" HELLO "
Well the only people that will see these pages are Family, and I guess all or most of you know about me, the condition I am in, but I am going to put it down here.
" In Dec. 1997 I started to feel weak in Legs and Arms, some double vision, (double vision didn’t last long) I started making the rounds of Dr’s, got brain scan Ect. All negative. I keep working.
In June of 98 I had a Nerve Test (EMG?) and was told I had some Nerve damage. Nothing was really done until Dec. of 98, I had to stop working, I couldn’t walk without canes (two) or Crutches along with someone helping me do just about everything, I had to leave my job (Truck Driver/Owner Operator) and started seeing a Neurologist on a regular basis. I am now 60 Years Old.
In Feb. 99, after receiving a Spinal Tap (Lumbar Puncture) test my Neurologist Told me I CIDP and started me on 60 megs of prednisone Per day, and with all the other medication that goes along with taking a steroid, something for to stop ulcers, calcium for bones ect.
While taking the Prednisone, I started to feel stronger, not 100%, but a lot better than I was in Dec .98 and early 99, only down to one cane or none at all some times.
In July I was cut to 40 Megs of predistone and began IVIG treatment on a monthly basis. (Didn’t and doesn’t seem to be helping any) At this time I went back to work, however, in Aug. 99 I developed a Yeast like infection in my throat. I was sent to an Eye, Ear, Nose and Throat Doctor by my Neurologist. The Throat Dr. gave me a medication (swish and swallow) to gargle with three times a day. The infection abated, but in early Nov. 99 I noticed a lot of congestion in my chest, and was starting to feel much weaker than I had been, and was sent back to the same Lung Dr., Who after Xrays sent me to the Department of Health, for TB test, because my lungs showed all kinds of scaring of some sort and he wanted to rule out TB. (It was ruled out) I then went in for CAT Scan and a Bronk, where a culture was taken from lung.
During all this time, I never had any kind of pain, just weakness, shortness of breath, stiffness in my joint, Legs would come out from under me, but no real pain to speak of. In early Dec. 99 I kept my regular Neurologist Dr’s Appt. and was told by him the he hadn’t received the results of the Bronk Culture that was taken by my Lung Dr., I had to stop working now as I couldn't even get in or out of My truck and was falling down all the time, couldn't walk ect. I was really feeling bad, weak, back to have needing help in everything I did, Toilet, Shower, Tub ect. In addition, that same night that I had my Doctors Appt. I could not sleep with shooting pains, starting from my feet and shooting up to my arms. (I was told later that these were phantom pains)
My wife called my Dr. at 3:00 am and he told me to come into the Emergency Room ASAP, but I couldn’t get there until later that afternoon, (needed more help then my wife to get down stairs from my home.) When I got to the Hospital, I was given a shot for pain, blood work was performed and I was admitted as an In-Patient that was on Dec.10th, 1999 and I do not remember anything from the time I was admitted on Dec. 10th, until Dec. 23. When I woke up, I was in the Intensive Care Unit. And when I did wake up, I was on a respirator, I had numbness in both feet and legs. (Still numb to this day) I was on Heart Medication, Insulin for Sugar (never had problems before) I was told then that the Yeast like infection that I had in my Throat, had gone into my Lungs, they didn’t know what to treat it with, as the culture they took, in Nov. took a very long time to grow.
(They tried all kinds of Medication while I was out and in Intensive Care) Finely they came up with the right Medication. I was told all this came about by the Steroid Medication Predistone that I had been taking for almost a Year. At this time also they were concerned with a spot in my Lung. This Spot wasn’t there when I had Cat scan in Nov. 1999) On Jan. 4th, 2000, I was transferred to another Hospital to get the spot in lung checked out and for Physical Therapy (In-Patient) as I couldn’t do much of anything at all, even wipe my own backside. At this Hospital, they determined the spot was Oat cell cancer, and had an EMG done, and was told my nerve damage was worse than it was on previous test, and that I would start on Chemo Therapy for the Cancer, and that I was too weak at this time for any Physical Therapy Treatment.
I was released from this 2nd Hospital ( St. Joseph's Candler ) on Jan. 14th 2000, I was weaned off of the Prednisone, did four rounds of Chemo Therapy, Plus 10 radiation treatments, those treatments and the lack of any Prednisone had me in bed and a wheel chair, I was still doing my IVIG Infusions (no help) so I stopped as of Aug. 2000. Because these treatments weren't helping and the cost, ($8500.00 per Treatment, 5 Treatments a Month. My Insurance Company's way of Paying, $ 42,500.00 Per month, They pay 80 %, 34,000.00 and I am responsible for the Bal. approx. $8.500.00 per Month) ( It's Bankruptcy Time )
With the effects of the Chemo subsiding, I’m back to using crutches to get around, still need help in dressing, toilet ect. I lost all the weight and then some from what I had gained from when I was taking Prednisone. (180lbs down to 125, (147lbs at present time.) My Cancer has been reduced 70%, but I will do no more ChemoTherapy or Radiation of any kind, what will be, will be.
I am in much pain all the time, Legs, knees, elbows, shoulders, you name it, cannot eat like I used to, Also I'm sorry to say, I CANT DRINK LIKE I USED TO EITHER, cannot go to toilet without a laxative, But I'm no longer taking any Heart Medication or being treated for sugar, That all went away when I was weaned off of Prednisone.
I’m mixed emotions about the Prednisone, It did do me some good early on, but I suppose the right dosage for me wasn’t found. The dosage that helps the CIDP but does not cause infections, Joint Pain ect. Anyone on Prednisone should be aware of this; there is a right dosage for you, but Beware.
Now I cannot do very much for myself, My Wife and Kids do most of it for me; you name it, they do it, I'm still on Crutches or canes, sometime back to the wheel chair. It depends; some days are better than others. As you can see, I am on the Computer more now, I got tired of just sitting on couch and watching TV, couldn't even do that until I had cataract operation on both eyes, that also caused by the medication prednisone. Only one eye is good now, I'm useless, not a dammed thing to look foward to, I think it would be better for I and everyone concerned if I would just go to sleep and not wake up, Like my brother Mike. I look forward to that day, the sooner the better. "
Feb. 02, 2001 |
