Hey all, i just got the research request that I'll post below. Can anyone valididate if this is person is legit? Not sure if anybody other than me got this:
Hi RonZone,
My name is Mateo Jaramillo and I'm a graduate student at Stanford University. Currently I'm pursuing a research project regarding CKD and the different treatment options patient have to find new innovative ways to improve the patient experience in this journey. I felt very inspired by all your posts and would love to have a 30 minute chat with you to better understand your experience, especially using PD and hopefully build together a solution that improves your experience all together. Thank you in advance for your help,
Mateo Jaramillo
MBA 24' Stanford University
Written by
RonZone
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I wonder if there's two guys named this same name. The one you found who used to work for Tesla, and this guy who's working to improve CKD therapy in Latin America:
Hey Ron! Just look his name up and the university as I just did. He is legit according to what I see. I used to tutor business students and it is not at all unusual for them to seek out interviews for their course or project work. It adds legitimacy to their research to get first hand accounts. All the best!
☺ Not surprised he'd want to chat with you. Your contributions on this forum have been so thoughtful and thorough! Wishing you a fruitful exchange tomorrow!
i wish I knew more to help those who ask questions and I just don't have a clue what to tell em about their specific issues. I know mine, but they're pretty limited. I don't have a lot of the co-morbidities that others have. Yeah I'll see what this guy wants.
I sent a note to the admin of this forum to see what they say. Also sent a note to him asking him to provide a good link to more info about him. This is what I found on my own:
Ok he just sent me this link to his work at Stanford. Seems to be more business oriented than medical, so will be interesting what questions are asked:
he contacted me too. He is a student at Standard. I’ve agreed to “chat” with him via zoom this week. It does look as though he’s not a medical student. However, as a business major he may be thinking about identifying something that can be produced and marketed to help those with CKD, their care providers, etc. I’ll be interested to see what questions he’s asking. I’ve asked him to send me the questions prior to the zoom session. This is fairly standard research protocol for qualitative studies. If he’s unwilling to send the questions in advance of the zoom session, I’ll cancel the zoom session. I’m also likely able to find his faculty advisor so can reach out to him/her if this goes south. One other thing, I asked him to send me information about the course for which he’s doing this project, that’s standard protocol as well.
Bottom line? I give explicit instructions as well as a letter from me they are to share with research participants. They also have to get their research project approved by IRB prior to starting it. So, it’s always a good idea to ask for this sort of information.
That being said, I strongly encourage any research that could better the lives of persons with CKD. Consequently, im interested in participating IF this is legitimate.
I almost send you a private message asking for your take on this. I KNEW you would be "in the know" on how all this works. Let us know what you find out. If they really are interested in bettering CKD treatment in Latin America, that would be a good thing I would think. I guess it's hard for them to get any Dialysis clinics in the US to give out patient information or grant access to their facilities, so this is probably one of the only ways they have of contacting anyone. Though you would think the university should have some kind of working relationship with clinics in Palto Alto. Is that not the norm?
we have students from around the globe who come to study here in part to forge the sorts of relationships you mention. We’ll know soon enough if this is legit or not. Certainly the approach used in this case isn’t garnering much trust amongst the community!
I've gotten the same request - he's looking for my views re caregiving. Everything in the world is a business if one thinks about it - dealerships, grocery stores, churches, hospitals, even oneself. I've taught numerous business courses at several colleges, everyone of them included international students. (One memorable student sitting in one of classes was a cardiologist from India.) Some stay here, some go home. In higher education, it's not unusual for students to involve themselves in research while pulling together a thesis, a dissertation, etc. It's difficult finding great sources for this type of research, particularly in the medical field due to the stringent HIPAA law and others, but this person was resourceful in finding HealthUnlocked. Kudos to him. However, if anyone senses this is a phishing scheme or something like that, I hope we'll be alerted.
Ok, just finished my interview that lasted 45 minutes (we went over cause I got on my "preventive" soapbox They did send me a list of questions last night that they were going to ask me, but it seems the questions are specific to each person, so I won't post them here since they will be different from what they will ask each of you. But they do seem to be legit college folks doing research and this is one of the only ways they can get information. Here's the gist of the overview that they sent to me:
Yes off course. Given that we are mostly interested in your personal experience we are creating a tailored one-to-one interview questions based on what I read from your previous posts. So for example, I would love to learn more about your experience with PD, asking you more about your experience deciding using PD vs. Hemo, what would you change from the machine, even "dumb" questions like if you would prefer a different beeping sound. There is no preparation needed from your part, we really just want to catch your own personal experience and find together ways of making that experience better. But off course I can send you later in the day some questions we will like to ask you but also if you think we missed something please just feel free to add it. Also if in the middle of the conversation we need to spend more time on a particular subject and we don't reach all the questions that is completly fine, we just want to hear what is most important and pressing for you.
Topics they asked me about:
Pre-dialysis support from/time with docs (this is where I got on my soapbox and took too much of their time)
Choice of dialysis method and influencers
Post-dialysis support/time with team
Interaction between doctors (kidney, heart, PCP, etc)
Navigating insurance options
PD training experience
Home accommodations for PD
Travel with PD
They were very easy to talk with and understand. They kept the interview non-technical, so folks without much technical background could respond.
Very similar to my experience with them. I am sure they’re masters students at Stanford. They’re also apparently thinking CKD treatment needs much improvement in Mexico. This will be a business driven situation in many ways. But business that includes in its exploration taking with patients is something I wish I saw more of.
yeah, they seemed to be genuine. Hopefully they will develop something that will be helpful to Latin American folks. They did say that 70% of people in Mexico have government provided insurance that pays for dialysis, which I would not have thought would be the case, so that's a good start. But I'm sure access to good Nephs and dieticians and all is probably sketchy there. I hope you were gentle with them and didn't make em work to hard with your very professional interview. Mine was more of a "man on the street" type of thing
I did emphasize the problems letting the two major dialysis companies monopolize the market creates for patients; it really does seem to lead to poorer care—certainly less patient choice.
I also mentioned the problems that arise with conflicts of interests for nephro with regard to the roles they play in the for-profit transplant centers verses provision of patient-centric care. I shared some specific examples that I’ve run into related to this when hunting for a dialysis center flexible enough to allow me patient choice. (Of course, this was when I was told that dialysis was eminent.)
Patient choice, true choice, is critical. Patient self-advocacy is also critical. I suggested that they set goals from the beginning of a high percentage of all dialysis patients receiving in-home independent treatment programs rather than in-center treatment therapies if for no other reason than it will allow more of them to be fully employed. Plus dialyzing daily is MUCH better for overall health; it’s as close as we can do right now to replicate what our kidneys do naturally. Toward this end I shared with them the continuum of services we use in special education to serve students with special needs in the setting that meets their unique individual needs with options ranging from attending classes with students without disabilities full time to part time to special classrooms in the same building to special schools that serve only students with special needs to residential schools to serving these students totally at home. By far the majority of students with special needs attend regular public school classrooms. Conversely, a very small percentage of students with special needs are educated at home, etc. I then asked them to spend some time brainstorming what this sort of continuum of treatment options and supports could look like for persons with CKD… How might it benefit them thereby also benefiting society as a whole?
They seemed very interested in thinking about development of a hierarchy of treatment options that put the patient in the drivers seat so to speak. Anyway, that’s essentially how my “chat” with them went.
Wow, that's exactly how I thought your most professional response would go. Awesome. You offer such a better view of what their needs are than most of us would be able to do. I'm sure they very much appreciated your input.
Somehow, and it does seem to be quite the mystery for my transplant center, I’ve managed to test positive for CMV about 10 days ago. This is inspite of me and the donor kidney both being CMV negative and me living a celebrate life-style.
CMV is very contagious. By my age close to 80% of the population has it. It’s related to the herpes virus that causes chicken pox and shingles. Anyway, it’s transferred via body fluids only. So it’s passed through saliva, urine, blood, and bone marrow or solid organ transplants.
Since I live alone and am not sexually actively; I definitely don’t share cups, eating utensils, etc., and I’ve had no blood transfusions, the only thing on the list that pertains to me is a solid organ transplant. But with the donor organ testing negative that seems unlikely as the way I picked this up.
Frankly, the transplant nephro took me off Valcyte, the medication that protects transplant patients from CMV, a little over 2 months early saying specifically that I was essentially no risk for CMV.
I’m now taking Valcyte again at a much higher dose. The few symptoms I had been experiencing seem to be gone now, I’m waiting for lab results from this past Wednesday to see how the CMV viral load looks now. I’m hoping for improvement. My white blood cell count was finally back up where they want it in the low normal range tor the first time since the first week of February. Low EBC is one of the symptoms of CMV so perhaps this undetected CMV was what has been causing difficulties with my EBC count. If do, that would a silver lining to this situation!
I’ll have CMV in my system for the rest of my life. I’m not sure what they do to manage it but should find out this next Tuesday. Bottom line, it appears to be treatable and my kidney has weathered all of this while still working very well. Plus I'm feeling well again 10 days into treatment for this virus.
Hey, actually that's exactly the kind of information I want! Thanks for the update. Really glad that you're able to get this under control. As to the cause. tests can be wrong as you well know, so your donor kidney, or even if they gave you some blood during the surgery might have been the source. Now I could make a joke about your wild lifestyle might be the source, but I'll keep this note more on a serious note I do understand that this is a very common event. Lots of people get this post transplant from what I've seen in posts over the last several years. Very glad that it's treatable, though not fun when it flares up. And yeah, if you have finally found the source of your low EBC, that would be good to know. I just got the shingles vaccine a few months ago. I've had shingles twice in my live. once when I was 10, which was the most miserable version, so I understand about viruses that live with you forever. The shingles vaccine made me feel sick for a couple of days, but that's way better than getting shingles again, especially now on dialysis. So this is something you will just have to keep tabs on (as if you don't have enough to keep tabs on already!) So thanks for the update my friend. Do what you can do to take care of yourself! That's what we are all doing as best we can.
My labs for CMV and WBC count came in yesterday. My WBC count is highly improved! It went from 2.15 to 5.6. So it’s in the low normal range where they want it. We’ll see if it stays there. If so it could mean that the CMV has been the cause of my low WBC count. That would be good.
The CMV showed an improvement in viral load too. It improved from 8540 to 1340. Of course this is still showing that I’ve got ongoing virus replication. I’m not sure how low they need to see this. I’ll find out in my appointment this coming Tuesday. Regardless, this improvement indicates that the medication, Valcyte, is working.
I do think this has to come from the donor organ. You’re right that the tests aren’t 100% accurate. Plus they only ran two back to back checks on the donor kidney. They ran them on me at the same time. The difference is that those were the only checks the donor kidney had for stuff like CMV, I think. Of course, I had had about 3 years worth of monthly CMV labs run consistently coming back negative. (Those days are clearly over…)
However, I’m feeling pretty good now. It’s treatable. I’m past the initial shock. Time to move past this.
Hey, really glad things are looking better. And yeah, once you get this under control, hopefully it won't bother you and you can just forget about it and focus on regular normal life stuff.
I would just Contact 'Stanford University' and ask if this is Genuine, or not. Personally I know, hardly anything about PD- except what I have read. I was 'on' HD, for four years (almost exactly) prior to a Transplant- nearly ten Years ago now (July 2013).
If I weren't a lazy person, I would contact the University, but the questions they ask were pretty general and benign. Nothing specific, so I'll let it go Now if someone else wants to contact Stanford, that would be cool. Wow ten years on transplant, that's awesome! Nothing rocket science about PD. the machine pumps two liters of sugar water into you every 2 hours during the night, then drains it out before pumping in more through a plastic tube called a catheter that goes from the outside through the abdomen near the naval then down inside the abdomen cavity. The sugar water pulls toxins from the tiny blood vessels in the peritoneum lining of the abdomen, basically doing the kidney's job.
Does that NIH paper talk about the whole "feeling pregnant" feeling with all the fluid inside? It's the closest thing a guy like me will ever get to the experience, I'm sure
Lol! That made me giggle. Oh my...maybe, some day soon, medical science will come through to the point that no man, woman, or child should ever have to experience dialysis of any kind, including the "feeling pregnant" form of PD.
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