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.

Getting Back on Track

Things are sort of returning to normal. My town is beginning to feel like it did pre hurricane. Unfortunately, at the Jersey shore things are anything but. I have spent the last two weeks buying gifts for parties for kids who lost everything. Most are from Jersey but some from the hardest hit areas of New York too. To be honest, this year I had little to no holiday spirit. That is, until I met Barbara the receptionist at a local dental office. She is organzing the toys and party for the kids. She is so full of enthusiasm and she gave me a much needed hug last week. It really lifted my spirits. I hope I can do that for someone else. My PH has been better I think. The revatio seems to be working much better for me than the other drug did. Also, my stomach problems are not as severe. It might also be that I have been on it enough time for my body to adjust. The downside is the insomnia I am having. I can go to sleep at 10 but wake up around 2 and then remain awake for hours. Since my husband must get up for work at 5:30 a.m. this is a real problem for him. I have to make little noise, not toss and turn etc. I have so many medical bills here. I really and truly should not be buying gifts for anyone but I just made up my mind that I have to for my mental well being. I will have to catch up on those bills later or even with Christmas gift money I receive. I have learned it is in giving that I truly receive. I don't need things of a material nature. I need for my spirit to be peaceful and feel that I am being the best I can be. I need to feel that while here I made a difference. I don't need recognition for it. I think having spiritual peace helps one's body. I have felt more relaxed. I have noticed something though. I am having trouble swallowing food. It seems to get caught up. I so do not want an endoscopy but last night trying to eat dinner was painful. I need tiny bites with lots of liquids. I'll see what the doctor says. Have a Merry Christmas and if that doesn't apply to you have the happiest of whatever holiday you will be celebrating. Peace on Earth and goodwill to all.

And Now for this Unscheduled Break

There has been a brief hiatus. I live in Central New Jersey where the hurricane hit us. We were without power over five days. It was restored but I am left with an empty refrigerator, freezer and five loads of laundry to do. We are on gas rationing for now. I plan to be back soon. Keep the families of New Jersey in your prayers.Many are still without power or food, some have flooded or missing homes.

PH Visit

I went to Philly yesterday and saw my PH specialist. He did not seem very happy. That's my fault because I failed to control my fluid issue. Sometimes I slack off a bit. I get so tired of having nothing with salt that I will allow myself an ocassional splurge but this time I did it a few times in a week and poof: 9 lbs of fluid on me.

He was tactful in his lecture but his message came across loud and clear: I am making his job oh so much harder with the fluid on me. He would also like me to lose ten pounds. I know I need to but honestly, when you are less active it's hard. Then he suggested I get either a stationary bike or a treadmill and do some moderate exercise. Ten minutes a day five days a week. Okay. I need to get back on the road to living virtually salt free and I need to give up the treats I have allowed myself recently to console myself. I know the score: I can either help or hurt myself. I've gone through too much not to do all I can to be the healthiest I can. My healthy is far different from the average person's healthy. I am talking about being able to go somewhere without portable oxygen.

I can do it, I know I can.

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.