Somehow, it seems appropriate to start my diary today, Christmas Day. A day that gave birth to our Saviour. A day that brings us together and reminds us to be thankful, forgiving and considerate to each other.

I was diagnosed with PPH on November 30th, 2000. I had been short of breath and on inhalers for what my doctor thought was broncitis for several months. I went to a Pulmonary Doctor in October and then called him on the 27th to say that I felt terrible, and had a blood pressure of 175/140 at the grocery store, the day before....of course since my normal BP is 100/60, I assumed the machine was broken. He requested that I come in right away, and so I did. After having an EKG, and then being sent for BP medicine at the pharmacy, I was given an echo cardiogram and sent upstairs to the Cardiologist. I was then told that my pressure was quite high in my pulmonary artery and that the right side of my heart was enlarged. I was then admitted for a possible blood clot in my lung.

Scary thought. But not so scary as the truth-after a week of tests, it was clear that I had PPH. I am a 43 year old, single mother. Raising a bright young girl. I love to work and enjoy my job as an Account Executive for a major telecommunications company. I am very independant and have always preferred to do things for myself. Becoming a single parent, taught me that, indeed, it does take a village to raise a child..lol. And this disease is teaching me to accept help, even to ask for help, when I need it. I always want to be sure that I need it first, and to that end, I struggled for 4 hours trying to put out the trash before I finally admitted to myself that I needed to call someone to help me. Sometimes I need to be a better listener!

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I have been on Cardizem CD (CCB) for a little over a month now. This has had no dramatic response. Yesterday, I met with a PPH specialist in Chicago to determine the best course of action for my illness.

The Doctor felt that the best option for me is to go on Flolan. Having read alot about Flolan, I was hesitant to take this option. It seems like it is hard to manage and has several undesired drawbacks.

She also told me of other options, including trial programs. The bottom line for me, is that I want to be here to raise my daughter. I feel that going on a trial program where I might be getting a placebo is not an option that I want to consider. I am late stage 3 and my fight to live needs to start now. Once the trial programs are off the list for me, it leaves me with two options: Flolan and heart or lung transplant. I am overweight and can not go on a list for transplant until I lose weight. I have lost 20 pounds since I was diagnosed a month ago. I will continue to work on this while I start on Flolan.

The Doctor is sending off for Insurance approval and then I will transition to Flolan. I know that God knows what is best for me. I am trusting in him and praying for a safe and effective response from Flolan.

I have felt God's hand in my illness from the very start. When I was hospitalized last month and they were trying to determine what was wrong with me, there was a Tech who came to give me several tests. A doppler of my legs, Xray, and finally an echocardiogram. Each time he came he would joke with me that the Doctor was just trying to spend all my money...we would tease back and forth and talk about our kids and how to keep them on the straight and narrow.

When he came to do the Echo, when he was looking at the left side of my heart he again joked that the Doctors were trying to spend all my money. Then he came to the right side of my heart, and he paused. He told me that he was soo sorry and that he did not know how I was lying on the table, my PA pressure was soo high and the right side of my heart so swollen. He then told me this story:

He was working at a hospital in Topeka and they were very busy that day. There was noone to go up and bring a patient down for her tests, and so he had gone up to get her. As they came down in the elevator, the woman was accompanied by her husband and two sons. She took a ring from her finger and gave it to one of her sons and said that she loved him very much and for him to always remember her. She took off another ring and gave it to her other son saying the same thing. She then turned to her husband and said I have nothing else to give you but all the love in my heart for you.

The Tech was surprised by her actions, as the test was routine. She died on the table that day. And what he wanted to tell me was, when it is your time-it is your time. And when it is not your time-it is not your time.

He looked me in the eye and said 'It is not your time-fight this thing with all your heart.'

God touchs us every day...and when I think back on the story he gave me, it makes me fight harder to beat this thing. And it makes me feel comfort because I believe that God was telling me that everything will be okay.

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Sometimes it feels like I work 8 hours a day on my medical care. Yesterday, I applied for Social Security Benefits. They told me that Medicare doesn't kick in for 29 months. And that once covered, prescription medication is not covered. As I am about to start on Flolan, and the cost is high-I wondered what will I do to pay for the medicine?

After several calls today to my current medical care provider, work and finally ACCESS, I got the answer that I needed to hear....ACCESS says that Flolan is not a prescription, it is a therapy and therefore covered by Medicare.

I am glad that God is teaching me patience....I didn't even worry this time, I just knew that it would come out ok.

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CIGNA finally approved my Doctor's request to start me on Flolan. I am scheduled for Feb. 18th to be admitted in Chicago and get hooked up.

The waiting is hard, I have been to the ER and hospitalized for several days for complications. I hope that with the flolan, this will settle down, and that I will have more energy and less SOB.

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The road to Chicago to start on Flolan has been an interesting passage for me. I have gone from fear of the medication to pure joy that I feel soo much better. I started on flolan the begining of this week and already see many changes to the way that I was feeling. My shortness of breath has improved, I am able to talk, without sounding breathless and I am able to walk a bit farther then I could before.

It will take some getting used to and of course there are alot of concerns with managing the medicine. But overall, I am pleased and anxious to see an improvement in my quality of life. God has covered me with an umbrella that is shielding me from harm. I am so thankful for his love.

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I attended the PPH support group meeting in Kansas City this past weekend, and it was great to see others and how they are living with Flolan. There were 2 ladies who have been on Flolan since 1993 that were there, and I was encouraged, in fact one of them mentioned that she rides her bike some.

While being tied down to the flolan pump may seem like it would hold me back, I am finding that it actually frees me to be able to get out more then I could before flolan. The visits to the ER and even the Doctors have gone down, and mixing is getting to be more of a habit. I have still had some trouble with fluid retention and so the Doctor changed my dose of Lasix. I lost another 8 pounds the first day. We will see what tomorrow brings...=)

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There needs to be a time to grieve. A time to count the losses from this illness. A time to reflect on my former life.

In my job, I worked 50 hours a week, driven to succeed, I lived for the pat on the back of a job well done. I was always willing to help my coworkers with computer programs, downloads, and proposals. I was a valued employee and having worked at the same office for years, I had alot of friends at work. I had also developed friendships with several customers that I worked with.

I was in sales and each year we were given a quota and a strech goal that would allow us a trip on the company. I only missed the trip once, the year I was pregnant. I loved my job.

I have been on permanant disability since Dec 2000. I have not filled this void. The friends call less and less; and the void seems bigger. I miss the feelings of accomplishment. I miss feeling valued for the work I do. I miss knowing the answers for my coworkers problems, and sharing the solutions.

And then there is my daughter. As a single parent, I want to give her the sun and the moon! I realized today, as we got her bike out, that I haven't the energy to help her graduate from her training wheels. I can't take her swimming and be the one to hold her back while she learns to float. It is the littlest things that bring me to tears.

And while I grieve for the things gone by....I remember that God chose me. God CHOSE ME! And I will fight this fight. I will find new goals. I will raise my daughter and be by her side, as long as God lets me. And as the old things of this earth fade away, God will give me new challenges, new reasons to live. And I will be thankful...because God chose me.

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A good attitude. Keep a good attitude. Don't let your friends and family see your pain, and suffering. Be upbeat, be strong....be misunderstood.

I have a friend, a very dear friend...and she called me tonight asking if I can take her kids 3 days a week, for the next month. I have never let her know what my days are like. I think she must believe that it is like a long vacation. I told her that I would be happy to help out, but that I can't guarantee that I would be up to it. She sees that I plan fun things for the future, like a trip with my daughter and some friends to Disney World. And she asks well what would I do if I got sick then?

I think we all know....I would have to do whatever it took to take care of my health. She doesn't see me mixing my medicines each day, unable to walk around the block, having to call my Mom some nights to come over and cook dinner because-I just can't do it. It hurts that she thinks that I am not a good friend to her.

Am I wrong to hide the bad days?

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It has been a while since I have posted. I guess I have a little catching up to do! In June, my ex-husband came for a visit and brought his girlfriend. They stayed with his sister and spent most of their time here with my daughter and I. I think that he had not really absorbed the seriousness of my illness until he saw me. My pump, my inability to do the things I used to.

We had a long talk about care of our daughter if I should die. Lucy is here with me all the time. My ex lives in California and has some stability issues. I have drawn up papers of my wishes and I told him that I thought it best that Lucy be raised by my brother and his wife. It was a good talk, and to my surprise; he agreed with me.

I feel good that I have done the things to prepare for death. My motto is prepare for the worst and hope for the best. I hope that I can rewrite my will many times over, before I go. God willing.

In July, my best friend Elaine and her two teenage kids joined Lucy and I on a trip to Florida. I am so blessed that they could go with us, as I could not have done it without them. From the very first day, I needed alot of help!

The flight was long, and left me winded. When we got to the hotel...finally...at 4am...we found that they didn't have a refrigerator for my medication or a rollaway for one of the kids. I had called numerous times to arrange this and yet it went undone. There were daily reminders that things don't always go well on trips...but all in all, we had a great time.

I am so pleased that I could give this memory to my daughter. Going to Disney World and spending time with each other. But most of all..the beach. She loved the ocean. We swam at daytona beach; I guess we got there a month or so before all the shark attacks. She got to boogey board and play in the waves, and she just loved it. It was such a special trip and travelling with PPH just takes extra time and planning.

I had prayed and prayed for God to watch over us on the trip. The biggest blessing he gave us was the weather. It was in the 70's every day. And it rained for a little bit each day. The humidity wasn't bad and I was able to use a handicap cart at the theme parks we went to. We would only stay about 4 hours each place, but with not having to wait in lines, we still got to do most of the things we wanted.

I have just returned from a visit to Chicago to see my PPH specialist again. She only listened to my heart, so no real feedback on how the medication is doing. I am a real lightweight to the medication. I am only on 10 ng. and it has been 6 months. I guess some people leave the hospital already at that level. She said that we need to work on increasing it. I take about a 1/2 a ng every two weeks. But it is all I can do. My face flushes and is red all the time. I have extreme jaw pain and no appetite. I have lost almost 50 pounds since I started became ill. The visits to the hospital are way down. Only twice since I started the flolan. Both times for water retention problems.

The amazing thing is...life goes on. I still need to find what should be my focus now. Raising my daughter, being as healthy as I can be, and finding new friends seems to fill my days. But it does not fulfill me. There is something more....something to feel good about-to replace my joys of working...that is still missing. Awww...but Scarlet, tomorrow is another day!

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It has been quite some time since I have written in my diary.  The daily challenge of living with this illness have started to become second nature to me now.  It has been over two years since I started on the flolan pump and the mixing, and living with the pump are routine.

I have been feeling pretty good.  The main thing for me seems to be, keeping to the things that work.  Don't over exhurt myself....don't walk to far or lift....take a nap when I need it.  As long as I do this I do ok.

My daughter just started 4th grade, and I find that she worries alot about my health and her future.  She is so adult for a 9 year old.  Since it is just the two of us here, she knows all about my medications and when they need to be taken and what to do if there is an emergency.  It would be so sweet if she could just have a childhood, which I feel she has somehow been robbed of.  I see her friends without a care in the world, and wish I could grant that to my little girl too.

On the other hand, like me, she is a survivor.  She is strong and capable.  And she is so compassionate.  The silver lining. 

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Did ya miss me?

Gosh, it has been way too long since I have written in my diary.  My daughter is 12 now and I am 48.  I have been on Flolan for just over 5 years, and I just got my first infection in my catheter.  They had to remove it and put a new one in.  Having the PICC line in my arm for 6 weeks was the pits.  It is a very uncomfortable place for it to be, harder to dress, and my arm and body would rub the site and irritate it.  My new Hickman was just put in at the beginning of the month, and I hope it lasts for 5 years too!!

I am also in the viagra study and find that it improves my walking distance.  I had to lower my dose to 20 mg from 80 mg, as I was having some vision issues.  When I would lay down to sleep at night, I would see circles of light.  That has improved with the lower dose but hasn't completely gone away. 

My flolan is at 16ng now, still a low does, but it works for me.

Lucy is in 6th grade-about to graduate to Jr High.  She is so excited!  She cut her hair yesterday and gave it to Locks of Love.  They took off about 11 inches, so her hair is at her shoulders now.  She looks so different!  She is beautiful either way and now she wants to start growing it, to give to them again.  She is tall for a 6th grader 5'7'' and she brings me great joy!

I am going to make reservations for the Pulmonary Hypertension conference that is in June.  I think it will be fun to meet others who have this illness and see how they handle it.  We can learn alot from each other.

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What will be your legacy?

We have all been given the grim story of how long our lives might be with PH.  And I try to live each day to it's fullest because only God knows when things will change. 

My Mother was my rock.  She was my main support, even from the very day that I was diagnosed.  Sometimes, I think that I leaned on her, even more then God.  Three years ago, today, my Mother passed away.  It was completely out of the blue and a shock to everyone who knew her.

She was the best listener, never judging, and reserved in comments.  Her amazing skill was to ask you questions to help you solve your own problem.  And she never made you feel like your problems were trivial.  On the other hand, she never made your problems seem dramatic either.  Reassuring that you weren't the first to go through it, and you wouldn't be the last.

I learned from her that no matter the number of days, we should live in the moment.  Be of good cheer.  Add something that others can take with them.  Not something material, but something from your heart.  Give more then you take.  Do the right thing-even when it is a hard thing to do. 

Remember that life, on earth, is what we make it.  Trust in your higher power.  If he knows the number of hairs on your head, he also knows the number of days you are meant to be here.

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Spring is just around the corner, but dang it's cold!

Today I was excited to see the sun shining, it looked like a beautiful day outside.  So I hopped in my car, in the garage and headed out to run a couple errands.  When I got in the parking lot at Target....man was it cold outside!  Here I was in my sandals, no jacket....silly girl!

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Love....sigh

Being of sound mind, and not so sound body, I am finding it very frustrating to look for a mate in life.  Where am I to meet Mr. Wonderful?  My day is filled with raising my teenager, little projects, Doctor appointments, household tasks etc.  Not really places to meet a great guy.  Maybe I should just where a sign...."Looking for Love!"  lol.

God has blessed me in so many ways.  First of all, I am still here!  Imagine that!  I stand proud and sassy-PH is just a part of my life-it does not define me, it is NOT the most interesting thing about me. 

I'm still the compasionate, caring, problem solver me.  And the funny, articualate, intelligent blonde that I always was.  (Even if the blonde now comes from a bottle, lol).

Sometimes I feel the illness is the first thing people see...why is your face so red? why do you wear a fanny pack? What is the tubing for?  But, do they see me?  I am right here.

And while I am still here, I want to live a long, full life.  Too see my daughter graduate.  To meet her future husband, to be there when my grandbabies are born.  And to have a companion in life; in love. 

God, if your listening, show me where to meet Mr. HubbaHubba. =)

Thanks!!

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