Welcome to Marcia Beverly, our newest PHCentral diarist.

     Where to begin?   I've now been diagnosed for a year and a half.  There have been many milestones in which I wanted to document how I was feeling at the time, but I had trouble getting this diary started.  I've never been one to take the time to keep a diary, but it gives me comfort to read others and so I want to join in.

     I was an elementary teacher for 25 years and I feel adrift since taking disability retirement.  I did some volunteering last year until I started feeling bad again and I haven't even called anyone this school year.  That was a big part of my social life, so it's quite a change spending my days alone.  I don't mind, though.  It's nice not to have to rush anywhere and deadlines are mostly a thing of the past.

     My immediate crisis is getting my 22 year old daughter and her two babies (6 months and 18 months) moved back home to Dallas from Nashville.  She fell in love and transferred schools and moved there.  Then ended up pregnant, not once, but twice.  (I had hoped she was smarter than that!) They are beautiful and I love them, but her living situation is a nightmare.  She's still going to cosmetology school (will she EVER finish?), but the daddy of the babies is verbally abusive and threatens to throw her out every time he gets mad. Not to mention they live in a pigsty.  She has no support and is 700 miles away from a large and loving family.  Soooo, she finally has had enough and we are going to get them tomorrow and bring them home for her to finish school. 

    All this has been terrible stressful for her and myself.  Having them in the house is daunting.  We have a two story house and I can barely get myself up the stairs, much less the boys.  But it is for a short time and we'll get through.  I promise to take care of myself.

   I have been more SOB since June and after messing around  with my lasix and switching to bumex ,it was decided to do another RHC last week.  I was relieved because I thought it might finally show something is amiss.  I was right.  My cardiac output is down.  I don't know how much because I haven't seen the report yet, but it was enough for Dr. Torres to look concerned and up my PH med.  I'm on ambrisentan, the study drug, and since we don't know my dosage, I'm watching to see if there is a change.  If I don't improve, he's going to add another med.  I'm kinda worried about that because I don't know what it will be.  He said he's not inclined toward viagra because studies are showing no improvement after 6 months.  He'd love to put me on the Remodulin pill, but you can't be on two study drugs at once.  But I'll cross that bridge when I come to it.

   So, it's 5 in the morning and I can't sleep for the second time this week and we have a long drive ahead of us today.  I just hope all goes smoothly with no fighting, because I'm not up for that.  It sure helps to be able to write all this down.

  Oh, I wrote last week about ending up passing out and going to the hospital after my RHC.  It was terribly frightening for all concerned.  My BP was low all night in the ER and they couldn't send me to a room until I was stable.  I asked if anyone had a similar episode and only one person answered.  I know it was New Year's weekend, but I feel kinda scared and lonely and needed support.  I guess everyone was too busy to read all the posts. But I'm getting a little depressed here and need the support.

  This is a long post and I'm going to go lay down and try to get some more sleep before we hit the road.  Thanks for listening.

    Well, my daughter and babies are home safe and sound.  Yes, baby drool is good for what ails you!

     The trip was as ridiculous as one could get.  It was sad to take the kids from their father and my husband and daughter had to load the car and truck by themselves, because I couldn't help.  The tarp kept coming loose due to the wind and we got a late start.  After stopping many times at Lowe's or WalMart to get more bungie cords and a new tarp, the tail gate started falling down every two miles.  We left a trail of bungie cords across TN and after 7 hours we had made it to Jackson, which is a two hour trip.  I told my husband that I had had all the fun I could stand for one day and we got a motel room.  He had wanted to drive straight through because he thought someone would steal all those toys in the back of the truck.  The next day we rented a U-Haul and at noon we were on our way.  So we pulled into Dallas about 9:30 just as this cold front hit with rain and cold.  But we're here safe and sound and trying to keep warm.

     Yesterday and today we've taken care of all the things that go with three people moving into your house.  My back started killing me again.  It had started hurting after that great hospital visit two weeks ago and I need to visit the chiropractor.  I can hardly stand upright and it sure doesn't let me do much as far as getting eveything squared away.  BUT I have called it a day at 4:30 and I plan to do nothing more than read or watch TV.  We need to find a babysitter during the day because I know I can't take care of the babies by myself.  It is just too much.

     I'm hoping the medicine is kicking in, but I've been too busy to tell if it's helping.  Tuesday will be two weeks.  I must say I've been blowing and going since Wed and I haven't collapsed yet, so maybe it's working.  I got my RHC report in the mail and my cardiac output is down, my mean went from 60 to 65 and my pulmonary resistance is up.  So none of that can be a good thing.  Bummer.  I hate this disease.

     That's all I can write for now.  I must go lay down and take a load off my back.  Thank you Nancy, Cheryl, and Sue for the kind words of encouragement.  Nancy, the baby stuff is precious.

I've got cabin fever too!! This weather is ridiculous.  Now it's raining and up to 40 degrees.  A real heat wave.  Well, with all the baby toys and laundry around my house it sure doesn't seem like home.  Erin's having to wash everything because her boyfriend smoked and everything stinks.  She says it's so nice to have everything clean.

Everything may be clean to her, but my house is a wreck.  Every time we go to put something away or work on a closet the boys are taking a nap, so it's very slow going.  It doesn't help to not be able to get out of the house.  I think I'll escape anyway today for a while.  I got a GC for a massage and I think that may be just the ticket for some quality, relaxation.  I might slip off to a movie, hehe.   Sue, I know how you feel!

I'm feeling kind of down because of the non-tranquil house thing, but also I don't think the meds are doing the trick.  It is still such an effort to go up the stairs and do anything.  I can feel my heart pounding most of the time.  It is a nuisance but also troubling.  Last night I had trouble breathing when I laid down.  That's the first time that's happened.  I actually had to sit back up. It helped when I put on my O2, but I wasn't happy about that either.  I know many of you sit propped up to sleep, but that is uncomfortable on my back.  Oh, well.  Enough crying in my beer!

We're invited to a surprise birthday party in Austin tomorrow.  The weather has really done a number down there and I just don't think I have the energy for it.  It would be fun, though.  I'll think about it.

That's all for today.  Hope I snap out of this funk. Marcia

Dear Diary,

   I just got an e-mail from my sister-in-law and she fell Thursday nite and broke her wrist and sprained her ankle.  She's in a cast up past her elbow and facing surgery next week.  I just can't believe it.  She's had such a traumatic few months that I can't believe one more thing has happened.  You see, my husband has six sisters.  Yes, six.  And I had four brothers, so they are the sisters I never had until the past 27 years.  Linda is the oldest and totally capable of running things smoothly.  Her husband is about 12 years older than her,  they are retired and he was diagnosed with kidney cancer a couple of years ago.  They removed it and he was fine for about a year and then three single cells were found last spring.  He went on chemo, but the drug has terrible side effects.  So about the time he opted to not do the chemo, they found some cancer in his brain.  They have done two surgeries and radiated.  It was easy to get to and they hoped there were no lasting cells.  This was barely a month ago and now Linda has broken her wrist.  The message also said that they found some spots on Ron's bones and he's back on chemo.  It is all so shocking because this is a family that is blessed with great people and health.  Almost every time something has come up it seems that we could lick it.  

    I feel so helpless to help them except to pray.  Ron and I compare notes about therapy because his drug is fairly new and they don't have a support group.  He and I have a lot of the same problems living with a chronic illness.   I feel that he is facing a much more unknown foe than I am.  And it seems to be gaining on him.   That is so scary.  I'm afraid for myself, but there is some denial mechanism in me that makes me think I'll live a good while longer.  I'm not so sure about Ron.   He was so tired at Thanksgiving.  Both of us had absolutely no energy whatsoever.  I don't even remember eating.  I know I didn't get dessert.  He jus sat.  When he's not on the chemo he feels fine.  I wish they could find one without the side effects.

    I've supposedly had the higher dosage of ambrisentan now for about 6 weeks.  I don't think I have the higher dosage and that's scary because I don't know what is next. Fear of the unknown is a bitch.  I guess I need to call the doctor next week.  I was waiting until my appt on the 20th, but I need to make sure I'll see the doctor this time. 

    I've really tried hard not to get too tired with the babies here.  But Erin found out that it may take another 6 weeks to get the paper work from the state and she's looking for a job in the mean time.  We found a babysitter for Caleb and I'll watch Ben (7 months).  He not too much work and I'll put the pack n play downstairs so I don't have to take him up and down.  It is still scary, though, because I get so tired in the afternoon.  I'll have to pick Caleb up by 4:30 when she goes back to school and there's no one to help get them inside and feed them.  He is walking now and maybe he can walk into the house and I can have food ready when he gets here.  I know it will all work out.  It's just so stressful and it scares me that this disease is already getting worse.  I don't want to jeopardize my health, but I want to be a loving grandma too.  I hate having restrictions on what I want to do.  But it could be so much worse, so I shouldn't complain.  So many have it SO much worse than me. 

  Oh, well.  Enough of the pity party.  I'll call the doc next week and we'll work on the next step.  9

OMG!  I just can't believe that Jenni is gone.  I remember her from her trip to Germany last summer and I looked forward to reading about her trip.  We had been to Germany a few years ago and it was fun to compare notes.  I couldn't believe she had enough energy to do all the things she did. 

I remember her visit to the ER when they tried to take away her pump because they thought it was a cell phone!  I went back and re reread her whole diary to get to know her better.  She was a very special young woman.  I just can't believe she's gone.  Her last entry was September.  She had just been to the doctor and had the fluid around her heart, but Bailey and Cheryl said they had had that and it was fixed.  She usually kept up her diary fairly regularly.  Has she been that sick since Sept? 

I wasn't close to her and don't know any details, but this disease is fightening when you keep hearing of people dieing.  I know the prognosis, but so many have lived with this for so long that I consider myself one of the lucky ones who will live with this for a good many years.  I was only diagnosed in 2005, so I don't know what makes seemingly stable people die with this disease.  I know Marcia in Maine had been sick for a while, but then there was Marcine and now Jenni.  These are all people I got to know here at PHC.  Does anyone have any answers?  There are so many new people on the board that I don't want to scare them with my questions.  How do you go from fairly steady and holding on to death?  I know the disease is progressive, but doesn't the medicine keep it in check for a good while?  Maybe if I was closer to these people, I would know the answer.  When poor Tim died I knew what a battle he had fought so it wasn't such a shock.  I'm rambling here... sorry.

I want to go get out and live my life to the fullest, but I'm afraid of overdoing it and getting sicker.  There are just so many questions. . .

This past weekend was SUCH a shot in the arm!!  I'm energized and ready to go.

I was invited to attend the first Galveston PH Support Group Meeting and said yes because I was born down there in Texas City and went to Univ. of Houston and lived in Houston for 20 years.  A year ago my college roommate had called and told me they had moved from SugarLand back down to Galveston and wanted me to come visit.  She also told me that when they had lived in SugarLand they had had a beach cabin and had gotten to be good friends with a couple named Lynn and Vernon.  It turns out that Lynn was one of my best friends in high school in Beaumont!!! What a small world!  So Lynn and I started e-mailing thru classmates.com and they ALL wanted me to come down.  I also had kept in touch for the last 5 years with my childhood best friend in Texas City and knew she would enjoy a visit too. SOOO, this was an excellent opportunity to see old friends and have a good time. (I also needed a break from the precious babies.)

Well Joanne (the childhood friend) is a nurse and teaches in Galveston, so I invited her to come join me for the PH Support Meeting.  She loved learning all about PH and we enjoyed a great meal too.  We visited the old neighborhood, visited her parents (her mom and mine had been great friends), went down Girl Scout Lane, where we had planted oak trees when we were 10 and now they are mature and gorgeous and just had a blast catching up.  We could still joke with each other about who talks the most and had laughs at the silly things we remembered.  Her mom is convinced we cheated our way through most of our Girl Scout badges, but my mom is toooo honest for that!

Then, after 24 hours I hugged her goodbye and headed for Galveston to my college roommates home.  Jean and Bill bought a bungalow in a neighborhood built in the thirties.  It is a cute two bedroom with wood floors and a garage apt in the back.  She has gone back to teaching at a private school, but her hobby is quilting.  She inspired me to get back to my crafty day of the past. They closed on the house a week before Rita hit and it has taken this long to get the insurance money and get things fixed up just so.  Then we headed out to west beach to my high school friend's home.  They live in a beautiful canal house and she has a craft room downstairs that has everything a crafter could want.  (More inspiration!).  Lynn was SO excited to see me.  We hadn't seen each other since our 20th reunion in 1992.  The three of us just talked, talked, talked.

It is so funny how, when seeing an old friend, you can just pick up where you left off, share intimate details and try to solve all the problems of the world.  We had only time to talk about them, but I'll go back and maybe we can solve some of them too. It was nice to know that others have difficulties with their children too.

I just know that this morning I was showered, dressed and had make up on before I even came downstairs and I've already made a list of things to do soon.  I needed that shot in the arm to get back to enjoying life more..  This day is beautiful and my front flower bed needs trimming.  I have a craft closet to clean out and a lot of baggage to throw out. (symbolism intended)

Here in Dallas it is another beautiful day.  We've had gorgeous spring weather all week.  My energy from earlier in the week resulted in three garbage sacks and a nice, clean misc closet in the guest room.  It contains many shelves of craft material, costumes, decorations and old pictures.  I even found two pictures of my mom that I thought she had taken back. One was when she was about 22 with longer hair and one when  was a baby of about 8 months.  She looked so young and beautiful. 

Caleb (almost 20 months) has discovered the joy of outdoors.  He loves it out there.  He'll go get his shoes and hand them to me and go to the back door and try to open the handle.  Except for trying that after dark, we go outside.  Yesterday was a little chilly, but the back porch blocks some of the wind and the sun is warm.  Little brother, Ben, at 8 months just sits contentedly in the sun.  Erin is at orientation for her new job at Sears, so Bompa (that's what Caleb calls Grandpa) and I are babysitting. They are both asleep now, but Caleb is cutting a new tooth, a molar, so he might be Mr. Crankypants later on.  I'm glad it's a pretty day so we can go out.

Dr. Torres ordered another cardiac MRI, which turned out fine and my BNP went from 179 down to 169, so that is good.  He upped my Coreg in the am and I find myself with more energy and don't notice that annoying heart beat all the time.  My energy from last weekend finally faded on Thursday and Friday.  I didn't have any energy and rested, read and slept most of the day.  I feel better today and have already accomplished cleaning out Erin's file folders.  Unfortunately, we didn't find her SS card that we were looking for.  It could be anywhere in that pigsty of a house she used to live in in TN.  I wish she had filed it in the box.  We would have it now.  We'd have Caleb's too. 

Erin starts her new job Wed.  The only hitch is the babysitter we have selected for Caleb.  (I'll be taking care of Ben myself)  She keeps teacher's kids so she can have the same breaks.  And the second week of March is Spring Break. So no baby sitter.  And my husband will be out of town.  Susie, my 20 year old is fairly worthless before noon and she has school Monday and Wed.  She'll have to rally for the cause if I need her.  I'm just concerned about doing too much.  I won't do it on purpose, but who knows?  I don't know Erin's hours yet, so it might not be such a big deal.  At least Caleb can climb the stairs with me by his side and that helps a lot.  We'll see.

I'm going to go enjoy this nice weather and work on getting some more closets cleaned out.  It feels so GOOD to have some more space to work with.  I even found a quilting project already started and waiting for me to continue.

Today my daughter finally started work.  She's having to wait on paperwork from Austin before she can get back into cosmetology school, so she got a job in the mean time.  Yippee! 

The only problem is that the babysitter is in the hospital with chest pains.  Yikes!  I know how that feels.  She keeps 5 kids and her 20 year old daughter had to come home from college to take care of them yesterday.  She obviously can't take one more, so my little Caleb is home with Mimi today along with little brother.  This was what I feared when they came home.  Fortunately, I am feeling so much better since upping my Coreg that I think I can make it.  Tomorrow my other daughter can be here to help, but she had school today.  Next week is spring break and the challenge of keeping them again.  But after that it should be easier IF the babysitter is back in business and feeling good.  I hope they figure it out soon and can do something easy, like a stent, to fix her up.

Thank goodness the weather is holding.  It is 66 degrees and sunny.  The boys LOVE it outside.  If anyone fusses we just go outside.  Maybe I can even get the back porch cleaned of leaves.  I just don't want to overdo it.  I have to go the cardiologist at 3.  Fortunately, Susie gets home with my car and can take care of Caleb.  I'll take Ben with me.  With such a full day, we should all sleep good tonight!  I thought I would last night, but I awoke at 3 and had to read for an hour to get back to sleep.

I'm going to go throw some shepherd pie together for supper because I know I'll be too tired to do it after the doc appt.  I pray my energy level stays up.

Well, I made it through yesterday.  I slept well, too.  The doctor was still amazed at how well my left side heart has improved.  He said I looked good and even joked that he didn't hear my heart beating from a foot away.  I have more energy and stamina.  I'm sure it's from staying busy and active.

No word on the babysitter's condition yet.  I hope she's doing well.  She's a personal friend besides being the babysitter.  The boys are taking naps at different times today.  Ben went early.  He's probably good for two naps.  I kept Caleb up and we took a bath and watch a little Sesame Street.  This will help when they get up to stagger eating times.

After they eat we'll take a walk in the park.  It's 70 degrees and sunny.  The double stroller is on the back porch ready to go.  It's too heavy to transport anywhere, but it sure works for walking across the street to the park.  We're so lucky to live where we do.  People actually drive and park in front of my house to go to the park. I just walk out the door!

I'm going to try again to send pics of the boys. Still doesn't work. Help!  How do I do that?  I clicked on browse and then the pic, but it didn't show the image.