Playing Your Fortune!
Now Playing: Day 733-The Final Road To Survival
Another week quickly comes and quickly goes...Today marks my last of many appointments this week with my specialists. I went to sleep earlier than usual this morning. 4am is early for me compared to my typical time between 6-7am. I have a few additional days of medication to finish up since they have me down from two to just one pill a day. If there was any slight sign of infection anywhere in my body it is surely gone by now however all the blood work so far has come back negative. I assume they still want me to finish everything as a precaution.
I see my new specialist today-Nephrologist. Their office is not too far from my home but since it is Friday and my appointment isn't until 4pm we decided to leave a bit early. Since I start back treatment again tomorrow there are quite a few errands we need to run before and after my doctors visit. The fur kids at least got to enjoy time in the backyard before we left since they are predicting rain to come in later this evening. Looks like this might be a rainy and warm weekend stuck home with Mr. Drano.
They gave me directions to the doctors office earlier this week however once we got off the exit they took us the wrong way. Thank goodness we were running a bit ahead of schedule and the work traffic wasn't bad yet. The office was very large and roomy. It reminded me of an open floor plan and since I have seen my fair share of doctors offices this one was white, bright and cheerful. Nice for a change! The office staff wasn't the unorganized group that was on the phone earlier this week as I found out that was the central scheduling office. No wonder they had me running circles to get into a new patient appointment and it all finally made perfect sense! I filled out some typical medical and insurance forms then within five minutes my doctors assistant called me back into a room. My other specialists had already faxed over all the test results and reports to the new Nephrologist.
Of course I had to once again leave a urine sample to check for changes since last week. Next they checked my vitals only to find out my low blood pressure was running a bit lower today. They had me sit, stand then sit again. Standing made my blood pressure lower which was a bit odd to them however I said, "Call me the special patient because my wiring is a bit off." They chuckled and then made a suggestion that I continue using a cane so I don't lose my balance with having such low blood pressure all the time. I am already one step ahead of them! The nurse was intrigued by my Idiopathic Gastroparesis and once my new Nephrologist came back into the room he also quickly became very interested in my past medical history. I have high expectations of this new doctor who must clearly work with the rest of my medical team. Smart? Yes. Informative? Yes. Compassionate? Yes. Could he possibly fit in with rest of my specialists? Yes.
After finishing up the remainder of my examination which included going over tests, office reports and lab work I got asked, "Have you ever traveled or visited any Latin countries?" I answered, "Yes, Panama when I was in my 20's." My doctor explained there is an insect known in the Latin countries that can cause central nervous system damaged upon being bit by the insect. He further said, "The symptoms can come on years later although I am not trying to scare you but since your Gastroparesis is Idiopathic and you clearly suffer from severe nerve damage this could be an avenue to further investigate." Wow! I wasn't scared at all but very impressed however it also seems my Oncologist/Hematologist was already one step ahead going down the same avenue two years ago when he ran extensive blood work looking into the same theory. Results from those tests? Negative. With one Grandparent who has kidney cancer the genetic factor does pose me with a risk of also developing kidney cancer however this isn't the case right now. Instead once again I was told things are happening due to a mechanical problem with nerves that control my organs. Not only is my Idiopathic Gastroparesis progressing but now taking with it my kidney function leaving other nerves severely damaged. Just how damaged? My kidneys are not emptying properly. My Nephrologist took a pen and piece of paper out then started explaining what was going on. The path from my kidneys all the way down to the final process of fluid elimination is disturbed due to severe nerve damage. My urine today continues to show red cells and blood although it doesn't mean I have an infection but it also has my lymph nodes in an uproar. I already have one lymph node monster my Oncologist/Hematologist is dealing with so it was a blessing to hear no connected problems/cancer with my kidneys however they are not functioning properly. They did suggest I have a few tests repeated and another blood profile done but in the end my doctor said he can not fix the problem with my kidneys and GI tract. He also said, "The extensive damage is done. Your condition has and will continue to progress. There is no treatment that will help in your unique situation. I don't foresee the cultures changing however your kidneys are not getting the proper nerve firing needed to function."
S I G H...
Once again I took the news with a smile because there is no need to get angry or upset. I pretty much figured there would be no quick fix or solution to the great kidney mystery. In fact there is no cure nor quick fix for any of my organs that are suffering horribly by the hands of my Idiopathic Gastroparesis. I was very, very impressed with my new doctor but question if the tests are really necessary since there will be no cure no matter what comes up. At this point I might need over the weekend to think things through and run them by my fellow GP friends. Its always better to get a few other opinions. My gut is 50/50 but I think everyone who suffers from Gastroparesis just wants relief, answers and a cure. Sadly most patients walk away without any of the three and instead must learn to live with constant new problems.
My Nephrologist stepped out of the room to make a few calls then check into a cat scan report from another specialist of mine. Once he returned back into the room familiar words began ringing in our ears, "We as specialists and surgeons can not heal damaged nerves. We can not fix damaged nerves. Technology is not far enough to allow us answers for you. Your case is very fascinating and intriguing because it all started from severe nerve damage and remains Idiopathic. The problem is your GI tract is paralyzed from top to bottom which includes all organs. It is not surprising your kidneys are also showing signs of problems because they are part of the digestive system. I would still like to run the tests ordered but in the end there isn't much I can do for you."
Hmmmm....Didn't me and my friend-Caregiver already figure out the end conclusion? I personally hit it right on the nail! I already know with Gastroparesis as well Parkinson's and other conditions caused by nerve damage there is no cure nor answers. Only temporary relief if even that is possible. Is that possible with my kidney situation? No. The entire path from my kidneys to the last step of filtering urine out of my body is permanently damaged. It is as he said, "One more annoying thing to deal with." AMEN! So after shaking hands and taking hospital orders for further testing I thanked my new doctor for a very insightful visit and reconfirming what I had already known. On the way out the nurse wished us both a great weekend and said, "If you need anything in the meantime please don't hesitate to call." My doctor also walked back out, handed me his card and said, "If you need to get in touch with me or have any problems with fever, rash, vomiting or extreme abdominal pain please contact me on my cell phone." Next time I get the same rash on my stomach I have been experiencing over the past year he wants me to take a photo and send it to the office. In his eyes it might hold a key to a few more answers to my great Idiopathic Gastroparesis mystery. I sure hope so because not only can it potentially help myself but many other GP patients with their great medical mysteries! Amen.
On our way home after running a few more errands my friend-Caregiver stopped and got some Chinese food and gave me the fortune cookie. I recall a family member telling others regarding my medical condition, "She just got dealt a bad hand of cards." I like to say its not the hand your dealt, its how you play them. Isn't life funny sometimes how it reminds you of your strengths and weaknesses even in the form of a fortune cookie?...
My fortune cookie read,
"Life is not a matter of holding good cards, but sometimes, playing a poor hand well."
Posted by GastroparesisAwarenessCampaignOrg.
at 11:59 PM EDT
Updated: April 14, 2012 3:10 AM EDT