November 29, 2008

Comfort From Above

My Grace is Sufficient ~ 2 Corinthians 12:9-10 ~ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Many of you who read my blog are probably been wondering why I haven't written lately! Let me share why....

1)the new medication I am taking has been making me very dizzy and sick, more than I already am - I am having trouble concentrating. It seems just moving my eyes makes things worse.

2)the nerves in my hands are getting worse so typing has been just a tad difficult. Thank you for spell checker. I can't feel my fingers on the keyboard - I have many pinched nerves in my neck causes this - so with God's help I will keep getting my blog out - just not everyday.

Over the last couple days as I was praying for others I realized how much I rely on the Word of God to get me through from one day to the next. I can't get through a day without His help, guidance, comfort and strength. Have you realized where your strength to go on, comes from?

The God of All Comfort ~ 2 Corinthians 1:3-7 ~ Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

May the Lord touch each and everyone of you that reads my blog with comfort and strength, send Blessings to them all, Amen.

November 26, 2008


Philippians 4:6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests by made known to God.

Thanksgiving is a time of year that most people get together to have a special meal and say a prayer for the food and go around the room saying one thing they are thankful for. But for me being a Christian, thanksgiving should be everyday. A prayer given to the Lord saying how thankful we are for all that we have not just asking for things.

Times are rough for many, finances are low, food is minimal and families are at awe with one another. I'm no exception - life it self can be unpleasant. Despite all that is going on around me I have to put Jesus first and thank Him for my life. I thank Him for the food I have, the clothes I wear, the monies I have. I thank Him for my medications I take daily, for my friends that I have. I thank Him for taking care of me.

The call I received a call today was telling me that I will continue to receive 2 free hot meals a week, you might think so, the thing is I called her days ago telling her, she could stop giving to me and give to someone else who really could use them more. She surprised me by saying that I was more in need than anyone else she could think of. She will keep delivering these two hot meals until she felt I didn't need them. There are people reading this blog that don't realize making simple meals are very hard, bending over to put in or take out of the oven can cause me to have trouble breathing. So these hot meals are a blessing.

We were on the phone for about an hour - me thanking her about a dozen times for the meals and telling her how much appreciate what she is doing for me. Then she asked what was wrong with me and ask about PH. I told her my story - come to find out - her best friend passed away from PH awhile ago - she knows what PH was and is but never knew anyone else with it until today. She said she I told you, you are in need of these meals. Though I feel there is someone else out in my area that might need theses meals more - I will receive them with a thankful heart.

The Lord works in mysterious ways - so please be thankful no matter what - be a blessing to someone today. May you and yours have a very Blessed Holiday.

November 25, 2008

Just alittle update ~

Colossians 3:15 - and let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.

Today I am struggling to write - the words don't seen right - my hands are typing the wrong letters. I am not feeling good today, it's 2:30pm and I am still waiting for my doctor to call. I am going back to bed, rest is best on days like today. I have deleted, added, erased more than I am typing so I think I will leave well enough alone. Tomorrow is another day. Blessings to you all.
Thank you for your continuous prayers for Mason and Nikolas they are doing better in small ways.

Update on Mason - Colleen writes -well, our boy wonder is sitting up in bed, and trying to eat a little more solid foods. His doctor saw him sitting up and watching tv this morning, and was completely stunned! He can't believe how much progress Mason is making. Mason is working with a PT, and someone mentioned him coming home for Thanksgiving, but Janet really doesn't think that's going to happen because he is still so weak. Anyway, that's the news I got for tonight! He keeps slowly improving, and everyone is so amazed!! :)

Nikolas - is now moving his legs a little - his mom said he bit her finger while she was holding him, small baby step but in the right direction. Praise God.

November 23, 2008

In All Things Be Thankful

Enter His gates with thanksgiving, and His courts with praise.
Give thanks to Him; bless His name. For the Lord is good;
His loving kindness is everlasting, And His faithfulness to all generations. Psalm 100:4-5.

There is always something to be thankful for, not just on Thanksgiving but everyday. Today am thankful for my life. Maybe it's your home, the car you drive, transportation, your family, your friends, your clothes, your food, your finances. The medications, the doctors and nurses, caretakers in your life. These are just a few things to be thankful for on a daily basis. Some go without. I have given my life to the Lord so I can be used to do His work, it doesn't matter what He has called me to do, or if I will be healed as long as I have Him besides me.

Because of your prayers for a few of the many who have PH, they are being touched by God, and that is something to be thankful for.

Mason - has his ventilator off - he is responding in nods and small words. Still in ICU but doing better.

Cassie - is now home and resting, bleeding has stopped.

Shirley - is improving daily.

Little Nikolas - is improving in baby steps, still have a long way to go, but he is still with us.

As for me I'm still here - doing what I can - each day is always different. Today I had all intentions of going to church. I got up in plenty of time, but I was so swollen I looked up and realized I forgot to take my water pill yesterday. I have to take this daily or I fill up with fluid everywhere including my heart. Once I take it, it's like the commercial - I go and go......

I sit here today thinking and thanking God for all He does for me just by asking. It is hard at times to be joyful and thankful when we are going through so much, but it is how I get through my days.

Here is a little something that also helps me keep going - A simple prayer:

Lord, help me believe in what I could be, and all that I am.
Show me the stairway I have to climb.
Lord, for my sake, teach me to take one day at a time.

We should always take one step at a time, and one day at a time. Sometimes it might mean taking a minute at a time or even a half a day at a time. It doesn't matter - we never know what tomorrow will hold for us. God will teach us which way to go if we ask Him. And always thank Him for the way He has chosen for you it does make life easier.

November 21, 2008

The Yellow Rose of Peace

The Yellow Rose of Peace ~

“I always thank God for you because of his grace given you in Christ Jesus. For in him you have been enriched in every way – in all your speaking and in all your knowledge.” 1Corinthians 1:4-5.

When I started my home business in 1994 I based it on the above scripture, also I used the Rose as my symbol for my business (floral designing & landscaping). The Rose has a special meaning to me - it represents the God Head Three in One.

The Rose is the only perfect flower made, I believe, the bud so perfectly formed to me symbolizes God - protecting His Son within, the open flower in full bloom is so awesome, breath taking in so many ways - symbolizes Jesus - perfect without sin, the stem with it's throne's symbolizes our sins, trials and tribulations we have to endure. A garden full of Roses always makes me feel like I am in heaven, it is so captivating.

I met a girl down in Chicago in 1994, through a support group for RSD (Reflex Sympathetic Dystrophy) a nerve disorder that causes extreme pain 24/7, that many have but don't know they do until diagnosed. Anyway Kim and I got along like sisters, every time she needed surgery I would go there by train or bus to be with her...she always did the same for me. Strangely her favorite flower was the Yellow Rose. I went to Chicago once a month to the support group, every two weeks for treatments for my RSD. I always would go to lunch or something with Kim when I was in town, for 2 years.

One day in 1996 she called me up and asked if I would be her bride's maid - and could I do your flowers for her wedding, she added all I want is yellow roses. I was so delighted I said yes. There was only one problem she said - due to the RSD my frozen shoulder, how can I carry the flowers? She made an appt. with her treating dr. who said to go see her surgeon.

Kim's surgeon said all she needed was one more surgery on the shoulder and she would be fine. The surgery was scheduled for Sept. 1996, she moved her wedding up to Nov. from April. Her dr. told her she would be ready. Mark was so thrilled as was Kim.

The day of her surgery I could not be there, first time I missed being there, but I had an ortho appt. at the same time in Milw. she was in Chicago. As I was going up in the elevator to my appt. I felt something was wrong with Kim. A small voice said, "I called her home". I looked around to see if anyone else was there talking, but I was alone. God had prepared me ahead of time. I yelled oh no please don't tell me she died! I kept thinking maybe if I had gone there instead of my appt. this wouldn't have happened, but it did.

I got home and in my mail was a card from Kim, also a message from Mark to call him. My heart sank.... the card Kim sent me was the exact same one I sent her two days prior, I thought, this can't be mine. It was not, "My Yellow Rose of Peace" which she wrote....Remember....Someone always cares. Love Your Friend From Afar, Kim. One can't even imagine what I was thinking, I knew before calling Mark, the Lord called Kim home. A peace came over me before I even picked up the phone to call, Mark said thank you for the card you sent Kim, we rec'd it today and I will put it with her in the casket. It was the same one I rec'd from Kim. He said that he is at peace with Kim's passing.

With my leg in a brace, I asked a friend to drive me to the funeral in Chicago - and I layed a dozen yellow roses beside her. Mark and I never met, but when I came in the room with the yellow roses we hugged and cried - we knew who each other was. God brings people in our paths for a reason - sometimes we will never know why. Kim needed a friend who understood what she was going through - RSD. I was the one.

The same with PH, there are so many I have met via the Internet - that I believe God is allowing me to go through PH to be there for others, as He allowed me to be friends with Kim. But a cure needs to be found, there are too many deaths because of PH. So my prayers will continue.


When I give to you a yellow rose
I wish you the peace
That only heaven knows
As you look upon its beauty
And feel the love
Know that our friendship
Is blessed from above

Accept my yellow rose
With love and peace
I pray that your joy in the Lord
Will never cease
When, He comes to take you
From this land
May He walk with you in eternity
Hand in hand
by: Esther Lorenz

November 20, 2008

The Difference ~

Mason - Colleen just got off the phone with Janet. Mason is improving a little every day! He's being weaned slowly off the sedation, so he has been much more alert. He is still on the ventilator, but he is starting to breathe a little on his own. The respiratory therapists are working with him every day. He is able to respond to questions by shaking his head yes or no. His doctor is very pleased with how Mason has been improving. I told her we all knew he was a fighter, and he is proving us right!

Shirley - Is the one who just recently had a heart and double lung transplant, she still is in need of prayer, she came home briefly to a relatives house, only to have to be re-admitted in the hospital again.

Nikolas - A 1 yr old is fighting for his life. Now with a blood infection on top of everything else that is wrong with him.

Cassie - A teen in the hospital bleeding from her lungs, they believe they finally have it under control.

When does it end - so many in the hospital - in need of our prayers. Lord I can't even think about myself lately. There are so many more sicker than I am, in much more need of prayer than myself. I briefly talked to my pastor yesterday - telling him all that has been going on. Telling him all I have been doing lately is praying for others - that their need is greater than mine. I am prayer for a miracle for many. Strength to the families of these mentioned they have so much to deal with they can't possibly do it on their own.


There is a card I keep on my desk as a reminder -
it reads --

The Difference

I got up early one morning
and rushed right into the day.
I had so much to accomplish
that I didn't have time to pray.

Problems just tumbled about
me, and heavier came each task.
"Why doesn't God help me?"
I wondered.
He answered, "You didn't ask."

I wanted to see joy and beauty,
but the day toiled gray ad bleak;
I wondered why God didn't show me.
He said, "But you didn't seek."

I tried to come into God's presence;
I used all my keys at the lock.
God gently and lovingly chided,
"My child, you didn't knock."

I woke early this morning,
and paused before entering the day;
I had so much to accomplish
that I had to take time to pray.

If we don't take the time for Him, how can we expect Him to take the time for us. It is a two way street. He will never leave us or forsake us, but we have to except Him into our lives.

November 18, 2008

PH Awareness Blogging Day

PH: the other High Blood Pressure
Parts of today's info is from our "Patients Survival Guide"

Pulmonary hypertension (PH) means high blood pressure inside the lungs (pulmonary means concerning or involving the lungs). The blood pressure measured by a cuff on your arm is called the "systemic" blood pressure, and reflects the pressure between the left side of your heart and the rest of your body (excluding your lungs). Pulmonary hypertension (PH), on the other hand, is more difficult to diagnose and more challenging to treat.

The circulation of blood in your lungs encounters only a fifth of the resistance that circulating blood encounters elsewhere in your body. The vessels in your lungs are very sensitive to increases in pressure: they don't like it, and they respond in complex ways. This response initiates the PH process. PH affects your heart as well as your lungs, but unless your PH is caused by another disease, it appears to start in your lungs. The walls of the blood vessels that supply the lungs get thicker and often constrict. This shrinks (or blocks off) the opening inside them and makes them unable to carry as much blood. It's kind of like what happens when you attach a nozzle to a garden hose: instead of water just sliding our of the hose and falling to the ground, it quirts out with such force that is can knock the leaves off a plant 6 feet away. It can do damage.

As you tighten the nozzle, you might notice the hose itself getting stiffer because of back pressure. This is like what happens when blood can't get through your lungs - the pressure backs up all the way to your heart, which pumps harder and harder to try to push the blood through. Eventually, your heart just can't keep up, and there is less blood circulating through your lungs to pick up oxygen. You become tired, dizzy and short of breath.

Your Over Worked Heart

The heart is divided into four pumping chambers. It is the right side of a PH patients heart that usually has problems. The bottom chamber, called the right ventricle (RV), pumps de-oxygenated blood through the pulmonary valve and into the pulmonary artery, which divides and carries blood to both lungs. If you have PH, your right ventricle has to work so hard to force blood through blocked lung vessels that it bulks up. The RV is not designed to do such hard work; normally the pressure inside it is only 20 to 25 percent of that in the left ventricle.

When pressures remain too high for too long, the RV becomes so stretched out that it cannot contract effectively. This is called congestive right-heart failure or cor pulmonale. ("Failure" does not mean that the heart has stopped, it means that it can't pump our all the blood in it into the lungs.) When your RV fails, there is a backup of pressure into veins throughout your body, and you swell with fluid, especially in your legs, liver, abdomen, and the spaces in your chest surrounding your lungs. In PAH, your right atrium also tends to get bigger, because of back pressure from the RV.

There is good news: when the pressures in your lungs lessen (because of medications or a transplantation of a new lung or both lungs), your heart tends to return back to its normal size. Perhaps after treatment, you may no longer have congestive heart failure. But if your heart has been stressed so long that scar tissue has formed in its structure, it is still damaged.

There is so much information on PH that one person alone can not tell it all please visit our site at and learn as much as you can, you can also visit some of the my friends' site under "My Unique Phriends", (right hand side of the page) they to share alot of on PH as well. there are so many people are suffering with this disease you wouldn't imagine. From infants to adults. Please pray many are in need of a cure or touch from God.

My Personal note:

I have PH caused by the blood clots that went from my heart to my lungs. I make blood clots due to lupus anticoagulant (an autoimmune deficiency) I have, so for now my treatment is to take blood thinners called Warfarin daily to prevent more clots in my lungs. I also have to take water pills (lasix) to help with fluid build up. I am not on medications to treat PH because they still have to rule out if I have a heart problem or just a lung problem or both. PH is VERY hard to diagnose, I first learned about PH in March 08' when I was told I had it.

The Drs. have to keep testing me so that they can figure out what which medications are right for me. Not every medicine out there for PH is for every one - certain medicine are for certain things. But once they diagnosed you with PH, you need to find a PH specialist who deals with PH. At our web site you can find a specialist in your area by going to the section that says "Find a Doctor". Both my heart dr. and PH dr. are working hand in hand to get the proper treatment for me.

November 16, 2008

Prayer Request for Mason

Mason really needs our help - I have gotten permission to post the original and updates for you by Colleen who is in contact with Mason's Mom. None of what you read has been edited, it is copied word for word on our PH site. Won't you please help us pray for him, thank you in advance for you prayers.

Lastest Update on Mason - As Reported from Colleen
First of all, since I'm tired of saying Mason's mom, I will call her by her first name. Janet called me a bit ago to say that there was no major change with Mason since yesterday. His o2 sats had dropped a bit at one point, so they had to increase the o2. Mason is still opening his eyes a bit, he also sticks out his tongue, and he's moving his arms. Janet has had to lay on Mason's arms because she just knows he'll rip out the ventilator tube if he gets a hold of it. I think that is the biggest reason why he is still sedated!!

Mason's doctors have said that Mason had internal bleeding in his lungs, which is now stopped. The only conclusion they have come up with as to why this happened is that Mason had a very bad reaction to the photo treatment on Monday and Tuesday. They do not know which part of the treatment caused this reaction, but they are working to figure that out. However, Mason will not ever have the photo again.

Mason's doctor is optimistic that Mason will pull through this, but it's going to take a very long time because Mason's lungs were damaged. Also, Janet said that Mason's doctor is willing to go to bat for Mason in regards to asking for a second transplant. Apparently Kaiser and UCLA work together now on transplants. This is not a guarantee that they will do one, and Mason isn't even close to being ready for one yet. However, it's an option!! Janet will call me again tomorrow with an update, unless something else happens today.

Original Post - Mason has been MIA for a couple days, so I called his mom again tonight to see how he is. He's not good. He is in Kaiser LA ICU again, intubated and sedated. His mom said the docs do not understand what happened. They said he wasn't in rejection. They also said they didn't think he was going to make it overnight (this was Thurs night). Today (Friday), Mason has shown some signs of improvement, but still has an incredibly long road to go. His entire family is in LA right now, and they are all really shook up. Please pray for Mason!! Or have good thoughts for him if you aren't the praying type!! He really needs them right now!! I will keep you updated when I get news!!

Saturday's Update - Mason's mom left a message while I was out. She said Mason needed 2L of blood very early this morning. They don't know why or where he was bleeding. His vitals are not great, but better than when he went into the hospital. They tried to increase the ventilator, but his lungs didn't tolerate it at all, so they had to put it back on a lower setting. So basically he is about the same as yesterday.As for why this all one knows yet. They do not know if this was a reaction from the photothesis procedure he had on Mon and Tues (to combat the chronic rejection), or if something already was going on before he had it done. They keep doing tests on him to figure this all out. They aren't sure why he was bleeding either, and they were supposed to see if had stopped around 9pm EST. I did call his mom back when I got home, and left a message telling her how much we all are praying for Mason, and we love him and are hoping he pulls through this! She is going to call me back either tonight or tomorrow morning.

Mason's story and picture were included in the "Phriends' Stories" booklets that were passed out at the 3rd Annual Phenomenal Hope for a Cure fundraiser.

Here is his story:

My journey began late in 2005. I was 17, working and going to school full time. I started to notice shortness of breath in the mornings. I thought I was just getting out of shape and didn’t worry too much about it. After a few weeks one morning I was pushing out quads, (I worked at a off-road shop) and became very short of breath and passed out. I was rushed to the ER. They told me I had pneumonia and sent me home on antibiotics. I took about a week off work and rested but I didn’t really feel any better. I went to a few different doctors, but they didn’t know what to do or what I had. One thought it was asthma and the others weren’t sure. One doctor scheduled an echo and x-ray. But I couldn’t wait any longer. So I went to a hospital in CA. It took about a week of tests and evaluations to get a diagnosis of PPH. I was sent to a PH specialist in Los Angeles for a right heart cath. The doctors discovered that my PH was severe and that I needed start on Flolan immediately. I was told that it usually works well and quickly. I didn’t mind mixing or any of the stuff that goes with Flolan. The problem was I had PVOD (pulmonary veno occulsive disease). PVOD is hard to treat. It clogs the veins leading from your lungs to your heart, and causes your pulmonary arterial pressure to rise just like any form of PH. The Flolan lowered my PAP but made my PVOD worse. By February I was bed-bound. If I had to walk more than 100 feet I had to use a wheelchair. I was listed for transplant a few months later and waited 11 months for my transplant. After the transplant I had a great recovery and was a full time walker in the first month. I had 5 months of greatness, no problems at all. Then I got hit with rejection, fungal infection, flu and pneumonia. That has slowed me down a bit and there are still some bumps. But I’m still glad I got it. If I get a few more quality years, I’ll be happy.

Sunday's Update - Mason is still about the same, no more blood tranfusions, which is a good thing. Still very sedated, can't really get him off the ventilator yet, his lungs don't like it. They have him on puffs of air right now, b/c his lungs won't take anything more. They started him on a heavy dose of steroids today since they are not sure if his lungs have an inflammation, or if this is still chronic rejection. His doctor will be in tomorrow morning, and Mason's mom has a lot of questions, so she'll try to call me earlier if she can.

Mason's mom wants to thank you all for the prayers and thoughts from everyone here. I tell her every time I talk to her that we are all rooting for her son!

What does your name mean?

In 1984 when I became a christian someone gave me a book mark with my name on it. I have kept it to this day. DEBBIE "The Seeker" Psalm 34:10 ....but those who seek the Lord lack no good thing. Proverbs 22:1 A good name is more desirable than great riches....

I have never wondered about my name because I am who I am always seeking to know things, always wanting to find the answer to many questions. I am the kind of person who always tries find different ways of doing things. I am always seeking to know what more the Lord has for me. Or should I say what more can I do for Him.

I am never without the things that I need: food, clothing, shelter, medicines, a car, gas for the car, rides, friends and money even if it is a small amount. The extra stuff is like great riches to me, which I really do not need them, I lack nothing. God is my provider of all things I need.

Isaiah 41:10, says - Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand. Is a scripture that I live by, it goes hand in hand with the fact I lack nothing He will always provide.

Today is Sunday a Church day, but since I am still on restriction until Tuesday, my home is church, God is always here. I miss my church family very much but my health is more important right now. God knows my heart. I have spent much of my day in prayer - that are so many in need of our prayers, if I can't go to church I will wait upon the Lord.

November 15, 2008

Pray for one another

Matthew 18:18-20 “I tell you the truth, whatever you bind on earth will be bound in heaven, and whatever you loose on earth will be loosed in heaven. “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.”

We are told in scripture that we are to pray for one another - how many do you know that are in need of prayer? We are to pray without ceasing - please pray for the people you know who are in need God hears our prayers.

Many of our friends are in need of prayer, their health diminishing.

This disease pulmonary hypertension (PH) as well as many others without a cure, special medicines or a touch from the Masters' Hand just plain pass away.

Lord we are in dire need of you touching a young man (Mason) laying in ICU dying, he needs a touch from you. Lord please breathe the breath of life into him right now and make him well again. There is a young woman (Shirley) who just had a double lung and heart transplant that is in need of your help. She is recovering but still needs your touch. Lord thank you for hearing our prayers.

There are children at birth, put on IV's for life because of this disease. It is bad enough that the adults have to deal with this, but the children, Lord please touch the little children, help them to breath easier, restore their little lives so they don't have to live with medicines and/or oxygen 24/7. Thank you for touching their little lives.

This particular disease takes lives of children and adults, it has no respect for any one's life. Please help us pray that a cure or better treatments can come our way so that people can live and not die. In one week alone PH has taken 10 lives that we personally know.

Please go to our web site if you haven't already and learn more about this disease. Thank you for praying with me and others, some day there will be a cure. Thank you Lord for all that you are doing in the lives of our sick.

November 14, 2008

Between a Rock & a Hard Place

Psalm 56:13 - For you have delivered me from death and my feet from stumbling, that I may walk before God in the light of life.

This scripture is true for me, I have been pronounced dead 4x's, I've been brought back. Oct '07 I probably should have died yet I am still here. I believe God is using me to tells others my story. He has delivered me from death so I can live for Him.

I have left you hanging since Tuesday and I am sorry - I awoke on Wednesday via the phone ringing - I picked it up but it kept ringing then it dawned on me I have to press talk, funny how these phones work. Anyway, I told the person I did not feel well and could not come in. Not a problem - went back to bed - I was in the bathroom more than not. Yesterday I mostly slept. I am up today with a headache but I am up. My girlfriend's beep on the computer woke me to tell me I left her hanging - so here is the rest of the story from Tuesday.

I like my new heart doctor, Dr K he is very thorough and he works hand in hand with Dr P my PH doc. He asked questions and so did I.

Apparently I have a few things going on not in my favor. PFO's (Patent Foreman Ovule) or hole in the heart in adults can only be fixed or repaired if it is measured to be beyond a certain cm size and/or I had to have a documented stroke.

1. The Echo that was done in March showed the hole to be open 24/7 small at rest and very large when moving, they didn't measure it in cm's. So now Dr K has to actually measure it to see if I qualify for the repair. He is also contacting my Neurologist who dx'd the TIA's (mini strokes) to see if the tests they did, actually has it written down what caused the TIA's if it was the PFO that could qualify me for the repair.

2. The only thing that came back abnormal on the blood tests was the Lupus anticoagulant - it was extremely high, suggesting blood clots daily - will be on Warfarin for life (a blood thinner) - based on 4 different positive readings. The 10 vials taken last week Thursday showed I was normal in vitamins, minerals, anemia and whatever else was tested.

3. Dr K put me in class VI for PH per symptoms. Class IV is the worse, which means severe - one can't do much without having problems. Now Dr K has to go in and find out: is it my heart that is causing the problem or my lungs. He said he agrees I don't have asthma - but believes something is wrong when my 02 goes up when I do anything when it should go down. Just doing a few simple things in his office I just about passed out 2 times. Okay so I am backwards.

4. My TEE (trasesophageal echocardiogram) is scheduled for Dec. 5th, after the test Dr K will give me the results then schedule an exercise heart catherization to see what is going on. He thinks I have exercise induced PH (pulmonary hypertension) but can't prove it based on written reports so he will look himself.

5. No meds can be started for PH until they know what they are dealing with - heart disease runs in my family. So that is why the concern. He did say that I did have PE's in Oct '07 which is what triggered all this. And so I wait. Thanks for reading and the support.

November 11, 2008

A brief Note

I am on my way for my Cardio Surgeon's appt. I should get my test results from Thursday as well. I will post more later or tomorrow depending on how I feel. Talk to you soon, Blessings to all who read my blogs.

Veteran's Day

"The Lord remembers us and will Bless us....." Psalm 115:12

As the Lord remembers us we should pay tribute to all who have served in the armies and wars in years past. Those who gave their lives for us on the battle fields we say thanks. Young and old they should always be remembered - we should to grateful for the ways they provided protection for us. Thank you for giving your lives for us. Thank you for serving our country. For the many who came back - injured they need our prayers for healing, comfort and safety from the traumatic battle you now face, Lord be with them.

For all those for are currently serving we shall lift them up in prayer so that the battle can be won. As Aaron and Hur lifted up Moses arms so they too could win the fight, we shall hold up our troops in prayer. Let us gather together in one accord and pray with our Nation.

November 10, 2008

A New Day

I have been praying about different things I could do on my blog site and it came to me to start each one with a scripture of the day.

Today is from Job 37:5-6 - "God’s voice thunders in marvelous ways; he does great things beyond our understanding. He says to the snow, ‘Fall on the earth,’ and to the rain shower, ‘Be a mighty downpour.’”

Did you ever wonder about how all things are made? Where they came from? So many things are beyond my understanding. As for diseases in this world - too many to count - yet we still get them - some of us pass away from them - some people lose the ability to speak, see, walk, yet they keep going. You are probably wondering why I am writing this - it is simple I am asking questions to God as to why!

He sent His only begotten Son to die on the Cross so that we may live, He took the beating so we wouldn't have to, He bore our sins and carried our diseases so we can live. He did all these awesome things for us - and what did we do to deserve them - nothing!

So as I write this today I am pondering "why"! I am ever so grateful for what the Lord has done for me that I need not ask why, I need to be thankful that today is another day I can live.

No where in the Bible does it say we will be without sickness or disease, no one is without, except Jesus. What it does say in scripture that when we get to heaven He shall "wipe away every tear from their eyes; and there shall no longer be any death; there shall no longer be any mourning, or crying, or pain; the first things have passed away." Rev. 21:4.

This disease PH and many others without a cure or a healing people simple pass away. Yes, we have medications to take which I believe is provided for us as a way of Jesus helping us to get to another day. He provides the Drs., Nurses, treatments for our own good - we need to keep taking a day at a time, one step in front of the other. Like the phrase in Footsteps in the sand, we only see one set of footsteps because Jesus is caring us, our burdens can be light if we give them to Him.

If we can't physically walk - He provides wheelchairs, scooters, walkers, crutches and canes. If we can't speak - He provides typewriters, computers, letters, pens and paper. If we can't see - He provides seeing eye dogs, people to help, sign language. If we have trouble breathing - He provides air in the form of oxygen. So if only for only a day, today let us be thankful for what we have and not what we don't.

We have one life to live so why not live it thankfully?

November 08, 2008

It's wash day

Today I was able to get up at 8am. Said my prayers and thanked God for another day. No more antibiotics so I hope to stay awake all day.

I went to Wal-mart to pick up some nose stuff and came home. Was gone only 1 hr.

I had 2 loads of clothes to do today, it is a blessing to have our laundry room just a few doors from mine. It takes everything I got in me to do the laundry, 1/2 hr to wash, go back put it in the dryer, the up & down motion gets me extremely dizzy. A half hr later go back and get some of the clothes. I hang up my shirts and slacks right away so I don't have to iron. Where ever I can save my energy I do. Half hr later I go back again to get the rest of the clothes.

Today has been computer catch up day - been trying for 3 months to figure out why I couldn't get into PH's chat room, after 3 hrs of enabling this, that and everything in between I am now able to get into chat. It makes me feel like I just accomplished something when it finally works. I always ask for God's help but sometimes it doesn't go as fast as I'd like.

Today is my "adoptive" spiritual mom's birthday - though she is in Hawaii celebrating their 50th anniversary I called her and left a message so she didn't think I forgot. She gets back Sunday afternoon I believe. She was born the same year as my real mom 1936 - but on the day my mom passed away 11/8. My mom passed away on this day 11/8, 23yrs ago. You know as I think of Kathy's birthday, I still think of my mom with tears of joy, because she is in heaven and someday I'll be there with her, my brother and grandma & grandpa. Kathy has been in my life now for just about 3 yrs. She has survived stage 4 cancer and is going strong like she never had it. I really believe that God puts certain people in our lives for different reasons.

It almost feels like I am going down memory lane. I think I am done on the computer for awhile - I'll go see if anything is on TV. Maybe later I will go to chat with my Phers.

November 07, 2008

Today and Yesterday

Today it is now 2:50pm and I just woke up from a very long nap. People do not realize how even the little things we do wipe us out. I had my usual blood work done for my Protime/INR done to check my warfarin (blood thinner) levels I am okay at 2.4. I took my last antibiotic this morning and I just figured out that is also making me very tired. I slept from 11am until now 2:50pm.

Yesterday: I am done with physical therapy, nothing more can be done for my knee, mainly because I can not exercise on land because of my lungs. I am very happy with the range of motion 3 degrees to 103 degrees of bend. The best I have ever had in 15 yrs. God has helped me do this with the dr. and therapist.

Pulmonary appointment: It didn't go as I planned - I thought that since my knee is doing better I could do the 6mw (6 minute walk). Within 2 mins I had to stop, I almost passed out - no air - I was breathing so fast they said I was hyperventilating. I had to stop the walk at 4-1/2mins I was done. Couldn't breath, dizzy etc... It took about 1/2 hr to breath right. My walk was only 150 meters but up from 5 months ago which was 120 meter - then I did my PFT (pulmonary function test). You have to breath in and out in a tube to a machine. That came back abnormal.

My dr being the concerned doc he is said, "I don't think we are only dealing with PH". He mentioned my walk is not normal (no kidding, I knew that). The PFT showed I wasn't getting enough air out of my lungs which he says suggests a lung problem due to Lupus or another autoimmune disease. What bothered him the most he said, was the 02 or oxygen usually drops when walking or exercising - mine went up to normal, when it started out low 90's.

I told him if he is looking for Lupus the test ANA never comes back positive - he said that doesn't matter something is wrong. I had 10 vials of blood drawn looking for anemia, Lupus, Crest and other stuff which I couldn't remember what he said, he is concerned because of the recent bout with pericarditis.
He is sending these results to my Cardio Surgeon so he can order some more tests like a TEE (transesophageal echocardiography), stress echo (exercise echo), RHC (right heart catherization) and whatever else he thinks I need before starting me on PH meds. My last echo was 43, the RHC was 30 so repeats are necessary.

On Tuesday the 11th I see the heart dr and get my blood test results as well as finding out what, when, where, and how the next tests will be done.

As many of my friends know I have been uniquely made. I was never normal or fit in a box. The test results just proved it. Time to go eat lunch I'm getting hungry.

November 06, 2008

2 appointments today

I had two appointments today and I am exhausted - I just got home from my 4pm appt. I am going to eat, take my meds and go to bed. I have a 9am INR appt. I am just done in. I will write in the morning.

November 05, 2008

Where did the day go?

Where did the day go? I slept 11 hrs last night. I was sleeping by I think 8ish pm. I awoke at 7:15am. It is now 6pm.

I did my Bible reading said my prayers - and felt good so I went food shopping - came home put it away and that was it. I was done, I took another 2 hr nap and when I awoke I just didn't have any energy.

Tomorrow is my appt. with my PH specialist - have to have a pulmonary function test, 6 minute walk, then talk to the Dr. about what has been going on or should I say not going on. Ever since I got sick this last time around I am completely zapped of all energy.

I have my last appt. with Craig my physical therapist at 9am tomorrow for my knee, I would love to cancel it but I have done so 2 times in the last 2 weeks so I have to go. My knee is doing quiet will all things considered. I believe that the 2nd surgery was a blessing from God because my knee has never bent past 90 degrees for 15 yrs. it now bends 103 degrees enough to walk up and down stairs. I can walk down but going up due to my PH it is extremely hard - I have no air or breath to do it. I do take the stairs down as often as I can to keep my knee moving - I rely on the elevator to get back up.

That is it for now - I'll be back tomorrow after 6pm because of my 4 pm appt. Thanks for reading.

November 04, 2008

Okay I'm up

There are days in the life of us with PH, where we just have a hard time getting up and functioning and today was an example of one of those days.

I am up, ready to go but want to go back to sleep. Eight hours of sleep for me is just not enough - especially when you don't feel good.

I am off to see my ENT specialist to have my stroboscope done so I can give it to my Neurologist before surgery. I'll be back -
It's 6:30pm and I have been trying to get back to my journaling today but, I have been quite tired since my drs. appt. I came home took 2 phone calls then left to vote. I came home and fell asleep for an hr. Walked to Walgreen's, came home and I am done in.

I will sleep in tomorrow and finish writing - I have already called church to tell them I would not be coming in to volunteer tomorrow and my pastor understood. He said, "my health is more important right now, but please know how much you are needed." That makes one feel good when they say that. Thanks pastor!

November 03, 2008

Back from my primary care Dr.

I am back from my pcp dr. apparently I don't have myocarditis as I was told by the ER dr. but actually have pericarditis (inflammation of the tissues surrounding the heart muscle or something like that).

Pericarditis is what my dr said is wrong with me. She believes I got it from the sinus infection (which I still have) - will be treating me 1 more week of antibiotics - Z pack is what I call it. Still running 99.9 fever, pain in the heart, dizzy, SOB and an elevated CK enzyme. She said this certain CK enzyme is suppose to be 1.0 I'm at 5.24. Just a tad high - so I have to lay low. Yeah right - yes she knows about all my appts. I almost forgot I lost 5lbs in 6 weeks.

Stroboscope tomorrow - PH dr on Thursday. Next Tues. meeting with Heart Surgeon.

It's Monday and a new day

I am awake and dressed - I have a doctors appt. soon to see if my CK-MB is or isn't elevated. I still have the pain in my heart area which could mean is still have that Myocarditis - inflammation of the heart muscle. I am praying that the pain is just a side effect of the medications I was taking for it.

I am needing to get ready to go - so I will post later when I know more.

I am praying my girl friend that move to Israel gets her computer hooked up soon, I know she misses talking to us via email, she also have a way to call me via web cam. I don't have that I'm thankful just for the computer which someone gave to me little over a year ago more like almost 2yrs ago. Anyway it was been a blessing to have.

It just occurred to me why my son, Daniel wrote yesterday it wasn't to talk to me per say but to see if I talk to my daughter Tami who hasn't spoke to us in 14yrs. He is trying to find her as I am but the information I got on her 4 yrs ago was she was married with child to a Daniel, the search engine doesn't say that, if it is my daughter she is with a Matthew. All I can do at this point is pray and maybe God will bring her back to us. Perhaps Tami's friend didn't tell me the truth 4 yrs ago she I wouldn't find her - who knows except God.

Lord this is so hard on us not knowing where Tami is please help us find her and unite our families together again, this I pray in Jesus' name.

Got to go - I can't keep crying it raises the blood pressure and I have a drs. appt. I'll be back.

November 02, 2008

It's the afternoon -

And I am still in my PJ's, I might as well stay in them, it's almost time to go back to sleep -
And I just got off the computer chatting with my son, that instant messaging. It was so nice to hear from him. It has been months since he moved to WI. Haven't seen him or my grandchildren since April. My 2 grand kids from my son are Jewlia 6yrs old and Jr. 3yrs old. They are so precious.
Every body's life styles now a days are so busy. It was just so nice to hear that they are doing good. He works at a restaurant doing many things. Like cooking, delivering and bartending.

Fall behind

Today I tried to get up to go to Church, that is what I used to do every Sunday go to Church. Since last October 07' getting to go anywhere is extremely hard to go. Today I just couldn't get up, kept falling back to sleep, as I journal today I am still in my PJ's.

Daylight savings time really mess's me up for about two weeks, I don't know about anyone else but me it is the pits, why can't time just stay put? Spring ahead and fall behind just is dumb to me.

Tomorrow I have to get up early the van will pick me up at 9am for my Drs. appt. I need to have my blood work re-checked to see if my CK-MB is still elevated, I pray it isn't I don't want any more antibiotics. They make me sicker than I already am.

November 01, 2008

A different kind of day -

Today seems to be a different kind of day. I didn't wake up until 9:30am which is rare for me - I woke up feeling strange. Very sick kind of feeling again. My heart is racing, in the restroom more than I'd like to be - I am hoping it's from the antibiotics and not another bug.

As I am typing this I keep wishing I didn't have to take so many meds and I am not on any for PH yet. I am on 12 different meds now - and wish I didn't need any of them. Sometimes I wonder if the meds don't make us sicker than we already are. I guess I will know when I get to heaven if it will matter then.

I feel like I am on a roller coaster ride and just can't get off - and I don't ride them. Maybe some day we all will be well again. That is my prayer.