I'm An Adult

One of the things I hate most about PAH, is the fact that it's an "invisible illness". If you don't know me and just look at me, you would have absolutely no reason to think that there is anything wrong with me. I do not look sick.

So when the group going out for dinner wants to walk well over a mile in the cold to get to the chosen restaurant, I end up being required to explain why I just can't do that. What a joy!

Even though I experience very few symptoms and only mild shortness of breath, exertion in the cold (or high humidity, for that matter) wreaks havoc on my breathing.

Add to that, the fact that all of the Germans I've met walk around town like they are evacuating a burning building. It's a fast, unforgiving pace.

At any rate, I was required to explain myself a couple of times before and after dinner the other night. Everyone wanted to walk, but me. My explanation didn't sink in well with one of the younger gals in the group. She had the cuckoo to ask me if I saw a doctor for my condition. (Slap yourself in the forehead here.) Of course I see a doctor! My response was almost, "No, I'm trying to see how things work out treating myself at home with heroin". Yet, I refrained. :-)

Experiencing that joyful exchange brought me to a conclusion - an ephiphany, if you will. I am an adult. I shouldn't be required to defend myself because of my illness to anyone, at any time.

If I'd rather take a bus or call a taxi to get from the hotel to the restaurant, but everyone else would rather walk, then I'll just meet you there. At no place in my personal constitution does it mention that I must do what the crowd is doing, just to be compliant and trouble-free.

Basically, I'm an adult. I will no longer defend myself for straying from the desires of the crowd because of my illness.

Comments:

Tamara (mauiaction) - April 14, 2007

How about this one on!! When I was first diagnosed, I had so many Dr's saying I could keel over in heart failure, and the others saying not, and the list went on. In the meantime, in my not so infinite wisdom of PH. I decided to take my vacation as planned, while the Dr's figured things out and got me on treatment!! I waited a year for this trip and guess where? To Tahoe!! Unbelievable misery! Not the smootest move, and it was very hard to accept that this condition was really happening to me, so I acted like it didn't exist. At least I tried to that is, and I went on my merry way as if nothing was wrong. I'd get through it. This was the classic part that relates here..I am taking a train to Truckee, Ca. Anyone reading this be aware the train systems are not-handicapped friendly and if you have a heart attack no one will come.. They had the disabled car last, which meant anyone with a disablity had to walk many train lengths to get to it. Luckily I had a friend with me carrying my backpack and she went ahead to talk to the conductors. The conductors were mad and impatient threatening to leave us. Myself and another lady were holding up the schedule! Slowly making my way,and cursing along because the first time I actually need close access to something like handicapped parking, I was aghast at the insensitivity and stupidity of putting that particular car last! My friend had to insist they wait. Meanwhile, an elderly lady that just had hip surgery was doing sprints compared to me!! The conductors, thinking my friend is talking about the elderly lady; no empathy there when they realized it was a young woman with no apparent disability. Their attitude was incredulous there was something even wrong with me, and more like "Yeah, right. Probably hungover from a bender instead." That was just the begininng of that experience. I will never take Amtrak ever! The worst through the whole experience, was I had to walk by the many carloads of people waiting and watching me shuffle along. It was horrible, embarrassing, and my first experience of how people truly don't like to be inconvienced by sick people and their attitude is, "well fix your probelm and shut up" Now lets get moving, "it's not like you have a broken leg or something"....It was a rough introduction to having any sort of serious condition.

Jennifer Davis - June 8, 2006

Jenni, I totally agree with you, that we shouldn't have to explain ourselves for any reason. I'm proud of you for standing up for yourself. Keep your chin up!!! Way to GO!!!!!!! Jennifer P.S. You may not know me but if you need anything or want to talk you can email me at arieswoman99@hotmail.com. Infact, that's for anyone that needs to talk about anything if doesn't matter what. :)

Cheryl - June 7, 2006

I love this post! You know, I have arrived at the same conclusion. For all of my life, I've had poor vision. When I say poor, I mean walking into walls poor. And it's not correctable with glasses either. Something to do with my optic nerve. So on top of barely breathing, I am visually impaired but for most of my life I've tried to hide it. I'd say I saw things I did not see. I'd pretend to be distracted when I should have been looking at something I might have to comment on and so forth and so on. I've read that people who cannot read learn tricks so that nobody knows.. Like that window shopping routine all PAH'ers learn when they cannot explain their breathlessness...there are tricks and there are tricks. Well, I'm not hiding my impairment anymore. None of them and the list sadly is growing. I take out my magnifying glass to read menus and when I cannot read it, I ask for help from my companion. By now, the cat is way out of the bag here. It's not your fault that have this disease and you do not owe people an explanation unless you feel they deserve one. There are ways of asking questions and some people's questions just feel rude. I would have given that gal a sassy answer. If someone were to ask me what is wrong with me, I'd be inclined to say, "A lot. How much time have you got?" P.S. David must be aware that you cnanot keep up. Let him take over when you need to cab it. If he just pulled you aside and said, "we'll see you all at the restaurant" nobody would ask why (probably).

sheri mn. - June 7, 2006

u said it girl.

Home Again, Home Again

We've been back from Germany for about ten days now. Ten days that have been most eventful!

On the way out of Germany, David picked up the Norwalk Virus from one of his co-workers. The Norwalk Virus gives the gift of the stomach flu. My poor darlin' was sick the entire flight home. I felt so badly for him. I know that being sick at 30,000 feet was miserable for him. He couldn't get comfortable. He couldn't keep down the medication the flight attendants gave him. Thankfully, by the time the flight landed ten hours later, he was feeling a little better.

After waiting an hour in the line for the first US Customs Booth, we made our way through the airport to retrieve our luggage. Our luggage was nowhere to be found. As we started snooping around for it, we noticed that several other passengers were snooping around for their lost luggage. The baggage claim attendant tried to blame our lost luggage on the folks in Munich. We knew better. The German people are entirely too efficient to leave 30 bags of luggage on the tarmac in Munich.

As it turned out, we were right. When the luggage box came off the plane, the Charlotte-Douglas International Airport employees responsible for unloading it left half of the luggage on it and stuck it back out on the tarmac to be loaded for the next flight. Genius! Well, at least we made it home with all of our luggage.

The day after we arrived home I fell ill with the Norwalk Virus. I can't accurately describe how sick I became that day. By the end of the day, David was calling an ambulance because I was so dehydrated that I had become incoherent. He claims I was talking about people wrapped in a net outside in our front yard. I believe him, I just don't recall talking about people in the yard.

At the hospital they admitted me and pumped me full of IV fluids. They actually gave me too much in the way of IV fluids and I blew up like a balloon. If you remember the Stay-Puf Marshmallow Man from the Ghostbuster movie, or even the Michelin Tire Guy - that's what I looked like when I was released from the hospital a day later.

Now, more than a week later, I'm still trying to get rid of the extra fluid. I don't look like the Michelin Man anymore, but my legs and feet are much larger than they should be. I follow up with my GP tomorrow for lab work to make sure all is well.

Last week David had to go to Pittsburgh for work. David's son, Adam, and I joined him on the trip and we all did the tourist thing for a couple of days. We went to the Zoo and Aquarium, the Science Museum, took a "Ducky" Tour, and just had a really nice time. It was a really good week for us to spend with Adam, after not seeing him for a month.

This week is nothing but Catch-Up 101! I have so much to do around town and around the house. I just have to do it all in moderation, because my feet have to be up most of the day. At least I can get work done on the laptop while my feet are up. :-)

Comments:

Cheryl - June 26, 2006

The golden age of air travel is so OVER! Flying used to be fun and relaxing, but that was a long time ago. Welcome home.

 

Friday, June 30 2006

Date Night

David and I are going out on a date tonight. We're both scheduled for super busy weekends, in two different directions. I thought a nice evening out together would be a good way to start the weekend.

After a visit to my family doctor on Tuesday, my fluid retention is almost gone. We doubled my diuretic - which was really quadrupling it because it had already been doubled. I've been keeping my feet up and relaxing all week. It's been a welcome break.

We're going to see a movie tonight, but we still haven't decided on dinner yet. It's come down to Tex-Mex or Sushi. I think it'll be Tex-Mex.

Well, not much to report today. Just gearing up for busy times ahead ...

Comments:

Jenni - July 3, 2006

A girl can't kiss and tell! No really, we had a great evening together. It was nice to just spend time together over dinner (we finally decided on Tex-Mex) talking, and then enjoy a movie together. Alex, I love sushi too. I gave David a sushi making kit for Christmas. It had the rice paddle, the rolling mats, chopsticks, a few other tools, and the instruction manual. Before we went to Germany we pulled the kit out and learned to make sushi together. One of the rolls we attempted was the California roll. It was yummy! Take Care! Jenni

Alex ^i^ - July 3, 2006

Hey Jenni! now you have to report on how that date went! I hope you guys had a great time!!! Sushi sounds awesome! I love those California rolls!!! send some my way. lol. with love alex ^i^

Sue - June 30, 2006

Jenni, Hope you have a good time to night...you deserve it!! Good luck with the busy time! Hope you don't get too busy! Remember to rest! Take care! God bless, Sue

Lazy Day

It was a lazy day at our house. The 4th of July came and went in relaxing fashion.

This morning we slept in. Breakfast turned into brunch.

My brother wanted to hang out with us today, so I went to pick him up around noon. We took the long way back to my house, giving us the chance to talk. It was an opportunity we haven't had in quite a while. We took advantage and had a great chat.

Later this afternoon we all loaded up the car and headed to the Fireworks store. We picked out several explosive devices that looked good. I like the little "Chicken" fireworks. They are shaped like a chicken, shoot sparks, and finish by laying an "egg".

We had dinner with my in-laws at David's brother's house. It was a great family get-together. The only thing missing was my mom. She and my stepfather traveled to NC today to visit my Granny C.

After dinner the men gathered in the driveway to detonate the 'explosives'. It was quite a show. Between what my brother-in-law had purchased and the fireworks we brought, it was just unreal.

Spending the time with family and enjoying a lazy day was wonderful.

What a great Independence Day!

Thoughts On Medication And Such

I'm not really a big complainer. Sure, you'll hear me complain from time to time (everyone has to complain at some point), but it's not often that I do. I prefer to bottle things up and let the volcano erupt every few months or so. :-)

Today, I am complaining.

I despise taking pills. Tracleer, Lasix, Coumadin, Thyroid pill, blah, blah, blah, and all the rest .... I despise swallowing them all.

If everything came in a bubble-gum flavored liquid, you'd never hear me complain about swallowing medication. The pills, on the other hand, get hung in my throat. They start dissolving in my mouth before I have time to get a sip of water. Some of them make me gag. (I know ... Boo-Hoo!)

I have chewable vitamins because of my opposition to swallowing pills. I skip pills from time to time because I just don't want to choke, gag, or spit that day.

The pills are necessary. The medication keeps us alive. It could be worse. All of these things I know.

So, where can I find the peace I'm supposed to make with taking pills?

I'm headed to a political protest tonight, which is great since I'm in the perfect mood for one. Broody and sullen seems best for protesting, don't you think? :-)

Comments:

Annie - July 7, 2006

i lined Tim's pills up one day and counted his daily dose - there were 52 pills! Some days he just flipped out and did not want to take them - i think that is fair enough and i wished i could say - yay lets be naughty today and not take these stinking pills. But we both knew he had to. Plus jusy as an added bonus he wouold get side effects like heartburn and numerous other little goodies. The other thing was that by the time he swallowed the million gazillion pills it put him over his fluid restriction without having a nice drink. Boy did he hate that!!! I totally understand the pill protest - and i will make and hold the banner for you, walk up and down the front of your house ...." say NO to pills today, say NO to pills today" in protest for you :) Love Annie

Sue - July 6, 2006

I agree with all of you!!! With having to take 15 potassium pills (the big white ones!!!) and then all of the other 15 pills or so...I'm so tired of taking them! I guess I could ground them all and put them in a milkshake or something equally good...then I wouldn't taste it! Anyone have any good drinks they want to suggest??? Altho, my hardest beverage has been 1 1/2 wine coolers and everyone (family) thinks I got drunk on them!!!! Anyway, have fun at the protest! God bless, Sue

Dolly - July 6, 2006

I totally agree with you about taking medicine. I HATE taking all of it even if it did taste like bubble gum. I take only the ones that are needed and that is is. I don't even like taking a tylenol. Take care and God Bless. Have fun at your protest, Love, DOlly

JeannieTX - July 6, 2006

I hear you about hating to swallow pills... I remember when I was first prescribed birth control pills (about 400 years ago!) I thought I would NEVER be able to swallow a pill every night. I was so happy when I saw how tiny they were. There is actually a small pill spoon I've seen advertised... I think it was designed for children, but seems it would work for adults too. I'm not positive, but I think it puts the pill way back on the tongue...(which seems like one could do that themselves... maybe kids can't or won't??). Or... you could do like I do for my Gertie... hide the pill in a dab of cream cheese... she thinks she's getting a treat... lol! (tell your husband to hide the pill inside a chocolate covered strawberry for you!)

Jenn - July 6, 2006

No, the perfect perfect Perfect way to swallowing a pill without tasting it at all, is to take a sip of your water, or whatever it is your drinking BEFORE you put the pill in your mouth... Take a sip, don't swallow, throw the pill into your mouth and then swallow. This is the only way I can do it, and it works, because I never taste a thing.. Try it, I swear to god, it makes it so much easier.

Cheryl - July 5, 2006

My mother tried to teach me how to take pills by putting the pill on the front of my tongue. It was suppose to flip back and go down easily, but it never did. Years later I learned I have an inverted swallow. Instead of my tongue undulating like other folks, it does something else. No wonder I could never swallow pills easily! I learned my own technique. I toss a pill back into the dark recesses of my throat and then take a sip of water. It works out well most of the time. If I don't toas it, it will just sit there and begin to dissolve. Perhaps you're a tongue thruster like me? What a weird topic for a foggy Wednesday!!!!!

When Things Come Together

Planning can be a pleasant breeze, or a stressful event.

Sometimes you can get all of your ducks in a row early on, and your plan doesn't require much thought until it's time to execute it.

Then there are times when you're biting your nails at the last minute hoping for the grace of someone, somewhere, to help you out.

This weekends support group meeting resembled the latter until yesterday.

When I pick a theme/topic for our support group meetings, I choose from a list of ideas submitted by members of the group. I think picking topics that way ensures that everyone in the group gets to learn more about topics of interest to them, rather than hearing about topics that only I find important or relevant.

The topic for our meeting is "The Emotional Side of PAH - Issues in Dealing With Chronic Illness". I just needed to line up a social worker, counselor, or a psychiatrist to come in as our feature speaker.

I contacted the speaker's bureau of the hospital where our meetings are held. I contacted the Department of Mental Health. I contacted different offices here, there, and yonder. I couldn't find a speaker.

It wasn't until I called in the help of a fabulous PH Specialist, that's very involved with our support group, that I was able to find a speaker. I found out yesterday that she had confirmed a speaker for us! Now our meeting can proceed as planned. Whew!!

I chewed my nails until I received the e-mail with the speaker's name and information yesterday. I thought we were going to end up winging it with no speaker.

I love it when a plan comes together!

PS - I want to thank everyone that responded to my last diary entry about pills. Your suggestions have been so helpful and it's a comforting thing to know that I'm not alone. :-) Thank you!

Comments:

Dolly - July 12, 2006

I am so happy that you got everything all figured out and set up. I hope you have a wonderful meeting. I, myself am still kind of scared to go to a PH support meeting. I guess I am afraid that I will end up dwelling on this illness and get depressed. Take care and God Bless

Support Group Chatter

Today we had such a great support group meeting!

If you read my last entry, you recall that the topic for our meeting today was "The Emotional Side of PH". Our speakers were to discuss issues related to dealing with chronic illness.

The speakers were wonderful. Rather than stand up in front of the room and lecture, they facilitated an informative, interactive, and moving discussion between everyone. I learned a lot about those support group members in attendance today. I think we all learned a lot about how we each cope with the illness in different ways.

Today we also had three new members join our group. I'm so glad they found the support group. I know, for me, that meeting other people with PH was a tremendous experience. There's something to be said for finding people that can relate to you in the way support group members can.

I have about 30 people currently on my mailing list for the support group. Out of that list there has been a small group of "regulars", over the last year, that attend every meeting. In seeing them at meetings, and talking to them between meetings, I've come to genuinely love, respect, and admire these people. They each touch my heart in a different way and I feel truly special to have them as a part of my life.

Don't get me wrong, I like everyone in our group. I've just had the opportunity to get to know some of them better than others. I'm still working hard to get to know everyone.

Something I often wonder about are those people that attended our first support group meeting, but never came to another. Was it something I said? Were they not comfortable around other PHers? Did they not enjoy the meeting?

I don't know....I just hope they have the support they need at home to help them cope.

Well, if they decide to come back we'll be here.

Comments:

Sue - July 16, 2006

Jenni, I am a support group leader of a support group that never happened...I think they have to want to come back. You can only do so much for some people. It looks like you had a great topic and there was great response. Maybe the ones that never came back weren't ready to listen? You will never know. But you have a good thing going and don't ever stop it! Maybe one day they will walk in...you have to keep that hope. I hear ya girl. Congratulations on a job well done! I'm trying to get mine started again...only with more help! We're going to have a carnival as the first meeting...like a kick off or something! Talk soon! God bless, Sue

Falling Off The Wagon

My brother has fallen off the wagon again. He was clean and sober for seven months. Now he's back on something. It makes me sick to think about it.

I don't know what he's taking. I know he's drinking and I know he's smoking weed again, but neither of those would explain his behavior over the last week or so.

A week ago he decided he would travel to NC to visit our Dad and our grandparents. It was a bad idea from the beginning because the terms of his probation don't allow him to leave the state. NC is clearly out of state.

While my brother was visiting, I called our Dad to inform him of the situation. I don't know what he said to my brother, but my brother was very angry about it. He accused everyone but me of calling our Dad and "tattling".

At any rate, he took a bus home on Wednesday. While he was on the way home, my mom received a call from my grandparents. Before my brother left town he had stolen at least a few hundred dollars from them. He Stole From My Grandparents! My grandparents who have never done anything but love us all and are on fixed incomes so they obviously need the money. He stole from my grandparents. I'm so angry about it that I don't even want to see my brother.

It was bad enough when he recently started stealing from my Mom. That made me incredibly angry. Although, I have to say that stealing from my grandparents absolutely ices the cake.

I love my brother, but I don't like him at all right now. Good thing I have an appointment with my therapist on Monday ... :-)

Comments:

Annie - August 6, 2006

Sorry to hear you are going through that at the moment - don;t you just feel like shaking people that self destruct, especially when people are trying so hard to just to live. My doc said to me when i was getting my knickers in a knot about someone elses behaviour. If you cannot change IT ( whatever IT may be) you have to change to way you think about IT. I try to do that when i can so i don;t go banana's. it sounds like for the moment you can;t do anything about his behaviour and will have to think that it is his weakness and try and block the hurt if you can. Big hugs - it is a hard time for you Annie

Ever Just Want To Stick Your Face In The A/C Vent?

It has been so humid and muggy around here lately. The average daily high temperature dropped about ten degrees from last week, but I think the humidity rose to make up for the lost heat.

I was born in the south, raised in the south, and have lived all of my life here in the south; so for the most part I had grown accustomed to the humid summers. Then when PH came along it was like I'd never spent a summer in the south. The humidity literally takes my breath away when I walk outside.

After being out in the heat and humidity, all I want to do is stick my face in the air conditioning vent. With my face in the vent, I can breathe in crisp, cold air that feels so much better than the heavy air outside. That may sound silly, but I have a feeling that those of you with PH actually know what I'm talking about!

I saw my thyroid doctor on Friday. He was terribly concerned about the extra fluid still accumulated in my legs from late June. He wrote an Rx for a higher dose of Lasix and in just two days I can already see my ankles again! :-) My fluid retention has actually gotten so much better that I can finally fit into a skirt I purchased in June and haven't been able to wear yet. I wore it today.

I've been working on a variety of things lately. I have a lot of pots in the fire, or is it irons in the fire (?), anyway - I have a lot of something in the fire. (Ha-ha!)

I was able to clear some space in my upcoming schedule last week though. I resigned from the campaign team of one of our candidates for Congress. The candidate and I had a difference of opinion. He thought he was God and I disagreed. :-)

Well, David wants Pesto for dinner so I'm off to do something with Pesto. He's on his way back into town from a day trip to NC. I'm sure he'll enjoy a nice meal when he gets home.

Comments:

JeannieTX - August 7, 2006

Hi Jenni, I don't know if this will help, but I've found keeping oscillating fans on in every room ...and adjusted so they blow straight toward me... seems to help... in fact, I actually had to turn the thermostat up a few points. I also have ceiling fans in most rooms, but the floor fans seem better to me. I bought one last year at wal-mart for about $35... and bought it mainly because it was black metal and was made to look sorta vintage... it is a floor model & the pole can be adjusted up or down to change the height. I liked it so much I bought another later in the summer... then, this year, bought two more similar... and already had another fan... so I just keep 'em all running. I think keeping the cooled air moving helps a lot... and the ceiling fans just weren't doing it. Good luck... and meanwhile, I say 'face in air conditioning vent' sounds good to me!

 

Writer's Block & Such

I've been attempting this diary entry for a week now. I stare at the screen and nothing flows. What frustration!

Actually, I don't think it's writer's block at all. I have had a really rough time with my PH lately. Shortness of breath, tightness in my chest, and my gosh the fluid(!).

So I can think of plenty of things to say, but they all rack up to being nothing more than a laundry list of complaints. This hurts, that's harder to do than usual, so on and so forth.

I spent three afternoons this past week, in my recliner, watching Food Network cooking shows and napping. That is so unlike me.

For well over a year now, I have lived a pretty calm PH life. Yes, I've had PH but the symptoms have been so well controlled that I hardly noticed. Now, it's more than noticeable and I don't like it. I feel like I'm falling backwards, or regressing to the place I was before I started Remodulin. Not a good place. It's scary, dark, the air is heavy, and for all intents and purposes I don't want to think about it.

"I won't think about it now. I'll think about it tomorrow."

At any rate, I did manage to get a small amount of work knocked off my "List" this week. I registered for Fall classes, completed and uploaded the state political party's new website, and finished the support group's August newsletter.

The consensus among my doctor team was to increase my Remodulin dose. I'm to do that over two weeks and see my PH Specialist in early September.

I'm hoping this helps.

Comments:

Cheryl - August 20, 2006

Boy can I relate! Yes, it is dark, scary and the air is heavy. When I feel that way, I remember the two panic attacks I had early on. I hope the increase in Remodulin helps bring you back to a comfortable level of day-to-day living. I will keep my fingers crossed for you.

 

We're Off To See The Wizard!

Well not the Wizard, my PAH Specialist.

We're heading to Charleston tomorrow for an ECHO, lab work, a 6-minute walk test, and a visit with the specialist. I've had so much trouble breathing lately that this is a welcome visit. I need answers!

My appointments aren't actually until Friday, but Charleston is a three hour trip. With my first appointment scheduled for 8:00 am Friday morning, we'd need to be on the road by 4:30 am. I don't even know my name at that time of morning, and David just got in from working in Switzerland. Neither of us is up for an early morning drive.

I hope this visit to the specialist yields good news and solutions for my problems. Ever since I was given all the extra fluid by the hospital back in June, I haven't been right. I've been fatigued, breathless, depressed, and just plain ill. Some days are better than others, but most days stink: PH-wise.

It will be a busy day today - finishing up some small projects and meeting a few deadlines. I also need to study for the Algebra exam that I must take tomorrow before leaving town.

Well, better get started on these "must-do" items or I'll never get out of town! :-)

Comments:

Nancy - September 6, 2006

Don't let that wizard get away without giving you some answers to your concerns! Have a safe trip. I hope you can turn this into a pleasurable trip, as well. Plan a special night out with your husband to make some wonderful memories.

Now That I Have Them, Did I Really Want Them?

I ventured off late last week in search of answers from my PAH Specialist. Answers to explain why I've felt so fatigued, breathless, cranky, and pained lately.

Well, I received some answers. Now that I have them, I'm not sure that I wanted some of them. To recap the highlights ...

They found fluid around my heart that we're calling Moderate Pericardial Effusion, or MPE simply because I'm lazy today. :-) They don't know what is causing the MPE. The cause could be one of any number of things - most of which I gave blood to be tested for.

The left side of my heart is overextended. This seemed to be easily explained and will hopefully be easily fixed. Apparently I'm on too much Remodulin. We're lowering my dose slowly over the next two weeks in the hope that it will cut down on the "good time" the left side of my heart is having.

My doctor thinks it's time for me to consider being evaluated for the Transplant List. It's not something that he thinks I'll actually need - pending the outcome of all my bloodwork - but it is something I need to go ahead and get started. Since being evaluated for transplant is extensive and lengthy, it's better to get listed before you're in dire need rather than wait.

All of this came as a blow I wasn't expecting. I really thought that the reason for my recent onset of issues was the extra fluid that I took on in the hospital back in late June and it could be easily remedied by more Lasix. No such luck.

Well, it hasn't killed me yet so it must be making me stronger. :-)

Comments:

Bailey - September 12, 2006

Jenni, I've had the same thing happen to me twice in the past. There was never any cause found for the PE, but one resolved itself and the other had to be drained. I've been fine ever since. Hopefully yours will resolve quickly and you won't have to worry about it anymore. As far as getting evaluated for transplant listing, I did that three years ago. It is an exhaustive set of tests, but I believe as most every PH patient does, that it's better to be evaluated before you need a transplant. Good luck and my thoughts are with you.

Cheryl - September 11, 2006

It's like a slap in the face to get such news. I know it is a blow. You will absorb this lousy information in the days ahead and know what to do. I've had pericarditis twice, but in both cases, I had terrible chest pains that came on suddenly. There seemed to be no explanation and at those times, I was not in "poor" health. It might still be related to the over watering you received at your last hospitalization. But do check it out.

Marking A Hospital Off My List

On Tuesday, I celebrated my 29th birthday.

The day started out wonderfully! I slept in, had Fruity Pebbles for breakfast, and relaxed. My mom took me to lunch and we both had our nails done afterwards. To end the day, David and I welcomed our family and close friends over for a barbecue and birthday cake. It was lovely! I so enjoyed spending time with the people I love on my birthday!

However, before I could even get a bite of birthday cake I was overcome by the most severe pain I think I've ever felt. It was a sharp, stabbing pain in my right side / lower right abdomen. On a scale of 1 to 10, it was a solid 9.5!

When you experience pain in that area, you first think appendicitis. Without much discussion, we headed to the hospital.

In our friendly neighborhood Emergency Room, very few people know anything about PAH. Tuesday night they had their finest unknowledgeables on staff.

Between the CT Scan Lab Technician that tried to take my pump away because she thought it was a cell phone; and the surgeon who hadn't even looked at my chart and was completely unaware that I have PAH, it was a rough 14-hour visit in the ER.

They ruled out appendicitis, but were unable to assign a cause to my pain. I was released and told to come back if the pain got worse. Thankfully it's gotten better and I won't need to return. My pain is no more than a memory this morning.

I won't be returning to this hospital, other than to pass out PAH education literature. I will no longer seek care inside those doors. Luckily, there is one more hospital in town that I can try.

Hopefully I won't have to assess their knowledge any time soon!

Comments:

Nancy - September 14, 2006

I'm sorry that you had to endure an under-educated medical staff at your local hospital. I hope you are serious about taking PH literature to the staff. Happy Belated Birthday!

Can Chocolate Ease Defeat?

As I sit here with a box of Swiss Chocolate (David was in Switzerland on business last week), I've been pondering what all of this means.

By 'all of this', I'm referring to the news I received last week at the PAH Specialist.

I think the best way to sum up my feelings is to say I feel a sense of defeat. I've been fighting this fight officially for two weeks shy of three years, and unofficially almost four years. Longer than some and not nearly as long as others.

To hear that I may need a transplant makes me feel that maybe my fight wasn't good enough.

Did I really fight as hard as I could have, if this is what it's come to?

Maybe if I had done this, or done that I'd be sitting here reveling in better news?

I know it doesn't work that way. Unfortunate as it may be.

Regardless, I have to put this aside right now and work on Support Group work. I really need to finish the August/September newsletter, and complete the flyer for our next meeting. A trip to the Post Office is also in order. It's just hard to get these tasks completed when I'm not feeling very Support Group Leader-ish.

Maybe more chocolate will help?

Comments:

Cheryl - September 15, 2006

Chocolate is good for so many things. The progression of this disease is completely out of your control Jenni. Control is an illusion many of us have for a few decades in our "youth". It's not your fault. Take it easy. Stress is so bad for the heart. Slow it down and concentrate on that chocolate.

Into The Groove

I'm falling back into the groove this week after last week's health issues and the associated foul mood that came with them.

On Monday I attended my second session of a new art class. I signed up for a painting class, which started last week. The class is offered through the County Art Museum and we meet each week on Monday morning for about three hours or so. I've never taken an art class like this before and I'm enjoying it tremendously. It's very laid back and relaxing, more so than I ever thought it would be. Such a nice escape during a time when I could use a little escape from my own rambling thoughts.

In keeping with the Art Theme, my mom and I are taking a Clay Class tomorrow night. We're supposed to learn how to make a "decorative, functional piece of art out of clay for our Fall Holiday table". While I'm sure that it's an accurate description, just reading it cracks me up. I'm more of an abstract art kind of gal, so I can only imagine what my "decorative, functional piece" will look like.

I've been working on political party business, support group work, and Algebra homework this week. I've spent so much time in front of the computer I think my eyes are starting to cross. It's actually been somewhat productive though.

Well back to the grind ... my work won't finish itself (as much as I'd be willing to pay it to do so!) :-)

Comments:

Nancy - September 20, 2006

I am glad to hear that you have found a new interest and have enrolled in a class. I have never tried painting but imagine that it is very calming. It is good to find something of interest that can take the mind off of worries and health problems. Have fun in your class. Share your work on a PHcentral Creative Corner page.

Final Entry

On February 16, 2007 what should have been a routine right heart cath to determine Jenni’s pulmonary artery pressure, went very wrong. Fluid began to build up around her heart and was siphoned off, but Jenni slipped away despite the ICU staff’s best efforts to revive her.

Jenni was on staff here at PHCentral and we will miss her optimistic spirit and willingness to help. She joined our staff as feature editor but also contributed to the medical section as she juggled so many other projects in her busy life.

If you’ve read this diary, then you will know how devastating a loss this is for so many. She was far too young and far too vital for this ending.

Cheryl Switzer

Comments:

joseph jordan - March 6, 2007

aka poacherjo.. Sorry I havent been keeping up lately.. Such a loss.. Jenni has gone on to a better place, no more breathing problems, no more pain. She will be missed. We will just all have to wait until we see her again.. Prayers for her family and friends. Love to all... poacherjo

Jo Williams - March 2, 2007

I don't know how the world can survive without you, Jenni. You were a force greater than your years here. I will never forget you, your positive attitude and your willingness to help everyone with everything. Your family is blessed to have had you and I am eternally grateful that we met. Jo Williams

Leigh Kyzer - February 22, 2007

Jenni was a member of my family too. We will miss Jenni and know she is in a better place. Eden and Nicole miss you "Aunt Jenni". All our Love Leigh, Alex, Eden and Nicole

Brian J. Scott - February 22, 2007

I had hoped that the next time I would hear the name "Jenni Messel" that it would be in regards to her work with local politics. Such was not to be, and for that I am very sad. I was a classmate of Jenni's back in high school and had only recently run into her. I was glad to hear of her political work and had hoped to become similarly involved. My heart goes out to her family and those that knew and loved her. God bless.

Dawn - February 19, 2007

God bless Jenni. Her diary has been such a joy and learning experience for readers. God be with her family, and PHriends. May she breathe easier with God.

Sue - February 19, 2007

Jenni, You will be missed. You fought the good fight for all of us! You are with us in our minds and hearts! You will be here to watch over all of your family. My prayers are with yours husband, David and the rest of your family. May you rest in peace and sore freely with the rest of the PH angels who sore with you! Breath easy, Kind Lady! God bless your family! Sue

 

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