Lee Ann’s Story
It was the third week that my ankles had been swollen consistently. That Wednesday, May 16, 2012 my mother and husband convinced me that an ER trip was necessary. The 
swelling had come and gone over the past 3 months. As a 41 year old mother of two teenagers, an asthmatic and someone who was overweight, I chalked the swelling up to being heavy. The shortness of breath had been there for years and again, I chalked that up to being heavy. Then I started to notice chest pain with the swelling and shortness of breath. That was when I realized that this might be a little more serious than I thought.
At the ER, the initial thought was that I had had a heart attack. Then blood clots then eventually, the final diagnosis… Pulmonary Hypertension. The language was not new to me or my family as my niece was born two short years ago with PH.
After a whirl of tests and a week-long hospital stay, I was discharged with little knowledge other than what I had learned from my niece. A Cardiac Cath was done and with this I was introduced to my now Pulmonary Doctor whom I love. Now the diagnosis was worse. Pulmonary Hypertension and Pulmonary Veno-Occlusive Disease.
I was told that after 5 years I would have a 50% chance of living without a double lung transplant. My world just stopped. Here we were a family of four making good money and living a great life. I had to quit my job and file for Social Security Disability. I had to deliver the news to my husband and boys that I was going to die.
Here it is four months later; I have had an open lung biopsy and have been taking medications that make my symptoms worse. The money situation is so bad, we’re making 
enough barely struggle by, but not enough to live. I was approved for disability but have a $5000 out of pocket deductible with my husband’s insurance. Not to mention copays and script costs. Disability wont start until December 26, 2012 and Medicare wont start until May 2014.
Stress is bad, I find myself crying all the time. I try to put on a happy face but it is so hard to ask for help, watch my husband come home tired from work and do housework and cook because I cannot.
Everyone keeps saying it will be ok, my question is ok for who? I have not yet learned to deal with my illness and pray that soon I will see that I can survive.
Thank you Caring Voice Coalition for all you do everyday.
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8 Responses to Lee Ann’s Story
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I sympathize with you. I have a $5000 deductible every SIX MONTHS because my disability payments are so “high”. I am on medicaid in Kansas,. My medicare starts December 1, 2013. And i can only get help from service providers, since I’m “not sick enough” to get help anywhere else.
Hi, my name is also LeeAnn. I’m in my 5th year of PAH and many things changed for my family too. It does get better and thank goodness for the CVC. Please find out if your State has any programs that may help you. You would probably qualify for some types of aid. It’s embarassing at first to accept help but it’s the only way that you can get back on your feet. Even if it’s State Health Insurance, Medicaid, anything that is available. Also, places like Pfizer have programs to either pay for or help pay for different meds. Next year (2013) revatio will be generic and new meds come out all the time. This disease causes more stress than you can possibily imagine. As your husband takes over chores that you’ve always done, try not to make comments about how he’s not doing it right. I’ve learned that it really doesn’t matter how it’s done…just that it gets done. It’s hard to accept help and aid, but do it anyway. The way you feel will get better, life will get easier and a lot will change. Just try to relax and go with the flow.
I have been thru the same thing you have. Financially with help from different pharmacy programs…you have to check for each medicine you have…alot of the drug company have the patient assistance programs to help with the high cost of these medicines, and CVC has been a huge help to me this past year. We were about to lose our home before I learned about all the different types of help available. Don’t be ashamed to apply and ask for help. Food stamps and other state programs…your church…the local food bank. We scrapped and made it and haven’t lost our house due to all the help programs I have found. I have also gotten off oxygen due to finding the right combination of medicines. I will be praying for you and your family! My husband had to do everything for a while…but I am now able to help out with washing clothes and unloading the dishwasher…much more than I had been able to do. You have to learn how not to do and take things one day at a time. Doctors don’t always know what the future will bring only God knows that. None of us has an expiration date printed on us anywhere! I am now a long term survivor of 3 years…when at one point they told me 18 months! So take heart that things will get better and leave the worrying to God as much as you can!
I was diagnosed just over 4 years ago, like you I had to quit work, apply for disability and accept the fact that my life, as I once new it, was gone. We in the PH community have amazing drugs available to us today and help from many organiztions such as CVC. The best advice I can give to you is to be 100% compliant with your meds, never skip or miss a dose…honestly by living by this method I feel better today than 4 years ago. No, I still cannot work, have some “crash” days but I am alive and playing with my grandchildren. This illness is also a mental game you have to play with yourself..fight off the bad thoughts and welcome the good thoughts….you have no choice!! and remember, you did NOT cause this disease…
You must meet a work requirement in adtioidn to being disabled to get Social Security Disability (SSD). There is another program called Supplemental Security Disability Income (SSDI) which is based on need. Your household income and resources must be under the Social Security limits. You do not need to have worked and contributed to the Social Security system. When you reach age 62, you will be eligible for a spousal benefit from your husband’s work record if he is eligible for disability or retirement benefits.
Three years ago my husband was diagnosed with Ph I was already out of work on SSD things got really hard for us. We were in the same boat as you are. We have made it through with the help of a good Dr. and Careing Voices. They had given my husband 3 to 5 yrs to live it is now going on 4 and he is doing great with the help of new meds and a good team of Dr.’s and Nurses and of course Careing Voices. You can do this just as we have. My prayers and thoughts are with you.
Hi Leann,
I was also diagnosed with PH about two years ago. My Dr. has sent me to be evaluated for a lung transplant. My husband will probably be losing his job soon b/c the shipyard will be closing. I get down sometimes but my strength and my help is in the Lord and I know that He will not leave me or forsake me and will take care of me and my family.
I will be praying for you LeeAnn that the Lord will strengthen you. Keep your eyes on Him and live your life to the fullest!!! Many blessings to you and your family!!!
I was diagnosed with ipah 3 yrs ago and pushed and pushed myself to work,but now unable to work so i have filed for ss/dis and was just wondering if cvc helps push the ph issues to ss administration or is their just a big long waiting list like an attrny….If anybody would like to share i would appreiciate the knowledge,Thanks!