Saturday, November 26, 2016

Frustation with Hospital Doctors

Today marks day thirteen in the hospital. I'm torn on how I feel about this whole hospital stay. I do understand the necessity of my being in the hospital this time. There are times I can do IVs at home and manage on my own. Usually that is when I only decreased a little in lung function and we feel confident I can boost my numbers on my own.  But with a drop in lung function from 60% to 40% I know I can not do it on my own and I fully supported my CF doctors decision to admitt me.. (Read about why Orkambi has been rough so far HERE)

Since being admitted on the 14th of November, I have been feeling a little better. No more fevers, coughing/asthma attacks, better energy and mood., but my lung function isn't better. My biggest problem with this hospital stay has been the hospital doctors (not my CF doctors, but the general doctors that are put on my case).

I have had to remind them more than once to wear isolation outfits when they come in (including masks). Here are a few conversations I'd like to share too:

After being admitted:
Doc 1: Are you aware of your condition?
Me: My Cystic Fibrosis. Yes....
Doc 1: How long have you had it?
Me: It's a genetic disease, so since birth....
(My CF Doc took him aside and gave him a tutorial on what CF is and how to handle conversations)

After getting a yeast infection from anitbiotics:
Me: Another doctor started me on Diflucan for my yeast infection, but I think its not enough. They give it to me at 9am and by 7pm I'm misreable and it keeps me up all night.
Doc 2: We can't just give you more medication whenever you want it. There are reasons for our dosing and we cant just give you more pills
Me: I know that, but I'm on a low dose. In the past they have always given me a higher dose, because this happens a lot when I'm on Meropenem
Doc 2: We can't just give you a higher dose because you want it, your kidneys and liver have to work to..
(I cut her off)
Me: I'm not stupid, I know how it works. You haven't even checked to see what dose the doctor has me on. I usually am on 400 mg, they decided to start with 200 mg. Nevermind, I will just wait and talk to my CF doctors and they will fix it for me.
(the other doc in the room, changed the subject and looked at the rude doctor)
*It's an anitfungal, not a narcotic for crying out loud.*

My conversation the past few days with the hospital docs:

Doc: Well, it looks like you will be going home Monday
Me: I thought my CF Doc said a minimum of Monday and would see how my lung function test goes on Sunday
Doc: Well, you have had the standard 2 weeks of IV meds and you are doing well.
Me: I'm doing better, but still get out of breath walking to the cafeteria. My lung function was still 40% last time, I'm not okay with that lung function.
Doc: Well, you aren't on oxygen and you had your 2 weeks of meds. So not much else we can do for you, so you will be discharged on Monday.

I honestly feel like the hospital doctors see me sitting here looking okay (CF is an invisible disease mostly) and think "why the hell is she here." They don't care my lung function is 40% or that I get out of breath. As long as I don't need oxygen they are covered legally to send me home.  They are basically saying, so what if your lung function is 40% and you will never be able to grocery shop or run again. You don't need oxygen so you are healthy enough, especially for a CF patient.

I feel that just because I have CF does NOT mean it is okay for me to drop 20% in lung function in 2 months and it doesn't mean I have to deal with it and get used to this as my new baseline. I'm so angry at the way the hospital doctors are treating me, I can't wait until I see my CF doctors.

I'm  sure the hospital doctors just want to send me home, but I think my CF doctor will veto their decision and keep me here if my lung function test tomorrow is not improved.  While I hate being here, I know I can not do 12 breathing treatments and 4 airways clearances a day. Plus, eat enough to gain my weight back and get the daily exercise needed to bring my lung function up. Especially considering at home I will not have IV antibiotics or steriods to help me along the way.

I think I'm my lung function is not improved tomorrow I really should stay another week. I am NOT ready to admitt defeat with my lung function and i think the doctors should be happy to see a pateint so compliant and willing to do anything to be healthy.

Stay tuned for my next blog post "Up and Downs" of the hospital.

Wednesday, November 16, 2016

Orkambi & the Hospital

I haven't really felt up to blogging or doing anything since I got sick. I have been having a few breathing problems and more asthma attacks the last two weeks. I had my regular Cystic Fibrosis Clinic check up on Tuesday of last week. I knew it wouldn't be great, but I had no idea how bad it really was...

At clinic we found out my lung function dropped majorly from my "baseline" of 58% to around 38%.  My Respiratory therapist responded "Dang, that's transplant range, we gotta get those numbers up."

It's scary to think one sickness, one medication and my lung function can go from 58% to 30s. Where I struggle to breathe and could be listed for a transplant. But I have faith, hope, and trust. This is why. My doctor(s) at the CF Center are very proactive!

My doctor told me I had a couple options:
1. be admitted
2. Stop Orkambi
3. Keep doing Orkambi, but switch up some of my meds at home and call in a few days for update

Of course... I decided option 3. I do not want to give up on Orkambi, not yet and who ever wants to be admitted.

Doc K also explained that one of the reasons I felt like I was drowning or suffocating could be because the Orkambi was actually working. She said that all the mucus (gunk) over the years builds up, falls, and sits at the bottom of the lungs. Over time this extra weight in the bottom of the lungs is what slowly takes the elasticity out of the lungs, stretching them out. This is why the forced exhaled volume is the most important factor in lung function, it measures the elasticity. She said  Orkambi helps to allow more sodium chloride through the cells and move gunk along better (instead of gunk getting stuck and causing infections). Which is why Orkambi is so beneficial, it helps the gunk move properly. So less infections, time in hospital, or build up of gunk in the bottom of lungs, helping us to keep our lung elasticity.

Which is why I wasn't ready to give up. Doc explained that all the gunk over years accumulated in my lungs and now my Orkambi is moving it up. Which means it is clogging up majority of my lungs right now. So I went home with option three. after clinic A few days later I felt a lot worse. I had a minor fevers and  something like a sinus infection on top of it. I kept blowing my nose, coughing, and was sooo tired. I knew it was time for hospitalization.

So here I am in the hospital. I was admitted on Monday and I'm not sure how long I will be in. I'm still getting 101-102 fevers, coughing tons, lung function same horrible number, and get tired easily. My appetite is down and I'm constantly blowing my nose. BUT, I'm getting some more stuff out sometimes after Respiratory. Which is the key to clearing out my lungs. So we are taking it day by day. We have to make sure my lung function doesn't drop more & see how my body responds to the IVs antibiotics, 4 nebulizer treatments & CPT daily.

One small sign of hope it is starting to move stuff around in my lungs is this: For years I have cultured the same strain of pseudomonas. It is a strain resistant to all antibiotics and I have always cultured it. Well, my last culture showed a different strain they hadn't seen before. They believe it is an older strain that got covered up with the mucus over years and just sat in the bottom of my lungs. They new strain that I'm culturing is not resistant to Meropenem. So we can treat this strain with a Meropenem IV and see if I can keep bringing stuff up. I'm not found of Meropenem, last time I was on it I had diarrhea (C. diff related) for 6 months post hospital. UGH. So hopefully, I adjust quickly this time. But this new strain gives me a glimmer of hope to hang on to for now.

It is exciting to this new strains that were buried really deep are surfacing, but at the same time how long can I hold out feeling miserable and out of breath with low lung function. Especially since a few other CF friends said once they dropped from Orkambi (even after off the med) they couldn't get their lung function back up). So we have to be careful, since I'm already so low.

Right now it is day by day. I will keep everyone posted. Thanks to those who visited, sent the hospital-grams, or sent mail. I appreciate it, even while feeling miserable I am very bored. lol.

Thursday, November 10, 2016

"Do not send me to my grave"

I do not post a lot online about Politics, especially on my blog. I believe everyone has a right to vote for who they want (the whole point of Democracy). While I think my candidate is always the best choice, so does everyone else. I always hope voters educate themselves about the people running and understand what their platforms mean.

I am breaking my usual silence on politics in the post, because I also believe in freedom of speech. I'm do not write this to bash one person and praise another. It is more to have a place to speak my mind on our current situation in America.

I have a lot of worries about Donald Trump being America's President-elect. Besides his hatred for people of other nationalities, color, religion, sexual orientation, etc. Since this blog is focused on sharing my life with Cystic Fibrosis with the world, I will  focus my biggest concern. My title "Do not send me to my grave" explains my fear for my life with Donald Trump becoming President. My friend (with CF) Dustin Huff, said this (so I took the line from him); but it sums it up.

Donald Trump has repeatedly said he will repeal and replace the ACA ("Obamacare") first chance he gets. I have read the bullet points he presented as his plan. While yes, at first glance it may not look horrible enough to send me to my grave.

The Affordable Care Act ("ObamaCare") did two great things for me:

  1. Insurance can no longer deny me or raise my premium based on the fact I have a pre-existing condition.
  2. Insurance can not add limits (yearly or lifetime) to plans or raise my deductible, coinsurance. 
Donald's Trump's plan while not covering the first two great achievements brings in a third problem for my health:

       3. Having options for buying medications overseas.

Trump did say "He believes in keeping the protection of people with pre-existing conditions" in the past, but it is not addressed in his plan. Also, he has never mentioned anything about limiting insurance companies ability to raise plans costs for those who are ill. Infact, his plan has nothing in it to protect us from insurance companies.

Bottomline: Insurance companies need to make money too, they are a business like anyone else. I'm not saying this to protect them or feel sorry for them, but to explain why Trump's plan is not iron-clad. Mathematically insurance companies lose a lot of money on people like me. For example: We pay (and our employer) a total of about $700 a month for insurance. I also have an amazing plan though, where once I meet my individual deductible of $3,000 I have 100% coverage on everything. all meds, hospitalizations, etc (as long as in-network), which all my doctors are (since our insurance is large provider).  So I have a lot better deal than my insurance. My insurance last month paid out $77,000 (just for my daily meds), not including appointments, hospitalizations, or extra medications.

Now take my husband for instance, he never gets sick. He hasn't been to a doctor in years (other than a yearly -insurance required- check-up). So they make money off my husband (roughly $350 a month).

For everyone 1 person like me we would need 220 people like my husband to make up the money they lose on me. This is why ACA helped me. It made sure everyone single person paid for insurance, which allowed insurance companies to find the extra 220 people needed per sick person.

However, Trump's plan stated:

  1. "Completely repeal Obamacare. Our elected representatives must eliminate the individual mandate. No person should be required to buy insurance unless he or she wants to. " (
Without everyone purchasing Healthcare insurance the companies will not be able to find the numbers of buyers needed to make up for those of us with pre-existing conditions.  This will mean insurance will have to make up the money somewhere. Yearly or lifetime limits, which means once I reach the limit that is the maximum the insurance company will pay. Anything over that I pay out of pocket.... 

In typical year my insurance pays around: $1,011,800 a year on me.... If they even cap my limit at 250,000 or 500,000 I will be bankrupt after one year!!


Now for the third concern I had listed: Having options for buying medications overseas.

Trump's website (  has this listed as the last major point in his Healthcare replacement:

 "Remove barriers to entry into free markets for drug providers that offer safe, reliable and cheaper products. Congress will need the courage to step away from the special interests and do what is right for America. Though the pharmaceutical industry is in the private sector, drug companies provide a public service. Allowing consumers access to imported, safe and dependable drugs from overseas will bring more options to consumers."

Here is my biggest concern (as far as affecting the CF Community) with this aspect. Many major pharmaceutical companies will lose a lot of revenue if people import the medications. AbbVie is one company that has been listed as one of the companies affected by this. Without proper income the funding won't be there for research and supportive services for the CF Foundation. AbbVie and other big drug companies do support many non-profits and research for cures for drugs. 

Now, I'm not saying insurance companies or Pharmaceutical company are innocent. Some medications are way over priced. However, allowing importing of medication is opening up a lot of issues. 

 So there it is... All my concerns for my health with Donald Trump as President.  I do know repealing and replacing the ACA will take time. Which means I have a year or two before I start to be affected financially.  I do believe if the ACA is replaced with Trumps plan. I will be denied insurance or have limits added to my plan, or increased coinsurance. If I have a coinsurance of 20%... anyone want to do the math.... It is truly terrifying. 

However, now that Donald Trump has become our President Elect, I will just have to wait and see how it all works out. While I did not vote for Trump, I accept that he won. I'm shocked, sadden, and horrified. Even so, I do not want people to riot in the streets or become hostile and angry. We need to stay united as a country and not split further apart. 

All I can hope is that it doesn't turn out the way I (and half the country) believe it will. I hope, pray, and want to believe as a nation can come together. I do not support Trump, but when he is President I will not be disrespectful towards him or tear down other who do support him. 

Let's just hope this is NOT as bad as I think it will be.