Thank you all for your prayers and concern.
Many of you have asked how I am doing, I have not responded for several reasons: First it fluctuates. Second it is often difficult to dwell on, articulate, and repeat; especially in moments which I am struggling to maintain some sort of resemblance to normal life. Third sometimes the children are by and we have worked hard to maintain the balance between needed information and outright fear.
Below, I will attempt to briefly summarize what happened and where we are now; plus apologize for any slight. Also, due to the public nature of the blogging forum, some issues and side-effects I will not discuss; this does not mean I am not having them. So please continue to pray against side-effects and complete physical restoration from those suffered. Thanks.
Let me start with, I think we are seeing the light at the end of the tunnel.
Many of you know that I have passed out from time to time since college. At first it was thought to be a blood sugar issue coupled with the feminine cycle; however, after several repeat performances over the years I was seen by a neurologist – brain tumor and seizure disorders where ruled out and we received a comforting diagnosis: low blood pressure, prone to fainting when the body is under severe stress. No big deal! I have learned how to “detect” my pre-faint symptoms and except for a rare few, circumvent the faint.
Enter in the anemia. Prior to the birth of our oldest (he is now 12), I was told that I was “slightly anemic” and that it was no big deal – just to eat more spinach and to cook in an iron skillet. I ate spinach; the iron skillet was too heavy for me to lift so it was ignored.
I suffered two miscarriages, an accident at work, and was a passenger and pedestrian in several car accidents. The doctors had commented that they could not understand why it took me so long to heal. They tested for nerve damage and then Fibermalgia both came back negative – no one tested my iron.
Our oldest was born and I suffered another miscarriage. I started loosing my hair and I was always, always exhausted. I was told that was normal for a new mother and to try and nap when our son did. We moved to Ohio. I passed out a 5th time and severely bruised the front of my head and injured my right eye permanently.
We went to Israel 2x and I singly drove our son back and forth to PA and CT from Ohio in order to visit family while Chuck was in Israel. Fainting was not an issue, exhaustion was constant, and the hair lose was now considered normal.
Our youngest was born (he is now 6), we moved to SC. Exhaustion was extreme but considering the craziness of our move and the fact that our youngest was ill and undergoing multiple neurological tests all by the time he was 6 months old – we considered it normal.
I was constantly sick, exhausted, and cold (the guys would be in shorts and I’d wear jeans, long sleeves, and a sweater in the SC sun) – we deemed the sickness and exhaustion to recently developed allergies and the aforementioned stress, being cold just weirdness.
We moved to Georgia.
When our youngest was 4, I was sick yet again.
I do not like to take the children to the doctors with me as that would require them to sit in the waiting room when they are actually healthy. I don’t like that they often seemed to catch whatever illness had been treated that day. Remember that in SC we were always at the doctors for our little one, and one time he literally caught everything in the office and almost died – so although it is somewhat a ridiculous fear it is one that I do have, and I avoid taking them with me.
I had had a fever for over 10 days and since my parents were visiting they pressed me to go. Although, I was not a new patient to the practice the doctor was new – he ordered a full workup. My iron and hemoglobin did not register on the results. He began iron pills immediately. Within a week I started feeling the difference! Almost nill side-effects and within a month we noticed significant reduction in hair lose, I started to feel human – I felt like the woman who had touched Jesus’ hem. Healed.
The doctors however, wanted to determine the cause of this extreme anemia – and ordered tests. Cancer and internal bleeding were ruled out. Time and feminine issues seemed to be the culprit. A hormone was prescribed, after completing the first 8 days, I had a shooting, single pain in my heart, it was momentary and nothing else seemed to happen – I completed the prescribed 10 days and had another shooting pain.
With no obvious difference and due to the shooting sensation, a different hormone was prescribed for the next month. On day two of the medication I had an eleven hour atrial fibrillation episode. In the AM, I called the doctor, they told me to contact my primary care and then the obvious, “stop taking the medication” and to have it put on my medical record that I was not a candidate for hormone therapy.
I called my primary care and due to lost phone messages, and overbooking they did not see me until exactly one week later – my ECG was still severely abnormal – they started me on baby aspirin and had me carry nitroglycerin. I saw the cardiologist, he administered a stress test, I passed out but still passed the test and was dismissed.
I noticed an extreme reaction to any heat and repeated atrial fib where occurring in a cyclic manner – so I went back to the cardiologist several times – he told me to carry the nitro and that I would have to live with it until menopause; he’d see me in 9 months.
I got another doctor. He reviewed my medical record and labeled the fainting as syncope.
He told me to never take nitroglycerin, because with syncope it was deadly. Then placed me on the 30 day heart monitor.
He mentioned that most of the time when I pushed the record button nothing appeared wrong, but at least one episode of atrial fib was record on self-record mode. He referred me to the electrophysiologist and put me on a beta-blocker.
The beta-blocker was horrible – mental confusion, no memory, a return to extreme exhaustion, I got lost driving locally, I couldn’t read picture books, I had to focus so hard on any task that if someone said hello to me without actually being in my face I had no clue (sorry, I truly did not mean to ignore you), if someone did get my attention often I could not converse as I was trying to keep an eye on my children, could not formulate the words I was trying to say, or could not honestly remember anything they had just said two seconds ago (sorry again, if I appeared rude or indifferent). And those where just the mental side-effects not the insomnia, constipation …
They switched me to a calcium blocker – all of the above still applied, but add in blood spots, most appeared all over my skin – but some started appearing in my eyes and my vision was greatly distorted and my eyes hurt, atrial fib episodes increased. I was told to return to the beta blocker and if I could keep my heart beat below 100 on that; then I could keep my scheduled appointment; if not, be seen immediately.
The 1st three weeks of the beta blocker are the worst; I had some things I wanted to participate in at church and with the boys. My heartbeat was staying below 100 without medication, so I thought I’d just wait a week before restarting the beta blocker. This was an extremely unwise decision of which the results where not good. I called the doctor; he prescribed a different medicine and mentioned that the ablation might not be avoidable.
This 3rd med was by far the least disruptive with mental issues, although I still could only focus on one thing at a time, writing and speaking were still difficult, and heat was becoming more of a problem, I had begun losing my hair again on med two, and like med. 2 rapid weight gain was an issue with the added benefit of mood swings.
Enter additional stress, at the end of September, Chuck flew up to CT to help take Mom to Boston for her ablation, she made it, praise the Lord! But I think it was more stressful having to being left here and not knowing what was happening. Other stresses followed and soon after my grandmother died. I flew to the funeral, I had some issues but considering the meds and the situation, I thought I had done well; I passed out on the plane home on Sunday.
The following Thursday night I had the stroke type symptoms – extremely hard to describe other than to say I felt extremely weird and had very odd sensations in my right eye and right leg. We kept taking my pulse and blood pressure – I had specific instructions as to when to go to the hospital – I did not meet those criteria. I called the doctor in the AM. I talked with the nurse and she kept telling me I should have gone to the hospital. Finally, she clarified that the information I had been using to judge if I was to go to the hospital was for heart attack and atrial fib not stroke; being that what I had described was possibly a stroke, I should have gone to the hospital.
The doctor was not in, but I would hear from him on Monday – I called Monday, then Tuesday. I talked to the doctor – then Wednesday had my testing.
It was determined that an ablation at this time would have not resolved the issue and may have caused more damage, not to mention unnecessary risks. It was also decided that possibly we had been treating the wrong thing.
Due to the initial severity and length of the atrial fib apparently my neurovascular syncope was no longer an irregular annoyance. In fact the two things appeared greatly linked – low blood pressure causes pooling of blood in the legs, compensated for by increased heart beat – which could lead to fibrillation, fibrillation leads to pooling of the blood and less blood getting to the brain, which leads to syncope episodes. Too many episodes or lengthy episodes can lead to Sudden Death Syndrome and/or seizure disorders, stroke … (worse case scenario)
Since, atrial fibrillation started this whole thing that was where treatment was focused. Untreated atrial fib can worsen and lead to ventricle fib (the one that causes the deadly heart attacks), and all fibrillation can cause blood clotting resulting in stroke – again worse case scenario. However, treatment is to thin the blood and slow the heart; equaling less blood to the brain triggering syncope.
Round and round we go. I was obviously getting worse and the stakes were getting higher.
I am now on a high blood pressure medicine (go figure) in an attempt to treat the syncope. The hope is: get the now way out-of-control syncope back to a manageable state and hopefully in the process fix the atrial fibrillation and avoid the ablation.
If you do enough research you will see that if the syncope is not controllable via medication a pacemaker is the next step – we are praying against this! We are also praying that the syncope will come under control and solve the atrial fibrillation.
The doctor has warned that since I have been dealing with atrial fibrillation for about 2 years now, that it may not be so cured. He did however, express the hope.
I now have the fun of rebuilding my physical body from the 9+ months of fib medication and the possible stroke – I was told it could be likened to what is termed ‘chemo brain’ and that in time, usually about a year, I should be mentally restored to pre-med status – hopefully that includes complete restoration of my sight, hair retention, and restoration from the other side-effect spawned issues.
So – how is the new med working? Well, I am entering my second week – they told me it takes 2 weeks to get into your system completely. So far it does not appear to be doing anything, but again it is too early to tell.
I have a wrist watch now, that accurately measures my heart beat – the higher the pulse the lower the blood pressure in this case. You want to maintain about 60 to 80 at rest. Again, if my pulse goes over 100, I’m in trouble and have to be careful as I need to watch for fib, syncope, and now stroke. It fluctuates so fast – to give you an idea – today in less than a 5 minute interval it went to 110, (laid down to avoid syncope) 187, 97, 83, 104 … stayed in bed until it stayed between 83 and 94 for at least 10 minutes.
Obviously, such drastic swings are not good for my heart, blood vessels, or peace of mind – so please continue to pray for healing, restoration of physical issues spoken and unspoken, and peace. Plus if complete divine healing is not the answer, please pray that the correct medicine will be found soon (with no side-effects – yes, I believe in miracles), to control the syncope and heal the fibrillation all while preventing strokes.
Our God is mighty and if He chooses to answer the above requests I could be completely healed in a year! Completely, healed would mean the syncope was under control and I wouldn’t even need medicine for it, an occasional iron pill (about 4 a month), and no fibrillation or strokes! This is what I have chosen, through faith, to believe is in store for me.
My family and friends are awesome. Thank you for overlooking any offence due to my scatter brain and for all the offers of help. We still may take you upon on them as I have been warned not to drive during certain times of the month or if I need to go to the doctor for both heart or side-effect issues and all of Chuck’s vacation is gone.
Thanks again,
Krista
