Insomnia

Is insomnia part of PH? Is it caused by PH meds? Since I have been on two and had trouble since I went on either one it seems a strange coincidence. What is really odd is that I may sleep well for two nights and then on the third it hits me like a Mack truck.

Last night:
Knowing husband has to wake up at 5:30 I agree to try to go to bed at 10 p.m. This should not be a problem as I have been awake since 7 a.m. I get in bed. Feel less sleepy than I did about an hour ago watching t.v.  I put on my Ipod and listen to music (resisting the urge to sing along as I know this will really annoy husband who I can see is already not liking me moving about.) An hour later I am now more awake than I was just an hour ago but still try to force myself to sleep. Take off the Ipod and put on the cpap mask. Usually the oxygen makes my heart relax and actually feels cool as I breathe it in. The air feels warm and I don't feel the usual oxygen relief. I lay there for over an hour trying to fall asleep. Try arranging pillows differently, focus on crickets chirping and bore myself to sleep. When this fails to work I am getting aggravated. I get up and go into the guest room and boot up the husband's laptop. No responses to messages sent on Ancestry.com and nothing good on Facebook either. I do a little ancestry research and feel really tired. By the time I shut the pc down I am all geared up again and decide to go downstairs and read. Two hours later it's nearly 4 a.m. and I think I can sleep. Now I have to get back into the bedroom with the skill of a Ninja, get the mask back on, turn on the cpap and crawl back in bed. If I wake him up again he will be like a rabid racoon come 5:30 a.m. I get into bed ever so quietly and boom I am finally asleep. At 7 a.m. (after 3 hours sleep) I am awake again. I take a pill and go back to sleep hoping to wake at 8 for my next pill. I do and then I just get up and head downstairs and do a meet and greet with the furboys. They are napping which they do anytime they want to. I am so jealous. I have so many items on my grocery list that I know I must go to the store. I know it will be torture. I make it getting only the few items I need. I am home, have lunch and am back online. It's nearly 3 and I am so exhausted. I am going to take a nap and pray that I can sleep again tonight.

Everyone now and then I actually wonder if I am part of a sleep deprivation experiment. My follow up thought is always that the previous thought is part of a sleep deprived hallucination.

A Small Attack

It's been awhile since I posted. I have been very busy with life. What I mean by life is the constant juggling act of trying to live a somewhat normal life while taking care of all the things that I must for my health.
The new drug has been doing alright. There are days that I am just more breathless than others. From other patients I talk to this is normal for someone with PH. On those days I must wear oxygen around the house or take a portable container if I must go out. I try not to go out those days because if I am unable to get a handicapped parking spot or go to a place that I can use a cart at to help me move around easier (a place with a shopping cart that I can lean on such as Home Goods or Target) then I cannot get around. I used to try to push myself harder on those days but what I learned was if I did that then I spent three or four in really bad shape afterwards. Now I just go with the flow and try not to get too upset about it. It's been an adjustment to switch from the one drug to the Revatio, as I must take it three times a day, seven hours apart. Sometimes I wake up late or forget to take it on time and I am forced to stay up late to get that third dose in.
My stomach is better, less indigestion that previously although I still have issues with that.

On August 5th I had something very odd happen to me. I was sitting at a desk typing on the computer when I suddenly felt a squeezing in my chest. Almost as though someone was holding my heart in two hands and squeezing it. It was uncomfortable and I looked at the clock to see how long it was lasting. It lasted for five minutes. I had already decided if it lasted over five minutes I would call someone to take me to the ER. I looked out my windows and made a few calls and no one was home. That meant I would have to call am ambulance, something I have never done. It stopped as quickly as it started. I knew I had an appointment with my cardiologist the following morning and decided to tell him about it then. When I did he looked over the EKG taken a few minutes earlier and commented that there were some changes on it. I knew this was not a good sign. He felt that if anything, perhaps my bypass had closed off. He didn't think anything had happened other than the possibility of that. He did tell me to schedule a nuclear stress test as I left. The girl who checked me out told me that they would call me when they had insurance approval with the date. After a week of not hearing from them, I called them back. They told me that the girl should have booked me that day and they would get me in asap which would be at least another week. Since the doctor didn't think anything was wrong, that was fine. I had it done September 6th. I guess more time lapsed than I had thought.  On Friday my PCP called and was very upset telling me I had a heart attack. I wasn't really that surprised although I told her that my post surgical pain in my heart was much worse than the attack. She advised me to call the cardiologist right away. He was at a symposium and could  not be reached until Monday. My PCP had already told me there was ischemia (lack of blood flow) so I knew that there was some damage. It was hard to wait until Monday and when I called his assistant told me he had read the report but wanted to review all the test himself before he spoke with me. Obviously, he was surprised. He called me late Monday evening and confirmed the information I had already been given We discussed several possibilities for future tests and he wanted to speak with my doctors in Philadelphia before proceeding. My regular cardiologist in Philadelphia (who has done my catherizations) had actually seen what needed bypassing and after it was done. He told the NJ cardiologist that had the bypass closed it would have been a massive attack, which it was not. (Thank you God.) They discussed several options and both agreed. They are not going to do anything further right now. IF I have further chest pains (in the heart) than they will possibly do an angiogram through my hand. The heart attack was caused by a blood clot. I am on blood thinners so in theory this shouldn't have happened. At one point my level was low and they actually had me compensate with Lovenox shots which I inject into my belly. Apparently, this must have been the time the clot developed, or a few months earlier when I had to go off it for several days to have my lungs drained of fluid.

In any case, I will have to be monitored much closer IF I go off of the coumadin at all. They will be hard pressed at this point to let me do it. I am having to have weekly tests now to check the INR level. This is how quickly your blood clots. I have been higher than necessary lately. I always hated it being too high but now I won't mind as much. What's a little blood when brushing your teeth compared to a heart attack?

Fall has arrived and I am loving it. The cooler weather and brisk morning air have made me feel so much more cheerful. I started seeing a therapist about a month ago to get some extra support. I find that is better than relying on friends and being disappointed when none are available and you need to talk. I like her very much. Life goes on and I won't baby myself over a little heart attack. I will be more cautious about the blood thinner levels and I will try to keep stress to a minimum. Most importantly, if I ever get that pain again I will get to an ER quickly. Had I done that they would have done a blood test and known and I would have had a short hospital stay. It's been a year now since I have been hospitalized. The previous three years I was averaging four stays a year so things are improving. The glass is still half full.