Now Playing: Day 721-The Final Road To Survival
Time to play catch up!
I haven't been able to go online the past few days catching up on emails, etc due to a extremely busy and stressful week. I am hoping by the end of this weekend to finally be all caught up! Today is also my last day this week for doctor appointments and tests. Thankfully the last appointment of the week isn't until later this afternoon since I didn't get much sleep last night and I really needed to catch up on a few zzzz's....With so many things to accomplish today I decided to set my cell phone alarm for 1pm this way I had plenty of time before my 4:40pm appointment and tests.
It looks like cooler and fall-like temperatures will be here to stay until early next week. Much dryer weather too that allows plenty of outside playtime for the fur kids. By the time its 11pm they are beat! The kitty gang have been enjoying lots of sun lounging during the day which also leaves them quite tired by early evening. Precious has been lounging with the Easter Bunnies in the spare bedroom the past few days. Pumpkin kitty has been caught by my friend-Caregiver literally laying on them. Hahahahaha! They are too funny and keep life interesting to say the least!
Honestly with the holiday weekend upon us I thought for sure we would hit lots of rush hour traffic on the way to my doctors appointment as well those who are traveling for Easter. With only 15 minutes to spare because a last minute phone call from my insurance company had me running late we still made it right on time! In fact I was the last appointment for the day not only for my specialists office but as well for the tests. BONUS! My friend grabbed an empty chair and TV remote all to himself since I was the last patient for the day. My insurance company hasn't been too kind to myself nor my specialists over the past year. In fact not only am I feeling the heat but so are my doctors and in between fighting for coverage with medical necessity testing others are fighting the insurance company on important medication coverage. Who knows what "will" or "won't" be covered today. I guess I will find out once I receive my medical claims in the next few months.
There were five health care workers who all showed true compassion and took very good care of me today! So maybe things didn't turn out as expected which is why once again I expect the worst but hope for the best but also expecting the unexpected. They needed to run further tests today to go over some problems that showed up during my hospital visits and tests. One test showed an enlarged right ovary which to most would seem abnormal but to my surgeon it wasn't because this same ovary was repaired by both of my surgeons four years ago. There were no signs of ovarian cancer, tumors, cysts, etc. GOOD NEWS! Second they ran a test to specifically narrow in on the left spinal pain that runs around my hip down the groin area and leg. It has also made my left leg continue to be numb down to my knee. What they did find during the scan and test is once one person pushed down on the exact area front to back my bowels were visibly seen fused together. My intestines are more of a tangled mess than even my surgeons expected since they did their best during my last surgery to untangle them but nope, they are fused again. This is not only causing me pain but also applying pressure to my poor spine and wrapping with them nerves that are slowly dying and being strangled. MYSTERY SOLVED! My Neurologist hit it right on the nail yesterday during my appointment because he believed it was two issues at the same time working against each other and he was right! So no ovarian cancer but one fused mess of bowels and nerves which not even the best surgeon can determine if the pain will ever ease up but now we all fully understand the importance of staying on the ole Drano treatment. AMEN! One good thing was they could see clearly through my lower bowel and were able to determine there were no perforated holes. Just another reason why I must be careful and stick on a liquid diet.
I "thought" I was in the clear from one specialist off to the last tests for my kidneys. I don't feel any upper left or right flank pain. I don't have a fever. The only odd thing is the past three months I have been noticing fluids retaining for very long periods of time before I am able to pass them. My friend-Caregiver has also noticed some signs that something isn't quite right. Since my other specialist felt things were mild and in the beginning stages there was really no reason for me to add another specialist onto the existing 16 but that quickly changed. Once the tests were completed I quickly got pulled into a room with a doctor who clearly asked some very specific questions then reviewed prior tests that my Gastroenterologist ran two years ago when he suspected function problems starting with my kidneys. The doctor was very honest by telling me my urine still has quite a lot of blood in it with no signs of kidney stones, UTI or any other infections based off of a list of tests recently done. There is problems with the function of my kidneys or more like "lack of." I wasn't sure where she was going but felt maybe I couldn't handle anymore bad news so I said, "Basically what you are saying is my kidneys, both of my kidneys are not working properly and its very serious." She shook her head in agreeance. The doctor then said, "Your Gastroparesis can affect many GI organs due to the extensive nerve damage. You are a very complex-complicated case. Retaining a large amount of fluid in your kidneys is not normal and usually is found in those who have declining kidney function. I understand your concern in not wanting to add another specialist and clearly you already have a great team of doctors but you will have to start seeing a Nephrologist."
I now found myself shaking my head then I said out loud, "This just never ends does it?" I could tell the doctor felt badly but tests are tests and you can't fool the final results especially those run more than once. She then asked if I needed any stronger pain medication and then wrote me out a script for medicine to start later this evening as a precaution. Its important I don't get any infections especially now so better to be safe than sorry. The lab had to sent out my urine to a facility out of state so I won't be getting the rest of the bad news back until late Tuesday. I was given the name of a Nephrologist they want me to start seeing next week not that I don't already have another specialist appointment already lined up. I went from going down to two appointments left to now two, three or who knows how many more.
I have learned today that sometimes things don't end but I have gained additional patience. I have also learned its far easier to get bad news when those who are giving it to you are kind, compassionate, supportive and concerned for your overall health and will work hard to get you feeling better. Maybe some things can't be fixed but like she said, "If we can get one problem under control that is one less thing you will have to deal with." Amen. So as a pro I walked towards the front of the desk on my way out and said, "I hope you have a great Easter weekend!" The medical staff turned around, smiled and said, "You too! Have a blessed Easter." How many people do you know who can be told your kidneys are starting to shut down and take it with a grain of salt then turn around on their way out to smile and wish those a Happy Easter? I know who-Me.
My friend-Caregiver didn't need to ask any questions since he heard most of the conversation but instead helped me the rest of the day to keep my head held high. Its easy to handle bad news when its backed by support. Amen!
Posted by GastroparesisAwarenessCampaignOrg.
at 11:39 PM EDT
Updated: April 8, 2012 2:18 AM EDT