moved.

February 4, 2020

Since my last transplant appointments it does show that I have gotten sicker, it has moved me up on the transplant list.

But it has also made it harder for me to do simple things, that were not difficult before I still keep pushing no matter what.

I just try to space things out more and take my time more. So yes I’m tired more than ever and yes I get sick a lot quicker than before. Yes if I hear you coughing, I will spray disinfectant your way at work.

If your at my house you better hold it in like Spongebob when he had the suds.

January 25, 2020

I must say that they do have my RA pain under control. Right now I am just dealing with a huge amount, of fatigue from being in the hospital for that week.

My doctor thinks I should get the call for transplant soon. Of course no one can predict when it will happen, but I’m praying that it comes soon.

January 12, 2020

I’m finally out of the hospital, and I think they finally have my RA pain under control.

January 9, 2020

January 9, 2020

January 8, 2020

Well I’m still in the hospital and have been since Friday. I’m not sure when I will be going home, I’m not in a rush until I’m back to my sick normal.

I know some you will get that and some of you won’t. The last few days have been pretty bad with Rheumatoid Arthritis Flare ups . But we they trie a few things it wasn’t until my brother brought, my cream up here that with the medication started to work right away.

It didn’t take all the pain away but I was satisfied.

January 4, 2020

I made it through 1/1/2020 not being in the hospital. However, I had a doctors on 1/3/2020 and ended up in the hospital.

So I’m here now and hopefully won’t be here forever. Not feeling the best of course and my RA is flaring up pretty dog on bad.

January 2, 2020

I made it through another year I am blessed to see that! This is the first time since I was diagnosed, that I didn’t spend it in the hospital so already I am doing good.

Yes it is never wrecking waiting on them, to call me to say that we have your lungs head to the hospital. I have been on the list since May, to know that my disease can and will kill me if I don’t get new lungs is scary.

But I know God always works on time, so I’m not at all worried about me not getting them when I need them. It’s all that I have to go through in between time.

I do feel like I’m coming down with a cold, hopefully it’s not a bad infection like the last time. I started my antibiotics hopefully I did it soon enough to try and fight whatever it is.

December 16, 2019

No new news to report other than my RA, is kicking my butt at the moment it does not like the cold weather.

Just trying to build my strength back, to even what it was prior to my RA diagnosed has been extremely difficult. I’m slowly trying to get back to myself, which I am doing thanks to a special person and a couple of close friends and couple of close family members.

Trust me my circle is about the size of a dime no joke. But it works for me.

December 9, 2019

I think it’s safe to say that every time I get a cold, I really never get rid of it because I always feel like crap. My first day physically being back at work, I ended up having to be wheeled to my car.

Why because my RA hit my right foot so bad, that I couldn’t put any pressure on it at all. Thank God for cruise control because that is what I used to get home. We aren’t even going to talk about getting into the house. I’m thankful for friends that live no where near me that will come help me. I’m talking about 30-45 drive people.

But they know I would do it for them and have in a heartbeat. It’s hard to pray for lungs knowing someone has to die in order to get them. I just pray for strength and that I don’t kill anyone on my care team. I think I’m going to sign my my four legged kid Ariel up as part of my care team.

When I’m on my walker she walks behind me to make sure, I get to where I’m going then when I’m almost there she goes to make sure things are clear.

November 25, 2019

I haven’t really posted since I’ve been home from the hospital, mostly because it’s been getting use to a new set of pains. Which I think I am on the right track, they are still trying to figure out the best medication to give me to help me.

No luck yet, because of course they have to make sure they don’t bother my lungs. Work has been super busy, and yes I have still been working through all of this. I mean I have to work I need my health insurance, how else am I going to get two lungs.

After, it should slow down some in a week or so. So I’m very thankful for that, I have been pacing myself which maybe the reason I’m a bit behind. But it will all work out in the end.

November 5, 2019

Okay I have been home from the hospital, since Friday it’s been kinda rough because of the Fibromyalgia and Rheumatoid Arthritis. So I am having a whole lot of pain in all my joints everywhere.

But this to shall pass!!

October 26, 2019

Update on my hospital stay I have an infection in my lungs they don’t know what kind of infection I have, they are trying to treat it with some of everything.

My breathing isn’t doing to well! They are treating it also, and the pain. But no worries, I am a fighter and I will be alright.

October 24, 2019

Well I am back at my second home, back on status #7 was admitted today. I’m not sure how long they will keep me this time. My X-ray’s and blood work didn’t come back good from yesterday’s appointment.

But of course this isn’t new to me will keep you updated on what they say. Right now it’s a bunch of drugs.

October 14, 2019

I went for my transplant appointments, and they did confirm that I am getting sicker. They want me to work on trying to build my strength, because I have to be strong enough to survive the transplant.

Still trying to fight off this flu/cold, that I caught before my birthday. Not to mention my osteoporosis has got me hurting bad as heck.

October 2, 2019

Tomorrow I celebrate another year being on this earth! After almost dying in 2018, it makes me look at it a bit different. It also makes me look at life, and death a different way as well.

Of course you all know I have no plans, because of my limitations but that’s fine. Because even if I didn’t have them I still wouldn’t have a plan. I think I would only have a plan if my wife and I were still together.

Because like she did every year she would, make me feel special on that day. I am not sure I ever shared that in any update, but through all of this my wife decided to ask for a divorce two months after my lung disease diagnosis.

She stayed around until I came home from the nursing home, then she moved out to live her life. On another note I caught the flu from someone, so I am sick on top of my usual sick for my birthday.

But it’s cool I am still around and get to play with my 4 legged kids. Since my two legged one only comes around when he wants something. But I guess that’s what 17 year olds do nowadays.

September 25, 2019

So my body has been having an inflammation party, so I been in a lot of pain these past few days or weeks I should say.

But this too shall pass I know it would be nice if my phone ring, and they say hey we got some lungs for you. Trust me that’s the first thing I will post, is when I get that phone call.

September 18, 2019

Trying to fight off yet another cold, and trying to stay strong because it’s very busy at work. I am trying to learn to always put myself first, and that my job can wait.

I am what they would call a workaholic, so getting use to being in my current situation is very difficult. I

am trying hard to adjust, It’s hard to believe that I been dealing with this going on 3 years.

No new updates on lungs! I am still on the list just waiting for my phone to ring. Patients is a virtue!

September 12, 2019

Nothing new to report just trying to make it on a daily basis, today inflammation is having a field day. But I am use to the pain so I try and deal with it the very best I can.

I try not to complain about anything, because I know that their is someone out there who is so much worse than me. I am blessed to still be here even with my day to day struggles, so I just press forward and hold my head high.

September 5, 2019

Today was a productive day! I am finally off of status #7, and back active on the Lung Transplant List. Now we sit and wait for them to call me with some lungs. Considering that today makes it exactly four months, I am very hopeful that it will happen soon.

I know one thing it will happen right on time, according to God’s plan. So right now it’s just keeping focused, and trying not to get sick. Yes you can chuckle at that. But hey I am still trying, I know this much when I get better if you all don’t hear from me for about a week you know why.

I need a break from the world, but that’s a long ways off won’t be at least a year until after I get new lungs. They say the first year I go back and forth to the doctor so much I live there.

I say well hell I feel like I live there now, so are you telling me I really need to rent a room down there...

Because I will it’s closer to work, no parking fees, but they have to allow dogs. If they don’t then NOPE you know I can’t go without my babies.

August 31, 2019

They say that most times the medications side effects, can be worse than the condition you’re dealing with. In my case this is a very true statement, taking prednisone (steroid) for my lung disease.

Caused me to have brittle and weak bones, I have developed osteoporosis and scoliosis. I have broken a total of 6 ribs, my collarbone and my clavicle.

I was given an infusion that was going to help with the scoliosis, and strengthen my bones but the side effects to it landed me in the hospital for a week.

Now I have a new issue I have a hole in my nose, which is the medical term Nasal septum perforation. They of course can’t fix it I was prescribed, this cream I have to put in my nose twice everyday. So that it retains moisture, and that is supposed prevent the hole from getting any larger.

August 19, 2019

Not really happy after my last transplant appointment, last week since I was in the hospital a few weeks ago. They have my as a status #7, I am still on the list but I am on pause.

I have to do a few things in order to get un-paused, which I expect should happen on the next week or so. Then I still work a full schedule, even if I do it all from home which I don’t.

I am still required to report to my desk, at least 3 days a week even though I can do my job from any place. But I am blessed for my career and I love what I do. These past few years have just been a a whole lot.

If anyone needs to get in contact with me, I can be reached at my personal email address [email protected] if you have my work email or cell phone that is fine. I am just not going to post either here.

August 9, 2019

After resting this week I feel like, I am back to my sick normal. I know a lot of people won’t get that but, I’m still sick but not the sick that put me in the hospital.

I mean hey I have an incurable Lung Disease, and my only option is a double lung transplant that I pray will come soon. But other than that I am in good spirits, now I just have to try to get stronger somehow.

August 5, 2019

Home from the hospital, feeling a lot better than when I went in. Still not quite back to my sick normal, and feeling exhausted so I am about to rest.

I will be resting for the next few days before I try to resume, anything that was my sick normal because I still feel a bit weak.

But I will tell you joint and bone pain at the same time is no joke, especially when you’re already not in a good health state brought me to tears. First time I cried from pain since I been dealing with this since 2017. So that’s just to let you know the pain level.

Plus 5 things of morphine and Fentanyl didn’t do anything not even make me sleepy. You know I was hurting bad.

August 1, 2019

Okay so I have been in the hospital since Tuesday night, going into Wednesday morning. It’s a blur not sure if it was past midnight yet or night. I was in an extremely large amount of pain, from my inflammation and from my reclast infusion.

I was not aware that the infusion was going to cause pain in the joints as a side effect. Well now I know thankfully I only have to do it once a year. I started out at Fairview Hospital and had to be transferred to Cleveland Clinic Main Campus.

Since I am on the transplant list, the transplant team wants me to come straight to main campus if I have to go to the hospital.

When I am at Main Campus I literally get seen by my doctors, they come down to my room and see me and check me out. They take care of me, even my primary care doctors will come see me. They have really been on it, if I am admitted here they come will come see about me. I think that is a amazing to me because doctors wouldn’t do that or care that much.

They finally got the pain to ease up early this morning, so I am doing a bit better. It will be a little bit of time before I am back to my usual sick even though that sounds odd.

July 25, 2019

Nothing new to report other than I am sick again. Yes I know but no hospital so that is a win for the home team. I go next week for the infusion for the osteoporosis, so maybe I will get some relief in my joints.

Other than that I been crazy busy with work, you know walls falling on tracks. Then everyone asking for all types of reports and acting like excel is a foreign language. To think this isn’t my busiest time of the year, it’s the end of the year.

So much to look forward to but it’s all good, it keeps me busy and focused on something other than being sick. I do want a gaming system although, those things cost to much money. Lord have mercy, I didn’t realize how much they cost now. Someone said I needed something fun to do, and work doesn’t count because it requires me to think to much.

July 18, 2019

I think I manage to catch a cold at least, 3 times a month which would mean the hospital visits. But thankfully my doctors seen the benefit, in giving me a refill for my antibiotics.

The problem will happen when those stop working, and I need a stronger antibiotic I pray I have my new lungs before that happens.

So with that being said yes I am currently sick, yes it makes everything for me 100 times more difficult. But I deal with it and I still get up and try to go into work everyday. Even when I have horrible pain because my inflammation has a mind of its own.

July 9, 2019

I haven’t posted an update in a while, because it’s been very hard waiting for a phone call that will make you better. I still manage to work thankfully, the job I have works with me. But I have been really busy this past month. Just don’t tell my doctors, it’s great for my mental state.

Because it allows me to place my focus on something else besides being sick. I discovered something on YouTube, that hospitals do for those who die and donate their organs. It’s called an Honor Walk or Walk of Respect, made me look at organ donation in a whole new light.

I hope all those that are connected to me are organ donors.

June 30, 2019

Been sleeping a lot with the new medication increase which is a bit odd, considering that I have been having trouble sleeping. I will be talking to my doctor about it on Monday.

I am talking 12-16 hours of sleep which, I think is very extreme. Especially, going from 4-6 to now 12-16 hours. I feel rested after the sleep and I know it could be a side affect that could wear off. But I just want to be on the safe side.

Other than that just patiently waiting for the phone to ring.

June 21, 2019

Appointments went okay blood work wasn’t good as normal, and my walk test decreased but it didn’t change my lung scores for the list. I have been feeling better than I was at the beginning month, plus I finally got rid of that cold I had.

So right now just trying not to get sick, focus on taking things day to day and wait for the big CALL.

June 10, 2019

Well I think it’s safe to say that I am getting sicker. Thus far on the antibiotics, I don’t feel as improved as I thought I would. Not to mention all of the other pain I am having.

When I fell down the stairs I did break my clavicle. But it healed over not right of course so that is killing me. Right shoulder, left hand, left lower back and stomach are all killing me today.

Inflammation is the cause of the pain in the joints and back I don’t know about my stomach. But I’m about to take pain medication and hope I don’t need to take a trip to Cleveland Clinic

June 7, 2019

I am still sick but better than I was earlier in the week. I have been trying my best to rest and get fluids, but that doesn’t always work out the way you want it to.

I am taking antibiotics have been all week, and I have been in the house as well. Since the weather can’t make up its mind on which season it wants to be.

June 3, 2019

So I just realized that I haven’t had to deal with the, weather fluctuations since 2017 so my body is very confused. When I finally came outside on my own last year it was July and it was hot. I can dress for hot and I can dress for cold. But not in the same day every other day, not having an immune system.

Trying to avoid sick people if I go to work or an appointment. On top of this weather yea I am getting beat up. I am sick back on antibiotics praying it fights it off so no hospital visits.

Don’t you just love Monday mornings, we’ll let me get back to work.

June 2, 2019

Still waiting on that phone call, which is like watching paint dry! I have all day appointments coming up on June 17th, they will redo a bunch of test and up date my numbers for the listing.

So it may cause me to get a call sooner, I have a follow up tomorrow with my primary doctor. To take X-rays of my left shoulder and collarbone. So I am still in the sling for safety reasons, and yes I am being careful on the stairs and in general.

Feels like I am trying to come down with a cold, so I am trying my best to fight that off. Don’t need to end up in the hospital because I come off the list until I am well.

May 27, 2019

Nothing new to report other than trying to stay healthy, which you all know is hard since the weather is stuck on cycle. Just keeping my mind focused on the future of having, two new lungs is the most important thing.

Everything else is secondary right now, I know this much it really is nerve racking waiting on a phone call. Because Every time my phone rings I jump, I was in a meeting and had to pick up my phone.

They know why so it’s know big deal, but it’s like everyone around me holds their breath. In case it’s The Call as we have labeled it. LOL!

May 21, 2019

Still waiting to get another call, for a better set of lungs! Hopefully, this call will come as quickly as the first one did. At least I know what to expect when they call, even though I will still be nervous as heck.

May 15, 2019

I GOT THE CALL TODAY! Cleveland Clinic called back, the lungs they had for me failed some test so I’m still waiting!

May 15, 2019

I GOT THE CALL TODAY! I am waiting on Cleveland Clinic to call me back, after they run more testing on the donor lungs. Will keep you posted as to if it happens today....

May 15, 2019

I am glad to say I am out of the sling, although my shoulder and collarbone aren’t fully healed. It has healed enough not to have to wear which is awesome. Still lots of pain especially if I turn or move the wrong way lol. But it’s to be expected so I am extra careful going down the stairs at home.

Today I had to see a psychiatrist it’s required by the Transplant Team, the appointment was actually really good. Because I don’t think I actually put an emotion on what I am going through if that makes sense.

Waiting for a phone for new lungs is nail bitting, because you have no clue as to when it will happen. So every time my phone ring I am like a bubbling idiot. If you would like to reach me you can email me at [email protected]

May 6, 2019

I just received a call from Cleveland Clinic Hospital, I have been officially listed on the Lung Transplant list as of May 6, 2019!

April 29, 2019

Not feeling to well today my flare ups, have become more frequent my shoulder and collarbone is still very sore. Can’t wait until that heals so that I can take this sling off. Other than that just trying to get things in order at home, and at work which is a challenge in itself.

April 24, 2019

So my ultrasound didn’t happen yesterday because the orders were put in wrong. So I am waiting for them to be done correctly, so I spent three hours at Main Campus yesterday, but they did pay for my valet parking. So it wasn’t all bad, I am still sore as heck from the fall last week. But it could be worse I could be in a cast, so I am counting my blessings on that.

To have walking away with my arm only being in a sling. I am thankful now if only the pain can ease up, I would be so much happier. I finally packed my bag for when I get the CALL, but I haven’t put it in my car yet. Yea I should have someone do that tonight lol.

April 20, 2019

My day started off kinda bad I slipped and fell down the stairs this morning. I landed on my left side thought I broke my collarbone again, but I didn’t I just bruised it pretty bad. I also bruised my left hip I had a doctors appointment, so I was checked out.

Pain medication are helping control the pain, if it gets out of control I will be in my second home. But other than that I am alright. I have ultrasounds of my lungs on Tuesday.

April 13, 2019

I will be listed next week after my appointment with infectious disease, they just want to make sure I know how to keep myself from getting sick after the transplant. I also have one other test to do but it’s simple.

But the main thing is I WILL BE LISTED! I received that call while I was at work at the Rail District, they held an amazing fundraiser for me. I am very thankful for that and those who donated.

April 11, 2019

I received a call from my nurse at Medical Mutual Insurance, and I have been approved for the double lung transplant!

Now I have to wait for the Ohio State Board Then I will be listed.

I should be listed by next week!!!

April 8, 2019

I received a call from Cleveland Clinic I was approved by their board for the lung transplant!

Now I have to wait for the Ohio State Board and Medical Mutual insurance to approve me. Then I will be listed.

I have already talked to my nurse at Medical Mutual, she said it will be approved she is just waiting on the paperwork.

I will be listed before the month is out.

April 5, 2019

Thus far I have managed to stay out of the hospital, I started another round of antibiotics on Tuesday. This time they have me on them for twenty days. My case should be going to the board either the 8th or the 15th.

Once I am listed I of course am going to post an update about it. Also, if you would like to reach me you can email me at [email protected]

Or Instagram at shan.coleman54 I am not on Facebook, and I know that’s a shock. I only like Instagram for cute dog pictures and videos. Oh the food videos and the comedy. Somethings have me looking like eww I use to eat that.

I don’t eat meat anymore and haven’t for a while. I do still eat some seafood only because of protein, and yes I know it’s other ways to get that. But right now I am limited on what I can do. So I am pescatarian.

April 1, 2019

April national organ donation month, so if you’re not a donor please sign up to save a life. I wish I could report that I am feeling better but I feel worse and I see a trip to the Emergency room in the future. Of course you know I try my best to stay out of the hospital, but for the last year or so that’s been my second home.

I will keep you updated and yes I am getting rest and no I didn’t go out side in the snow.

March 29, 2019

Today is a real bad day, I am coming down with another cold/infection. I am waiting on my lung doctor to fill my antibiotics so I can try to avoid a trip to the Emergency Room! Then to make matters worse I am in an excruciating amount of pain, which is affecting my breathing.

Between the pain and the coughing my lungs really hate me right now. Taking more pain pills praying it ease up a bit so I can rest, happy Friday folks. Well at least the weather seems to be a bit better than it has been. I guess you can say spring has sprung’

March 22, 2019

This has been a very long work week and the first week that I have worked consecutive days since I came back. I started back working July 2018 after being off for 6 months, no I will not ever do this again I am paying for it.

I have been getting test results back and one of the most surprising one was the lung function test. I knew my left lung was in bad shape, but I just didn’t know how bad. Well it’s basically not really working and my right lung is doing all the work. Which is why they both have to go. I know it’s a million questions that come to mind regarding all of this.

Heck I am still asking questions so I can imagine someone on the outside looking in.

March 16, 2019

Hey all nothing new to report other than, trying to rest from these long weeks I have had. I do feel like I am coming down with a cold, I am trying my best to stay out the hospital.

I have lost a great deal of weight but, they said the more I lose will make it better for the lung transplant. I am perfectly fine with that I am trying to get down to like 150, which I am not far from.

Sharon is going to help me with meal prep because I forget to eat sometimes, I don’t do it on purpose I just don’t have the hungry urge.

March 12, 2019

I have made the decision to move forward with getting listed on the transplant list. Because it is to risky trying to wait until my short term disability kicks in come July. I am only going to get sicker and if I get to sick they can’t transplant me.

At this point my lung function is getting worse, not to mention all the trips to the emergency room. I will have to have a double lung transplant, because both lungs are in such bad shape.

Just because I get listed it does not mean I will get called right away. However, I could they can not say when that will take place. They just know from a medical standpoint I need to be on that list. So they are going to present my case to the Cleveland Clinic transplant board early April to see if they approve listing me then I wait.. If it’s yes I will just wait for the phone call and go from there.

Nothing else I can do!

March 10, 2019

Week one made it through I’m still a little sore from Friday, but nothing major to report. I have a procedure on Tuesday, I’m not sure what it is. I also have blood work and X-ray’s as well as other appointments. I will be st Cleveland Clinic Main Campus all day 8-4, I am there so much I should be on the payroll.

March 8, 2019

Day three surgery time I am having a heart catheterization done, I am waiting to go back now. I am supposed to be put in a twilight state, which I am not happy about. But I got this so I will let you all know how I am doing tomorrow.

March 8, 2019

Day two of the three day appointments, yesterday was so horrible it makes no sense. But I made it through, and I am almost done with my last test.

Then blood work then I can go home and rest for the day. Between the cold weather and the rest procedures. Have not been fun at all, so can’t wait until the week is finished.

Just need to get through Friday then I am good for this week. Then next week it’s only a day of appointments for thus far.

March 8, 2019

Thank you all for your donations, and words of encouragement just know I am fighting hard to with this.

You’re more than welcome to text or email with questions regarding what’s going on.

February 27, 2019

Sorry for such a late delay I have been a bit under the weather, but the good news is I have managed to stay out the hospital. I just finished another round of antibiotics so let’s hope it stays that way.

Next week I will be at my second home Cleveland Clinic Hospital, most of the time for testing. March 5th, 6th, 8th and 12th I will be there all day. Three of those days I will have procedures done as right now I know I will be put in a twilight for one of them. I will let you know how they go.

February 15, 2019

The last few days haven’t been nice but the past few weeks weren’t to bad. I did get some bad news today one of the test for the lung transplant was denied by my insurance company. I know my doctor will appeal it. So no worries I know that it would be approved in the long run.

February 8, 2019

Well it’s Friday nothing new to report, just glad the weekend will start soon. I hope to get something done this weekend, but we know how that can go. I at least want to wash my hair and cut Big Head hair he needs it. But I feel pretty cool today, still have pain but that’s expected. Nothing new to add to that list thank God!

February 4, 2019

As I have previously stated everyday for me is different, today is one of those days. I decided to take a sick day today, because I am in a lot of pain especially my ribs.

My ribs hurting affects my breathing my goal today is to try and get the pain under control plus get some rest. I do not want to take a trip back to the ER, but of course I will if I have to.

February 3, 2019

These bitter cold days I managed to get past them. Now we have warmer weather, I hope people still realize that this is still winter. I am doing my very best at trying to stay out the hospital.

The new medication that the insurance company finally approved, I still may not take because of the risk of my chances of getting sick more.

I am actually looking forward to what may be my last testing, before they take my case to the board to be listed on the Transplant list. It’s very hard to believe I am talking about a lung transplant, but I am still in the land of the living and that’s all that matters.

Please keep in mind that EVERYDAY IS DIFFERENT, the only things I know for sure is I will go to appointments and work. Because I have to do those things, unless someone wants to pay all my bills and let me get on their medical.

January 30, 2019

So my body seems to hate this cold worse than my lungs do. Although I do have a very nice and well protected face mask. Extremely cold or hot weather isn’t a friend to those individuals like myself.

Also, I don’t mind answering any questions you may have regarding my medical condition. However, assuming that you know only makes matters worse.

Not to mention I think I did a pretty good job putting everything on hear for anyone who visits. I am doing okay today even with the extreme cold. My number one thing right now is staying on top of my pain medication, and knowing when my oxygen has went below 90%.

January 27, 2019

Sorry it’s been so many days since my last update. My ribs are still sore as heck, but nothing like what sent me to the hospital. I am staying on top of my pain medication so it helps a lot with the pain.

I just have to remember to not overdue things, which for me can happen easily.

I believe March will be my last testing before they bring my case to the board. So if I pass all of the test and I don’t have to have anymore. Then my case is going to the board. So please keep those prayers going up for me.

Today I feel okay I am up and moving around a little, getting ready for work tomorrow.

January 22, 2019

A little progress today at my Lung Transplant appointments. They are going to start testing me for my last appointments, so that I can possibly get kntbe transplant list. But now it looks like I have scoliosis, osteoporosis and secondary pulmonary hypertension. More test needs to be done to confirm, the scoliosis and SPH.

January 18, 2019

I am still in the hospital I found out yesterday that I have osteoporosis, from the steroids I am on and the high dose they give me when I am admitted in the hospital . No worries though they are going to take care of that so I don’t break my ribs again. I am getting the best care from the #1 hospital in the United States for my condition.

January 17, 2019

Just got the letter from my insurance company, the medication that my Lung Doctor wanted to me on has now been approved. That is a great thing, this medication can possibly prolong me from having the Lung Transplant. NO the medication will not cure my lungs! But we hope that it makes my current lungs last a little bit longer. So I can get stronger, keep getting skinny, and raise the money for my caregivers and medication. Also, any other things that my insurance doesn’t cover.

January 16, 2019

I am still in the hospital because of my ribs, I was told that I have 5 total rib fractures/breaks 3 of them old. So after getting morphine after morphine, they decided to put in a nerve block it. The nerve block is working don’t know how long I will have it in. You can see the picture below.

January 15, 2019

Today makes one year that changed my life forever. Being in the hospital from January 15t, 2018-April can’t recall the exact date.

But I am in the emergency room again with fractured ribs, and in so much pain I am crying. Don’t know if I will be staying just yet.

January 12, 2019

I found out while in the hospital during New Years, that my ribs haven’t healed from the surgery I had on January 15th 2018. So they are still fractured, I unfortunately have had a cough since January 2018. I think before then also but i can’t remember it comes from the lung disease. So coughing has slowed down the healing process of my ribs, it is very painful but I deal with it. Plus take a lot of pain medicine. With that being said if you see me and would like to hug me PLEASE be gentle.

January 1, 2019

Looks like I get to go home today, didn’t think I would bring in 2019 in the hospital. But unfortunately I have, I feel a lot better than I did when I came in on Friday I am thankful for that.

December 30, 2018

Still in the hospital not sure if I will be home before the New Year. They want to make sure the infection is gone, so I don’t end back in here anytime soon. This no immune system thing makes this happen so often, especially if I don’t catch it soon enough.

December 28, 2018

I am being admitted into Fairview Hospital, for low Oxygen as well as a possible infection in my blood stream. Been my yearly struggle so I guess you can say I am use to it.

December 23, 2018

Today I am not doing well I think I am coming down with a cold which it’s very easy for me to do. Usually when this happens I end up in the hospital for a week or so. Trying to do everything I can at home to avoid it, but it usually doesn’t happen. My Lung Doctor tries to catch it before it’s full blown, by starting me on an additional antibiotic while I am at home. If I am no better tomorrow I will make the request and hopefully avoid the hospital.

December 15, 2018

I go back to see the lung transplant people on January 21st, for some more testing. I will also have an hour sit down with my social worker, and I will see the doctor and nurse.

December 10, 2018

I was supposed to start on a new medication that would prolong me getting sick sooner. However, my insurance company has denied it. I haven’t spoken with my lung doctor since I received the denial letter to see what the next steps are. As of now I will just continue to take the medications that I have, and try to stay as healthy as I can.