Tyvaso is on HOLD…

Living On Oxygen for Life

I am not going to lie to you. I am so relieved. Today, I had a doctor appointment to see one of my doctors (not a PH doctor). This doctor called my pulmonary hypertension doctor to report that I wasn’t breathing well. Those two doctors talked and then a bit of phone tag started and finally, my PH doctor told me to stop taking Tyvaso. I’m trying to get in to see my PH doctor sometime next week. The problem with that is the PH doctor doesn’t have office visits on the one day my husband has off from work (dentist appointment) and can take me (after said dentist appointment). I think they forget (because they have so many other patients) that I live pretty far away from the hospital. My husband does NOT want me to drive there on my own.

I started taking Tyvaso last Friday (one week ago). I started on 3 inhalations, 4 times a day. I did that dose on Friday, Saturday & Sunday. By Monday I was really suffering with serious shortness of breath, my lungs, esophagus, and bronchial tubes hurt. It hurt to take a deep breath… so I didn’t dare cough, sneeze, or yawn. So, I emailed the doctor on Monday morning and they responded with reducing the dose to 2 inhalations, 4 times a day for one week. I still had the same bad side effects today, even while taking the reduced dose from Monday through today.

The PH doctor said there are a few patients that have this similar reaction with Tyvaso. It’s not often that people react this way though. The doctor may suggest restarting Tyvaso at 1 inhalation, 4 times a day but I just don’t think that I can do it. I’ve had these side effects from the very first dose of Tyvaso. It’s not something that gradually started happening over time as I took this medicine. I do not want to have to put myself through this again.

I’m looking forward to getting back to my happy self again. =o)

A Trial Life on Tyvaso

Tyvaso equipment

Living On Oxygen for Life

Some of you know that I started on Tyvaso on Friday. A nurse showed up at my house, went through the paper work, the instructions on how to assemble and use the inhalers (there’s 2 of them to be rotated every other day). She stayed about an hour to make sure I did well on my first of 4 doses for the day.. everyday… for as long as I have to take this medicine. I’m to wake up in the morning, prepare the inhaler with distilled water and the Tyvaso medicine for the use of the whole day. Then, I do my first treatment. But on Friday, after the nurse left, my reactions to the medicine started to kick in. First it was a little sore throat and then within about 30 minutes after the treatment, from the back of my throat & down my esophagus felt like so raw that it hurt to inhale. That was just the beginning. I was like.. what have I gotten myself into??

I crawled into bed and swore I was not going to cry. My husband, K, wasn’t home yet. I so needed him. He’s my rock but I was going to be strong in the face of this pain. Right? So, the puppy hopped up on the bed and kept me company. When K got home, he walked into the bedroom like he was walking on eggshells. “How’d it go?” He asked gently. He REALLY didn’t need to ask. He just knows these things. I went into the kitchen with him and watched him make his lunch. I sit at the table still holding strong to my “I am NOT going to cry.” But it just came… I was so mad.. so very very mad. He asked me why I was mad. At first I thought surely he’s not being obtuse, right? Instead of getting upset at his question, I realized that he was just trying to get me to talk about how I was feeling. So I told him that I was mad because I didn’t understand why I was taking a medicine that made me feel so badly. Why do I have to feel bad before I feel better? I was pretty optimistic about this medicine before I started it. Don’t get me wrong. I haven’t given up but being in pain like this sucks bad.

My husband has been totally wonderful this weekend. After each treatment for about 3 hours, I get short of breath and breathing hurts. When I get up to do anything, I have to do it slowly because of the breathing problem and the pain. I just don’t have strength to do what I was able to do before the medicine. I’ve been on it 3 days now. Is this normal? I’ll be calling the doctor tomorrow. I’m only on the starting dose right now. I am suppose to raise the amount of inhalations next week. UGH!

Quick Update

Living On Oxygen foLife

Tomorrow I’m going try to sit down at my computer and probably pour out my heart to my readers. The last few days have been really difficult for me emotionally and physically. Right now I’m going to try to get a good night sleep and hope tomorrow things will be brighter and better.

Tyvaso news!

Living On Oxygen for Life

Finally and Oh man, not yet!!! Friday is the day I begin taking Tyvaso. A package of equipment and medication will arrive tomorrow and a nurse will arrive on Friday to show me how to prepare and use the inhaler. Apparently the inhaler or medication needs distilled water. So, I’ll have to make a run to the grocery store (maybe I can get my husband to do that!) to buy some. I have a dvd somewhere around here that I’m suppose to watch before the nurse gets here but I think I left it in my car. Ooops!

Internally I feel like this is a momentous occasion. Am I ready for this? Mentally, not really. Well, you don’t want me to lie to you, do you? Starting on Friday, I will be taking another medication for my Pulmonary Hypertension. Two very expensive medications. Tracleer and Tyvaso. I truly hope Tyvaso does more than the Tracleer does for me. Though, Tracleer does well to lower the Pulmonary pressures but it does not help me breathe easier or give me more energy. Thus, the reason for me to try the Tyvaso together with the Tracleer.

Wish me luck!

Finished my sister’s afghan

Living On Oxygen for Life

My sister's afghan I made for her.

I finally finished this afghan that I made for my younger sister. She’s so wonderful as is my older sister. Neither one of them ever treated me as if I’m disabled while I was a child. They treated me as a normal kid, including me in most kid-like fun. I say most because I had some physical limitations.

I’ve never made an afghan where you had to join the pieces together. I learned how to do this by watching some awesome video tutorials at The Crochet Crowd.

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Tyvaso News!!!!

Living On Oxygen for Life

I heard today from my health insurance company. They approved the Tyvaso medication for me. I’m nervous but optimistic. Telling my husband about the potential cost of the medicine was a blow to both of us. The bottom line of the cost isn’t known until I start actually taking Tyvaso. At least it’s the inhaler form of the drug verses the I.V pump version. If all else fails, there is Caring Voice Coalition.

Stuffy nose while using your bipap machine?

Living on Oxygen for Life

I finally got tired of fighting the stuffy nose problem that I have when I go to bed. Whether for a nap or a night long sleep, I strap on my bipap mask and plug in my oxygen tubing to the mask and crawl into bed to lay my head on a stack of two pillows. No matter what I did, I would always start off the night with a stuffed up nose that lasts anywhere between 15 to 30 minutes before it clears enough to half way breathe. I use a nose mask… not a full face mask with my bipap. So I have to breathe through my mask. I also have a small fan blowing all night directly in my direction from about 4 feet away on my dresser. That helps me with the claustrophobia feeling I get while wearing the mask.

So, I broke down and bought some Breathe Right Advanced nose strips. I tried one last night and let me tell you… It worked!!! Wow! (doing a happy dance!) From the moment I lied down and until I woke up, I was breathing through a clear nose! This is a huge victory for me. Yea!!! Why did I wait so long to try these things???

On Breathe Right’s website, they are offering a way to receive a free sample by mail and a coupon towards a purchase of the strips. I’m posting this because I’ve had people ask about this problem. I hope this will help them too. Here’s the link: http://www.breatheright.com/offers I don’t know how long this offer will last. So, hurry!

The Living On O2 for Life Community Facebook Page is slowly building into something great. Come check it out! Have a REALLY GREAT DAY and don’t forget to follow my blog!  http://www.breatheright.com/offers

 

UPDATE!

I just noticed the Breathe Right offer link was broken momentarily but I fixed it. I think. Sorry about that!

Do I need to worry about this?

Living On Oxygen for Life

Every month I have lab work done because I take a medication called Tracleer for a disease I was born with, Pulmonary Hypertension. These two tests listed below help my doctors monitor how I’m tolerating the medication, especially my liver.

  • CBC with Differential
  • Comprehensive Metabolic Panel

And every 3 months, I have a different blood test that monitors my thyroid.

  • Thyroid Stimulating Hormone

Well,  I had my lab work done yesterday and I already have the results. Which in itself is pretty amazingly fast! Though, I was worried about the TSH results I read. It’s 5.05 which is higher than normal. So, the nurse contacted me to say that the doctor wants me to repeat this test again next time I get my labs done. Then I was thinking back to my last annual physical I had where my Primary Physician also ordered a TSH test (back in Spring of 2012). I vaguely remember those TSH results were a little high too. So, should I worry about this?

If I start worrying about this, I’m just wasting valuable mental energy because I know I can not possible do anything to physically change the results. I’m just going to have to wait until next month when the new TSH results come back from the lab. I still haven’t heard back from the insurance company about taking Tyvaso. Is it suppose to take this long to get approved? Good grief… can I find anything else to worry about?? *grin*

In other news.. something more cheery.. I’ve applied to volunteer my sewing and crocheting abilities for a Children’s Hospital. I’ve always wanted to volunteer but it’s pretty hard to find volunteer positions for people on oxygen. I especially want to do this volunteering for children. I once received a small pillow sewn by a ladies church group while I was in the hospital at the age of 13 years old. That little pillow has remained with me throughout my life. It’s amazing how something like a little pillow or blanket could add happiness to a child in the hospital.

You can find me on Facebook at: LivingOnO2forLife

Which one?

Living On Oxygen for Life

Are you living? Or existing? I ask myself this whenever I feel as if I need a kick in the pants to get myself motivated.

It’s a pretty good question. I hate to think of myself as just existing in life. To stop participating in LIFE is to just to exist.

I have a simple checklist that I review:

1. Have I stopped phoning my family and friends?
2. Do I leave the house without being prodded by my spouse?
3. Am I skipping any meals?
4. Do I get dressed for the day in regular clothes (not sweats)?
5. Am I no longer interested in my hobbies?

Being involved in something as simple as an online support group or chatting with your friends & family can help move you from existing to living your life.

This is what I ask myself. Life is happening all around us. Be involved in yours.

I am on Facebook at Living On O2 for Life. I started this page a few days ago.

A step forward…

Living On Oxygen for Life

Life is starting to calm down for me again. I made it through the doctor appointments and even the over-night sleep oximetry test. I don’t have the results back yet but I know when I get up out of bed without my bipap and oxygen on, my saturation drops to 75 within about a minute of time. Yikes!

I’m still awaiting word from my health insurance about whether they will approve Tyvaso for me. I read that it costs about $100,000 annually for this medication. I’m not sure how that price is justified. It’s highly outrageous. All I know is that if or when (gotta stay optimistic!) the insurance approves Tyvaso for me and I start taking it, there is suppose to be someone who comes to my house to teach me how to work the battery powered inhaler. I’ll have to do this inhaler 4 times a day, 4 hours apart. My husband tells me that I should start setting timer alerts on my cellphone so I won’t miss a dose. I am so terrible about remembering things.

I hope everyone has a lovely week. I’m finishing up some of my afghans. One for my sister and one I’m saving for an auction. I’ll be starting a new one soon. Below is a picture of the one I’m making for my sister. I’ve got all of the pieces sewn together now. Don’t forget to FOLLOW my blog!

sisterafghan

I survived!

Living On Oxygen for Life

I survived… barely. Or at least that’s how I felt after the 6-minute walk I did. And I did it on 4 liters of oxygen! I asked my husband how he thought I did and he said I started out like I was shot from a cannon. I was like, “Really???” He says, “Yeah, but you were suffering there at the end.” Boy howdy was I ever! I know it’s not a race and I should pace myself better but I always want to do as well as I can each time. By the time the 4 1/2 minute mark came, my left leg felt like it was going to give out on me. I was breathing hard and heavy… in through my nose (for full oxygen power!) and out through my mouth (out bad CO2! Out! Out! Out!).

My actual doctor appointment which was before the six minute walk went fairly smoothly. I now get to try a new drug. I’m a little nervous because this is something I have to do 4 times a day. I’m such a disorganized person. This new medication is called Tyvaso. I have to give it at least a 3 to 6 month try to see if it is something that will help me or if I can even tolerate it. The day wasn’t awful. I mean, I got to go out for lunch. Hopefully after tomorrow’s doctor appointment I’ll get my really big surprise from K! *fingers crossed*

Since I had a little power rest… (resting awake with my bipap on in bed while reading a book on my cellphone & playing with the pup, Rocco) I am cooking some chicken for dinner. It smells delicious! I’m thinking chicken tortilla soup for tonight.

T minus 30 minutes…

Living on Oxygen for Life

T minus 30 minutes to go until I leave for my Pulmonary Hypertension doctor appointment. I feel queasy and stressed about going. I hope the doctor doesn’t want me to do a bunch of tests: 6-minute walk (Yuck!), Echocardiogram, or a CT scan of my lungs. It’s been a year, I think, since these have been done.

I keep reminding myself of my super awesome reward. Though, my husband said it will just be that “I’m” taking him to lunch. I’m like…. “Okaaaaay….”. Don’t forget to imagine me smiling saying that while rolling my eyes. =o)

I’ll post updates! Have a great weekend everyone! Be sure to follow my blog.