A Glitch in the Road

I haven't been feeling all that great for awhile now. Thing is, why? I have so many issues that it's hard to pinpoint one. I have been anemic for over a year. I take iron pills on and off and then when it gets up, I get lazy about it and then slowly begin another decline. I thought that's why I wasn't feeling so good. On Oct. 10th I had a right heart catherization. Ugh. This was the first one I had in my neck. Previously they were done through the groin. Because I am on Coumadin (blood thinner) I was quite nervous about it. Honestly, it was much easier. I didn't even have an issue with the neck bleeding. The results of that were not so good though. MY Ph pressure had actually increased. I was already in the severe category. It went up another ten or so points. Not good. My wedge pressure also went up. The fluid I carry in my body is hurting my heart as well as the lung pressure. My right sided heart failure was known but now the left seems to be showing signs of it too. It's really hard to receive my PH treatment in Philadelphia and then have to do everything else with my cardiologist and lung specialist in New Jersey. It's time consuming, often I am trying not to be repeating tests all the time and getting copies of this one sent to that one. As though that were not enough to deal with, my husband's employer is changing health insurance companies. All my doctors took BC/BS but now they are switching over to United Healthcare. Neither my cardiologist or lung doctor take it. Yes, I can get a plan with out of network bens but if I do I am looking at many thousands of dollars out of pocket again. Things like this feel overwhelming when you don't feel good to begin with. I have started going to church again. I found a great church and that is helping me. I still love life, despite the struggles. I love knowing that when my body has had enough and this life ends, I will go to a much better place where there is no more suffering. Thank you Lord for that promise.

Sick and Tired :::yawn::::

It's been awhile since I have written in this blog. As with many other Phers I have multiple health issues. Right after Christmas I came down with an upper respiratory ailment and began running a lowgrade fever. I had to go see my lung specialist who immediately said what had been viral was now bacterial and put me on the first course of antibiotics, Levaquin. This drug is well known for knocking out pneumonia. My chest x ray did not show any pneumonia however it did show about half a litre of fluid surrounding my lungs. This is almost normal for me at this point. After a week I wasn't feeling a lot better and I went back. I was then given a huge dosage regimen of penicillin for the next week. If I wasn't feeling better by Sunday I was to let the doctor know as she would consider IV antibiotics and a hospitalization. I was feeling somewhat better and felt the chest part had really recovered. I was also using a nebulizer three times a day with a wonderful drug in it called Xopenex. It broke up the congestion. Fast forward a week or so and now I have developed the following: I am ALWAYS cold (one exception, in my bed with warm pjs on and under a down comforter designed for the chilly nights of New England. Other than that forget it! I am also seemingly compelled to eat ice. When talking with my mother, she reminds me that when my grandmother had those two symptoms she was always anemic. I went to the cardiologist today and he had the results of my bloodwork done on Monday. I can't believe it: my mother is right! I not only am anemic but he can tell I have been for some time. I have not been exercising because I simply have no energy right now to do so. I often feel light headed. I can sleep 8 hours and get up feeling very tired. He will be sending all that information over to my PCP, he thinks I might need a hematologist and shots. I hate needles but I hate this feeling even more. MY PH seems to be doing okay. I am not overly short on breath. My pulse oxymeter shows that I am rarely low now. I think the revatio is working well. One odd thing about the revatio. The other night I began to have really bad pains in my feet. My pain toleranced is quite high. I have had two open heart surgeries. (That means not only cutting through the sternum but the muscles, having ribs spread etc.) I am no stranger to pain and I want to tell you the pain was pretty bad. It felt like a sledge hammer had hit my feet several times each. I could barely stand to walk on them. I called the specialty pharmacy where I get my meds from and sure enough it is a KNOWN side effect. It lasted for a few days then went away. I asked a few PHriends and they had leg pain and/or foot pain. This is the value of knowing others who have what you have. Life goes on and I am doing okay except for the anemia. I have to get this treated and corrected. Everything is difficult when you are exhausted, my thinking is not clear and I am grumpy. Yes, I admit it, grumpy. Just ask the dog and cat. When they are whining and carrying on at 6:30 a.m. and my head is pounding it's not pretty. Hopefully my PCP (who is wonderful) will find me another doctor to help me. My cardiologist is also wonderful and such a great listener. He takes the time to listen to my complaints, answers any and all questions and is just helpful. I wish I had switched to him years earlier. Stay warm and carry on.