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 MY NIGHTMARE AND PH
By Merle Reeseman
My husband decided to take an early retirement. After all, we had raised four children, they had flown the coop and we were empty nesters. My father had lived with us for about 5 years but I couldn't take care of him any more so we placed him in a nursing home and I visited often. We were alone and the plan was, we would start doing things together, just the two of us. I am an Associate Broker in real estate so if I wanted to, I could set my schedule according to what plans we might make.
All of a sudden I wasn't feeling well but my father had just died and we did the funeral service here in PA and then brought him back home to MA (a 12 hour drive each way) and had another service for him there for family and what few friends he had left - he was 93 when he died. Then a week later was the 9/11 attack and although I didn't know anyone in NYC, DC or even in that part of PA (about an hour from here) it hit me hard like it did so many of us Americans. My parents instilled something in me about Freedom and being and American and when I am at a parade I still get choked up when the American Flag goes by. I am proud to be an American and I am a proud American. Go USofA!!!
In the months that followed, I was really worn out. I was exhausted, I could barely get myself to work. I had trouble showing houses (steps) and especially farms (inclines and hills). I went to the company picnic and my daughter's friend (who worked for a doctor's office) asked how I was doing and recommended that I go to my PCP as I didn't look well (I think my daughter nudged her to say something). I explained what had been going on the past month and she again stated "go to your doctor"!
I kept getting worse and finally gave in. You know, I'm one of those women who thinks she can handle it all and besides, I was a wife and mother, we had raised 4 children and I had a job. Who has time to be sick. I was a little depressed... maybe. I don't believe in being depressed (the denial stage), so get over it. My PCP ran all kinds of tests. Anything related to the heart or lungs because, of course, I had those symptoms. I was sent to the local hospital and wired up, I was put in a "phone booth", they slimed me, I was poked, I was prodded. You name it, it was done to me. I had a LHC (left heart cath) and that showed that my heart was strong. WRONG....well almost. My daughter begged me to go to a cardiologist. I said, "I will, I will". But there again, who had the time?
My Son-in-law said he would pay for the office visit if I would go just to get his wife, my daughter, "off his back". I finally went. That doctor reviewed all the tests and the only thing I remember he said was "Whoever read this EKG and said nothing was wrong, well...". He had just returned from a session/seminar on this new disease. He told me about Pulmonary Hypertension and said that he wanted me to go to the Cleveland Clinic Foundation and be tested for PAH.
Going to the Cleveland Clinic Foundation is like going to another world. It's a city within a city. It is HUGE and awesome all at the same time. I was slimed again, I was wired up so I looked like Darth Vador from Star Wars and told to pedal on a bike going nowhere, I was put into that "phone booth" again and told to take a deep breath and hold it, hold it, hold it now PUSH... I'm sure you've all been there and done that. I felt like a hamburger in a bun with one machine and another I was told that this will only sting like a bee (I wonder how big that bee is) and they injected me with something that didn't belong in me. I was poked again and prodded. My arms were black and blue; actually, pretty much my whole body was B/B. Then to a mini operating room and the doctor said he was going to put this tube down my nose and take a pinch of my lung. I said no you're going through my mouth, right? He said nuh we're going through your nose so hold onto your stomach. He won that battle. Then the golden rule of all PH tests. The RHC (right heart cauterization). This test determined that the right side of my heart was three times it's normal size. My pressures were through the roof; well, of course, not really but they were way up there. It was confirmed, I had PAH. Made my day, don't cha know. They told me that without treatment, I might have two years to live. Could have fooled me. With treatment, who knows. It is such a rare disease that they don't have too many statistics on how long you have. I'm a fighter so I decided to fight this battle that has been presented to me.
Remember what I said about my husband taking an early retirement?. Our insurance coverage changed and he was put on the COBRA plan. I just figured it was the same ol' same ol'. It wasn't. We were paying over $600. a month and when it came time for them to pay for all those tests; they wouldn't!!! Not being insurance experts, we apparently signed up for the wrong plan.
But Cleveland Clinic (CCF) was great. They wanted to put me on Flolan because they said that's what I needed. They checked with my insurance company and my insurance company wouldn't pay for it because it was an infusion type medication and that insurance company did not pay for infusion medications; so it really didn't matter what plan I was on. They were not going to pay anyway. I was put on trials for new treatments. That didn't work, my body and the new med didn't like each other. I was put on Tracleer for two weeks and there again my body didn't like it. It affected my liver. I was going down hill faster then they thought I would, my 2 years was now set at 2 to 3 months. My nurse said she didn't care who paid for it but I was going to go on Flolan.... By this time, I already owed The Clinic over $49,000. and my local hospital about $12,000. The insurance company did pay for a bout I had with pneumonia but not for a trip to CCF via ambulance which came to just over $1200. This whole process took about a year.
Some friends and family suggested I go to Public Assistance for help. I was struggling to stay alive at that point. I could hardly walk, talk or drive. I was at death's door step just poised to step on a banana peel and the door was starting to open. For my appointment to P.A. I was told to bring
everything: bank statements, life insurance policies, health insurance policies (yeah right), auto insurance, registration, pay stubs, tax returns, etc. You name it, I had it with me. It was not a good day for me. The emotional strain was a little much and I was showing the affects of that strain. One of the questions was to show the car registration (which I had left in my glove box) and I told the case worker that it was in my car and I would go get it. She said not to bother -- I guess I really looked pretty bad because she told me to just rest while she did her thing, I think the paperwork went up to the ceiling. I also had to do this for Social Security and because I looked so bad (make up didn't even help) I was approved for disability. I've been told that it can take up to 2 years to get approved. I was approved in less than 2 months. As far as PA (public assistance), that's another story. They would be willing to help me but there was a catch. My husbands retirement threw off all the numbers. He earned $1200. too much a year for me to qualify and the only way they would help me is if we separated and I moved away from home and became destitute!!!!
We talked it over and decided if I wanted to live, I would have to do just that. So just after Christmas of 2002 I moved away from my husband of over 30 years, moved away from my home of over 27 years, moved into a second floor apartment and became destitute.
I got the Hickman line in the beginning of January 2003. I had to come "home" to be by myself and try to recoup from this ordeal I had just gone through (the hickman). learn how to mix the Flolan and attach myself to the pump. A home nurse come over every day to teach me and my husband and brother and sister-in-law came as well to learn to mix and connect me; you know as back ups for this now "just in case life" I am living. But who was there in the evenings to give me a little hug that I so desperately needed? No one. My whole lifestyle had change. I was alone, I was by myself... Get a grip girl, you are alive so stop feeling sorry for yourself.
Because of the time frame, public assistance/medicaid did not pay for the previous bills owed but they are covering my costs now and the cost of having the Hickman put in. Tom, my husband, is not allowed to help me financially in any way or they will take away my meds and I figure with all the meds I have now, the cost is about $500. a day. We can't afford that.
We are not allowed to live under the same roof, but Tom still comes over almost every day to "visit" except when the Steeler's are playing. I'm a fan but I don't really enjoy watching football and he does. He needs that. Go Steelers!!
This having PAH is not only a physical and emotional strain on me (I am unique just like the rest of us PHers) but I worry so about Tom and how it is affecting him. He is the type of man who took his marriage vows seriously including the one to take care of me in sickness and in health, but he can't or he thinks he can't do that. He wants me home with him and that's where I should be.
I have written to my Congressman who has helped somewhat and also afreed to co-sponsor HR 3005 which is the bill to provide funds for PAH research., I have also written to my Senators and received replies (and have also asked about co-sponsoring S1774 which is the same bill in the Senate). I have copied and written to President Bush who also responded and forwarded my info on to Health and Human Services. They all showed they cared but no one is doing anything. In my letters I give them the ol' one~two and I didn't mince my words. I didn't swear but I let them have
it. They all know my name and my circumstances now.
I know this is the greatest country in the world but I don't believe this land of milk and honey should dictate that loved ones should separate from each other especially when one has a catastrophic disease and is in need of all the love and support they can get. I would like to know what right does the government have to do this. I am a religious person who believes that husbands and wives belong together.
Merle PA PHer
Note re: Merle's story
--Cheryl Switzer
Merle has not been quiet about her situation. She has been the subject of a number of articles published in the press, including a mention in an article about the high cost of drugs to treat PAH in the NY Times.
There are three things everyone can take away from this story:
- Pay attention to the details of your medical coverage. You can
never be over insured;
- The U.S. needs a healthcare system that is fair and covers everyone and
- What happened to Merle and her family could happen to any one of us.
We encourge you to leave your comments.
Comments
Susan Lee
- SC
Wednesday, April 4 2007
Merle,
We know just what you are going thru. We have no insurance. My husband has applied for SSD. Because I have a job he doesn't quailify for medicaide. We are facing what you are living. Is it not bad enough that I am losing the other half of my soul. We have to lose everything so he can have a few years of quality? We have never been on any type of aid. Ever. We have always worked for everything we have. We raised 4 children. It took everything we had. My husband has not been able to work for about 1 1/2 years. He just recentley (2/12/7) filed for disabilty. He kept hoping he would feel better and go back to work. We just found out on 1/29/7 what has been wrong with him. But that is another long story. I cry for you and your husband at what you have to live with and without because it all comes down to money and insurance.
Susan Lee wife, best friend and soulmate to John Lee
D. Mark Rowe
- Rathdrum, ID
Tuesday, February 27 2007
Hi Myriam, I do hope everything work out for you and your husband, I also think our health care sysyem needs much improvment. It seems that once your down they like to keep you there, I am a 43 year old male and I started having symtems when I was 38 it took the doctors almost 8 mo to finaly diaginose my PH, I am now on remodulin (via a hickman), traccler, revatio, coumadin, vrapamil and a inhailer, the cost of these meds alone are enought to bring you down. My wife has taken samll jobs but nothing that has any kind of ins.. so she has gone without for meany years, I do have ssd and medacaid, so I guess I have it better than most. But I worry about my wife, This is not only hard on us (PHers) I know it is hard on our LOVED ONES!! I am doing better than I was when I was first dignosed, Remoudlin has changed my life, but it seem Istill get sick about every 6 mos and that takes about 2 mos or longer to recover, and that stinks!! well I'am starting to ramble so I'll go for now, I just did'nt see any men on the list so I thought I'd speak up, this (PH) is one heck of a thing, and we need to stick together as men and women, husband and wifes, on one should have to be alone (or seprated) in this fight. stay strong
Bernie Jacobson
Monday, November 6 2006
My wife has PH I was reading the story. I think if we all stick together we could get help from the goverment. We should write our goverment get bills to pass to help people on flolan. The companies just charge to much for that drug. Lets all work together.
Bernie
Amy Stamp
Saturday, November 4 2006
I met Merle about 7 months ago after having been told last March that I had PH. I am also on Flolan. The amazing thing about Merle is how supportive she is. Any questions, problems, thoughts,ways to make life easier-she's there. She is also our Cleveland Support Group leader. I admit, there were times, I wanted to quit and give in to the poor me's. But I don't. Merle has taught me how to fight,how to live,and how to channel my anger. I don't know what I would have done without her. I've even learned how to lobby and have been contacting senators in three states and getting complete strangers to sign letters for me. Hopefully things will change and soon! The Merle's of the world deserve only the best from our country!
Patty Farrow
Thursday, November 2 2006
Dear Merle,
I was so moved by your story. I can relate to the PH parts but the humiliating process that you have been through is too much. How in the world did "they" come to the conclusion that leaving your husband (and LIFE) was the right thing to do? I can see the checklist now: Can she take care of herself (nope), should she be on her own now (nope), does she depend on her husband for her very existance (yep) - ok then.....let's make her move out and live all alone. I just can't wrap my mind around this.
My daughter was in a similar situation (although nowhere near this magnitude). She's a single mom, working and expecting another child (another story for another day). She works full time, maintains her own apt. and sometimes the ends don't meet. She applied for assistance and was basically told that she stood a better chance of receiving help if she quit her job and had no income. Then "they" would help. She didn't, she struggled but things are looking up now. No thanks to "them".
I've been concentrating on awareness for PH which I will continue to do. But I think it's time to add the state of our medical care and treatment to my list of things to do. Thanks for sharing your story. My prayers are with you and your family.
Neha Shah
Wednesday, November 1 2006
I completely agree with all of you. I was diagnosed in 2004 -- after I quit my job because they wouldn't give me any time to figure out what was wrong with me. I had already used the short term disability for my pregnancy. Luckily just the previous year we had switched over insurance to my husband and I picked the most expensive policy -- who knew? -- and they paid 100% for everything. Well last year they changed policies while still collecting the super high premium and now we have a deductible and 20% responsibility up to 3000 a year. I was found disabled and will be medicare eligible next year. It is my understanding that the insurance company will require me to get medicare and I have to pay the premiums but they won;t give me a break on their end for deductible or out of pocket maximum.
Tell u the truth, i think i can work. What i can't do is the 50 hour work week. I can't do the 1 hour commute each way and the 8 hours of working and the mandatory lunch break. That would exhaust me to no end. Here is the kicker: no one wants anyone part time and no one will let me work from home w/o knowing me first. my other job won't give me my job back even though the position is open. i am afraid to lose medicare lest my husband's company changes their policies again.
So, why can't the government give incentives to companies to let their workers work from home? they would help traffic, oil consumption, pollution and also save on disability payments! Why not let me keep my medicare ??? if i make more than 800 a month i lose it all. now tell me, who can live on 800??? also, if i have a good year..great. what about next year? we have read the diaries; people do get sicker and then what?? WHAT A MESSED UP SYSTEM! I'm sick of people yelling at me in the parking lot for using the handicap space. Some days I AM JUST TOO TIRED. and I have a 2 year old with me. what do u want me to do? Sorry I don't look sick enough. Sorry you can't see racing heart visually! Sorry to RANT. We should be able to do something??
Sue Mace
Tuesday, October 31 2006
I totally agree...when I lived in Texas, there was a woman on food stamps, sorry but she was black, and she was buying $200 in lottery tickets! I was appalled...they would not let me have them at the time I saw her because the lady at the welfare office thought I borrowed my kids from a neighbor and brought them in just for show...and that if I wanted help...I had to quit my $400 a month job just to get the aid I so desparately needed for my kids! But that aside...you o see so many people of all races abusing the system...my sister is one of them! She had about 8 people living in her home (supposedly her mil's home), and 3 worked outside the home with 2 making over $1000 a week and her mother-in-law was getting 2 checks at the first of the month...this all said to make this point...they were getting over $400 in food stamps a month! I just have me and my husband here getting any income and they tell me that we make too much for ANY help at all from the welfare system! There is something lacking in this country and it's in the healthcare system and in the government running! Where is the aid for those who abide by the rules and laws? The ones who actually need it! It's appalling to even think about having to change from the insurance I have now to medicare! I did take out part A...but should I go ahead and take out part B just in case I ever lose my insurance? I don't know...good question! I'll ask someone who might know! Thanks for telling us what is happening or happened with you Merle...it is a sad day when 2 people who love each other so much can't be happily married TOGETHER!!! Hopefully something can be done sooner rather than later! Take care!
Marilyn Delavan
Tuesday, October 31 2006
Yes I agree the system is wrong and needs to be changed. Its not only wrong its immoral. I have an independent policy with BCBS that I had before I was dxd with PH. It doesn't pay for doctors visits or perscriptions but does pay for flolan and 100% when hospitalized. I can't get SSD because I don't have enough work credits from the past 5-10 yrs, I couldn't work because I was too sick to work and can't collect SSI because I have more that $2000.00 in assets. I am single, divorced since 1976. I have one daughter who moved to Ohio for work. I was going to go with her but found out BCBS would cancel me if I did not live in Michigan at least 6 months out of the year. I live all alone with no one to call for help, my family had to move to find employment. I HATE living alone especially being on flolan and 02. If I get sick there is no one to help me..so I take my chances. I know life is not fair and there are no guarantees but would President Bush live like this?
Debra Branscomb
Tuesday, October 31 2006
Dear Merle I agree with you the medicaide process thinks. I am a registered nurse totally disabled. I have given up my car due to a paralysis issue of my right leg. I had to turn ownership of my insurance policies over to my mother as they count as money in the band, the only problem is you have to be dead to collect the life insurance. The entire process is humiliating. I have been lucky with case managers that have shown me ways to get around the system. Ther is an old saying you crawl before you walk. Those of us with PH and other catastrophic disease are crawling again. I was diagnosed with PPH in 1996. I was allready disabled due to a spinal injury. In the last 10 years I have had 9 major surgeries which always include going to ICU, and I have spent a total of 9 days on a ventilator. THe surgeries alone have been over 100,000 each. Ther needs to be a policy of some kind that would cover as a secondary insurance. I live in IN and you can not have a supplement to medicare until you are 62. I am 51 so I have to be indigent untii then. The system is wrong. If you walk into the medicaide office and are pregnant you pretty much get a free ride. Debra
Karen Cooper
Tuesday, October 31 2006
I have known Merle for over 20 years, she is a wonderful friend, Mother and wife. Because of this disease that any of us could get she has been basically thrown out of her home and away from the man of her life. It is unfair and a burden on them, he could be helping her and taking care of her but our government has decided that there are two many scammer's out there so they treat everyone of us the same as the people who scam instead of deciding things on a one on one basis.........She needs to be with her husband and all of us need to write our Senators and Congressmen and the President with a plea for her.......ALL OF US Then maybe just maybe this wonderful woman and this gentle man will be able to be together and live out their lives and she'll get the medications she needs...GOD BLESS YOU and TOM MERLE........
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