Sarah’s Double Transplant Journey- Kidney&Pancreas

Sarah’s Double Transplant Journey- Kidney&Pancreas This is a page where you can follow all of my transplant/ health updates!!

05/16/2025

I forgot to do an update after I got home yesterday from the hospital. On the way home from Louisville, i jokingly(not really) suggested that my sister just drop me off at holiday world and i could ride the school bus home with Bray and his class that was on their field trip there. I was supposed to be on that field trip and im still upset i didnt get to go on that trip. Sometimes doctors(not saying all) need to listen to their patients input a little more. Ive lived with myself for 36 years, am pretty in sync with my body, and had already gone through that once before. I knew exactly what was wrong and it frustrates me so much because i expressed my concerns about it right after this transplant when the dr told me she wanted to start me on that and then again when i started getting sick the first time.
Anyways, I got home around 2 yesterday. Dr. Raj started me on sirolimus, to take place of the myfortic that I was on. I also started on a round of cipro just as precautionary. All my blood cultures came back completely fine again!! My hemoglobin was a little low again 8.3, at the hospital so I had to get labs rechecked today with the possibility of admission for another transfusion. Thankfully it was back up a little to 9.2 and Louisville never called to tell me to head that way. I did talk to Trager on the phone today though. They just called to check on me and make sure I remembered to do my labs.
My lipase and amylase levels are still good.
My prescriptions somehow got separated between 2 different pharmacies also so i got that sorted out today.
The bruising on my arms looks awful right now so dont judge me if you see me out lol
Overall, everything is starting to look up and hopefully no more set backs!!

06/12/2024

I talked to my doctor yesterday about my results from my dexa bone density scan. I have osteopenia which means I have lower than normal bone density mass and at risk for fractures and the prednisone that I have/will be on for long term can make that worse. However, it is not as severe as having osteoporosis. I already have charcot in both feet, more severe in my left foot. I have had fractures in both feet already.
My dr would like to start me on the medicine prolia, but wants to get it approved through my transplant team first. I have read up a little on prolia and I’m not sure this is something I want to take considering the negative effects it could have. I will discuss all my options with my transplant team next week when I see them before I make a decision.
Sarah Lopez

06/10/2024

Last week I had my dexa bone density scan. My doctor wanted to get a baseline number since I have/will be on prednisone long term. The dr called Friday to go over my results but I somehow missed the call so I will follow up on that today. My last labs showed that I still have CMV but all my other labs looked pretty good. My tacro level was a little too high so they decreased my envarsus. I’m not sure if it’s still the CMVirus that has me feeling exhausted or what but I am struggling over here. I can barely drag myself out of bed in the morning and then by about 2 or so I need a nap. I can’t physically keep my eyes open. It’s been a struggle trying to make it to all my appointments, labs, kids appointments, the kids activities, etc. I used to try to schedule most of my appointments in the afternoon but now sometimes those are even hard to make it to because I’m just drained. My stomach has been bothering more here lately also. Almost every night I feel nauseous. A couple weeks ago, I stopped at Lowe’s and on the way out I got an intense pain under my ribs and ended up making it to my car just in time to get sick. I’m still not sure what caused this but it’s happened a few times in the past. I go to Trager next week so I’m hoping we can get something figured out. We did finally make it back to Church yesterday, out of town soccer tournaments had prevented us from going the past few weeks. After church, Bray and I stopped at schnucks and I got to see my kidney mate!! She looks great!!
Sarah Lopez

04/18/2024

I had my transplant follow up yesterday in Louisville. It went well and they stopped 2 of my medications. I had a ton of labs drawn yesterday and I will continue to have labs drawn every 2 weeks. My appointments will be every 6 weeks now and my local nephrologist will come back on board, kind of like as an in between doctor.
I have been extremely exhausted the past few days and a little sore. I related it to walking at the zoo, playing with my kids, our busy lifestyle, etc- but ironically enough, Trager called today to ask if I was feeling okay. They informed me that my labs yesterday showed that I have CMV right now. They explained it basically as a transplant like flu, it’s not contagious though. So no wonder why I have felt not as well. The one antiviral medicine they stopped me on yesterday has been added back🤪 and increased to take care of the CMV.

Briella was disappointed that we didn’t see Dr. Raj. He has her spoiled!! He always has a special treat ready for her when we visit. As we were walking out of the exam room, she asked the scheduler, quite matter of factly, “where is my treat??” 😂 They ended up finding her some Reese pieces and she was so excited!!

Today I had my endocrinology appt and my doctor increased my insulin on my omnipod. The steroids I’m on seem to be affecting only my post dinner blood sugars so hopefully that will all line out too. She has ordered a bone density scan as well, since I have been on steroids “long term” and I already have issues with my bones, especially in my feet.
She is also concerned about my weight. My appetite is basically back to normal and has been for some time but I still have not been able to put any weight back on. So today she sent off my specimen to test for EPI since celiac has been ruled out.

Afterwards, I had to go over to the lab and the cutest little old man, he had on a blue adidas soccer shirt tucked into his jeans with suspenders and using a cane-just adorable, stopped as he was leaving and gave Briella a dollar bc she is just the “prettiest little girl” so she could get an ice cream. She said she wanted pink ice cream so we headed over to Butlers and she picked out cotton candy dippin dots and paid for them with her dollar(and a little extra money from me lol)!!

Trager just called a short while ago and decreased my steroid, prednisone, so I will need to reach back out to my endocrinologist now to find out if I need my insulin decreased now as well.
Sarah Lopez

04/12/2024

👁️Yesterday I was sitting at my PTA meeting and my right eye started bothering me and I noticed a couple floaters. In my head, I was sitting there thinking just let me get through this meeting and home before my vision is too bad for me to drive to get home. I made it home but my vision was pretty blurry in my right eye. Thankfully, Talley Eye Care was able to squeeze me in today so I could get an injection!!🙌🏽 It’s not nearly as bad(vision wise) as my left eye was this past time so hopefully it will clear up soon!!
Sarah Lopez

For those wondering what my eye looks like with vitreous hemorrhage…. It looks completely normal on the outside but on t...
03/17/2024

For those wondering what my eye looks like with vitreous hemorrhage…. It looks completely normal on the outside but on the inside the new blood vessels bleed into the clear, jellylike substance that fills the center of your eye. If the amount of bleeding is small, you might see only a few dark spots (floaters). On tuesday night, I just had some floaters. In more-severe cases, blood can fill the vitreous cavity and completely block your vision. By Wednesday morning, I basically had no vision in my left eye. I’ve since received my eye injection and my vision is slowly coming back!!
🍀Happy St.Patrick’s Day!!🍀

03/16/2024

👁️ This morning I was able to get my eylea eye injection.🙌🏽 Shoutout to Talley eye care for squeezing me in! When they screened my vision before my injection, I couldn’t even see the huge “E” on the eye chart or how many fingers the tech was holding up in front of me. I could only see the light illuminating the eye chart. This evening, my vision is still pretty blurry in my left eye but I can atleast see how many fingers are being held up in front of me!! Each day, the leaking blood inside my eye will dry up more and more and I’ll be able to see better!!

Im never not grateful but sometmes we take for granted, myself included, the blessing of waking up with vision, hearing, speech, health, etc.
My sweet Braxy wakes up every day and puts his hearing aid in with minimal complaints and he has worked SO hard to get where he is today with his speech!! I’m so proud of him!!
Say an extra prayer for those struggling with the above mentioned!!🙏🏽

Sarah Lopez

03/14/2024

Yall say a prayer for me!! I have a leaky blood vessel in my left eye right now and I basically can’t see anything out of it now. My eyes were doing good so my dr skipped my last injections. I think I’ll opt to just go ahead and get it next time even if they are doing okay. Not that it’s ever a good time for my eye/s to fail me but we have so much to do this week/ weekend and I don’t know how I’m going to get us to any of it!! I was supposed to get transplant labs drawn today, take my kids to Disney on ice tomorrow, bray has his first soccer games of the season in Indy which also happens to be a tournament and Cesar has a VERY important appointment to get too while in Indy and I can’t freaking see(I have to drive us)!! My eye dr can’t get me in until the following Monday so I’m basically s**t outta luck unless a miracle happens in my eye or someone cancels their eye appointment and I can get their spot🤦🏼‍♀️
So say a prayer that one or the other happens bc missing some of these things is not really an option!!
Sarah Lopez

02/27/2024

💚I had my monthly transplant follow up in Louisville last Wednesday. I haven’t had time to write out a post bc the month of February has been wildly busy!! My appointment went well and my labs look great!! My envarsus did need increased a little. The specialty pharmacy called to inform me they had a data breach and are unable to fill my envarsus so im not really sure where im supposed to be getting that from.😬 I only have a couple days worth left so im kind of freaking out about that!! Envarsus is one of my antirejection medicines. My gfr this week was 83!! My vitamin D is a bit lower than usual but it tends to run on the lower side. My body is still making DSA(donor specific antibodies) but still not an alarming amount so my transplant team will just continue to monitor that. We discussed pancreas transplant again I’m still listed as inactive right now so I’m just accruing wait time right now. Dr. Raj would like to wait around a year, post kidney transplant, to list me back as active. He wants my body to have proper healing time and to wait for my body to not be as immunocompromised. Pancreas transplant is a lot tougher on the body according to my transplant team and hospitalization and healing time is a lot longer. It will be another abdominal incision so the importance of having my body in the best state possible is crucial not only for the donor pancreas but also my donor kidney!!
The past 3 days I have had a weird feeling like I’m about to pass out, light headed but I haven’t actually passed out. I’m not sure what it is but I hope it goes away!!
Sarah’s Double Transplant Journey- Kidney&Pancreas

02/09/2024

I had my endocrinology appt yesterday. It went pretty good. My doctor adjusted my insulin ratio just a little bit since I’m still on a steroid for my kidney transplant. My blood sugars seem to be just a little elevated after I eat. I also mentioned to her that I’m struggling to gain weight along with some other issues. She thinks I might have EPI(exocrine pancreatic insufficiency), bc why not, so I’ll be having tests done for that. That would explain some gut issues I have and not hewing able to gain/maintain weight. She is also going to put a dexcom transmitter to the side for me if she gets any samples in so I don’t go without one like I did here recently when mine stopped working.

Sarah Lopez

01/29/2024

I went to Talley today for my eye injection appointment. I had to miss my last appointment bc it was right after I had my transplant and we all know that was a really rough time.
They took the usual pictures of my eyes, checked my eye pressure, and checked my vision. Dr. Sommerville was happy with how my eyes looked today, I have no swelling and no active bleeds, so I didn’t have to get my shots today!!🙌🏽 I’ll go back in a few months to get injections unless I start to notice floaters or have issues with my vision before then. Now if I could just get my pupils to act right😂
I’m not sure if my improved eye health is due to my kidney transplant but I’d like to think it is playing a part in it!! So grateful!!
Briella and I celebrated afterward with some shopping, lunch at Moes, and chocolate covered grapes from libs!!
Sarah Lopez

01/23/2024

Transplant follow up yesterday in Louisville went well. My insurance approved my extended release envarsus(tacrolimus) and so far it has seemed to help. I don’t feel full all the time now so I’ve been able to eat a more normal amount. I had all of my normal and special labs drawn yesterday and from what I could see on mychart they all looked good except for my blood sugar. My dexcom transmitter quit working out of nowhere last Friday so in turn no readings were being sent to my omnipod to dose my insulin. I called dexcom support and they told me they would be sending out a new transmitter but it won’t be here until this Friday. I tried to use my old school glucose meter and it kept reading error so for a day I was guess dosing my insulin based off how I felt and what I was eating. I finally got my meter to work and whew, my blood sugars were WILD!! My mychart glucose was 481😬. After trying to purchase a transmitter yesterday from the pharmacy, they were out of stock, I reached out on my personal page and thank GOD for great friends like Amanda Montejo Krous!! She gave me one of her extra transmitters and my blood sugars are back to normal, currently 112!!
Dr. Raj wasn’t my dr yesterday but he still popped into my room and said hey to Braxton, Briella, and myself!! He is our favorite!! He is always kind, doesn’t rush through the appointment , and makes sure everything said is understood!! My kids love him because he always brings treats lol. Last time he gave Briella a Christmas cookie and this time he gave the kids each a candy bar😂
Louisville should call this afternoon or tomorrow to go over all my labs done yesterday. I now only need to go once a month for my follow ups and will continue with weekly labs!!
Sarah Lopez

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Henderson, KY

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