Stories 2016

2016 starts here

Vicki’s story

Hello everyone – I was chosen to join you in battling this CADillac of diseases!VicinhospitalondaygoinghomeOct2015

I’m 57 and live in Wisconsin, USA.  Other than osteo-arthritis, I have been in very good health.  I became ill last October, following a 3 week battle with an upper respiratory infection.  While on an out-of-town trip with my family, the weather turned cold in Northern Wisconsin (mid-20’s F) and I became very short of breath, tired, pale, and generally did not feel well.  I kept pushing myself since we were on a weekend getaway to celebrate my birthday and look at model homes for our retirement. I would sit outside in the sunshine – I didn’t know that the cold weather combined with my (soon to be pneumonia) would create the perfect storm!

By the time we got home and visited the Emergency Room, my hemoglobin score was 4.8.  The ER doctor was able to immediately diagnose the disease, after Googling it when my blood coagulated after being drawn.  Good old Google!

Following a very long night, fearing a heart attack and waiting for a perfect blood match, they began to administer last rites.  Fortunately, I live near one of the best hospitals in the country, Froedert, where they were able to find a perfect match the next morning.  After receiving four units of blood, I began improving.  A 4-course round of Rituximab and lots of rest got me back up to 13.0 for hemoglobin, and I was officially in remission.  Currently, the only medication I’m taking is 1mg Folic Acid, and my blood is tested every two weeks.  My doctor tells me the Rituximab stays in your system for quite some time.

My eyesight changed as a result of the Rituximab (close-up vision), my hair became very thin and had no body, and I experienced hot flashes (one day I counted 23 flashes).  My doctor looked it up online and indicated these are not documented side effects of the treatment.  I was a bit irritated that no one at the hospital took the eyesight change seriously.  I went to the eye doctor immediately after release from the hospital, and my eyesight had indeed changed from my last exam.  An exam two weeks later showed that it changed again!  Has anyone else felt these same side effects?  (My eyesight has now settled and I’ve received a new Rx for my glasses, my hair is back to “normal” and the hot flashes have almost disappeared entirely).

After three months, I returned to my job in Marketing, working part-time.  It has been very cold here (it IS January) so I was very cautious in dressing warm, having my car pre-heated, etc.  However, now after 1 week back to work, I have been diagnosed with bronchitis, and my hemoglobin scores are dropping slightly.  A second course of antibiotics and steroids has cleared it up, and my hemoglobin remains at 12.0 . which is great news.

I fear this will be a long-term pattern – upper respiratory infection; drop in hemoglobin; GiannaexamingNeneinhospitalOct2015visit to the doctor…but I’m determined to see my granddaughter walk down the aisle someday (she’s only 6 right now!) so I am keeping a good attitude, which I think is half the battle.

I want to thank everyone on this site for sharing their stories, since, as many of you noted, the feeling of isolation is strong.  I’ve made friends with a few of you that live in the US Midwest, and would enjoy corresponding via e-mail with anyone that is interested.  Thank you to the owner of this site for keeping it updated, and I’m sending WARM, healthy wishes to each of you.

Vicki Christiansen
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Rossella’s story

I still have an empty frame waiting for a picture labelled: The Last Perfect Man.

Homer SimpsonYes, it’s him! Homer Simpson, my secret hero! OK, I thought it was reserved for a man’s picture. But now I could put my own face there instead!! I have discovered I can be yellow and fat like Homer, always hungry, occasionally with a mustache. Yes, I am a CADdy and yes, now I feel like Homer on the roller coaster of hemoglobin. Up and down for a whole year now.

Everything started with a strong urticaria all over my body. (Urticaria is a rash of round, red weals on the skin which itch intensely, sometimes with dangerous swelling, caused by an allergic reaction, typically to specific foods – Ed). I went to a doctor friend of mine but no explanation was forthcoming. After 3 months basically spent scratching, I caught the flu and could not stop sleeping afterwards. So scratching and sleeping, I was almost dying. I live alone and I was just unconsciously adapting to my new condition. No, not really alone, with 2 cats as well! So I was just sleeping for the same amount of time they did, and the 3 of us were having beautiful dreams.

My doctor friend saved my life by sending me to the hospital. There I discovered I had AIHA, but the hospital doctor did not recognize CAD and so I was given Prednisone in high doses for months, resulting in an added 15 kilos, a round face, mustache etc.

When my hemoglobin count reached 10, I moved to another hospital, apparently to a doctor who was an expert in AIHA. I say apparently, as during this past winter I spent another 21 days in hospital (Christmas, 1st day of the year and everything) due to a relapse. While she (the doctor) writes scientific articles on AIHA stating that steroids won’t address CAD effectively if not taken in unacceptably high doses and that it is likely patients will have a relapse, with me she was just tapering off the Prednisone after months and I was taking 5mg/day when I finally had my winter crisis.

Well, so back on the Prednisone from the beginning at 160mg/day. Homer was back again: yellow and as fat more than ever! Also, I had my first 4 doses of Rituximab – strongly recommended in the famous articles as primary treatment but given to me only when almost dying. And now I am seeing the first results: Hb=10.5 last week. I am still taking 12.5mg/day of steroids and waiting to see if I need further cycles of Rituximab.

I have to thank Betty for creating this group as in the few days I have been part of it, I have already discovered more than what the doctor told me in 7 months! I have been reading technical articles for months, especially the ones describing trials with patients. But hemoglobin and trials are not everything. There are daily life rules and hints that should be shared, suggestions, feelings. And new treatments under study, I discover! I don’t feel alone anymore now in this rare illness. More: I feel stronger.

Ah, during my crisis I had a sort of “mystique consciousness”, a feeling of peace and extreme connection to my own being human and with all the living creatures and existing things. Can sound strange, but I discovered then that somebody calls it “illumination”.

Still wondering if Homer Simpson has ever had one. If I get better and finally meet him, The Last Perfect Man, I am going to ask!

Rossella Guiot
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Frances’ story

Hi everyone!
Time to put pen to paper on my journey into and with CAD. I am 67 and live in Cornwall in the West of England.

I have always enjoyed good health and rarely suffered from anything worse than a “heavy cold”. So I was surprised in late 2010 to develop a deep chesty cough and associated lethargy and general feelings of significant un-wellness. At the time I was working as a commercial lawyer and my secretary watched me go downhill until she insisted I phone the doctor. An appointment was duly made and I was put on a heavy dose of antibiotics with a follow up appointment as he was concerned about my condition and wished to be sure that the antibiotics were doing their job. Well they did and I gradually recovered although it took a few weeks. I now recognise this as almost certainly being the bout of ill health which triggered my CAD although it wasn’t actually diagnosed for a further three years.

Later in the winter of 2010/2011, as was my usual pattern, I went skiing in January in Europe where it was very cold and in early April I went heli-skiing in Canada and again there were some pretty cold days and having gone in early one day my toes were so cold they were blue and I sat with them in a warm bath, promising myself that I would get new boots before the next season and, ideally, some which had heated insoles. In retrospect I now realise that my energy levels were already compromised as I returned to the lodge at or just after lunch each day rather than staying out skiing until four or five but I was comfortable with that and thought it was due to increasing age rather than any more sinister cause.

We returned to the Canadian heli lodge for a special friend’s birthday trip at the end of April 2011 and on about the third day I had to go back to the lodge mid-morning as I was having difficulty getting my breath while up the mountain, and simply had no energy. I assumed I was developing a chest infection or something similar and didn’t ski anymore that week. Walking up and down stairs was difficult for a few weeks but the issues gradually resolved. I am not one to visit the doctor so I didn’t!

The next year (2012) we went to Europe again in January but generally stopped skiing at mid-day choosing to enjoy delicious long french lunches and great wines after which we would return to the chalet. In April we went back to the heli lodge and again I skied mainly until or just after lunchtime, when I had had enough, I thought nothing of it.

We followed the same pattern in 2013 although a heli-ski companion who is, incidentally, a doctor, did ask me why I didn’t ski longer each day and I said that I really didn’t want to tire myself out and found half-days sufficient, he didn’t push the question further.

Early in 2013 I had registered with the local doctor’s surgery after a house move and the practice nurse gave me a pretty thorough check over including the taking of a blood sample. I heard nothing further from the surgery so didn’t follow up for any results – I was fine wasn’t I?

Late in 2013 I visited the doctor with an intractable itchy skin complaint. I had developed a number of itchy spots on my legs and back over the course of several months and there seemed to be nothing I could get from the chemist which would relieve the itch.  While I was with the doctor I asked her to check the earlier blood sample result and after reviewing my notes she said she would like to take another sample and get it re-checked. A few days later the senior partner in the surgery phoned me and said there was an issue with my blood which looked like it could be a condition called Cold Agglutinin Disease and that he would like to refer me to the local hospital’s Haematology Department. I obviously agreed and then started to research the condition.

I have to admit that what I learned was a bit scary to begin with but I hoped that I would turn out to be one of the idiopathic cases as described in the literature.

Suddenly everything went into overdrive and in a matter of a couple of weeks over Christmas and New Year I had a bone marrow biopsy (on Christmas Eve) and a CT scan (New Year’s Eve). Both of these came back basically negative for any of the usual underlying causes of CAD although the consultant said there was a very small abnormality in the bone marrow but which was probably not an issue.

The consultant then told me that I was very fortunate to be an apparently idiopathic case, that I should take folic acid, stay well, keep warm and consider moving to a warmer place and in the meantime he would monitor me initially at three monthly intervals but that there was nothing more he could do.

Two months later I picked up some sort of virus which sent my whole system into meltdown, high fever followed by shivering and cold sweats, complete lethargy and inability to even walk upstairs without sitting down at the top. Eventually I went to my local doctor who took a urine sample (which identified blood) and a blood sample to be sent to the lab. The senior partner phoned me a couple of days later and said that my Hb was down to 7.9 and that he had spoken to the consultant who repeated what he had told me – keep taking the folic acid, keep warm, think about moving somewhere warmer and that since there was nothing he could do it would be pointless me going to the hospital and exposing myself to other peoples’ bugs!

I was too weak and pathetic at the time to fight back and just sat by our large wood burner day after day for over a month while I recovered my strength and then went on holiday to Canada where we sat on the train across from Toronto to Vancouver enjoying the scenery and moving only from our little cabin to the dining room or the observation car and back. It was an ideal opportunity for gentle recovery and a wonderful experience.

In Vancouver we visited friends and family and then went into the heli-ski lodge where I was amazingly well-cared for. While my husband went out skiing at 9.00 each day I stayed in the lodge until the lead guide called up on the radio to get me out on to the next helicopter leaving the refueling spot. He would wait until weather and snow conditions were as near perfect as possible and then I would get a private guide to ski with me so I was under no pressure and I did one or two runs each day. I then returned to the lodge where the log fire was lit and I reclined on the sofa with alternating reading a good book with staring at the most beautiful view in the world – a granite peak called Snowpatch in the Bugaboo Range of mountains in British Columbia, which sits at the head of the valley nestling among other peaks and glaciers with pine forest falling down the sides of the valley in which the lodge is situated. There is a hot tub on the roof with the same view – what’s not to like?

By the time I got home I was close to fighting fit but with increasing fitness came the resolve to ensure that I changed my haematology consultant care and indeed hospital to someone and somewhere with a greater understanding of the condition and what can in fact be done to help if necessary.  My local doctor assisted me and my care was moved to the University Hospital in Plymouth where there is an active haematology/oncology research unit and my care is first rate, sympathetic and is indeed very, very caring.

I have had no further CAD episodes although my Hb does go up and down a bit. I continue to look after myself and ensure I stay warm and indeed does my wonderful husband. I visit the hospital with gaps of between 3 and 5 months, dependent on the time of year and my Hb level at the last visit.

I continue to travel including a trip last year across the South Atlantic from Ushuaia in Argentina to Cape Town via Falklands, South Georgia and Tristan da Cunha. During the early days of the trip it was pretty chilly (we dropped down to just above the Antarctic latitudes) but I wrapped up warm, acted sensibly, stayed inside the ship when it was very windy or actually snowing, I participated in the shore visits but didn’t overstay on time ashore when it was cold and progressively we made our way to the warmer climes as we approached South Africa.

I also continue to heli-ski but only when the weather is right and for as much or as little as I have the energy. I sailed in Turkey last autumn and wore a wet suit for swimming, fearing even the Mediterranean might be just a tad too cool for me.

I do suffer some minor depressive moments when I think about the things I can’t do as much or as often or when I want but hey, onwards and upwards CADs, there is life after diagnosis and this is a manageable condition, it could be much worse.

Frances Firman
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Carole’s story

Late in January 2016 I became very ill with a virus (not the flu),  subsequently experiencing lower and upper gastrointestinal (gastro)  issues (painful bowel movements, constant burping, nausea, stomach area feeling cold and pressure).  My primary doctor referred me to a gastro specialist and over the course of four months I underwent testing including ultra sounds, endoscopy, and colonoscopy.

All of the procedures required complete blood work (CBC) first, and as I participate in the University of Rochester’s Strong Memorial Hospital (U of R) “patient portal” all my doctors can immediately review results of testing or procedures.  I was diagnosed with Barrett’s Esophagus, put on an antiacid in May, and reminded of what foods to avoid (highly spiced).  Most of the gastro issues disappeared, except for the constant stomach pressure and feeling of a “cold” stomach.  The stomach pressure is hard to describe—it feels like I over ate twice fold; like my stomach is twice as big as it should be producing pressure from the inside to out.  In June, at my annual physical the doctor was surprised to see, when comparing blood draws, that I was anemic — my hematocrit had steadily fallen from 31 in January to 26, but iron count was fine.

We decided to repeat a CBC in two weeks. That test confirmed the prior results and by then I realized that over the past several months I was more tired than usual and was having cognitive difficulties.  I work in a high school as a Special Education teaching assistant and had blamed the school year end craziness plus I’m 65 years old with the life style intentions of a woman much younger.  Anyhow, near the end of July, the appointment with a U of R hematologist was still a week away when one day I experienced a rapid drop in blood counts.  My vision became blurry; I was lightheaded (not dizzy), speech slurred, brain unfocused, rapid, labored breathing when sitting or standing, and overall felt terrible.  I called the primary doctor who consulted with the gastro doctor and was told to go to the hospital emergency room where they both had privileges.  I was admitted to the hospital (hematocrit 24, hemoglobin 8), given one blood transfusion, underwent numerous blood testing, chest x-ray, and upper gastro track CT scan (with contrast dye).  Oh, and no food for 18+ hours.

Results: I was not bleeding internally, heart was OK, I did not have Hepatitis A,B,C, or D, nor any other infection or virus.  (I do have osteoarthritis and migraines and take medication for both.)  I was diagnosed with “suspected” cold agglutinin by the Strong Hematology Department.  After two days I was released with “caution” meaning any change in symptoms I was to head for the emergency room.  The next week my husband and I met with Dr. Becker of the Wilmot Cancer Center at Strong Hospital.  Dr. Becker is a bone marrow specialist, researcher, and hematologist.  He confirmed the diagnosis of Primary Cold Agglutinin Hemolytic Anemia, a rare disease.  I’m his second patient in 20 years’ of practice.  Lovely.

The stomach coldness and pain was likely the result of the spleen and liver in overdrive trying to rid the blood/body of the affected red blood cells.  To be honest, I was in denial for several weeks after the diagnosis.  By late August both Dr. Becker and my primary doctor recommended a bone marrow biopsy (results were “normal”), medical leave of absence, twice weekly blood work, and “change in life style.”  I balked at the change in life style — I mean, really, it was Summer when my symptoms became worse, now a warm Fall season and the only physical changes to fluctuations in air temperatures were my inability to adapt to them.  By the middle of September, back at school, going from classroom to classroom caused chills or perspiration depending on the temperature of any given space.  I had the same symptoms in our house, grocery stores, and restaurants– any human made dwelling.  Walking in the parks with my companion Brach did not elicit symptoms.

I finally agreed to a medical leave of absence starting in October, and 4 weekly treatments with Rituximab.  Since the initial hospital stay I have had 4 more blood transfusions (1 liter each), using a blood warmer, approximately 2.5 weeks apart.  (The hospital transfusion worked for a month.)  My lowest CBC hematocrit was 22 and hemoglobin 8.1.  I know when I need a transfusion — the immediate symptoms are always the same: fatigue (not just tired), temperature drops to below 97 F, I feel my heart in overdrive trying to pump enough oxygenated blood (sometimes I can’t hear because of the noise of blood pulsing in the veins by my right temple), I feel like blood is draining from my face to my feet, and I’m wobbly when standing.  My husband, who always drives us to the Infusion Center, will tell me “you’re very pale.”  As of today Nov. 4, 2016 I have undergone 3 infusions of Rituximab, with the 4th scheduled for Monday.  So far my reactions to the infusion process with Rituximab have been mild.  I am given 2 Tylenol, and 2 Benadryl before each infusion and I self-medicate with a Zofran (for nausea) before leaving the house for the Infusion Center at Wilmot.  The Rituximab is given at the rate of 300 along with a solution to keep me hydrated.  I have to go pee about every half hour.  I’ve learned to dress accordingly!  My CBC counts are up at the moment—9 .7 hemoglobin and 28 hematocrit.  Cold Agglutinin Titer 128.  My stomach area still feels cold on the skin surface and internally so I’m trying hot teas and essential oils to keep that area warm.

Recommendations: Now I’m on Rituximab I’m very careful to wear gloves when in public places, use lots of hand sanitizer when anywhere out of the house, will start to wear a medical mask as the cold weather continues (husband insists), and stay away from large group gatherings to reduce the risk of contracting an infection, or virus that will set me back.  I drink lots of water so being around a bathroom is definitely necessary, and I am the opposite of constipated.  I become tired very easily — 2 hours is about the maximum time I can spend on physically demanding activities.  Depression has been a daily threat so I meditate daily, journey frequently, and also see an acupuncturist bi-weekly, which helps with energy flows.  I also have “chemo brain” meaning it is hard for me to access long- or short-term memory due to the chemotherapy treatment.  (That is also a symptom of CAD.)  It is expected that my CAD response to the Rituximab will be seen in CBCs within a month after the last infusion, and the effects of Rituximab will last a year during which time, hopefully, the pesky antigen is defeated or in remission.  I highly recommend that even if your hospital or doctor does not offer an Internet patient portal where you can view test results online, get a printed copy of all blood work results so to keep track of your relationship between counts and symptoms.  Keep a journal or list of questions and symptoms to go over with your haematologist — very important.

I’m not in denial or angry about having CAD anymore.  I accept it and am moving on.  I will update this story of Cold Agglutinin Hemolytic Anemia.  Medical leave is set to expire December 31st , 2016 and I hope to be back at work by then.

Carole Myers-Rakes
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