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Posts (90)

2 days ago · 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?

Thu, Mar 7 7:19pm · Glucose Level of diabetics? in Diabetes/Endocrine System

@susu2 you mention a “top number is 130 and lowest number is 80”. That sounds like BP numbers. Are you talking about blood pressure? Then you mentioned a test before eating of 180. That is rather high.

Thu, Mar 7 7:11pm · Glucose Level of diabetics? in Diabetes/Endocrine System

@gamesjr not necessarily. You said it was a non fasting blood glucose. What you ate and when you ate it in relation to the time of the test makes a difference. A better measure would be a baseline fasting glucose or a Hemoglobin A1C.

Mon, Mar 4 7:10pm · Waiting for a kidney transplant in Transplants

I’m trying to post a picture of a flyer I received from Mayo (Rochester). It is a workshop being put on in St. Paul, MN for those who need a kidney transplant. It will focus on: finding a living kidney donor, educating family and friends about living donor kidney transplant and telling your story through social media outlets and other channels. It is cosponsored by National Kidney Foundation, Mayo Clinic and other MN transplant centers. It will take place March 31, 2019 from 12:00 pm to 5:00 pm at Wellstone Center 179 Robbie St. E, St. Paul, MN 55107. To register https://www.tfaforms.com/4712498 Questions? Contact Katelyn Engel 651-636-7300 x421 or katelyn.engel@kidney.org

Fri, Mar 1 5:57pm · I don’t know what it is. in Diabetes/Endocrine System

@jellaO I’m sorry you have been experiencing the symptoms you describe and that you have an incurable kidney disease. The symptoms you describe are typical of diabetes but a one time sweets indiscretion is not likely to cause diabetes. However, you are wise to be concerned since you already know that you are prediabetic, have a family history of diabetes and your last glucose tests were a bit high. Diabetes and high blood pressure are two of the most common causes of kidney problems. I would get it checked out if I were you. If there’s a problem, the sooner you find out the sooner you can start taking care of it and protecting your kidneys.

Thu, Feb 28 4:41pm · WART REMOVAL in Skin Health

@larrysteel I’m Cheryl @cehunt57 that Ethan McConkey mentioned. My experience with warts involves planters warts on my feet when I was 11 years old and again last year. (I’m 62) When I was 11 my mom took me to the Dr. and it was cut out, packed with antibiotics and I had an oral antibiotic. It took me out of jump rope for a week but I was fine after that. My best friend had the same thing and she ended up being tortured with freezing and acid treatments for a long time (because it kept coming back). What happened last year was a little different. I am post pancreas transplant and I’m on immune suppressant medication. I have to have a skin cancer screening once a year. Last year the dermatologist diagnosed planters warts on my feet. He gave me a self care treatment plan called soak, scrape & tape. I soaked in hot water with Epsom salts, scraped the warts with an Emory board or pumice stone, applied over the counter wart gel and then taped them up. I faithfully did this for a couple of months and it didn’t help at all. (In fact the warts spread.) Maybe it would help with a different kind of wart in a different area? I was repeatedly told that warts can be stubborn and that my problem was the immune suppression meds. I went to a podiatrist after a couple of months and begged for the things to be just cut out like when I was a kid. I was promptly told that that isn’t done anymore. So I went all spring, summer & fall with alternating freezing and/or acid treatments. I finally decided I couldn’t take it anymore. The podiatrist referred me back to the dermatologist to consider some sort of injections. He had issues with that because of the immune suppression. He had one more suggestion. It was a topical gel that is part chemo and part acid. It wasn’t covered by insurance and only 1 pharmacy in my state has it. I believe it was called NuCara. It was about $100 out of pocket. I used it for a couple months. It seems to have killed the warts but also some of the healthy tissue around where the warts were. It turned hard, white & plastic like. It is supposed to slough off as it is replaced by new skin. That hasn’t happened yet. I go back next month to dermatology for my annual check up and will ask about it then. Hope your grandson’s warts get resolved.