Beech Tree News Network

Having your appendix removed should be no big deal, right? If you think not, Becky Grise would like to share her adventure of having this “normal” procedure done with you. At the age of 28, Becky Grise developed appendicitis. In order to keep them from rupturing, she entered the hospital as a “normal procedure” to have them removed. The protocol was to enter the hospital, go home after the procedure, OR worst-case scenario, the next morning. All seemed to have gone well with the laparoscopic surgery until she began passing blood through her urine. This, needless to say, sent up a red flag for testing.
After numerous test and many unanswered questions, it was finally discovered that Becky had inherited something, and it was not wealth. It is a kidney disease. Polycystic kidney disease to be exact. This is a genetic disorder in which the renal tubules (essential structures in the kidneys) become structurally abnormal. The result of this abnormality is multiple cysts within the kidney. When Becky’s diagnosis was given she had seven cysts in the right kidney, and five cysts in the left kidney. Most usually this is passed down from one of the parents, but Becky stated that neither of her parents was carriers. With no one in her immediate family having this disease, she will probably never know who she inherited it from. Most of the time we are grateful for inheritance, not so much in this case.
For the next several years, things seemed to be going well for Becky. She made regular trips to her kidney doctor to keep a very close eye on her creatinine and bun numbers. I am clueless when it comes to terms concerning many medical issues, and this is no different. Becky enlightened me on what these mean in this case. These numbers let you know how your kidneys are functioning. Hers seemed to be holding their own, and there was no need for alarm or any further action.

Approximately seven or eight years ago (2010 or 2011), Becky became extremely ill which resulted in her having to be taken to the emergency room where she was diagnosed with pneumococcal pneumonia. At this point, with the infection being so bad, Becky was the recipient of 17 bags of steroids. While this did make her pneumonia symptoms much better, it sure did have a down side; it shot her creatinine up to four. A normal range Becky told me is less than one. Since then, hers has gone up to 5.8 but is now 5.6 at last checkup. After all, the chaos from pneumonia and the massive amount of steroids was settled, her creatinine fell back down to 2.8 and did remain there for several years. But in the last few years, it’s began slowly creeping back up. Her BUN number is currently 60, and it should be less than 20 for a normal kidney. Becky’s GFR (filtration system) is 8. The norm in adults is 60 or above.
In 2017, Becky’s kidney doctor began talking to her about dialysis. As this would be for any of us, even just talking about this was extremely scary for Becky; to think she was even at this point. Even though the doctors would rather see her receive a kidney and not have to face dialysis, they still wanted her to be familiar with the process of using dialysis in case it becomes necessary. At that time, scared and confused, Becky asked the doctor “So, what am I looking at dialysis wise?” “When will I know?” The doctor informed Becky, she would definitely “know” if/ when that time arrives. She would begin having lots of nausea times and sick stomach. They will also always monitor her creatinine and BUN numbers, and that will tell them as well. In trying to comfort Becky and give her some ease, he told her as long as her body could handle the situation, she will not go on dialysis. Becky took a trip to the dialysis center in Bowling Green to see what it was all about and what she would possibly be facing if things went from bad to worse before a kidney was offered.
At this point, I asked Becky if she was on the transplant list yet to receive a kidney and fortunately the answer was yes. She went through the process with me of what she had to do to be able to get there. She chose to go to Lexington, and that is where they put her through the ringer for a day. “Test after test after test,” she said, “an all-day ordeal.” The doctor told her she was “perfectly healthy” to be put on the recipient list. Even after passing all the test and getting approval from the doctor, it doesn’t end at that. It had to go before the medical board and be approved by all of them as well to be placed on the transplant list. They informed Becky that this could take a period of time but within a week, Becky got the call; by the grace of God, she was approved. She was put on the University of Kentucky transplant list on July 5, 2017. When you are in need of a kidney, you are allowed to be on two lists, so her next step is getting placed on the transplant list at Vanderbilt. She says, “it will happen in God’s time, not hers.” (she made this statement many times during our interview).
Becky and I talked about the odds of receiving a kidney and what those odds appear to be. She said the doctors had told her that she is probably looking at four to five years before she might receive a cadaver kidney. The chances of her being able to wait for that without having to go on dialysis is not looking good. Becky has been told about a few different options that might be available sooner, and one is a “high risk” kidney. I wasn’t sure what this consisted of; Becky stated that it would be a kidney from someone that might have overdosed. I asked Becky if she would consider this and she said it would just depend on where she was along this journey at that time if she were to get the call. She won’t rule it out, but she will cross that bridge when she gets to it if it comes about.
A very interesting thing Becky sounded excited about is the idea of a mechanical kidney. Tell me the medical world hasn’t come a long way! Becky said it was so exciting to hear about because honestly, it sounds perfect. The doctors that are working on this say there are absolutely no chances of the body rejecting it and there are no side effects. First and foremost, the downer to all this is that it is NOT FDA approved yet. Becky said there are already over 3000 people on a list for the clinical trial that will take place. I asked her if she’d be willing to take it and without any hesitation “heck yeah I’d do it.” After Becky told me about this insane piece, I had to do some googling. I came across a site that had some very interesting information (nephrologynews.com). It is currently in preclinical trials. It is being developed by the University of California at San Francisco and Vanderbilt University. I urge everyone to read about this amazing piece of what will make medical history I’m sure.
Right now, the cyst that began in Becky’s kidney’s (water filled cyst), are all through her body. They are now in her liver, both kidneys, pancreas, ovaries, and numerous other places. So many she said “you can’t even count them” The only way the doctors can explain how they are spread all through her instead of just detained to her kidney goes back to her appendix surgery years ago. Having done her surgery laparoscopic, they believe it must have pulled the cyst loose, and the polypus would pop and make more.
With all the cyst she now has, it is a concern of Becky’s that the disease she has may attack a new kidney when she receives one. She talked to the doctor about the odds of this happening. He says that will not happen. The only way possible, according to the doctor, is if by a slim chance, the donor's kidney had one cell of this disease and they didn’t detect it before transplant. But the odds of that are slim to none.
I talked to Becky about a “normal” day in her world dealing with this disease. Besides having to take numerous amounts of drugs, and visit doctors regularly, her biggest issue is that she gets worn out extremely easy. She currently works in the cafeteria at Morgantown Elementary and plans to continue doing so as long as she is able or until she has to begin dialysis (she cannot work if she is on dialysis because she won’t be able to lift what she needs to). She does a lot of lifting, and she said by the end of the day, she is just ready to lay down. On her days off from school, she said they are much easier because she can pace herself and rest when rest is needed.
With Becky now being in Stage four severe renal failure, I felt it imperative to reach out to everyone possible to find this wonderful lady a kidney. Stage five, which is considered END stage, is when she would have to begin dialysis. So, from this point, we talk about how to help Becky receive the kidney she desperately needs.
Becky has 0 positive blood type. I don’t know about all of you, but I thought if you don’t have 0 positive blood, you could not even be considered; where as in fact, that is not the case. There is so much more to this than I even had a clue about. Of course, there are numerous test that has to be performed even if you are a blood type match. If your blood type does not match, but you want to be considered, there is a program called the Kidney Paired Exchange Program that can be done. This would just involve more people. There would involve two living donors and two recipients. Yes, I was confused when I first began listening to Becky explain this to me.
If the recipient from one pair is compatible with the donor from the other pair and vice versa, a “swap” can be arranged Becky stated. This occurs when a living kidney donor is incompatible with the recipient, and so exchanges kidneys with another donor/recipient pair. An example from hopkinsmedicine.org; Suppose there were two donor/recipient pairs, Donor and Recipient 1 and Donor and recipient 2:
* donor one would give a kidney to recipient 2
* donor two would then provide a kidney to recipient 1
I don’t know about you, but this is very overwhelming to me to try to comprehend. But the great part is; Becky has a coordinator that takes care of any and all questions. Her name is Lynn Polly, she is located in Louisville Ky, and her number is 859-323-5737. Becky does ask that anyone considering becoming a donor, please talk it over with your loved ones, pray about it and be 100% sure before you even contact her coordinator. It is a huge on taking and needs to be extensively thought over.

Meeting with Becky and having a heart to heart with her about the need she has, certainly blessed me. Becky and her husband attend Union Baptist Church in Morgantown Ky, and she let me know how much she loves her church family. She said she couldn’t imagine what kind of mental state she would be in without them to lean on. With her husband being away so much for work, she knows she can call any of her church family, and they would be right by her side. Her faith is amazing and so visible. She said numerous times through our time together “this is God’s time, not my time.” One last thing I want to mention that Becky said. “I can sit here and think woe is me OR I can choose to get busy and live….I choose the latter.”
Again, if you are interested in possibly donating a kidney to Becky, contact Lynn Polly 859-323-5737.

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