Haven't spoke to you guys in awhile. Hope all is well! For the most part my sister (deniferfer) is doing okay. I woke up to say goodbye to her. She's off to Fresno for yet ANOTHER procedure. This is getting nuts!!! I'm livid. Oh, hang on, let me fill you in (granted the first bit you guys probably already know but hang in there. There is a point to all this):
Up to about 2 years ago, Jennifer had the perfect life. Well, as perfect as a person's life can be struggling with kidney failure and all the complications that come with dialysis.
In the beginning, she was on PD, which is a tube that sticks out of your abdomen and connects to a machine and filters and flushes your body's waste for you. It took 11hrs, but 8 of which she slept at night. It was the extra 3 hrs in the morning that sometimes got to her though! The fact that she was tethered to this machine and couldn't do anything or go anywhere until the machine finished it's last cycle kinda sucked. But you would never hear her complain. She could of course go on earlier at night to finish earlier the next day if we have plans to go to church or something. But there was definitely no last minute plans for her or late night escapades, for she had to hook up to the machine at 8-9pm every night. Any later, and she's looking at getting off at noon or something!
Later, she was getting too many infections while on PD so it was in her doctor's best interest to remove the tube only to find out she had an ovarian cyst. The doctors were suppose to do a simple laparoscopy surgery and remove the cyst. After failing her stress test you need to pass to get the green light to undergo surgery, the doctor then said it would be best put a pace maker in to be sure she doesn't die on the operating table due to her enlarged and weakened heart. Okay, fine. All of this by the way, was so she could remain on the transplant list! While he was in there digging around during her laparoscopy, he notices her intestines were covered in, for lack of better words, gunk. He then, without our permission or consent, decided to fillet her open with a long incision from her pubic region all the way up to her belly button and pull out her intestines and clean them off and send a sample of what he got off them to a lab to be tested. If he knew anything about PD patients he -should- have known that that is completely normal and happens over time when someone is on PD. It's from the fluid that flushes out their abdomen when they are on the machine. When the results came back benign, we were so frickin' PISSED! You mean to tell me, a kidney specialist who should have known exactly what that was cut my sister open for NOTHING?!
It was quite the ordeal that unnecessary surgery would cause for her. From the stitches opening up and tons of fluid, blood and God only knows what else spilling all over our house floor, having to call 911 to pick her up via ambulance and rush her to the hospital, to her getting an infection from poor "craftsmanship" when they sewed her back up with no drain lines. She ended up getting sepsis, which is a life-threatening infection of the blood that can kill you and it almost did. She went into septic shock and my whole family made a visit to her to basically say goodbye. She had one foot in the grave.
It wasn't until she was finally taken OUT of Porterville's "hospital" care and air lifted to UCLA did she start improving. A port was put in to be able to flush her system out via by blood.
The port was doing fine until it wasn't. She then had to go for another procedure to see if there were any other options for her. They performed angioplasty on her which is when they make a small incision in her leg and feed this tube throughout her entire body all the way up to her heart! It's to see the flow of veins and exactly where to place a graft. A graft is an artificial vein they place under the skin and is used for dialysis. This was a blessing and a curse for Jenn because it was under her skin, they would have to poke her every day to get to the graft and lord knows she hates needles! But because the graft IS under her skin, it means she can go swimming, take showers instead of baths and never have to worry about tip toe-ing around her port in her chest. Is it clean? Did the bandages get wet? Is it clogged? Does this top cover these embarrassing scars and bandages on my chest? In short, the graft allowed her freedom.
Well, freedom if the graft would work properly! When they went in there and installed the artificial vein for the graft, something happened to the blood flow she gets to her right arm and hand. One night it turned blue altogether!! The pain was so unbearable, mum took her to the ER immediately. She can barely move it without it hurting from this burning and tingling sensation! The doctor said she may lose her hand! She's been having difficult driving and getting herself dressed with one arm. If that's not a complete loss in freedom, I dunno what is!
Her quote on quote "freedom" was short lived for today she is going back to Fresno to have the graft removed and the port put back in again! Didn't we go to Fresno just last month for the angioplasty and got the green light for the graft?! The graft was suppose to work. But she did get to go swimming last night! First time in 2 years! So that was nice.
So, where are we on surgeries and scars on her body:
1. Over her heart- Pace maker
2. By left ovary- Ovarian laparoscopy
3. From her belly button to her pubic region- unnecessary procedure all together
4. Right side of her chest: a port for HEMO dialysis
5. Right leg: angioplasty
6. Right arm: graph for HEMO dialysis
7. And today will make for yet another scar! Right side of her chest- the port..AGAIN!
This all happened over the span of 18 months, mind you. Poor Jenn! I have never once heard her complain in her 16 years of being on dialysis but these last few months here, she has done nothing but cry and I can't blame her! This royally sucks! And here's the kicker: this alllllll could have been avoided if they just took out her old port and put in a new one. Ports do over time get clogged and need to be cleaned and replaced. So, number 5, 6, and 7 never should have happened! That's what's really bothering her! This whole time...THE WHOLE TIME..it was a matter of replacing her old port with a new one.
I love you so much Jenn. God only knows that you’re the strongest person I know who can and will keep persevering through all this.
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