Great news! I was awarded the grant for Letairis! I received my first 30 day supply by Fed Ex today from Accreedo, the pharmacy that handles the special drugs for PAH patients (pulmonary arterial hypertension). That was so fast! I only sent my form back by mail to my doctor the beginning of last week. I will take my first 5mg pill tonight. It will take several months to see if this drug is working. There are 10mg doses as well if this dosage doesn’t do what we hope. The side effects are: lowering of red blood cell counts, swelling from fluid retention, stuffy nose and inflamed nasal passages, hot flashes, heart palpatations, red and sore throat, stomach pain, constipation, shortness of breath (your patient chart shows sob, so don’t take it personally), and headache. Several of these side effects I already have due to other causes, so I think I can handle these just fine. Some of the drugs I have taken in the past have had to be weighed as to whether the benefits out weigh the side effects. Prednisone is such a drug when taken long term as I do. Letaris doesn’t seem to have that problem. Every couple months I have to perform the 6 minute walk test. I am not sure how I am going to do that when I cannot walk more than a few feet partly because I cannot breathe and walk at the same time but also because of the avascular necrosis. Scleroderma has filled my body with scar tissue and that and prednisone have reduced the ability of my blood to get to my hips and legs. It is very painful to move and walk and weakens my bones. Without prednisone, the alternative is much worse. The 6 minute walk test is to see if the drug is working to slow down the disease process and help me breathe a little easier. I am sure my team of doctors and I will figure out something to test the effects of letaris. Hopefully I will eventually see improvement in my day to day living.
I have a wonderful team of doctors at Kaiser. They include a pulmonary specialist, rhuematologist, gastroenterologist, and a doctor who specializes in critical care. If I see one doctor, within one day all of them have the info from that visit and they regularly communicate with each other about my disease process. I see my gastro doc in a about 2 weeks. Because of my anemia, it is believed I have a slow bleed in my stomach so will probably have a endoscopy scheduled shortly thereafter. I haven’t any major digestive problems for a while so I am definitely due for an endo. For me, it is a great way to nap my day away.
I have always had wonderful care at Kaiser. I suggest if you do not like your doctor or the care you are receiving, find another doctor. They are out there and it can make a huge difference in how you view life.
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About Me
- Dee Dee Hunt
- I have scleroderma, avascular necrosis, cervical spinal disc disease, pulmonary fibrosis, pulmonary aterial hypertension, and several other things that go with these diseases. I was diagnosed in 1991. I am 56. Brian, my husband was diagnosed 3 years ago with early onset Alzheimer's. He is 57. This blog is about the two of us living with hope that a cure will be found for these and other orphan diseases.
2 comments:
Wow Dee Dee, congrats on getting the grant! That is so great! So happy for you. Wow, there is so much that goes into your treatment, I never knew. A "team" of doctors? Wow. I'm so glad that there's an opportunity here for things to turn around for you. And that you and Brian have each other. That's probably one of the most important things. Love you Dee Dee. Glad you are writing this.
That's wonderful news (though, I already knew it because you told me this afternoon). On another note, I also really like Kaiser. I have had them my whole life, and while they are more expensive than a lot of other coverage out there, I don't want to ever switch. I hear stories from non-Kaiser members about needing an appointment for, let's say, a foot pain. They may have to wait a week to three to be seen. If I were to call in for the same problem (or even something more major), Kaiser asks if I want to come in that afternoon...of, if that isn't convenient, how about tomorrow morning?
I used to not be pleased with my doctor, who, incidentally, I hear you also have: Bella Desai. She is a lovely Indian lady (India, Indian), but I used to have such a difficult time understanding her that I just got frustrated at every appointment. However, either her English has improved or my watching of Bollywood movies has paid off because I don't have any trouble now. In fact, as much as I love Indian people, now I relish going to see her just so I can enjoy her pretty sing-song accent. Unfortunately, or more fortunately, for me, I don't have the chance to hear her very often. I wish you could say the same :o(
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