International MPN News, Science & Opinion

Bente’s Story

 

 

My Struggle Battling PV in Norway

by Bente Evadatter

 

 

I was in my mid fifties, had changed my career, and my children were grown, on their own and happy. I had been a single mom for nearly fifteen years. It had been a struggle financially and in every other way, but I felt good that I’d overcome my adversities and that my children were settled and content.

I had some strange symptoms, but assumed they were because my hypothyroidism was acting up and perhaps my arthritis was adding to my discomfort so I did not pay much attention to the symptoms. I was working out, doing relaxing exercises for mind and body, had lost more than 40 pounds, (more than necessary, but proud of the accomplishment) and feeling that finally it was my time to live my life with only myself to consider. I was in for a big and unhappy surprise.

 I’d been a teacher for about fifteen years, but by 2007 I began to feel increasingly stressed by the outdoor activities (especially during winter), the long afternoons and the homework.  I believed my increasing inability to handle teaching was because of my hypothyroidism and my arthritis. Still, of course, a teacher is required to manage all of her activities and there was no prospect of flexibility in the required work. Though I attempted for a long time to keep up, eventually I accepted that I needed to change my career to something that would allow me some flexibility.

So, in 2007 I took a big step, and changed my career. I began work in a rehabilitation firm where I helped to get people back on their feet, back to work, and back to greater activity in society. My expertise was aiding adults with reading, writing, mathematical difficulties, and helping them on how better to take exams and related areas.

The work I was then doing would prove ironic in light of what I was about to face.

In May, 2008 I was myself scheduled to take an exam the next day, one that would qualify me for an additional aspect in teaching grownups with special needs. I’d left work early to prepare for the test, walking home and feeling fit. My phone rang.

The call was from my GP´s office. I was told that something was wrong with my red blood cells and they were referring me to the hematologists at a hospital. I said OK, and hung up. Then I started to panic, and went directly to my GP’s office for more information.

The receptionist said it probably was hematomacrosis that would just require the occasional removal of some blood.  She laughed, saying, “No biggie.”

No biggie? Did she have that wrong! Indeed, it was from that point forward that this THING would change my life.

My GP sent a referral to the hospital on 21.May 08. The healthcare system in Norway can be frustrating, as I was about to learn in real time. Wealthy people can afford private health care, but for those, such as me, who are part of the national system, the delivery of medical services often fails. Hospitals have waiting lists supposedly so that the critically ill are admitted first. However, there are some stories of hospitals falsifying their waiting lists to save money with the result that some patients have died or gotten much worse while awaiting admission. In my case it turned out to be uninformed decisions about delivery of my healthcare that caused me frustration and a lack of good care rather than the delivery of helpful care.

After the referral I heard nothing for about two weeks. Then, I began phoning more or less every other day. I had planned on taking a trip to Greece in June. The trip entails a four hour flight, and I was concerned about going without knowing more details about my medical condition. On one of my calls I was talking to a nurse. She called out to the doctor to inquire about my situation. I heard him answer that he had looked at my blood values, that they were not acute, so there was no hurry.  As my luck would have it, this doctor later became my specialist and my “treatment” under him did not turn out well.

Meanwhile, at that point my HgB was 21 and my Hematocrit was 0.65 (the normal ranges in Norway for a female are 12.1 – 15.1 gm/DL for HgB and .43 for Hematocrit.

In early June thankfully a young intern gave me an appointment for 11.June.

At that appointment, based on the doctor’s examination and on information available to us via the Internet, I learned that I had an advanced case of PV. (Had I not learned that information and instead taken the flight to Greece, according to some information I’ve read I may have been at significant risk of having a stroke.) In the course of that same examination the doctor also detected a heart murmur, which added to my fright. I received an appointment for the following week.

12. June

I got an emergency call from the hospital; I needed to come in the next day for more tests and treatment. That call frightened me that much more.

13. June

I had a fever of over 39º Celsius. They performed a thorough examination of all my organs and performed a bone marrow and bone membrane test.

They started phlebotomies this day, and I had one twice a week for the first two or three weeks following, then every week thereafter. Though I was prescribed Albyl E, a blood thinner, which I still take, I had no improvement until 24.July..

I was sent home, with sick leave for a month, and told to be on the alert for blood clots.

I live alone. I felt totally lost and very scared. How do you spot blood clots, I asked myself. I didn’t know, but kept staring at my legs. What if I get a clot in my heart or brain? I’d been given nobody to contact in case of an emergency. I had a million questions, but no answers.

 The summer of 2008 was horrible.

I spent it lying on my sofa or in my bed. I watched TV, did jigsaw puzzles, listened to books and tried to keep sane. My ears were ringing, I was constantly dizzy and my body felt like jelly. I had no strength, was hardly able to stand for more than a few minutes. I tried to go for some small walks around the neighborhood, aware of the blood clot scare, but I was so weak that I could only take these small walks on some days.

This is how I felt the first summer.

I call this picture “The ghost of me”.

Starting on 13.June I kept a diary.

From 13.June till 24.July I had phlebotomies every week, removing about 4-5 dl blood every time. Some weeks into this treatment it struck me that no one had asked what medications I was taking and whether, with ongoing phlebotomies, it was wise for me to continue on the menopause hormones I was taking or whether I should be tapering off my hypothyroidism medication.  It was my understanding that with hypothyroidism you should not abruptly quit any medication and I was worried that the combination of the rapid thinning of my blood and an abrupt termination of my hormones could be damaging, but no one offered me advice on these issues. It was as though their only focus was doing the phlebotomies without consideration of my overall well being.

To this day I still have no help concerning my hypothyroidism, and I monitor it myself.

On 31.July I received a letter inviting me to an initial appointment at the hospital where I had been a patient since 13.June. This delay solidified my belief that I was not being properly cared for. After my initial month of phlebotomies I was also sent back to work, being told that my blood counts were “under control”. (In fact, my platelets and red blood cells were rapidly increasing at the time, but had simply been lower on the day of blood tests when told they were “under control”.)

I was already feeling depressed and generally ill enough when, as I was lying on the phlebotomy table, a doctor stopped by and asked me if I was trying to get an easy pass so that I wouldn’t have to work.

It was impossible for me to stay at work. My ears were ringing and sounds seemed blaring. I had the sensation of flashing lights in my eyes; my headaches were constant; my body still felt like jelly; the dizziness was terrible; and I’d pass out for moments.

As it turned out I learned that the “heart murmur” was actually a hole in my heart, between the heart chambers. Fright was adding on top of fright. When I tried to express how petrified this was to me, the doctor brushed off my concern.  I tried to say that all this medical news was becoming overwhelming, but I was simply sent home again.

My GP gave me sick leaves off and on the following year.

The doctor I had been assigned to was the same man who had originally said there was no need for me to be treated quickly. He wouldn’t talk to me, irritated that the treatment he had prescribed didn’t work as he’d anticipated. In essence, his solution was to refuse to communicate with me. Instead, I had my blood checked, and had phlebotomies done by nurses (who were very sweet and helpful). Once home, I’d lie on my sofa and undergo the same routine month after month for the first year after I was diagnosed.

By the end of January ‘09 I started on Hydruxyurea. Though I’d feared taking it, by this time I felt so awful I was ready to try anything. It turned out not to help much, but at least by that time I only had to have phlebotomies every second to third month.  When I complained to my doctor of side effects from the Hydruxyurea, he simply became more irritated. It was as though his view was that I was a pest and an ingrate and nothing would satisfy me—while I was struggling with the underlying disease and the effects of medications.

One year into this treatment he realized I wasn’t improving, but essentially he attributed my lack of improvement to my hypothyroidism. Convinced that he was unable to treat my PV well he said it looked like I would just end up on disability. In short, he just gave up on me.

I had nobody within the medical profession to help me cope; I had nobody to talk to about all this. After leaving the teaching profession, many of my colleagues and friends I’d made over the years disappeared partly from the lack of communication since I’d moved into a new profession, and probably partly because I became incapable of socializing as I’d done prior to the onset of PV. Whatever the reasons, this loss left me feeling more isolated.

I felt totally lost regarding my PV and the symptoms I was continuing to experience, knowing that I was getting no meaningful help. I was scared, and without any support system. Though my children were always there for me, I felt I couldn’t burden them with my problems. By the fall of 2009 I’d just lie in bed, without the sense of physical vigor to get up and with no motivation to get up. I’d gone from a good place shortly before my PV diagnosis to a dark place.

After a year in the health care system in Norway, either you must return to work or you lose your job and go on welfare. Depending on your overall financial condition, of course, this could be catastrophic and could mean losing your house, your car, virtually everything you own. That’s the kind of devastation I was facing.

My doctors would not/could not help me. I knew of nobody who could help me.

 I decided to start helping myself.

I found a lot of information on the Internet, including the MPD chat group (now MPN) where I felt I got a lot of good advice. I no longer felt so isolated. Others understood my symptoms and fears. They suffered similar issues. I was part of a whole community of those with MPNs. In Norway there were no such groups.

As part of my self-help process I fought my way into being treated at another hospital. I engaged in a calling and letter writing campaign, laying out my problems. At my first meeting with my new hematologist she started out by informing me that patients “like me” have about a 10-15 year life expectancy from the onset of the PV. She also told me she thought it was inappropriate of me to seek help from the Norwegian Cancer Organization because they were “really” sick.

Instead of helping me she gave me a new diagnosis with every symptom; this turned out to be a confusing and difficult situation. I believe that her decisions ended up elevating my blood counts to levels that were too high. Her answer, in substance, was, “You can’t feel what’s right for your body. I know what is best for you.”

I brought her information from US tests demonstrating that fatigue is a major problem for those with an MPN. However, the medical profession in Norway generally dismisses this finding because fatigue is not scientifically measurable. In the end, the doctor was unwilling to fill out the necessary papers that I needed to get my disability payments in order. What she did do was to prescribe more pills for nausea and heartburn. I also had itching, but had to fight the authorities to get medication on a special no-charge basis. The doctor did not even understand why I needed this medication.

I asked for another doctor, and ended up seeing a different one virtually every month, so I had no consistency in care. I became more vocal, stating my cause and demanding that someone do their job, which included listening to me, accepting that I knew my body better than anyone else, and accepting that having PV entails living with many symptoms that I was suffering even though blood counts at any particular moment might be within normal range. I also demanded that they complete the required papers I needed to get money from the welfare system since I was able to work only half time.

By then, I was on a mission. I was determined to survive this physical ordeal, but also to survive financially.

Feeling that I needed to be active in creating a community for those in my country suffering from an MPN I’ve developed a website in my native language generally to describe some MPN related issues: www.pv-foreningen.org. So far I’ve located eleven others in Norway with an MPN—a start.

By the four year mark post diagnosis, I was not getting much better, working half-time, sleeping the rest of the day, never knowing whether my financial “security” would last more than a few months, and, the medical community not accepting that my symptoms were real.

I came to the unhappy realization that most people simply are not that interested knowing how you feel.  I was in a constant state of limbo, feeling lousy and tired all the time, not being of much interest or joy to anybody.

If I was happy about anything it was that I was living alone, at least being able to exist on my own terms, without having to explain myself or justify how I felt to anyone else.

 Really – a doctor listening and acting on my behalf?

After living for years with the immobilizing symptoms and in constant fear about my financial insecurity, I was blessed finally to get a hematologist who believed me. In November, 2011, one day before I’d have been barred by the welfare system from submitting an application for my disability pension, he wrote the necessary letter for me to qualify for my disability pension. He wrote that my symptoms were caused because my HgB had been allowed to remain too long in an elevated state.

It didn’t matter to me whether he was correct in his conclusion. What mattered was that his conclusion was in accordance with the Norwegian medical perspective that if PV is properly treated, the patient won’t have symptoms. Meanwhile, anyone with PV knows that, treatment or not, you have symptoms, but he’d given me the medical support I required for the proposition that my condition was permanent and that I will not get better—necessary elements to qualify for disability.

The doctor’s certification did not end my battle with the welfare authorities, but at least it gave me the ammunition to fight. Though my ongoing battle with the welfare authorities is too long a story to tell here, suffice it to say that as of 23.January 2012, my 60th birthday, the authorities finally acknowledged my right to receive a 50% permanent disability which means I now have a small, but secure income.

In the end I think I just wore them down, and the welfare officials and the doctors just wanted to get rid of me.  From my point of view, I refused to give up on my rights, remained diligent in pursuing them, knew they’d followed incorrect procedures and I wasn’t going to quit until I won.

But my fight with my medical condition was far from over. After thinking/hoping that maybe I’d turned a corner matters turned bad again:

10.August 2012:

My doctor did not order a hematocrit count as part of my blood work. I filled in the request myself on the order form. He just looked at the HgB and said he was worried that it is too low. I thought Does he not understand PV?

My Hematocrit has not yet risen to 0.43. I understood why. On my last visit I had a phlebotomy because my Hct was quite hgh and it hadn’t yet had time to elevate. (I know that, but I also know that I feel better when it is really low). My doctor, however, wanted to cut down my Hydroxyurea to 3000 mg/week, half of my usual dose. I refused telling him, ”I was really sick until I started on the HU.”

He leans back in his comfortable chair and asks, ”How much HU do you think you should take?”

It upset me greatly that my doctor was asking me what I thought was an acceptable dose, but I said, ”OK. I’ll go from 6000 mg/week to 5000 mg/week.”

He said, ”OK.”

7. September 2012:

Today I was feeling bad, and had been for some time. I asked my doctor if he’d write a letter to the Welfare Department explaining my condition so that I could cut back on my working hours.

He said, ”There’s no connection between the PV and how you feel.”

I thought to myself, I don’t believe what he’s saying, but then I thought, Why are you surprised? This has been going on for four years.

I feel like going home, climbing into bed and staying there. But instead I said to the doctor, ”The other doctors have confirmed that I have permanent damage to my blood vessels from the PV, starting from a point in time before I was diagnosed.”

Though by then I’d seen this doctor for four months, for the first time, he then looks at my chart and, looking a bit surprised says, ”You’re right. Your chart does confirm that.”

13.September 2012:

Today I more or less collapsed and had to go home from work. I saw my GP. He gave me two weeks sick leave, shaking his head and mumbling how crazy it is that the hospital doctors don´t know that asteni (fatigue) is a symptom of PV.

 And now…

As I said at the beginning, it’s ironic that I now work in a field to help adults become rehabilitated so that they can pursue more active and productive lives. I could be one of my own patients!

Until these most recent episodes I was working half-time, was typically exhausted when I got home, but having the job forced me to get up and about and I liked my work and my colleagues.  Though I continued to have problems balancing the work with the exhaustion, I didn’t feel that I had the strength once again to try to tackle the welfare system in an effort to get a 100% permanent disability rating. Instead, my hope was that I’d be able to hang in there until I was 62 when I’ll probably qualify for an “ordinary” retirement.

I’d tried to cope with the fatigue by carefully exercising, and I sometimes DID things, meeting with friends, going places, but always carefully planning everything ahead. Generally I allowed myself just one evening activity a week, but when I’d go out I made sure to bring with me a water bottle, and planned to take the next day off during which I’d rest as much as possible.

I now take 5000mg HU a week, a blood thinner daily
, something for my reflux problems, something for my itching, something for my nausea, something for headaches and other aches (joint pain), and try to balance my hypothyroidism medication. I have trouble sleeping and also need some medication to help with that problem.

Have I learned anything?

Oddly, what I’ve learned from these last five years is not to worry about tomorrow. As the Good Book says, each day has its own worries. I used to be a big worrier about what might happen tomorrow. Now, I accept each day and take one day at a time.

Each day also has its own beautiful experiences, perhaps small but nevertheless beautiful. I feel I don´t have to achieve so much anymore—just live.

I recognize my good fortune. I have a fantastic family—my daughter and son, their spouses and my grandchildren. Not a day goes by without me feeling their love and concern. I recognize that with all that I’ve been through, it could be worse though I am at a place and time in my life when at least I’d have hoped that things would have leveled off. That they haven’t makes it more difficult to come to terms with the fact of my disease. Though I have relative financial security it is far from comfortable and my relapse leaves me financially more vulnerable—not sure if I’ll ever be able to go back to work, without the energy to fight the Welfare Department for 100% permanent disability status, and not yet old enough to qualify for “regular” retirement. And yet I strive to enjoy those small but beautiful experiences daily. It isn’t easy.

I’m back on the sofa all day, my legs feeling like jello and my head with a foggy/aching sensation and the rest of my body feeling like I have the flu. My mood is back in the basement because I’d hoped I’d reached a point at which at least I could remain stable. Perhaps I was overdoing work, pushing too hard for a social life, or suffering the consequences of my doctor forcing me to cut down on my medications. Regardless, it feels like my years of treatment were for naught and the doctors still don’t take my symptoms seriously. I hope I can find some inner energy to come back from my present situation. I hope to be able to find a place at which I can gain fuller enjoyment from life. What I know is that I don’t intend to give up the fight.
Take me back to the Contents

© Bente Evadatter and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission is strictly prohibited. Excerpts and links may be used, provided full and clear credit is given to Bente Evadatter and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "Bente’s Story" (7)

  1. An update on my own story; and thank you for all your kind replies.
    At my next appointment I suddenly got a new doctor, probably an intern, she started immediately to look for another disease, as she was baffled by my symptoms ( ;-)). I had another BMB and a lot of other tests, but by the time I was going back for the results, she no longer was “my” doctor, I was asked to pick one from a list of doctors.
    By this time I had really had it, once home I contacted The Board of Complaints concerning medical treatment (yes we have one), and sent a request to go to another hospital.
    On the day I was getting my BMB results, the young woman doctor happened to meet me on my way to the waiting room; and there in the corridor she told me the results was fine, noe change in my bone marrow. So, meeting with my appointed doctor, I told him this. He said; but that is wrong, we found fibrosis in your bone marrow. This was very unsettling for me, but perhaps explains things. He also had been to a conference and learned about MPNs, he now realised that I was telling the truth, you can have these symptoms with PV. I said nothing, having done that for nearly five years.
    There was not a lot of fibrosis, but he has applied for me to start on Jakavi (in Europe the v ??) I don´t know, but think I will be one of the very first to do that in Norway, if our strange health system doesn´t refuse me this, I am waiting for the ok now.
    So, after the initial shock of this news, I am ready to try to get back to work, after having tried out the Jakavi (still if I get it) for some time.
    Thanks for having this forum, it helps me to write things that occupy my mind.
    Good health to you all, Bente.

  2. Dian McCulloch said:

    Bente, thank you for sharing. It is somehow reassuring to know that I am not alone with the symptoms of PV that cause the doctors to stare blankly and say, ‘but your blood counts are normal this week”. I’ve been told repeatedly, “there is nothing we can do for you except manage your blood counts” and only recently, “those symptoms are just part of your condition” which is, at least, an improvement over the blank looks. Keep up the good fight.

  3. I love the road sign “Endurance Ave”, how very appropriate it is. Wow, you are quite a warrior, keep up the good work. I can certainly relate to some friends as they can not understand why we are the way we are and once we are out of the loop, they tend to forget about us. A few months ago I noticed an obituary where it stated “he had a disease that took him away from his friends”. They did not mention the disease but it sure sounded like an MPN. Keep fighting and hang in there.

  4. BonniecEvans said:

    You are a warrior. You have fought the system so much and still stood up for yourself. Not many people can do that. I hope that your Norway MPN group helps each other as our Atlanta group does.

  5. Denise Parker said:

    Bente, thank goodness that you are a fighter. People with mpn conditions should not have to fight so hard to justify that they need care, compassion, support and being listened to. This is why more awareness raising is needed and why stories like your story need telling. You are a courageous woman, and health services around the world need to be more astute and thorough in the assessment process. Joined up services need to be developed so that people who are exhausted and ill do not have to fight for their rights and their basic needs such as a roof over their head. Thank you for telling your story.
    Denise

  6. We have occassionally ‘touched’ on the chat groups in the last two years and I was so pleased to read your story, although not of the problems you have experienced. Bente, you are a fighter and have done so well so far. Keep at it, life is worth the fight.

  7. Barbara Kurtz said:

    I’m not sure what to say about the medical treatment in Norway but several of your comments sound familiar. Dizzy, fatigue, foggy headed and headaches and your line about being ready to try anything. That’s how I felt in 1987 when I couldn’t stand up without getting nauseated and agreed to take HU. It took a while for those symptoms to be connected to my platelet count of 1.3 mil. The chats and support groups have pretty much convinced me that those of us at least with ET and PV suffer the same “vague” symptoms doctors brush off and don’t want to deal with. I realize I’ve been pretty lucky with a good hem and was able to work until I retired. I also decided on my own to stop the estrogen I was taking and was surprised at what a difference it made. Hormones can contribute to clots. I still take the thyroid and the pill for acid reflux.
    Thank you so much for sharing your story. It is still not finished. And cute grandkids.

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