Tuesday, September 27, 2011

Mood- spiraling the drain
Health- somewhere near the u-bend


Days like today make it harder than hard to keep on fighting.

This morning I called the Gastroenterology clinic at VCU once more to try to find out why I have not heard anything about the tests that were supposed to be scheduled... and EGD and a small bowel follow-through to try to discover why I cannot drink fluids.

The first call went to a voice mail which I have left numerous messages on in the past in the vain hope tat a person might call back.  Then I called back and pressed O bypassing the menu completely to speak with a real live person.

It seems there was no record of all the calls I have made trying to find out when these tests were supposed to be done.  I reminded them that since I was to see the GI again on the 21st of October that these tests could not wait forever, since the reason I was going back was so we could go over the results.  I was then informed that the Dr had my appointment date moved to December!  I am glad that I found this out, because no one bothered to call me and tell me that they had moved the appointment and I would have showed up only to discover that the 180 mile round trip was useless because they would not have seen me.

I put in yet another request to find out when my tests were to be scheduled (there is nothing in the system even saying the tests were ordered) and to find out the results of my blood tests.

This is NOT the first issue I have had with the VCU Health System...

1. The GYN I saw there to have my large septated cyst removed not only refused to operate because I am a poor surgical risk but she also stole my only CD copy of my abdominal CT's and Gastric Emptying Scan.  I told her it was my only copy and she asked if she could borrow it to have it copied to my files swearing she would return  it to me.  She never did and soon after left VCU to move to California.
2. The same GYN put in my medical records that I self injected progesterone into my hip every evening!  I have NEVER done this, and having that in my records could have had fatal consequences because I have a heart condition and had I had a cardiac issue and they checked my files they would have treated me as if I did... which could have been FATAL!
3. Same GYN insisted I get a hormonal IUD even though I had a life threatening PID (Pelvic Inflammatory Disease) with rupture in the past and when I checked the manufacturer I found out that since I had a PID I should NEVER get another IUD... the GYN said it would be fine.  The hormones in the IUD were also contradicted by many of my health conditions "nothing to worry about" she said.... I refused.
4. Same GYN then decided that the birth control shot was the way to go... even though the same medical conditions were contradicted by the manufacturer.  I refused.  (The IUD and shot would do NOTHING for the septated cyst that kept leaking and I still have no clue why she was insisting on them and not treating the cyst!!!!)
5. I had a surgical consult to discuss having my hernia repaired at the same time the cyst was to be removed... before seeing the GYN.  Without telling me that appointment was canceled and I drove all the way there to be told that I would not be seen.  A completely wasted trip.
6. The Gastroenterologist told me to EAT FRUIT to try to battle my chronic dehydration!  Knowing that I have Gastroparesis he told me this... after telling me that Gastroparesis was not something that was treated at all except with Domperidone which is not available in the US.  Fruit is a MAJOR no-no for those with Gastroparesis due to the high fiber content.
7. When discussing the fact that I could not drink the Barium oral contrast because of the artificial sweetener used (all Barium oral has artificial sweetener) he called to the radiology department and confirmed that I was telling the truth then asked what could be used instead.  It was decided that I would (now get this) drink IV contrast dye to get the study done... even though I am allergic to all IV contrast!  He said it was not an issue and since it would not be injected into my vein it would be fine????   Funny, last time I checked if you are allergic then you are allergic, but I desperately need the small bowel follow-through and was willing to take the risk as long as a crash cart was handy.

After all of these MAJOR issues with VCU I have decided not to ever return there... it is just not safe and I cannot trust them, which is sad since that is a teaching Hospital and this is the kind of crap that goes on there it does not give me much hope for the future of medicine.

My only other option for Healthcare is UVA... which is 4 hours away and would be even harder to get to because of the cost of gas on my husband's unemployment.  I know that they have the same indigent care program as VCU and I am going to try to see if I can be accepted but I do not know if it is really worth the fight anymore.

My health is declining... the pain in my abdomen is getting worse and worse with sharp stabbing pains... the nausea is unrelenting and I wish I could vomit and would give anything to have that ability back... the distension to my abdomen feels like I am being torn in two, the skin burns so bad... the ringing in my ears is keeping me awake all the time... the dehydration has my flanks aching hard like nonstop punches... I can't think half the time and am having debilitating mood swings and snapping at everything and anything because I just cannot follow what is being said and it is so frustrating.  My heart just keeps going into v-tach stealing my breath and when I try to sleep the quivering of my muscles shake the bed jarring me awake...

Yes, I know... I will bounce back and fight my way through this... but right now I have a wounded spirit and have given up.  I am so tired... I just do not have any fight left right now.  

It just should not be this hard to get treatment for a known condition or known conditions... it should not be impossible to see Doctors you trust because you lost your insurance and became no more to them than human garbage... to be told "come back if you ever have insurance again".  

I do not deserve this...