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Posts (95)

Tue, Sep 17 10:49am · My dad has a mass on bladder and kidney not functioning in Cancer

@formydad, you all have a lot going on. I’m a believer. Have been keeping you in my prayers and lifting all this up to the great physician who knows what you need.

Sat, Aug 31 12:14pm · Any double donors out there: liver and kidney? in Transplants

@rebekahinvt my daughter donated a kidney to my f-i-l (her grandpa) in 2003. Now I’m in need of a kidney myself. My daughter thinks outside of the box. She called Mayo to ask if she could donate part of her liver to someone on my behalf in exchange for a kidney for me. She was told:
1. A living liver donor & liver recipient need to be related in some way.
2. The paired donation exchange chain doesn’t work the way she proposed (across organs).
3. She would not be considered for living liver donation since she had already donated a kidney.
That’s our story. Perhaps things are different if the liver donation came first and then the kidney donation? Also various transplant centers establish different policies, criterion, rules & regulations.

Mon, Jul 1 12:45pm · Has anyone heard of an artificial kidney being made? in Kidney & Bladder

@marvinjsturing so happy for your acceptance, approval & listing on the kidney transplant list. You have waited a long time and this is an answer to many prayers. Now I assure you that more prayers are going out for your sister. God’s plan & timing can be trusted!

Sun, Apr 28 7:16am · SPK (simultaneous pancreas and kidney) transplants in Transplants

@benlam11, I’ve forgotten what kind of transplant you are pursuing, but when I saw your post it reminded me of my father-in-law. I want to share his experience with you to encourage you. Dad had ESRD and needed a kidney transplant. He had previously had heart bypass surgery and a valve replaced. He also had blocked carotid arteries. He underwent carotid endarterectomy on both sides. He ended up getting his kidney transplant at age 76. My daughter/his granddaughter was his living donor!

Sat, Apr 20 10:37am · Trouble with everyday realities of diabetes in Diabetes/Endocrine System

Hi hotfooted @hotfooted, I am Cheryl cehunt57. I wrote the post just before yours. I’m 62 years old. Since age 18 I’ve been Type 1 diabetic, post pancreas transplant and now type 2 diabetic and CKD (chronic kidney disease). The symptoms you describe weight loss, “tummy pain, jitters, night sweats, numb tingling feet, weak and shaky” can be associated with any type of diabetes &/or the complications of it. You didn’t mention what meds you have been put on. Medications themselves have side effects and could be causing some of these symptoms. It sounds like you could benefit from a follow up appointment with the provider that diagnosed the type 2 diabetes. Describe your symptoms and get more information about your medications. Ask for a referral to a nutritionist for customized recommendations depending on your conditions.

Tue, Mar 19 6:40am · Waiting for a kidney transplant in Transplants

@colleenyoung I did post it to the Waiting for a Kidney Transplant discussion on March 4 along with a picture of the brochure I received from Mayo (Rochester, MN). It shows up on my screen if I scroll up from where I am now. I also thought it would be good to list. It never made it into the daily digest and when two other volunteer mentors also liked it, the notification emails turned up in my junk mail. I figured it got lost to those that are following that discussion. My husband and I are attending this workshop. I am listed at Mayo for Kidney Transplant (inactive) and have been looking for a living kidney donor for 3 years now. I know there are many others in worse shape than me. We need all the help we can get. Is there anything you can do to put the word out on this event and maybe draw attention to the brochure? It is a nice brochure.

Sat, Mar 9 2:16pm · Victoza? in Diabetes/Endocrine System

@ethanmcconkey thank you for your reply and the link to Victoza side effects. It was much the same as what I’ve read and researched already except it also had a good explanation about GLP-1 that I’ve been wondering about. In regards to my queasiness, it hasn’t affect what I eat at all. I’m just not very hungry ever and sometimes the thought of eating makes me feel like I might vomit. When I eat, the amount is way less than what I used to eat. It takes me a long time to get started, a long time to eat and often I will just suddenly feel full and feel like if I put 1 more bite in my mouth I might vomit. My husband is ending up finishing my meals &/or I end up having a lot of leftovers! Thus far I haven’t had more severe side effects like: vomiting, diarrhea, constipation, stomach pain etc but I feel like I’m right on the verge of it. I just remembered from the last flare up I had of gastroparesis (2012) is that normally good nutritious foods that help control blood sugar such as high fiber, whole grains, legumes, fresh veggies & fruits are not tolerated well with gastroparesis. At the very least I see that this is going to be a challenging balance act.

Fri, Mar 8 10:51pm · Victoza? in Diabetes/Endocrine System

I’ve been diabetic a looong time: Type 1 at age 18 in 1975 followed by developing various complications; one of which was autonomic neuropathy/gastroparesis. (Had two serious attacks of this requiring hospitalization 2002 or 2003 & 2012.) In 2005 I had a pancreas transplant and though I didn’t become insulin independent I did reverse, stabilize and improve some of the complications I had and decreased the insulin requirement to a tiny amount of what it had been pretransplant. Since that time the retinopathy reversed, peripheral neuropathy reversed and I slowed down the progress of CKD. I also had my first normal Hemoglobin A1C (5.3) since being diagnosed in 1975. In 2016 things began to change. I guess the honeymoon was over. Blood sugars & A1C plus insulin dose were going up and CKD labs were worsening. I qualified for kidney transplant evaluation and ended up being approved/accepted and listing at Mayo in Rochester. This has been reviewed yearly since then. My GFR has incredibly bounced between 14 – 42 over the past 3 years and is currently 21. Last September it was 29 and my waiting list status was changed to “inactive”. I’m sorry this is all background to what I’m concerned about now, but it might be relevant. When I was reviewed in September at Mayo the endocrinologist I saw emphatically said that I was Type 2 Diabetic. This was a bit of a shock but the endocrinologists I saw in the previous two years alluded to the same thing. We discussed various treatment options and one option was to start a non insulin injectable that I think he called a GLP 1 agonist. He prescribed a med called Ozempic. Then began months of battle with insurance: it was not covered, their suggested alternatives were not safe for my level of CKD, submitted preapproval/prior authorizations that were denied, appeals that insurance claimed they did not receive ….. All the while I was getting worse. I saw my local endocrinologist in January. She reviewed the Mayo docs notes and prescribed Victoza. She gave me a sample and a REALLY conservative dosing schedule. I started with .3mg (half the minimum dose) to be gradually increased as tolerated every 1-2 weeks. I came home and thought I was off to a great start until I read all the literature enclosed with the Victoza. “Causes a delay in gastric emptying”, aka gastroparesis”! This scares me! I already have a history of gastroparesis. The side effects of Victoza are the same as the symptoms of gastroparesis. It is very unpleasant! I called my doctor’s office to inquire about this. I was able to send a question to my Dr. via a nurse. She confirmed that yes the side effects and gastroparesis symptoms are the same. I already knew that. I think what I really wanted to know was is this the best of med choices for me? I really like and trust my Dr. and would like to have a heart to heart talk with her but she is booked out until August. I’ve been on Victoza since Feb 1st taking the dose increase very slowly. I’m at .9mg now. I’ve experienced a loss of appetite and bouts of queasiness every day. I dread the possibility of anything worse. The good news is that I’ve lost 9# and my blood sugars are increasingly staying in range. I have a follow up appointment with a CDE at the end of March. I’ve seen her before and she doesn’t have experience with gastroparesis. I also have my name on a list for a call if there are any cancellations/openings with my own Dr. Can anyone out there weigh in on this?