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.

Per Chance To Sleep

When I start a new medicine I try to avoid reading the side effects. Once I have what I think is one I pull out the information and check it. I have been having insomnia, many nights I am only getting four hours sleep and I am exhausted. Saturday night I was in bed asleep at ten p.m. and I slept until after seven a.m. on Sunday. It is almost 4 a.m. and I have not been to sleep yet, although I have been trying since midnight. My eyes are so fatigued. Sleep disturbances are a side effect for me.

Last Monday I saw my cardiologist. Remember in addition to the PH I have some heart issues. My EKG had changed and shown some problem. He discussed the possibilities and told me that he wanted a chemical stress test done as soon as they could obtain insurance approval for it. I haven't been given a date yet. My tachycardia is very bad right now also. When I have trouble sleeping this makes things much worse. I can hear the mechanical valves and the tachycardia distracts me from relaxing as I would like to. I am often reminded of Edgar Allen Poe's "The Taletell Heart." To say I am discouraged would be an understatement. I have medical bills coming in daily and I don't seem any better off than I was. I have times I wonder if they can actually help me. I am battling heart and lung problems, not just one or the other. I have been battling the old insurance company who didn't pay for several of my pulmonary rehab visits. The provider is insisting I pay. I did an appeal which was denied and have now filed a complaint with the insurance board for the state of New Jersey. I already paid her over $500.00 and she wants over $200 more from me. She doesn't care that her phone calls upset me either. It seems my days recently are spent dealing with this and other bills. I had three arrive in Saturday's mail.

Well, that's the latest news around here. I hope things will be better and I have some good news for my next post. Until I know the results from the stress test I will be concerned.

Revatio At Last You Are Mine!

On Friday my new drug, revatio, was delivered. I got two doses in that day and have been taking three doses a day since then. It's hard to judge if it is working any better because it's been so very hot here. Today it's supposed to reach 94. When I go outside it's difficult to walk at all. Easier WITH the portable oxygen tank, yes but still not easy. I have been in a funk lately and over the weekend Rob took me to Joe's Crab Shack to cheer me up. The crab legs were delish but I have  never had a whole lobster before and when I saw it's eyes I coudn't eat it. I brought it home and my neighbor enjoyed it. I had enough to eat with the 4 shrimp, two crab legs (from a Queen crab) two boiled potatoes and an ear of corn. It was my belated birthday meal I hadn't had.

I have been so busy trying to get requalified to my long term disability for another six months. My SSDI payment is very low and this subsidizes it. Even with it, I only get 50% of what I made working. Without it I get less than 20% of what I made working. As prices steadily increase for EVERYTHING it's so difficult to get by on less. I had recieved some insurance money from my father's passing which was a tremendous help last year. That was a one time thing though. I don't mean to keep bringing up money but when I just saw my last bill for my U Penn visit it was really high. MY cost was over $400.00 for the ONE visit. Insurance paid about six thousand.

Today is Tuesday and that means our PH Chat in the afternoon which I really enjoy. I look forward to Tuesday afternoons, especially when it's too hot to be doing much of anyhing else. Stay cool.

Patience is Not One of My Virtues

My birthday ended up being somewhat of a disaster. I won't go into the specifics here but trust me, it was my worst ever. I ended up spending the day in bed pretty much.

On the PH front things are not going well. After my last visit where my doctor seemed happy that my heart was looking more normal and functioning somewhat better I had been encouraged. He got my labs back and things changed. I haven't seen him to discuss it but apparently things didn't look so good there. He decided nearly two weeks ago to change my medicine and have me stop the old one. For one thing, he thinks the old one was causing me to take on fluid. I didn't need help for that, trust me. The doses of diuretics cause problems themselves and the last thing I need is another "lung tap." Trying to change the medicine has not gone smoothly. Not at all. The pharmaceutical company (remember these drugs come from specialty pharmacies and your insurance dictates which one you must use) has really made if difficult for me. As they say "The road to hell was paved with good intentions." Originally my insurance company said my copay would be $450.00 per month. The pharmacy told me to contact Pfizer about drug assistance as I could not afford the copay. I did, and they had my doctor fax over a ton of paperwork to them. I waited a week until they called me and said that my insurance said my copay would be under $100.00 which means they could not help me, although financially I did qualify for assistance. They advised me to call their OTHER line for a card which would only charge me $4.00 per month. I did that and waited...and waited.....and waited. I kept calling the pharmacy back asking when I would receive my new drug. They told me I had to wait to see what assistance pfizer would give me and they needed a number off the card before they could ship the drug. After half a dozen calls to the $4 COPAY line and not receiving a card, I finally spoke to a PERSON. Each time I had called I had to leave information that was recorded but never spoke to a person. I hate set ups like this. I applaud Pfizer for helping patients but their system caused a lot of stress and a complete lack of communication. The person I spoke with told me that it would take four to six weeks to get the card and then I had to call and register the  number on the card. I called the speciality pharmacy back and now they were closed. I have waited weeks for this drug which hasn't even been shipped yet because no one seemed to understand this card or anything about it. Now I will be forced for at least ONE month to pay the full copay which honestly will be difficult. I have to call that pharmacy this morning and explain I need this medication YESTERDAY. If they give me any problem, I am calling my doctor directly to call them.

As though that were not enough stress, my INR was bad. This shows how thin your blood is. When you have two artificial heart valves it is crucial to keep your blood thin so it avoids making clots which can be fatal or cause a stroke or heart attack. When I went for my check up they were so upset to see how low my number was, I was put back on Lovenox shots which are given in the belly and are very painful. They are also very expensive. I have been getting them this week and this morning I go for a recheck to see if I can get off them. I've had many people say "Well I take insulin shots in the belly and it's no big deal." I have had those and they are no big deal.....this drug burns like you have been stung by a wasp. Then you get horrific bruising all over your belly and look like you were beaten with a bat. I have knots and soreness in my belly.
Well, time to get dressed and get my bed made. I have to be at the cardiologist at 8:30 this morning to see how the blood is going. I am so tired having only slept about 5 hours.  I will nap later today.

Birthday Countdown.....

A week from today is my birthday. I'm so excited. Why? Because I made it to another one. Yea!!!! Every year since my cancer diagnosis at 23 has been a huge victory for me. I don't take life or anything for granted.

I went for my other CT scan and it showed no fluid. That was good....except they found two enlarged lymph nodes. (they had found one at U Penn last year.) Since I have a history of lymph gland cancer this is going to have to be monitored. My lung doctor said not to be panicked by this as my body has been through a lot of trauma and it could be some kind of virus or low grade infection. I am counting on that and honestly, not worrying much about it. There have been other times they thought I might have something and it was worrying for nothing. For me, the focus is getting those PH numbers down. My heart has improved which is why I am not mass producing the fluid right now. It has shrunk (it was very enlarged) and the third leaking valve is leaking less. Yes, I have yet another leaking valve. While I was on the operating table they tested it and it wasn't leaking but it slowly began to leak due to the heart failure and enlarged size. So, I will be focusing on the good and improved and hoping for things to get even better.

There is nothing I really want for my birthday. Just a great cake. Rob usually gets me a strawberry shortcake. Not just any strawberry shortcake but from a fabulous bakery. I love strawberry and we had it as the filling in our wedding cake. Lately I have been craving lemon. Maybe something with lemon. We'll see.

Stay cool. We are in another heatwave. A bad storm Friday night left many without electricity, including my family in the Maryland area. Hoping it comes back soon for them.

Moving Right Along

I found out that there were some cells in my fluid they removed that should not have been there. UGH. I have to have another CT scan on Monday. If there is more fluid now (or later) I need to have it removed and biopsied. Since I have a history of lymphoma this will have to be watched as the cells were inflammatory lymph cells. I am not going to sweat this. The lung doctor feels it could be as a result of all the trauma my body went through last year. Hard to believe that eleven months ago I was just home from the hospital after respiratory failure and waiting to have yet another heart surgery late July. I've come so far.

Most of my PH friends are at a convention in Florida. How I wish I could be there. Some of them had a hard time getting oxygen delivery squared away. I didn't have the money to go and honestly, I couldn't handle the stress at this time of the travel and worries about oxygen. I have been dealing nonstop with medical issues and bills here. I kid you not, practially every spare penny goes for medical expenses. We just got done refinancing our home to lower our mortgage payment. The difference will make our car payment. We have also reduced our bundle package services to save $70 per month. Every bit helps.

A Local Girl

There was a story on our local news about a little girl with pulmonary hypertension. If you want to watch the video click here. It is so sad when you know a young child has had to deal with this. While I struggle now I was pretty healthy up until about twenty years old. I cannot imagine how hard it is to be a sick child. Especially if you have healthy siblings running around. I thought they did a great job of explaining what pulmonary hypertension was in the video.

The weather has been very bad humidity wise. It was 85 yesterday and I struggled when I left the house. I think the temperature doesn't help but primarily it's from the humidity.

Fluid Gone (at least for awhile)

On Friday I had my procedure, the thoracentesis where they removed the fluid which ended up being about one litre. Ironically, this hurt more than the first time they did it. Not as much as the last time though, when I ended up with a chest tube.

I came home quite sore and kind of took it easy for the weekend. On Sunday my son came over. We went to the mall to replace his broken cell phone and picked up cake to take to my mother's. I came home and tried to take it easy but by now my right hand was hurting, particularly around my thumb. When they had the needle in my back I was required to grab onto a hospital table and hold tight. I think that injured it somehow. Yesterday I had to go see a doctor who told me to put ice on it and take some antiinflamatories. While I was waiting for the lung procedure I had to go off of my coumadin. This means that I must have shots of Lovenox in my belly to keep my blood thin (only works for about twelve hours like heparin.) I had to not have it Friday morning and begin again Friday evening. My belly looks horrible. It's one gigantic bruise and some huge lumps which are painful. Yesterday my INR was 2.5 which means I got to stop the painful, expensive shots. YES!!! I was thrilled.

Even though they removed the fluid I am somewhat breathless. I had my oxygen tank refilled today. At night when I put on my mask and feel the oxygen going through my cpap mask it is pure heaven. The machine also adds moisture.

My entire family (mother, brother and his wife, sister and her "friend" are going to my mother's vacation house which is a town my other brother and his family live in. I was asked to come but a. oxygen would be a problem and b. there wasn't going to be enough room. It kind of depresses me that life goes on. I am left out of many things and no one seems to even think how that makes me feel. I went to Bed, Bath, and Beyond for new sheets today and I saw these people running and having it so easy and I thought how they will never know how I feel. I wouldn't wish this on anyone. Somedays I have a lot of spunk and can push through but when you have several bad days in a row it's really hard.

I am doing much better after getting the ten pounds of fluid off. I also ordered and received a pulse oximeter. I got a good one and it works well. This will let me know exactly what my oxygen is rather than guessing. My doctor told me last week that you really cannot judge your oxygen level by how you feel. At times I might feel well when it's low, or feel sickly when it's fine. This way I can better keep tabs on when I absolutely have to be on the oxygen.

This week I had something going on nearly everyday. Next week will be the same. I am getting caught up on doctors appointments, dentist visits etc. I haven't seen my eye doctor, gynecologist etc. in over a year. I finally got caught up with the dentist and am getting my teeth cleaned Monday. That will be done. With me not working you would think I would have a lot more time to do these things. I have been dealing all week with insurance issues. I am very unhappy with United HealthCare. This was the insurance I had through my employer. They paid for some of the visits for my pulmonary rehab and yet denied about six others. The provider has called me nonstop about this. I have called and spent hours upon hours with United HC. I am now dealing with their "Rapid Resolutions" Dept. and I certainly hope to get this resolved. The provider is threatening to turn me over to collections, claiming they told her I am responsible. Since this was a covered benefit and I called to make sure that I needed no special authorization I fail to see what the hold up is. I now have Blue Cross and I can tell you that while it's harder to get authorizations for CT scans and such the bill paying goes much smoother. I pay 20% with Blue Cross but it's worth it. I can see any doctors I want, without referrals. Unfortunately, the DME (durable medical equipment) which I need such as oxygen costs me that percentage as well. With my other policy I paid nothing. This means having a large oxygen bill should I choose to travel OR trying to travel without it. I cannot fly without it. I use it to sleep overnight. I am sure if I went overnight one night I might be okay but I couldn't function long without it at all. When you have an ongoing illness, you need to understand your insurance coverage well. Often doctors prescribe things that might not be covered and if you don't make sure that you have that coverage you can end up having to pay for them. I learned this the hard way.

The Fluid Battle

The fluid battle goes on. Not everyone with PH has the battle. I have PAH which means I also have right heart failure. I have problems in my left side too as I have two mechanical heart valves. Your heart is a pump and mine is not working well right now. As a consequence I retain too much fluid. I have lowered my salt intake significantly, at times drastically. I take diuretics each day to help remove the fluids. Still, I can take on several pounds of fluid overnight. It is so frustrating at times. When I have fluid the PH medicine can't work. When the PH medicine can't work and my heart is working harder I get more fluid. A vicious cycle. Right now I am carrying at least five pounds of fluid. I am using peanut butter with no sodium, buy low salt everything I can and still have the problem. As a result, the past few days I have been SOB (no not a son of a b*tch but short of breath.) I have learned all kinds of these things from fellow Phers, aka PHriends. I love them. They know where I am coming from and understand what a bad day can be like.

This past week I was disappointed when an old friend was going to lunch with other friends. I used to be asked to join them but she doesn't anymore because she doesn't want me to feel bad that they are going if I'm not up to it. So instead I felt left out. She has another friend dealing with another lung issue, COPD, who stopped being her friend because she smokes and smells of smoke. I have told her that she cannot smoke in my presence. We usually meet at a diner or something so I don't have to smell the smoke. I would think seeing two other people on oxygen would be a huge incentive to stop smoking. People her age no less.

We have a new car. I am enjoying that. Last night we went to run errands, pick up a few groceries and I love the XM radio so much that I didn't want to get out to go in Home Depot. We had to pick up screen as the cat knocked out my screen door on the kitchen slider yesterday. He jumped, it fell on a chair and the old screen split. The cat seemed pleased at this. I would have thought it would have startled him but not at all. He's so adventurous. My husband, Rob has begun the job of replacing the screen. It's on our kitchen table and the cat is bolding announcing his presence as if to say "I'm here if you need help." Either that or "No screen can contain ME!" He is full of mischief and he's ten years old.

I go to Philly on Wednesday to see the PH specialist team. Wish me luck. They have to decide whether or not to change my medicine. I am kind of hoping not as it would mean adjusting to something else and they all have side effects for me. On Thursday I see my lung doctor to make sure that the pneumonia has completely gone. Last Friday I was running a low grade fever and they put me on another course of antibiotics. That could also make me feel tired and SOB. It's so hard to determine what is the cause. I'm a puzzle and the pieces don't always fit with ease.

Sunshine and Happiness

For those of you who have followed me for awhile you know it's been quite awhile since I have had a day where I felt good. It happened yesterday! I am overjoyed. I woke up and saw the sun and knew it was going to be 70 and my heart soared. I went to get my blood test and found that my INR was within target (it had been too low for weeks putting me at risk for a blood clot) and I was somewhat concerned. After that I picked up my taxes and went to the new Dollar Quest store. Things there are usually more than a dollar but still bargains. After I found a few things I talked to my mother who was in Freehold getting her hair done. We met at Panera's and I had my favorite lunch. These days what I most enjoy eating is a salad. My favorite things on that salad include goat cheese or blue cheese, nuts, dark green lettuce, onions and grilled chicken or turkey. This filled the bill. Add a small piece of freshly baked bread and an ice tea with acai and I was over the top! I brought home my husband's favorite sandwich from there and didn't have to worry about dinner. I really wanted to plant some flowers but there is a breeze that if I am not in the sun chills me. I get cold very easily, I suspect it's the PH medicine I take.
I have upped my meds and gotten some fluid off of me. That has helped me. I am going to battle the fluids as long as my heart remains in heart failure. I am so hoping that the PH med will lessen if not stop it. I know that I will have good and bad days and I am determined to enjoy every second of the good ones. I had a bad night of sleep last night so hoping I can get a brief nap before my oxygen delivery so that I can enjoy this beautiful weather: sunny and warm.
Have a wonderul Passover or Easter.

The Good and the Bad

I had the chest x ray and the weekend went by. Monday I got a call from the pulmonologist's office asking how I felt. I told them I was only a little better and they wanted me back on Tuesday. When I arrived on Tuesday I had my portable oxygen with me and they were glad that my moving 0 2 was up to 93 and resting 96. They said my lungs sounded better and I looked better. The xray showed that I have pneumonia in my right lung, in two lobes of it, the bottom and middle. That pesky right lung is usually the one that has it. He gave me more Avelox and told me if I don't feel better or start feeling worse to call.

I normally see my woman pulmonologist, Dr. Gilbert. She isn't there on Tuesdays so I have seen her associate. He honestly looks like an actor. What a nice looking guy and very caring. I want to stress that this is the FIRST pneumonia I have had since July 2009 that I was not hospitalized for. That makes me think that the heart surgery has helped get me in better condition and helped my lungs. I am excited about that. Pneumonia really knocks your socks off. I am drained. The antibiotic interferes with my sleep too. I was wide awake at 4 a.m. and finally slept until 8 a.m. I am a zombie right now. I am expecting my oxygen delivery between noon and two p.m. Once he leaves I hope to take a long nap. It's overcast and chilly so I will be wrapped up in a blanket.
Yesterday I could feel a change of improvement. I was so excited and I ran to the grocery store to pick up a head of cabbage and a quart of buttermilk for my St. Patrick's Day meal. I also needed bread and cat food or I wouldn't have made the trip. When I arrived, as I often do now, there were no handicapped spots to park in. I don't know if it's just my area but it seems that so many people have these placards. I fully recognized you cannot look and determine who is disabled and who is not but some of these people run so quickly across the lot I really wonder. I notice a lot of seniors have them. I wonder how many doctors give out. I wonder if doctors realize that there are people like me who cannot walk across a parking lot. I have attempted to go to the store about four times in the past six weeks and have had to turn around and drive home because there was no way I could walk that far. This may sound overly dramatic to someone who has never experienced shortness of breath or fatigue. Once I can get to a cart I can use it almost as a walker and it helps support me. If I have my oxygen tank (portable) with me, it's heavy for me to carry and I can sit it in the front seat of the cart which also makes it easier for me. I have asked one of my friends to try to help me draft a letter to local doctors asking them not to give handicapped parking placards to people who don't really need them. In New York they ask people to see their registration card for the placard. If they are NOT the person who it's assigned to, they are ticketed. I wish this was enforced here because I have had people tell me that they use a family members and I try to explain to them how important it is that they do NOT do that. I wish I could raise public awareness on this issue but I'm just tired and not up to it today.

Setbacks

I have been sick for about a week. Things got worse on Saturday and by Sunday I was really feeling poorly. I began running a low grade fever. Then it hit me! I have an internist (primary care physician), a cardiologist locally, a lung doctor locally, a cardiologist in Philly and my PH specialist in Philly. Which one should I call? I opted to call the PH specialist in Philly. As luck would have it he was out of town but his very capable nurse practitioner took care of me. She told me I sounded like I was anxious on the phone. I wasn't, it was that I was short of breath. I had weighed myself and over the past few days I was taking on fluid. This has been an ongoing battle for me and I was surprised to learn that many other people with PH or PAH do not have this problem. By the way, I do actually have PAH which means that the right side of my heart is failing. I called my lung doctor and saw someone in the group that afternoon. He was quite alarmed that my oxygen level was so low. The last time I was in Philly I was told just to use the oxygen at night, for my sleep apnea (oxygen gets bled into the machine.) The pulmonologist told me that right now I should be on the oxygen 24/7. I knew he was right when I saw that sitting there my oxygen was under 90. He said he thinks I have bronchitis but couldn't be sure I didn't have a pneumonia developing. He gave me the antibiotics I take for pneumonia and had me get a chest x ray. I came home and have been vegging ever since. I have chills a lot and still only a low grade fever but even with the oxygen I have having some lightheaded moments. Hoping I wake up feeling a lot better this morning. It's been about ten days since I have been out other than to go to the doctor and get the xray. I'm feeling housebound. Yet I am too sick to go anywhere. Hopefully the Avelox will kick in soon.

Happy Leap Year

Well, it's a leap year. I am hoping that will bring good things to us all. My friend Julie posted something on her FB account that I want to share with you:

February 29, 2012 is National Rare Disease Day ... I have Pulmonary Arterial Hypertension, better known as PAH, or PH for short. What it is essentially, is a constant dangerously high elevation in systolic blood pressure in the Pulmonary Arteries in the lungs. These are the arteries that carry blood from the heart to the lungs to be oxygenated to carry oxygen to the rest of the body. My Pulmonary ...Arteries are constricted, thus restricting blood flow, which backs blood up into the right side of the heart and elevating levels. Eventually this causes Right sided heart failure. There is no cure for this disease as of yet, but there are many researchers out there diligently working to find one. This disease knows no boundaries, such as age, race and gender. Only about one person in a million Per capita per year are diagnosed with PH, which estimates currently about just less than 100,000 people here in the USA have it. Some of the symptoms of this disease are: Unexplained shortness of breath, chronic fatigue, chest pains, dizziness and fainting. This disease often goes misdiagnosed until it is too late because it can mimic so many less serious conditions. There are currently two tests that can be done to diagnose this disease. One is an Echocardiogram which is a sonogram of the heart and is often definitive and inaccurate and then there is the most accurate way to tell and that is by having a Right Heart Cath, where doctors usually insert a catheter through the neck or groin and push instruments up through the veins into the heart in order to get measurements and readings directly from the source. Just wanted to tell you a little bit about my Rare disease. Please, if you or anyone you may know suffers from any of these symptoms and the treatment they are getting does not really seem to be working, PLEASE get tested for PH as early diagnosis is essential for a good prognosis.

I think she did an excellent job of explaining what PAH is. Julie is a PHriend. That's a PH friend and I love that. It's been so helpful to chat on a conference call with other PH patients, to chat in the chatrooms that the Pulmonary Hypertension Association has. Noone understands like someone else going through this. You get helpful hints and like the other night when a woman named Carol told me that the side effects of adcirca would not last I felt so hopeful. She has been on the drug and experienced some of what I have.
This week I had to have my nose cuarterized for bleeding. I am also on blood thinner and I'm sure that contributed to the problem. No nose blowing for three weeks. Will I make it? Not sure. I must also sneeze with my mouth open. Yikes. Easier said than done but so far I have been able to follow the ENT's orders to a T. Soon I will be seeing a gastroenterologist and trust me, I need help in that area. My stomach is a mess. Adcirca is known to cause indigestion but I am getting it from anything going into my stomach, even a cup of tea. Prilosec helps somewhat but am hoping that a doctor can have suggestions or recommend another medicine that might be better.

Another Adjustment

I am having very serious stomach problems. It's the adcirca. No matter what I eat I have the worst heartburn imaginable. Nothing tastes right either. I find I can't go to sleep at night unless my head is elevated on three pillows to keep the acid from coming up. I wear a Cpap mask and you can't if you might throw up. Last night I had about three hours of sleep. My right foot is still swollen and has been for several days. Today I tried so hard not to eat anything that might have acid in it. I have an appointment with a gastroenterologist March 9th. I hope I make it until then. I can take over the counter Prilosec or Rolaids but it's not enough to really help. It also lowers my blood thinner forcing me to have more tests and up the dosage.

I think I might be breathing a little easier. I am hoping after another month or so to be in better shape than I am now. Won't know if the adcirca works until they do another heart catherization which I think will be a few months from now. Keeping my fingers crossed and praying for a good outcome.

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.