I had been experiencing symptoms such as shortness of breath
for a few years now. My pulmonologist had me go see a pulmonary hypertension
specialist in one of the best hospitals (University of Michigan). At the time
(8 years ago…2010), I had a mean PA pressure of 21 and it was concluded that I
did not have PAH. Fast forward to October 2018 when the first cold hit in
Michigan. Out of nowhere my shortness of breath got really bad. Walking to a
few feet had me gasping for air. Along with that, I was experiencing
lightheadedness and dizziness. I thought it would pass. It didn’t.
Officially diagnosed on 12-28-2019 with a mean PA pressure
of 47, I was not surprised to hear I have pulmonary hypertension (PAH). I have
had Lupus since May 2007 which progressed to Lupus Nephritis in 2012. I have
many other issues related to my Lupus but that is another story of its own.
There are 14 different types of treatment for pulmonary
hypertension. My PH specialist wanted to start me on Tadalafil
(Adcirca/Cialis) but my insurance did not approve it so I started on Sildenafil (Viagra) instead. I was only on it for 5 days when I noticed it was dropping my
oxygen even at rest. So my PH specialist started me on the Tyvaso inhaler. (I
think it is really important that I start writing about what I am experiencing
so that I can remember what I had gone through and maybe help others one day
like I had with my Lupus. Looking back, I wish I had continued my Lupus blog
since I do get a lot of questions about Lupus meds and what I experienced. But I am back now!)
TYVASO:
Day 1: I did the
first treatment in the morning starting at 3 puffs 4 times a day. After that I
was bad. The first puff made me feel terrible – much more short of breath,
lightheaded and dizzy. This happened while I was doing some shopping at Meijer
for the Super Bowl party that night (Patriots vs. Rams). So I skipped the 2nd
and 3rd dose. Full disclosure, I do not know if it was the treatment
or the weather that made me feel awful that day. I wanted to give up.
Day 2: I felt
great! After the day’s first treatment, I tried to do a 6 minute walk. (I keep
a pulse ox with me at all times to monitor my progess.) My O2 sat never dipped
below 91 and maintained a high of 94 while walking at work.
Day 3 (today): I didn’t get much sleep the
night before (about 5.5 hours) so I was feeling exhausted and it felt like I
had an elephant sitting on my chest. Regardless I pushed myself and made sure I
got some exercise in. I did 4 walks at work today (5 minutes / 7 minutes / 4
minutes / 7 minutes). My lowest O2 sat was 88 with a high of 96-98. The thing I
have noticed while I have been monitoring is that my O2 ALWAYS dips below 90
when I start walking. Then I rest and take deep breaths (breathing in through
the nose and breathing out steadily through my mouth). This brings my O2 sats
up more quickly. Afterward, I can walk for longer periods of time without any
dipping. Today, I did a fast-paced walk and did fantastic! I wish I could have
kept going but I did have to work … haha
The plan is to get to 9 breaths 4 times daily (which is
everyone’s maximum dosage). Next week I will be increasing my dosage from 3
puffs 4 times daily to 6 puffs 4 times daily. Hopefully all will go well.
I will continue to update my symptoms and progress as I use
Tyvaso.
Labels:
improvement,
lupus,
medications,
PAH,
progress,
pulmonary hypertension,
side effects,
Tyvaso
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