Since I last wrote, more stuff has happened. I started the Tyvaso and two weeks ago I finally got approved and started Eliquis.
Now, I am not going to lie to you. This has not been easy. The Tyvaso is a whole production every day, 4 times a day. The Eliquis, just a pill. Here is a link to a video of Monique demonstrating the equipment for the Tyvaso. https://www.youtube.com/watch?v=gJlQp4V2lmA&t=55s
First Question after doing this for 6 weeks… Is the Tyvaso helping?
Well. I believe so. In the last week, I have been able to get to the car in under 20 minutes. I can go up the stairs three at a time before stopping and catching my breath. Unfortunately, bending over or any exertion requiring bending has not gotten better. Some days even when my oxygen is at 90 or above, I still feel like I am gasping for air. Other days, I am down to 85% and I feel fine. No clue other than supposedly this can happen.
I have had some reactions to the Tyvaso. I started wheezing more on Level 1. Level 3 had me coughing more – added pro air inhaler to help. Level 4 brought really bad headaches – Tylenol with half a cup of strong coffee to knock those out (it works). Level 5 brought tight chest and achiness in chest. So, it was dialed back to level 4 and doing a slower increase. Since it is taken 4 times a day, the amount of inhales you do can be adjusted. I was at 5,5,5,4 over the weekend. I graduated to 5,5,5,5 all the way across the day. 5 inhales first thing in the morning, 5 around 10 am, 5 around 2 pm and now 5 around 6 pm.
I was taking the last inhaling process closer to 7 and 8 pm, but somehow it interfered with my sleep. Since I have had to get up early to start my medication routine (and now i get dressed slowly due to fighting to breath), staying up late is not an option.
There is a nurse assigned to you to be there when you progress up to next set in inhalations. I am guessing they are there to make sure there is no immediate reaction to the next level of the medication. (I feel like i am sounding like a gamer.) They take your blood pressure three times during an hour. Then see you when you are scheduled to go up again.
Right now I am on hold. I need to get my lungs and heart used to this higher level.
My biggest gain has been to get off of Warfarin. What a problematic drug. It did what it needed to do, but there are just so many restrictions and side effects, it was making me miserable. Then getting labs every week. I can tell you now, I DO NOT miss that.
I still have anxiety attacks. That is due to the lower oxygen level at the time. Sometimes it has to do with being enclosed. Taking a bath and shower are still a challenge. But, I force myself. No one wants me to be stinky. Especially with all these medications. Who knows what I would smell like? I do make sure that there is someone close by physcially in the event I need assistance.
Some little tidbits I learned recently..
Did you know your blood pressure falls when you urinate or poop? Tyvaso also lowers your blood pressure for about 30 minutes. Lesson learned…go pee before taking medication.
Eliquis still has some same restrictions as Warfarin. Don’t eat anything dark green, leafy green or anything green. Be aware of fruit high in Vitamin K. It can increase the affect of the Eliquis causing bleeding problems.
Things I used to take for granted:
Laughing, crying, drinking cold liquids, icecream, eating in general, going for a walk, going out to eat, sleeping more than 4 hours, breezes, getting dressed in under 5 minutes.
So many things I either miss or wish I could still do. I am still able to work. Some days are good, some days are bad.
Traveling is out of the picture. Being on continuous oxygen poses a real problem for that.
I still hope to get the lung transplant. I am currently unable to get a hold of the coordinator for that.
In the mean time, everyday that I wake up is another day God can use me to His Glory.
Dr. wants a new pulmonary funtion test and echocardiogram to see if the Tyvaso and Eliquis are doing their job.