"It was really difficult to walk to the bathroom, let alone take a shower, and I would be out of breath by the time I was done. I simply couldn’t understand why I was feeling this way and what was causing me to feel this way. It felt like running a mile, non-stop!"
- Elsa Dasigo
My name is Elsa Dasigo, I am from Honolulu, Hawaii and I'm the support group leader for the Hawaii Pulmonary Hypertension Association in Honolulu. I've been diagnosed with pulmonary hypertension in 2006. Before being diagnosed, I have never heard of PH or knew anyone with PH. I wasn't sure if I should feel scared or surprised about myself having PH, but the thought never really scared me when I found out I had it. I didn't know anything regarding PH, so I guess I wasn't that afraid of having it. Until I knew more about it and how it's a rare and incurable disease and the treatments I would need, that's when it actually hit me.
Before I was diagnosed, I starting feeling tired all the time and not wanting to do the things I would normally do. I basically did not have the energy to do anything. I seemed to be short of breath whenever I did anything. When I had to walk some, I had to pause at least half way before getting to my destination which was only a short distance away. It was really difficult to walk to the bathroom, let alone take a shower, and I would be out of breath by the time I was done. I simply couldn't understand why I was feeling this way and what was causing me to feel this way. It felt like running a mile, non-stop! Then I recalled not being able to sleep at nights because I had difficulty breathing and my chest would hurt. I saw my general physician several times when I first started feeling this way, only to hear my doctor tell me that I was over stressed, my blood pressure was high and maybe I needed to exercise and start eating healthy. "So what else is new?" I thought.
But I had a hunch that it was more serious than being over stressed and losing weight. I knew it had to be much more than that. I could tell and I could feel it. But my doctor kept telling me the same thing. Maybe she thought I was going crazy or losing my mind or imagining things. One night I was awake in the middle of the night because I couldn't sleep. My conscience was telling me to go the emergency room (ER) and at least have myself checked to see what causing me to feel this way. When I finally got to the ER, I didn't imagine staying the night let alone staying the entire week. They ran some tests and I was referred to a pulmonologist and did more tests and a right heart catheterization.
When the results came back, he told me that I had pulmonary hypertension. Okay, so what in the world is that? Never heard it. Never seen anyone with it. So I basically never knew what the heck it was. My new doctor talked about treatments and how it would affect my life from this day forward. He told me that my case was pretty severe and that I would need treatment as soon as possible. He started telling me that I had to wear an infusion pump 24/7 and a nurse from Accredo (who to this day has been there for me) would fly over from the mainland to show me how to use this pump and how to manage it. I thought, wow, this must be pretty serious for someone to fly in from the mainland to show me how to use it.
I was then placed on Flolan for close to three years and I started feeling so much better. I started feeling almost normal. But while I was on Flolan, it not only made me feel like my old self again, but I was experiencing these site infections all the time. Because my skin is so sensitive, I was having to deal with these site infections that were so bad, I had to get another central line replaced and this time it was on the other side of my chest. Then it would be okay for several months until the site infections starting coming back and the peripherally inserted central catheter (PICC) line was inserted to replace my central line temporarily. I swear I must've gone thru three central lines in two or three years and five to six PICC lines in between. I was really frustrated with this medication, but it did help me to feel better.
So with all the site infections and central lines, and PICC lines I was given an option to switch to another medication called Sub Q Remodulin. I was hesitant to try it because of what I heard about it and that it had some good sides to it as well. I eventually got switched to Remodulin and was told I had poke myself with the needle to insert the catheter. Since I can remember from when I was a little girl, I could not handle needle pokes, in any size or form what-so-ever. It took a nurse from Accredo and one of the hospital nurses to force myself to insert the needle and sort of hold me down while I inserted catheter. It took so long (approximately 20 minutes) to build enough courage to actually do it. That was the first and only time I actually did it. After being discharged from the hospital and finally at home with my new pump, I eventually had to do a site change and place the new catheter on the other side. I was so afraid to do it and I thought I would rather die. But luckily, I convinced my daughter and her girl friend to help me with it and they've been doing it ever since to this very day.
I really liked this new medication way better than Flolan, but there is the bad side of it too--the intense pain when you change sites. In the beginning, I would be in so much pain I could hardly get out of bed. I wasn't able to go to work because it would hurt so bad. I was in tremendous pain practically the entire day for at least two or three days. But it did get better along the way. I still continue to get site infections, so I need to change my catheter almost every week.
Now, with all that I've been through with both infusion pumps, I did another right heart catheterization and it seems like my pressures went down quite a bit. I'm currently weaning off this infusion pump and hopefully, if I'm able to tolerate without this pump, I'll be just taking oral meds to control my PH. I can't wait! By Mid-November of 2011, I should be completely off this pump. One of the things I couldn't do while I was on those pumps, and which I love to do, especially in Hawaii is go to the beach!! That's one of the first thing and places I'll be going....