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Back in 2017 I started to get sick, thinking it was just the flu I just figured it would go away in time. By the end of March I finally went to the hospital and they did a bunch of blood work and my creatine came back as a 28.
Creatine is supposed to be below a 1 so I was in full blown Kidney Failure. The doctor actually said to me I’m not sure how you are up talking to me based off your labs you should be dead or in a coma. So I was sent to ICU and was awaiting transfer to hospitals to do a Kidney biopsy and to start dialysis.
That night my hemoglobin dropped dramatically so I was given 2 blood transfusions. I was completely scared and confused not knowing what was going on.
I was transferred on April 1st 2017 sent directly to get a perma cath and started dialysis right away.
There I met 2 amazing dialysis nurses that comforted me throughout the 2 weeks I was there and without them I do not think I would have been as positive as I was especially getting the devastating news that it was permanent damage and I needed a Kidney Transplant.
I was then released once I had a time set at my local dialysis center. I was nervous. They had me stay in the isolation room which I hated so much. I needed to be out and socialize with other patients. So I finally asked my NP if she could make it happen which she did!! I am so grateful to her because that is where I met Jeff. He had become my best friend but unfortunately he died this past December and my heart broke hearing the news.
Then in May 2017 I met with my vascular surgeon to have my AV fistula placed for hemo dialysis. He ended up having a cancellation that friday and got me in. I was extremely nervous. I wanted my perma cath out as soon as possible though as I missed my showers!
So we scheduled it and I got in and when I woke up he told me my veins are so large that my fistula was already the size of what they like it to be to use but obviously I had to wait for it to heal to use.
Unfortunately my fistula grew so large I had to have a revision. I had 2 options get a perma cath and do the whole arm at one or do it in sections. I hate the perma cath so much I decided to do the 2 part surgery.
Now throughout all this I was on the machine one day and it took 6kg when I was only set to 1.2kg. I got so sick I lost so much weight. My kids basically watched me waste away. Finally in 2020 I got my appetite back and felt good probably the best I felt in 3 years.
I was finally listed at University of Michigan on Dec 26th unfortunately I couldn’t be active because on Christmas day I went to the hospital from constant vomiting and low BP with a high pulse. This was due to a new medication I was taking because my PTH was getting high. By New Years eve I was then on the active list at University of Michigan.
January 2020 my friend started to get tested for me. Then unfortunately COVID-19 started which slowed down their testing. They pretty much stopped during lock down and called it elective surgery. Finally they were able to start back up on testing and they decided to tell them they were denied on my birthday. I was devastated. I have been so positive throughout this whole process but that day crushed me.
So I decided then I was going to try to get listed at University of Toledo as well. By the end of September 2020 I was listed actively.
I received a call October 2nd 2020 while I was at dialysis for a possible kidney!! I cried and so did some of my techs who are amazing at my clinic. Unfortunately the kidneys ended up not being viable.
Few weeks went by and October 25th 2020 I went to go grocery shopping and I got the call. I was hesitant because I had a living donor who was supposed to find out if they could donate to me or not that week. They told me this kidney is too good to pass up. They scale them from 1-100 1 being the best and 100 being the worst. This kidney ended up being a 13 so basically that is like a needle in a hay stack. The downfall was they nicked the kidneys artery but my surgeon said he could fix it. I finally said okay I’ll come in get tested if not okay and if yes then yay!!
So they sent me home to get a few things and get some food in me and drink a little bit of fluid since I wouldn’t be able to until we got our answer if the kidney was mine or 1 of the 2 other candidates.
I had to call my mom to get my kids they packed up real quick. I had to pack too. I grabbed some clothes, deodorant, charger, and books. Of course I forgot my toothbrush and hair brush I really was not thinking!!!
I get to University of Toledo get my whole workup and covid testing (what fun right?!) Then they sent all 3 of us out but because I wasn’t with 5 minutes of the hospital the surgeon wanted me to stay nearby. So we stayed nearby and by 9pm they called us all back waiting for one last test.
They kept us all in one room… awkward right? Then everyone was getting calls and they said they want to give you the kidney and my husband and I both cried.
So we waited for the nurse to take me back to start to get prepped. In the meantime we called everyone and I called my last friend from dialysis and come to find out he was in the hospital not doing well. His wife explained to me everything going on and I about cried again. I’ve lost so many good friends but this one he was my birthday buddy and just like a grandpa to me. She told me not worry but of course I do.
Finally they take me back and I am nervous more then ever! I am so ready to feel somewhat normal again! I meet all the surgeons, nurses, and anesthesiologists that will be doing the surgery. Somehow we all start joking around trying to calm my nerves so I mention well let’s just play some Backstreet Boys that will calm me down! Haha so my anesthesiologist was like don’t tempt me I’ll burst out in song!
That is pretty much all I remember because shortly after that they got me into the OR and I was out cold. I woke up to a nurse saying they were about to give me insulin and I panicked not knowing why and I didn’t even realize they did the kidney transplant already so of course the staff started to giggle.
Now unfortunately since Covid-19 my husband was not allowed up to visit me so I was by myself the whole time but I was extremely lucky. October 26th was my surgery and I was out by October 28th.
Unfortunately October 30th 2020 I got some bad news about my friend John. He had passed away in Hospice that following night. I cried so much because he wanted to quit a few weeks prior to this and I said no I need you around. He asked to go into hospice the moment he found out my kidney transplant went well. I was lucky enough my transplant team let me go to his funeral to say goodbye to him. He truly was like family to me and he treated me and my girls like his own. It still doesn’t feel real that he is no longer here.
Now day of surgery my creatine was a 12.8 as of today November 12th I am already down to a 1! However I had a fluid pocket removed it was about 100ml and they went and did a kidney biopsy since I was there already. So I am praying there are no issues.
We are raising money for the nonprofit Help Hope Live in honor of me, Ashley Glendening, to fund uninsured medical expenses associated with Catastrophic Injury.
We chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
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For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
11-16-2020
Results of my kidney biopsy showed no signs of early rejection.
However my DSA did go up so I am being tested each lab now to keep a eye on that. If it continues to go up I will need another biopsy.
My creatine as went down to a .88 since they removed the fluid which is great!
11-13-2020
So they did the biopsy yesterday what I did not realize was my kidney lays on my hip. So when they went to grab the sample from the kidney it scratched my hip bone and the pain I don't think I could even describe. Thankful for the nurse I had she held my hand and reminded me to breathe. Real heroes don't wear capes that is for sure!
October 25th 2020 I recieved a call from University of Toledo that there was a potential kidney for me and they got me in to be tested. Xrays, bloodwork, basically a whole physical and covid testing. They sent home all the potential candidates until 9pm. I was a perfect match and they got me into surgery around 12am on October 26th.
I'm now 2 weeks out and my creatine is already a 1! Now I go Nov 12th to have a fluid pocket removed. They said it was a 12cm which is pretty big. Now they are also doing a kidney biopsy to make sure there is no early rejection.
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Help Hope Live
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In honor of Ashley Glendening
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2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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