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Our Daughter's Journey

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Our Daughter's Journey

This is a page where friends and family can find current information about Roma's continuing health journey. Roma, is our eldest child, born in March of 94.

Some of you may not know the history of our family with kidney disease...continue reading for details. A happy, quiet, shy little girl. she was with us alone until her brother joined the family when roma was three and a half. Roma was Completely healthy so we thought. However, oUt of the blue, with very few symptoms presented, Roma became very sick iin January of 1999. She was almost 5. Her brother, Marcos was 1. I was 5 months oregnant with Lucas. We thought Roma had the flu, but our doc insisted a blood draw was necessary. She had one on jan 2 1999. the doc called us at home that night and said...you need to get her to the hospital tonight. There is something wrong with ur daughters kidney. Marcos was 13 months old. My in laws came and spent the night. Ed and I took Roma up to .doernbecher that night. There is where rhe first part of a very long ride began...to be continued..

06/08/2024

367 days ago Roma received her 3rd kidney transplant for which we are so thankful! That kidney has functioned with a creatinine of .65 for most of the year which means it is working like it was her very own! She has spent the year recovering , slowly building up her hours towards being at full time and getting to experience SO MANY fun things! But TODAY, she married her best friend and became a Mrs! She and Nick had decided awhile ago that they would do a small ceremony with each of their best friends and the Justice of the Peace. Their wedding reception is scheduled for 1/25/25 at the Abernathy Center and we will celebrate them big time on that evening! Congratulations to the newest Mr. And Mrs. Peterson! 🩷💙 They leave for a tropical honeymoon in a couple of weeks!

09/07/2023

3 months ago today (after ONLY 8 days on the Transplant List), Roma got a call from OHSU saying that they had a kidney for her … initially , I thought , no way, not even getting my hopes up. Lucas had SO many false alarms. Roma had to re-locate to Memphis for her 2nd transplant. It can’t be this easy! I continued teaching that day and so did her Dad, but at about 230 it became abundantly clear that GOD had plans for us! They took Roma to surgery around 6 pm. Surgery still didn’t happen until 9 ish. BUT, it happened. They had a very special kidney for her as she was a hard match due to her multiple antibodies from blood transfusions and other organs. SINCE then, Roma has been recovering. She went back to work at the bank TODAY. Exactly 3 months later. Other than being a little fatigued she did well she said. Lastly , she received the biopsy results yesterday. All is well with the kidney and it’s functioning perfectly inside of her! It’s such a relief for her to be able to think toward her future . This past weekend we went wedding dress shopping which was a blast! As a side note ALL 3 of my KIDS are healthy and thriving in general. Roma, continues to recover and she and Nick are planning their winter/spring of 24 wedding! Nick has been a huge help in her recovery also while working full time and attending his military responsibilities. ❤️Marcos is working full time in the roofing industry and enjoying life with his gf, Olivia. (And their cats)! 🐈‍⬛ 🐱. Lucas is very close to selling his first house as a licensed Real Estate Agent. He is very healthy, working a TON, still doing a little drone photography too as a side gig! His organs are functioning perfectly well. This is a stage of life that I’m treasuring. It’s not often that all 3 of my kids are healthy. But, they are and I’m savoring every moment as they are too! Here’s a recent pic , at ny niece , Katie’s wedding. Thank you for all of your support in our life!

08/28/2023

Update: biopsy went well! Nothing like your fiancé surprising you at the hospital because he finished his 3 days early ! (See pic) Routine kidney biopsy today for Roma. Nick is at drill so I picked her up at 630, and boy was that an EARLY morning for this mom who has slept in almost every day this summer! But, I’m not complaining! Roma actually graduated 2 weeks EARLY from Transplant Clinic. Which means fewer doc appts and blood draws, but ultimately means that this kidney is working so well! We are so incredibly thankful for this huge blessing! Will get results of this tissue biopsy in a week or so.

06/10/2023

Roma was discharged this afternoon from OHSU. Discharged 4 days after transplant . FOUR! She is one of the strongest people I know! Needed a blood transfusion before discharge. Hemoglobin was at 6. Needs some insulin at home temporarily due to high doses of prednisone. She was sent home with a new med routine about 15-20 meds. New dietary guidelines . But, those are minimal issues compared to the joy of a healthy future. Here she is tonight at our family gathering. Wearing a mask at the far end of the table next to her fiancé , Nick.

06/08/2023

Roma is doing GREAT!!! To say the last 72 hours has been a whirlwind is an underwhelming statement! This blessing that came to fruition Monday night has made this week so exciting for our families, but no one is happier than Roma and her fiancé , Nick! Roma’s creatinine had sky rocketed to 5.8 on Monday. That meant dialysis would have been happening this week, but God had other plans! Roma was on the list about 6 days and because she is so Sensitized it bumped her up highest on the list. She got a call this weekend and things moved so quickly that I couldn’t even think straight. The next thing we knew she was waking up in recovery chatting away. Didn’t even need to go to ICU. Her creatnine went from 5.8 on Monday. 4.5 on Tuesday and 1.6 this afternoon. This is incredibly hopeful that this kidney is doing better from the very beginning. (Different than her last transplant ) she’s been up for walks with her Walker and Nick. She is one determined young lady and wants out of the hospital and home to her own bed. We are thrilled with how this has all happened! Roma even got to see the kidney before surgery! Her incision is about 4inches long . The only prayer request would be for her glucose levels to stabilize. The huge doses of prednisone have bumped her glucose levels to 300. Today they gave her some insulin. She is pricking her finger every 2 hours. She also got a shot of heparin . Can’t remember why she needed that. Her bp is good and she’s decreasing the amount of times she needs to use her pain pump. Next up , is getting some soft foods into her that aren’t too sugary and that she likes. We think she might go home Friday maybe. Nick has spent hour after hour after hour up at the hospital with her. He’s such a blessing. His family has been in touch with all of us every day too.
💚💙

06/06/2023

Sometimes, things happen and they happen quickly and unexpectedly and there is simply no other explanation other than God knew it! So here we are at OHSU. Roma is just waking up out of kidney transplant surgery! Nick, her fiancé was by her side every step of the way the last 24 hours. Comforting Roma during the waiting yesterday, feeding her 1 ice chip an hour today as she was no food or sting for close to 21 hours , talking to the doctors and then updating family, friends and co-workers ! So blessed to call him son in law to be! Thank you to God who knew it , made it happen and now I pray for her recovery! This picture was taken right as I arrived and they were wheeling her away. Nick, Roma, me and Lichelle on her tippy toes in the back ! 💚💙

04/29/2023

It's been 6 months since I last posted an update about Roma's health status. Her levels have been stable, but stable in the way that she is just waiting for the last little bit of kidney function to peter out and then she will go on dialysis. In the meantime, Roma is on the UNOS list to receive a kidney. Thankfully Roma's liver is still in excellent condition from the 2015 liver/kidney transplant that took place in Memphis, Tennessee. .The wait for just a kidney can be long if she is not able to get a living related donor, or a living non-related donor. At this point, her younger brother, Marcos is going through the screening process to be considered to donate a kidney to Roma. Through Roma and Lucas have the auto recessive disease, Marcos does not. There is also no way he would ever develop the disease because he doesn't carry both of the recessive genes that cause ARPKD. This means that he could possibly be a match. Marcos has passed the 24 hour blood pressure test and has completed the glucose test and the 24 hour urine test and we are awaiting results for that. I do believe that Marcos is healthy enough to donate to Roma, but the problem will be the fact that Roma has developed antibodies over the years. She has rejected her Dad's kidney as well as kidney #2 from Memphis. Given that Marcos is half of her Dad it is possible that Marcos shares antibodies with Roma and that would mean her body would want to reject Marcos' kidney. We don't want that. We do have other family back ups so we will see what happens.

In the meantime, Roma is still working her 30 hours at the bank and is working those hours to keep her health insurance now that she is 29. She could apply for disability and would automatically be approved as is anyone on dialysis. However, she chooses to not take the route until it is absolutely needed. She is taking medications now to help her body process the toxins since her kidney isn't working all that well. She is sometimes nauseous, but her main symptom is extreme fatigue, working, napping, doctors appts is pretty much what she does each week. She is lovingly supported by her fiance, Nick. They got engaged in December. No wedding plans are in the near future until she has a better idea about what her health is going to look like for the near future. As her Mom, I'm always proud of her and how hard she works. She has a million and one reasons to lay at home and complain. But, as always, she is at every family event that she can, at work, or doing life the best she can. I'm so proud of her. We know that God knows just the right organ that Roma needs and that He has it all planned. The plan will be shown to us in this next year. Our job is to wait, follow the doctor's advice and wisdom and watch miracles happen. If you want to pray for Roma her prayer needs are : sufficient energy to stay working, less nausea, and the perfect donor. I will be updating a little more often now since there is testing in process about a match.

10/09/2022

10/22 Update /long post. … About a week ago the 7th year anniversary of Roma receiving her double transplant (kidney/liver) in Memphis passed us by! We are so thankful that at age 28 Roma has spent the last 7 years enjoying life /living her life productively. Roma lives on her own with her boyfriend , Nick. She works 30 hours per week at OnPoint. in addition to these things Roma maintains all of her health responsibilities . This means taking meds on a regular basis , scheduling appointments and going to appts. We have known for quite some time that Roma would need another kidney transplant so soon due to a strong bout of rejection about 6 years ago. In fact they told us her kidney would last about 7 years instead of closer to the average of 15 years. The damage done by the kidney rejection was not reversible. But, , like I said she had a great liver and one kidney that was still working fairly well! This past June Roma began the transplant evaluation program at OHSU with the SAME docs that approved Lucas. She found out a couple weeks ago that OHSU APPROVED her to be on the list. She should be listed within the month. This is incredibly GOOD NEWS!! It means we do not have to go elsewhere ! In the meantime, while having a busy summer she has lost the majority of her kidney function and is going to have to start dialysis soon due to being in End Stage Renal Disease (ESRD) she’s been at this spot twice before. Not sure it’s any easier to hear that news, but God had seen her through lot! . It’s time for dialysis within the next month. Would anyone know that Roma was in end stage kidney failure? Probably not, like I said she still works , attends church when she has the energy, was a bridesmaid in a wedding and also lost her grandma this summer with whom she was very close to.
In addition to these things happening she was losing kidney function (her liver is just fine) and she knew it was time to start the Transplant Workup via OHSU. This is where all the extra appts, procedures and blood draws come in. They are TIME consuming and somewhat stressful. Roma should be listed within the next month. Today, she and I sorted through a few dozen forms to read , fill out , sign and mail back to the Transplant Clinic. Roma has started the sodium bicarbonate (not her favorite) and a couple other meds to try to slow the progression of her renal failure . Her creatinine is 4.1 with a GFR of 14. We are not sure what dialysis will look like this time around. Roma had hoped to avoid dialysis and go straight to transplant. But, that’s not the case. Roma is hoping to try dialysis at home. She still wants to work 30 hours a week. The next update will more than likely be an update regarding dialysis. Right now her main complaints are fatigue , (she naps every day) and some nausea from the toxins building up in her system. Hoping and praying for a quick addition to the list, more energy and for dialysis to be figured out. (shortage of dialysis techs in clinics ) 😳 Thank you to all of our friends and families for ALWAYS supporting us!
arpkd

01/23/2022

So I created a post for Roma on Lucas’ page! Lol Not a good sign. Too much medical stuff! Roma will be having a liver biopsy this Tuesday. They are doing a transjugular liver biopsy. See definition below. This is a test needed to make sure her liver is functioning well. We have no reason to believe that it’s not. This is a necessary step for Roma to possibly be placed on the kidney transplant list. Nick, her bf will take her to OHSU on Tues. prayers for her anxiety beforehand, the procedure and that she will be able to rest and relax for a couple days recovering. .

11/18/2021

Yesterday was an emotional day.
Roma and I reported to good Sam at 8 AM and we finished at 12:30. We received the results of all of the tests that she had taken the week prior. We had follow up appointments with the transplant coordinator, the surgeon, the social worker, dietician and the financial planner. However, the information that hit the hardest was the discussion with the surgeon. He was very kind, but he laid out a plan that we weren’t really expecting.. Originally we were told that Roma would be able
To get a preemptive transplant which means that she would not need to go into complete kidney failure before she got a transplant. However, because third transplants are not as successful as first and second transplants are they are recommending that Roma ride this kidney out as long as she possibly can. So that means having to do dialysis before she can get her transplant.
She had really hoped to avoid dialysis because it is not easy. The surgeon also told us that due to Roma’s antibodies it could be harder to find a match. If she is approved to receive a transplant then she will be listed on the UNOS list. Average wait time is 5 years if you dont have a living donor. So, getting her listed is important. Roma will talk to the family members who want To be tested. there is a lot of information to consider whether to donate or not. It might end up being that only a cadaver kidney will match Roma. So basically we came out of the appointments feeling a bit discouraged. We had hoped that she would be approved for testing and then the transplant right away but that’s not quite the way it’s going to work this time, So it was a lot of info to process. Right now Roma has a creatinine of 3.9 and she has a GFR rate of 15. She feels pretty good most of the time. She is pretty fatigued and does have some nausea but that is to be expected . They will keep a close eye on her creatnine.. We left feeling a bit discouraged. However, sitting around thinking about it/worrying about it isn’t super helpful. So this evening, I drove out to cheesecake factory and got Roma a piece of her favorite cheesecake and dropped it by her house. I know a a slice of lemon raspberry cheesecake won’t make everything go away, but maybe it will help a little bit! Like Roma said, “its going to all work out how it’s supposed to”!
I love her faith over fear attitude! Things can change quickly in the medical field too. Advances are made all of the time. We have God on our side too. We pray that the best path for Roma is clear💚.

11/12/2021

It’s been since September since I updated about Roma’s health. Time for another update! Today was a bit of a rough day. But, some back history. At the end of September she had an appt with her Good Sam Transplant team. Roma is going through the Legacy Transplant system while her brother, Lucas is going through the OHSU system. However, soon we hope she will join her brother on the Regional Transplant List. She has had a few important doctors appointments in the last 2 months. Late September she had 25 vials of blood taken. This is the standard procedure for a transplant work up. As a reminder , Roma received a kidney transplant in 1999 at the age of 5 due to Autosomal Recessive Polycystic Kidney Disease. Around 2013 that kidney began to fail. Roma was not accepted by the OHSU transplant team, but was accepted by Stanford as well
As the Methodist Healthcare Transplant Team in Tennesee. In Memphis, after just 6 weeks on that list she was transplanted. It was Sept 27th , 2015. In the last 6 years Roma has gotten her life back. She has been working in the banking industry and doing well there. She isn’t tied to the dialysis machine 12-16 hours a week. She’s been able to live. She’s been able to take some vacations with her boyfriend, Nick, who is a Marine (Happy Vet’s Day) and they have gone-on some joint vacations with other young couples. She bought a car… and has enjoyed taking wayyy fewer medications. Her liver has done quite well. But, over the last year Roma’s kidney has begun to reject. It’s the type of rejection that isn’t reversible. So, she has been more fatigued, struggles with some nausea and needed to take a leave of absence from the Bank. She was off about 6 weeks. She did some virtual counseling because being sick is hard and being sick in a pandemic when h work with the public is a lot too. I’m proud of her for wanting to make sure her mental health is good in addition to helping her physical self. She is back to work now and finishing up the transplant work up. Unfortunately we had to speed things up because Roma’s kidney function , her creatinine, has increased significantly. Sept 28 she was at 3.1 and now is at 3.9. At any time now she will need to begin dialysis. Today, she had a stress test, an EKG, an echocardiogram, an ultrasound of liver and kidney. A cat scan and more. It was 4 hours of tests. And about 16 hours of no food. That’s a pretty intense day. She stopped at a Chinese restaurant on her way home and ordered some white rice. She took a couple bites in front of the restaurant in her car and then felt sick. She opened her car door because she was dry heaving. Unbeknownst to her, her wallet must have dropped off her lap and into the street .She got home , threw up a bit and got in bed. She slept a good 4 hours. When she woke up she was feeling better and was heading out to her Dads for dinner and that’s when she noticed her missing wallet. While she was napping someone had used her debit card (fortunately she didn’t have a lot of money in the bank ) so they didn’t get more than about 100$ , but what a mess it is to lose your wallet. It’s like adding insult to injury! Tuesday, she has her final appt with the Transplant team. They will look at all of the tests from today in addition to the recent blood tests and decide if she will be accepted for a kidney transplant thru their program. She will then be placed on the wait list which is quite a few years long. However, the hope is that her brother Marcos or cousin, Katie will be a match. Best case scenario is that she is accepted, there is a match and she would not need dialysis and would receive a kidney fast. But, as we know , this is not going to happen on our timeline. It’s all on God’s timeline. For right now, I pray she just has an easier day tomorrow. But, I can say that my daughter continues to amaze me with all she handles in her life while not feeling 100 percent. Never (or at least rarely) a complaint . Thank you for reading this very long post. I will update again on Tuesday after the appt with the Transplant Team at Good Sam. Thank you for all of your support also…

09/09/2021

New update. Back in March I posted about Roma and the fact that tho she had a liver/kidney transplant In Sept of 2015 in Memphis Tennessee. (This was after 2.5 years of dialysis). Her liver since then has done great! However, the kidney part was not as successful. So, 6 years later her creatinine is at 3.0(normal is 1.0). This means that Roma will be facing dialysis by the time she gets to 4.0. In order to avoid dialysis she is being pro active and has already been accepted to the Good Sam Transplant team in NW Portland. In order to start the testing the social worker had a few things that Roma needed to complete. She has completed most of those or is in process. . She is now on a leave of absence from Onpoint for 2 months so that she has time for doc appts/tests/exams etc. On Sept 28th we have her first meeting with the transplant coordinator. Our hope is to avoid dialysis altogether which means she could have a “pre-emptive ” transplant. (This means she could get a transplant from a matching family member or friend before her kidney fails altogether). Her brother Marcos and cousin Katie will be tested first as they have both offered to share a kidney with her if they can. I love them so much for being 20 somethings and sacrificing for Roma. I can’t even express it. We hope and pray one of them will be a match and healthy enough to do it so their own health is not affected. I am so thankful that Roma has been working for onpoint because she does have some health insurance (tho she will need additional insurance for transplant. ) Thank goodness for her health insurance and short term disability through Onpoint. Because she is off work awhile she is able to help with getting Lucas picked up from dialysis at 10 am on Tues and Thurs. it’s about a 25 mile round trip for her so I appreciate her willingness! I’m just so thankful for her and for my kids in general. Their love and care for each other is what keeps me going! Praying for the testing. Praying for a match.

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