'73 Gwynn Prix

[LupyLisa]

Hi to all of you Grand Prix lovers!

I have been MIA for quite a while due to some major health issues. Since I last posted, I went into stage 5 kidney failure caused by my Lupus.  I had to start dialysis immediately.  I now go to dialysis 3 days a week, Mondays, Wednesdays and Fridays for 4 hours at a time.

It's a bit if a drag. But it goes by pretty fast while spending time going down the many black holes that are on the internet. I'm grateful for dialysis because it's keeping me alive and  I amfeeling much better than I had been feeling! I am not in a position to complain, so l just acceptit and keep on going!  I have yet to have the big meeting with the transplant team at The University of Colorado Hospital.  The meeting is necessary to get on the list for a new kidney! I have a couple of friends and a niece who are the right blood type, who have volunteered to get tested to see if they are a match.  I'm told the first meeting is very long and involved with many medical, psy hologram and financial tests and evaluations to see if I qualify. They said it could be an 8 hour or longer day. I'm waiting to get a bit stronger before I make that appointment!   

While getting ready for dialysis, they had to do surgery to put an arterial/venous fistula in my arm.  An A/V fistula is when they connect a vein and an artery together to be able to insert the needles to an input and an output access point needed for filtering my blood dialysis. One goes into the vein and comes out of the artery (or vice-versa) 

From day one the fistula site was causing a lot of problems, mostly pain. I was told it had to mature before it could be used for dialysis.  The surgeon said to wait another month, but I was not in a position to wait. My kidneys took a dive into stage 5, End Stage Renal Disease (ESRD) so they could not wait to start dialysis on me.

I went in on the Friday of the second week to get dialized and the fistula was killing me!! It was way too painful to use.  They attempted to put the needles in  but I just couldn't tolerate it. The needles are a much larger gauge than your typical blood draw, IV or needles used for an injection. They attempted to insert the needles but made them stop!  I left the dialysis center and went straight the surgeon's office in Boulder (a half hour drive)  to have it looked at. As I was walking into the surgeon's office, he was waking out because he had been called into an Emergency surgery. I saw the physician assistant instead. They didn't really know what to make of it. They gave me some pain medication and an Rx strength numbing cream. Plus I am on a fentanyl patch for pain caused by a botched abdominal surgery in 2018. None of it worked to control the pain. 

On the evening of July 4th, it was causing me so much pain, I decided to go to the ER.  They didn't know what the problem was, but thought it could be infected. So they decided to admit me that night. Thank God they did!!!🙏🏻🙏🏻🙏🏻

The next morning, I was talking to my husband on the phone when I felt something in my arm pop,  followed by an odd and unbelievably intense pain!!! It turned out that my fistula had ruptured and caused a major bleed. And, it was an ARTERIAL bleed! That is a real emergency  situation!!!

With an Arterial bleed, time is of the essence! It only takes a couple of minutes for a person to bleed out and die!!! I hit the call button for the nurse, but they weren't answering it! In a panic, I got out of bed and ran down the hall dragging my IV pole screaming "HELP!!! I need some help, right freaking now!!!"

The nurses all came running toward me!  When they saw what was happening, they sent out a full on alert to the rapid response team which is nearly the same as calling a Code Blue!  The pain was like nothing I've ever experienced in my life!  It was so bad I was writhing and screaming in pain!!! 🥵  They had to get the bleeding under control before anything else could happen. In order to do that, they had to apply  an insane amount of pressure to my arm, by any means available.  They grabbed whatever they could and wrapped it very, very tightly!   Then they applied two blood pressure cuffs. One cuff above and one cuff below the fistula/bleed site. Then they pumped the cuffs up as far as they would go!!! Everything they did only added to the intensity of the pain! It was so bad, I was crying and nearly passed out!🥺😰😭😵

Once they got the bleeding semi- under control. I had to have emergency surgery to tie off the blood vessels. The next day I had to have another surgery to put in a central line catheter by my collar bone in order to have an access site so I could still get dialysis. That catheter goes directly into my heart. I was in the ICU for 5 days!

Had I not gone to the hospital, I would have probably bled out and died! ☠☠ I figure that by the time I could figure out what was happening. Then calling 911 for an ambulance, 🚑 and the time it would take for an ambulance to get to my house. It would have definitely taken way too much time and I would have most likely exsanguinated!!! 😳🩸🩸🩸☠

This is one of many  "bumps in the road" in my nearly 40 years of battling  lupus and many other secondary or accompanying health issues caused by lupus. The kidney doctor said that in his 45 years of being a practicing nephrologist, he has never had any patient experience a ruptured fistula!  The surgeon had never seen it happen either!!! For some reason, I'm always that one-in-a- million patient who has to have something extreme, weird, uncommon and/or catastrophic happen to. I guess u. Doing my part for medical research and advancement!!!🥴

Thankfully, I am doing okay now and the central line in my chest,  makes dialysis so much easier!

Unfortunately, I cannot keep the central line for an extended period if time because the risk of infection is too great. The catheter for it goes in by my collar bone and directly into my heart.  If something foreign got into it,  it would be devastating!  if an infection were to occur, it could be deadly!  Which means I will have to get another fistula put in my arm!  Ugh! I'm I no hurry to do that again!☹

Sorry for rambling on, I just wanted you to know I didn't forget about you all!  My friends all say I should write a book and call it  "The Medical Miracles and Misadventures of Lisa."

I also wanted to give you all an updated email address if you want to contact me for more information about the Gwynn Prix.   My new email is:

[email protected]. 

The other email  (yahoo) was just to full of spam and junk to even try weed through to get to the real messages! If you tried to contact me on the yahoo email address, please try again using the new email address.  

I hope you are all doing well and are having a great Fall season!  I really miss the Fall colors in Michigan! Here in Colorado it's a beautiful  sea of gold aspen trees, but not many other colors like in we had Michigan! 

[Ringo64]

Oh, my! I am sorry to hear about your many issues there. Thoughts and prayers that things go smoothly here on out for you. Feel you on the mystery health issues, dealing with sjogren's and lupus plus some other auto-immune issues, not fun and always seems to be a not-so-fun time diagnosing  .

Know there are some good transplant surgeons in CO as my cousin had a liver transplant back in 2018 and doing fine  . Best of luck to you and let us know if there is anything we can do.