Tag Archives: hematology

My Visit With My New Doctor & Compliments to Lake City, FL VA Hematology Clinic

I had an appointment at the Veterans Clinic in Lake City, Florida today. I was a bit apprehensive about this appointment because I have a new Primary Care doctor. Those who know me know that this is my 5th Primary Care Doctor in the past two years. I have never had so many doctors, in such a short time. What happened was the doctor assigned me when my old doctor got promoted quit because she did not like all the computer BS the VA makes the doctors do, and they had a hard time replacing her. Of all these doctors, I only saw one, back last year, for a whole 5 minutes. Needless to say, I felt like I was being put on the back burner, all the while my health kept declining from an already diminished state. I was in and out of a local private hospital because the pain of the pancreatitis, which they now say is chronic, was too much for me, and the medications I had would not touch the pain. The last time I was hospitalised, June of last year, on top of all the medications I take routinely, they were having to give me 1.5 mg of Diladud every 2 hours. I was very miserable until it cleared up. I could have taken care of things at home had I had something for the intense pain, other than what I already take for the myriad of problems I have. Moreover, I were in the middle of a dose adjustment when the doctor who was supposed to be my new doctor quit. I did okay, for a while, then I needed another adjustment, yet had no doctor who knew me to call on.

The Primary Care Doctor is very important in the VA system. They are the proverbial Quarterback of the team. When you have a severe health problem you do not want second string replacements, you want a real Doctor who is going to stay, get to know you, and you them, so as to develop that special relationship a severely ill patient needs with their doctor.

I am glad to report my new Primary Care Doctor seems to be a good one. It is going to take time for her to get to know me, and understand fully my problems, but we had a great start today. She did not pull any punches with me, and gave it to me straight. I respect that. Moreover, she discovered some medications I had been taking for a long time that are not exactly good for a man’s prostate, and discontinued them, lest I develop prostate problems. I appreciate that. I go back in 3 months. I will see how it goes, but thus far, all is good.

My blood has been tired for over six years now. I had a significant GI bleed back in 07 that created many problems for me. I want to take this time to tell whoever reads this how nice, compassionate, professional, and efficient the Hematology Clinic at Lake City has been to me. I truly appreciate them. Of note, is a nurse named Amy, and an NP named Ruth. They have bent over backwards to accommodate me, and I am truly grateful. Stacy deserves an honorable mention as she is another one who has helped me. Kudos to these front line troopers. The VA needs more like them, especially Amy, and Ruth.

As I have mentioned, my health has been giving me fits. I now have chronic pancreatitis, and it hurts like hell. Most of the time, about 70 percent of the time, my regular meds work, but the rest of the time I am in sheer agony. I had to go to the ER last month for a pain shot. I also am dealing with the crohns (from Accutane given me for my service connected disability), the effects of 11 abdominal surgeries, 5 surgeries to repair a broken bone in my face (Army injury), sacroilietis, fused disks in my neck, myofacial syndrome, osteoporosis, joint pain (severe in my hips), and neuropathy. I am dealing with more than this, but to list it all would take more space than I wish to use. Suffice it to say, I need your prayers, if you pray. Anyone wishing to send cash, that will help too, although it will not take the pain away. I have been in constant pain now for 25 years, 15 of those being severe up to now. I hope that together my new doctor, and the pain team can come up with a workable, practical, and EFFECTIVE treatment. I am grateful for what I have now, but I know they can do better.

Thanks for stopping by!

mark

ENJOY YOUR FREEDOM? THANK A VETERAN!

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Filed under Crohns Disease, Life as a Disabled Veteran, Personal

My Coma – Time To Start Talking About It

July 2007 was not a very good time in my life. The 20 prior years, of dealing with severe Crohns Disease, along with injuries suffered while in the service, were very rough, and challenging, so I should have been able to handle what happened more easily. I have not dealt with it very well, and my docs just do not get it. It bugs me every day. The experience of the ordeal, and the fallout, on my mind, are challenging to over come.

To speak of what happened in basic, general terms is difficult. It is difficult because I am still not over it. I will take a stab at it, even though I know I will only be able to cover the tip of the iceberg. I guess I need to start somewhere, start healing in some way, more than I have healed, to this point.

I woke up toward the end of July 2007 naked, tied to a hospital bed. In my mind I thought I had been captured by the enemy, and placed in a POW camp. When I realised I was not in a POW camp, I began to think I was being held in a government facility, and being experimented on. What I thought was reality at the time turned out to be anything but reality.

I know. Why? Why did I wake up naked, tied to a hospital bed? Two weeks prior to this I was taken by ambulance, to the local hospital, admitted into ICU, and put into an induced coma. Looking back, in retrospect I know now what happened; however, at the time, I was out of it, and did not know it.

The Veterans Administration (VA) had been taking care of a real nasty flare up of my severe crohns disease. I had been losing blood due to inflammation, and got to the point where I needed blood treatments. I had two really bad things going on at the same time, and the treatments for both wound up compromising my health severely. Without going into specifics, I was out of my head due to brain swelling. I had brain swelling because my liver failed, and my body started filling up with toxins, namely ammonia. My blood ammonia levels were about 500% above normal, and this caused encephalopathy (brain swelling). No one knows for sure how long this was going on, but I can say this much about it. I cannot recall much of the year prior to waking up naked, tied to a hospital bed. Apparently I had been driving back, and forth to the VA Hospital for treatments, meeting with, and talking with people, but I do not recall most of it.

The local hospital put me in the coma because they needed me to be still, not fighting with them (apparently I tried to leave the ER), not trying to pull out IVs & tubes, and it was going to be easier for all parties to just put me under. They also did not know if I was going to live. I have been told that for the first 4 days they thought I was gonna die. My wife told me that a doctor called her in the middle of the night, the second night I was there, and told her there was no reason to continue treatment because he had seen cases like mine in the past, and I was going to die regardless of what they did. Thanks to God for him being wrong.

I remember small bits, and pieces of the actual ordeal; however, when they put me in the coma my mind started dreaming. I dreamed an entire new life. I had a different wife, lots more kids, and was a truck driver, of all things. Instead of being an ex Forward Observer, in the Army, I was retired from a career in espionage: yes, I was a spy. I lived an entirely different life than the one I awoke to. It was as real as reality is. In my coma dream everything was vivid. I could see, feel, smell, touch, taste…get the point?  Sliding back into this reality was difficult. It is almost as if I have lived two different lifetimes. Sometimes this disturbs my mind, and I get a bit anxious. I am coming up to the 5 year mark, and sometimes it’s as if it happened yesterday.

I still remember my actual wife (this side of the coma) sitting on my bed asking me if I knew who she was, and me telling her “I don’t know who you are ma’am.”. I did not even remember my mother. Slowly things started coming back to me. The doctors were talking about placing me in a nursing home, and I did not like that too much. It was at this point what I did not remember, I faked, so I could get out of the hospital, and not go to a nursing home. When my blood values came back to earth, and they realized my liver was working, I was allowed to go home.

I had a long way to go. Not to my home, but in my recovery. Most important to me, at that time, was my strength. I lost 70lbs in 14 days. I could not walk very far, and needed help getting up.I was determined, and knew I could do it at home because I had been without my strength in the past from repeated abdominal surgeries, and had always rehabilitated at home. The mental part was different. I had to be exposed to things to remember them. I have gotten much of it back, but there are still some gaps. I do not think I will ever remember the time period from May – July 2007. I have my hospital records from the twice a week treatments to help, but most of it is a blur. As I have already stated, I still struggle with how real the dream was. The coma dream was as real as reality is, and there are parts of my so-called real life that is still blacked out. It sure has not helped my sleeping problems get better. They have gotten worse.

As for the coma dream, it was very real to me. I cannot help but think of the song, “Row, row, row your boat, gently down the stream. Merrily, merrily, merrily, merrily, life is but a dream”, and ponder if this too is but a dream………..

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Filed under Crohns Disease, Health, Life as a Disabled Veteran, Personal, Veterans Issues