Stories 2012

2012 starts here

Kristie’s story

My name is Kristie and I was diagnosed with CAD in 2010. I was 27 years old and 8 months pregnant at the time with my 5th child.

At the time no Dr’s knew anything about what was happening but I do remember huge amounts of blood tests and the thought of leukemia floating around which was quite scary…….they decided to induce labor at 38 weeks as they weren’t sure how the extreme anemia and symptoms would affect my unborn baby, he was born healthy but put into special care for 5 days due to breathing problems (I don’t know if this was a direct result or a problem of his own).

About 4 months later I was given the diagnosis of primary CAD and continued to see a hematologist for about a year or so until everything settled down and I was sent home with a ‘stay warm’. I’m actually lucky as living in Queensland, Australia it’s a warm tropical climate so my symptoms and issues are quite controlled most of the time.
I have 6 weekly blood tests to make sure things are going along as they should.

April 2012 update….
Pregnant with number 6 (27 weeks along).

After consulting with a gynecologist before I started ttc I was advised to plan the first part of my pregnancy over the warmest months to give the best chance of growth.
I fell pregnant a month after but had an early miscarriage which happened to coincide with an increase in CAD symptoms. (I’ve never had a miscarriage before but it can’t be truly pinpointed to being caused by the CAD).

Anyway we fell pregnant a few months later and so far all was well….I’ve been closely monitored since about 8 weeks including fortnightly blood tests and ultrasounds etc. Now though I’ve been feeling increasingly worse (we are heading into winter soon) and my hemoglobin levels are rapidly dropping….lots of headaches, fatigue and a general unwell feeling as well as lots of bruising.
Not too sure what the plan is at this stage except for preventative measures like keeping warm and hot drinks, vitamins etc.

Will update as I know more……I hope my story helps those with pregnancy CAD questions or just shines a light on my life with CAD.

Kristie
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Karen’s story

I  am 60, female, and very active.

My husband and I are both retired, and have traveled to various places to explore and hike, kayak, and visit the USA National Parks.

During a hike on a rather chilly day my husband looked at me and said I have something on my nose, and cheeks, he said it looked like blue/black ink or something.  I checked my hands to see if maybe I had touched something, and of course there wasn’t anything on my hands, but I noticed that my fingers were also a blue/black color.

This seemed very strange and startling to me, and I couldn’t seem to find the answer(?)  Then I had become extremely tired within those next few days, which I knew was a red flag for me.  I went to my family doctor, and she directed me to Vanderbilt Hospital in Nashville, Tennessee.  I was admitted and given many tests to rule out any hepatitis, west nile, tick, and other tests.  Finally they did a bone marrow test to check for leukemia, and that was ok, no cancers.

My blood was an issue as they were concerned with the very low numbers, especially where my “red” counts were dangerously low. I received the first of many transfusions, the first couple of days I felt weak but somewhat better, and that didn’t last.  I was sent home once my number came back up to 10, and it was only a few days after that I was re-admitted to the hospital, where I was given more blood, and it was my first infusion of retuxin.  My numbers had improved but still needed to come up more.

I was released from Vanderbilt once more, and was scheduled to return for another retuxin infusion, and then had 2 more treatments. These were done as outpatient treatments at Vanderbilts onocology center.  All of this happened this year(2012). It was at the end of April that all of this had been addressed and treated medically, but I would say there were probably hints of “red flags”, going on right along for a while, and I would pass it off as maybe not getting enough rest, or maybe I need to take more in my list of supplements(?).

Little did I know that something so strange and startling was bringing me down.  I am now happy to report that I was in for my counts, and check-up on June 27th, 2012 and was thrilled to be told that my numbers had all come up, especially my “red” count, it was at 11.3 I will go back again on July 30th, 2012, and they will take another look at where I am with all the numbers, and if all looks as it is suppose to, they will stretch out my visits to every 6 months.

Right now I am feeling really good, all the symptoms have seemed to have passed (either temporarily or permanently). I only know that I have to keep warm when in air conditioned places, and focus on rest, and eating well, and of coarse I have several supplements that I take daily.  The weather where I live is not an issue in the warmer months. It stays warm from May to September, and trails off to a bit cooler in October.  My husband and I are going to Fla. in September to vacation, and while we are there, we hope to check out the condos that are furnished to rent during the cold months we get.

I  can’t think of anything else to share, except there is one supplement that I would like folks to consider taking it is a “food” supplement, it is cayenne pepper capsules, they come in different “heat” units, from 40,000 heat units and higher.  I have taken these for years to “help” warm my feet and hands, and generally improve my circulation. Trust me, this is something valuable to those of you who have problems in these areas.  It is always a good idea to mention this to your doctor, in case there are problems you may have medically that would keep you from taking this.

I would like to say it’s wonderful to have a support group for many who are in need of information. I really felt very stressed and scared when I realized how rare this condition is.

I appreciate all the help that this website has provided. Bless all that are looking to recover, and to stay well.

UPDATE – 7 December 2012
I am writing this from Vanderbilt University Hospital in Nashville Tennessee. It’s where I have been for the last 5 days as they needed to transfuse again and start another series of rituxin treatments due to a sudden nose dive of my hemocrit levels and the other vital numbers as well.  Today I may be released as my response to blood and treatment has been very good.  My jaundice is fading and I can breathe again without difficulty, This cad is not an easy thing to constantly deal with, and I try to manage a decent attitude (as I find it hard to totally accept at times), anyway I just wanted to give you folks an update, as I realize somebody keeps up with recent medical activity going on with the cad group.

Karen S
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Lauretta’s story

Dear CAD’s and CADettes!

How wonderful it was to discover kindred souls even if through a little understood hence accursed medium of the computer. I’m in my 88th year so unless the medical industry gets going on a solution, my story may represent the future of the C&C corps.

You’d think that with six kids some would opt for a warmer than 49 degrees north latitude. After we retired people used to ask about our winter travels and gasped when we said “Rochester, Minnesota” in January to celebrate a cluster of birthdays. Too bad about the minus forty degree windchill.

Our daughter and her husband work for the Mayo Clinic so that when I refused a shopping trip to the storied “Mall of America” because of a back ache they ran me through triage and 4 days of scrutiny at the end of which it was concluded the back problem was a question of posture, exercise and a support garment, but raised for the first time the nature and dangers of say, what? Cold Agglutinin Disease??

It started with hands and feet and spread to ears, nose, upper lip, and tongue. Increasingly, when shopping for vittles I find it necessary to thrust the loaded shopping cart at my husband for the “check-out” while I high-tail for the controlled climate of the car. So far the symptoms have been reversible.

We are permanent guests of our youngest daughter’s “carriage house”. Not only under her scrutiny but beneficiaries of the knowledge she has acquired ancillary to her work with the accuracy of billings in a major medical facility. When I bundle up as she would have me, I break into a sweat even while the extremities are “CAD”ding. It’s been a long time since my husband has suggested a burkah, He’s even grown a beard so that we could be a matched pair.

In past visits to the frozen north, we have maintained contact with the Mayo doctor who managed my case. No changes, no new discoveries, and to my chagrin, nobody even wants my body for research when I’m done with it. Our eldest (son) has mild Raynauds which is controllable by no more deer hunting. Our fifth child (daughter) may become a candidate for CADs.

In our funeral planning I lean towards cremation: warm at last! When I was a kid I loved to sit on the radiator to get dressed or even do homework. My husband has other problems like holding out to 90 when haircuts will be free!

Lauretta Kurek
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( When forwarding this, Lauretta told us:
“Just recently found your website, while I have struggled with CAD for more than 20 years.  I was thrilled to find that I am not alone and would love to share my story in the attached document.”

………we love her sense of humour!)

 For stories from 2007 (with updates) Stories 2007
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For stories from 2012 (with updates) Stories 2012
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