A Webinar

Today I am invited to participate in a webinar for PH. I am excited. This is a rare disease and you don't meet many people with it, certainly not that live anywhere near me. My only contact right now is through the web, other than the one support group meeting I went to in December. When you try to explain to some of your regular friends they don't understand. You are the same person, but now dealing with this, which is costly and time consuming. I have less patience for "friends" who want to call and complain about all the minor inconveniences. Yesterday I was having a bad day and was only able to excercise half the time I was before. After that I needed some oxygen. It was a frustrating day so I am really looking forward to today's webinar and learning more. Knowledge is power, especially when dealing with this. I am taking my meds, watching my salt intake, exercising as I am able but I want to feel there is more I can do to make this better. I have noticed I look tired all the time. My eyes have this look about them, hard to describe other than to say I look tired.
The cold weather was so hard to go out in, it's warmer today which is better for the lungs but the humidity works against them too.

A Visit to the Cardiologist

Yesterday morning I awoke at 8 a.m. My first thought was "It's January 9th and I have a cardiology appointment for 8:45. OOPS!" I bolted out of bed and jumped in the shower. I knew I wouldn't have time to dry my hair. I threw on the jeans and sweater I had worn the day before. I took one pill with water and jumped into the cold car and was on my way. There were school buses and I arrived ten minutes late. Thankfully no snide comments were made and I was taken into the room for an EKG. The nurse practioner then came in and asked about my meds. I told her that I was now on Adcirca and actually I thought the PH doctor had contacted him. Wrong. She asked all about that and I told her. She excused herself for a minute (I was told I was only there for a blood pressure check) and returned with the cardiologist I use in NJ. Dr. A. had a lot of questions for me and his immediate response was that he didn't feel I needed such an agressive approach to my PH as it was secondary and not primary. I was kind of taken back. Did it matter? I mean if I have type 2 diabetes instead of type 1 does that matter in the treatment of the disease? No. Yes type 2 is usually controlled by weight loss but still the drugs etc. are the same. I began to explain to him why Dr. Forfia put me on the medicine. I asked him if he had seen my right heart cath report and he said yes but he couldn't remember the numbers off the top of his head. I asked him to bring up the report. I then explained further once he could see my wedge pressure was 20. He deferred to the expert. As I left, I felt a bit strange. It was like I felt I needed to deffend my position. I have a disease and I am diligently seeking treatment with the doctor who is an expert in the field. I consider this cardiologist an excellent doctor and would highly recommend him. It's just that he probably has only seen a few people with this condition and often it's not treated. In a case like mine where the pressure is in the severe category that could be a fatal mistake. Sorry, but I have ONE heart, ONE life. I am going to do what I believe to be the best for me. It doesn't really matter what anyone else says. ONLY I will leave the world, alone, if I have failed to get the proper treatment. I can't stress that enough.
I'm not ready to go. I'm going to fight for every year, day and minute. I'm not done yet. I will not go quietly into the dark night.

Taking on Fluid

I have spoken with a few other patients with pulmonary hypertension. None of them seem to be as vulnerable to the salt/fluid issue that is a daily struggle for me. I have to count sodium on everything I eat even if only an estimate. Eating out has become so very tricky, particularly at places like the Olive Garden. Used to love it but now don't even attempt to find anything there I can eat. I do better at a diner where they will grill a piece of chicken, I can get a plain baked potato and a salad with dressing on the side. Salad dressings hide so much sodium it is mind boggling! I have begun only eating at places which publish the nutritional information online and I can preplan the sodium.
I am doing better on the Adcirca although it does have side effects and my stomach has been a mess. I am taking Prilocec daily again. There are many drugs that I cannot take with it and I have to call a doctor or pharmacist before taking anything. The drug companies for these type drugs have a nurse on call 24/7 and I had to call one night at 2 a.m.! All for permission to take Tums.
It is bitter cold outside today, 30 degrees and it's hard for me to breathe if I go out. I have a few pounds of fluid on me and I am getting out of breath easily. I know that this will wax and wane depending on fluid and other factors.
I am getting more comfortable by chatting with other patients online. There is a great website for people who have pulmonary hypertension. If you have it or want to learn more about it visit http://www.phassociation.org/. I have pulmonary arterial hypertension technically which means I have PH but am also in right heart failure. Hopefully if the meds lower the pressure, that will change. Life goes on. People live with this disease and continue to fight for each day. I talk to people who have lived six years and one woman who has battled this for twenty years. If you are diagnosed with this disease to the degree I have it you cannot have children. Well, going to go check out the chat today and see who's there. Some of the patients are so knowledgeable and helpful.

I Miss My Memory

The old me had an excellent memory. Excellent I tell you. Where is it? I want it back. Sadly, many people with PH have memory problems. It's because the condition stops oxygen from being in your blood (the heart pumps it to the lungs where they convert the air to oxygen and distribute it throughout your body.) You get so frustrated because you know what is happening but are powerless to stop it.

I have been on the Adcirca for 15 days now. It's too soon to know if it's working. I had a few really bad days recently and going to complete my cardiac rehab was really tough. I had to force myself. I finish tomorrow and I will be so glad to be through with it. It's a good thing to do to recondition your heart after surgery but when you are struggling with the PH it's rough. For some reason I have nights I cannot fall asleep. Other nights I sleep ten hours and wake feeling tired. I sleep with a cpap machine and oxygen. Right now I have dark circles under my eyes. I need to go to bed. More later.

Denial

I belong to a new group and I don't want to be a member. Not that there is anything wrong with the lovely people I have met in person, on the phone and in an online chat room. I just don't want to have this fatal condition. Sometimes it's overwhelming. I don't want to feel like that. I have to work on my knee jerk reaction to things. Yesterday my mail order company (which my insurance forces me to use) messed up. They mailed me blood thinner in the generic form where I can only take the name brand Coumadin. My doctor had called them about this before. They needed a new script and his office faxed one over without checking the written as dispensed box (they didn't see the need as the doctor had called and asked my record to be notated.) I yelled then called them and the woman kept telling me that I hadn't followed their guidelines. I kept saying they had the doctor's comments on file and she agreed but said I needed the rx rewritten and the box checked. I had already paid for this script and to her credit she got a supervisor to refund it since the pills had to go in the garbage.
I weighed myself and gained five pounds in fluid over the past two days. This is not good. Today I am not touching anything with a drop of salt in it. I am really concerned because this is the way you get into a fluid crisis. I broke down and had two slices of pizza on Friday. Big mistake. I can't have that much salt. I have made a pot of low sodium chicken soup for dinner. Just hoping that the diruretics get this off of me and fast.

Side Effects

I have learned that Adcirca has side effects. Didn't want to read them before I started it but I swear I have experienced almost all of the reported ones. Nausea hit me first but I fell asleep with my head elevated.Woke up with a headache (another one) and felt somewhat ill during the night. Second night I experienced bad leg pains and some back pain (symptoms 3 and 4.) I was afraid to take anything for pain as you are supposed to run anything you want to take by the pharmacist first. I had to endure leg pain until 8 a.m. when I got through to one. He said to try the Tylenol and if it didn't work I could take my prescription pain reliever. Whew. Hoping for some relief and I got it. By the way, have I mentioned that this isn't the kind of drug you pick up at CVS? There are a few companies that distribute it and you have to order it a week in advance. It comes via UPS. They say it will take a few months before I know if it's working so why do I have the side effects immediately? I am hoping that means it's helping right away to open up the blood vessels to the lung. I had to cancel rehab this morning as my legs could barely move. Hopefully next week will find me with more energy and less pain/symptoms.

Starting Adcirca

My insurance company sent the approval, the drug company is subsidizing my copay and I will only be paying $30.00 per month. The adcirca arrived today. Oh happy day. I was so happy to get it and took it after reading the side effects. You can get headaches, nausea, lightheadedness and fainting. I have to get up slowly at least at first until I see how this will effect me.

You can't drink with the medications for this disease which I am sure is a big adjustment for some people.

Today at rehab I ran into a problem. I was having a bad day and just felt a bit of tightness in my chest as I was on the treadmill. My heartrate was too fast and they made me slow way down and then rest and stay awhile until the rate dropped down. It did and I came home and took it easy. I am currently reading the patient handbook for PH. It explains, in layman's terms, everything you need to know about the disease. Since it's not a common thing it's good to know things you might not know, even if you are communicating with a few other patients. Almost the day I was diagnosed I found a great website for the Pulmonary Hypertension Association with links for lots of things. I joined and ordered the guide from there. A great resource for any new patient, or even one who just wants to know more. I have learned about receptor cells and many other things.