Hi, I'm Jessie from Pennsylvania. My 24-year-old daughter inherited MEN1 from her father. Rachel's kidney stones also started in college - around 9 so far with 3 stents and 2 lithotripsies. Her urinary tract infection has been resistant to the antibiotic prescribed by her urologist. He believed she would be able to pass the remaining stone but I brought her home yesterday after 5 nights in the hospital. This last one was completely blocking the ureter and led to a kidney infection. Ecoli was beginning to form in her blood. A stent opened the blockage which also brought her white blood cell count back to normal. Her fever kept spiking, especially at night, with chills, shaking, and constant nausea. A specialist was called in to study the culture from her urine sample and prescribed another antibiotic for her IV that took care of the infection and her blood is now clear. Rachel was diagnosed with mono about a week before going to the emergency room which confused the symptoms plus she didn't experience pain fom the stone. She's thrilled to be home but very tired.
After she has a blood test to make sure she's cleared of mono, has the lithotripsy and then the stent removed, she'll be rescheduled for removal of all 4 parathyroid glands with 1 to be transplanted in her arm. If problems continue, the remaining gland can be removed easier and with less chance of complications.
Her pituitary is clear at this time. She has an 8 mm lesion on her pancreas. My daughter gets upset with me when I look up info. on the internet because she says I'm obsessed, but it's because I'm scared. She has an excellent endocrinologist and transplant surgeon so she's in good hands. Her father and I divorced when Rachel was little. Sometimes I feel a lot of anger towards him because of MEN1, and then I remind myself that it's not his fault and he's been through so much himself.
Hi and welcome. I'm new myself to this forum, but not new to MEN 1. If you can get Rachel to participate in this forum, I promise it will help her.
First, it is okay to be scared. When you are dealing with a disease as rare as this one, it is easy to be overwhelmed. Not because of the amount of information available, but because of the lack of information.
Your daughter is probably as scared as you, but doesn't want to admit it. I'm 42 and have been living with this for over 20 years and I am scared some days. The one thing for sure about this disease is that there are many doctor visits/scans/drugs/surgeries/etc. in her future. I am am firm believer that knowledge is power. When you understand what you are facing, it is easier to deal with. (Not to say I'm always as strong inside as I appear on the outside.)
Getting the auto transplant is wonderful. When I had my first parathyroid surgery, the doctors said there was no reason for that because I wouldn't be having another one. (I was diagnostic with familiar MEN I at first. You have to have two glands involved before they call it MEN I, which I think is a mistake. But that is another story.) When I had my second parathyroid surgery they said that an auto transplant wasn't necessary in my case. I wish I had pushed for it again. But that is all water under the bridge so to speak, so I will just smile and say okay when I have to have it again in the next year or so. Rachael should be in and out of the hospital in just a few days. No surgery is 100% safe, but this type of surgery is almost routine.
I had a 13mm lesion on pancreas by the time it was discovered. I am sure the doctor's have started talking about Rachel's options. Each person is different. I could have waited, but given my family history and my age, I figured it was better to have it sooner rather then later. Where is her lesion at? Mine was right on the line between the body and the tail.
I know that seven to 10 days in the hospital is not something anyone looks forward too. But getting the surgery when your are young makes sense. The "older you get the longer it takes to recover" thing is a bummer. Yes, the scare takes a bit to get use too. Catching myself in the mirror still makes me do a double take. (I have about a 13 inch scare running in a small arch that follows the rib cage.)
My younger brother (Jeff) was 14 years younger then me when he had his pancreas surgery. (He was 28 and I was 42 at the time of our surgeries.) His recovery time was much faster then mine. There are some days when I still get tried easy and still don't do all of the physical things I use too. (Somewhat because I am scared I'll hurt myself. I still do not have all of the felling back in my stomach area.) I had to have insulin for the first four days after my surgery, but Jeff did not have any. I am border-line diabetic at this point, but Jeff doesn't show any signs of diabetes at this time. (We'll have to see when he gets into his 40's....)
I'll also tell you it is okay to be angry with your ex, but you also seem to understand it is not his fault. My wife sometimes gets angry with me, but also understands that is not something I could/can control. She mostly gets upset when she thinks about our kids. At least one of them will have this disease.
Remember that each family member who has the disease will have different manifestations of it. It is very important that once you are diagnosed that you get regular checkups and scans. One of the most important things is a great endo who understands the disease.
Please keep everyone up to date on Rachel and her progress.
John, thank you for your kind response and support. You and your family have already been through so much and know all too well how MEN1 affects your health and life. It is so scary but, as you said, knowledge is power and regular medical checkups and scans are crucial. Doctors need to find a way to isolate this gene and shut it down.
My daughter's kidney stone grew from 4 mm in June to 11 mm in November which is why her urologist originally thought she might be able to pass it on her own. So Rachel's overproducing calcium and, after reading a list of medical problems that can develop if these parathyroid glands aren't controlled, I know the surgery has to be done.
With the lesion on her pancreas, I should have asked where it was located but was probably too numb to think of it. The endocrinologist will keep checking on its size for now. Guess it can't be taken care of with medicine. Rachel's gallbladder was removed years ago, likely indirectly due to MEN1.
Her father is 50 years old, diabetic, and has had 1 or 2 parathyroid surgeries and 2 surgeries on his pancreas (1st in high school and the 2nd about 4 years ago). Rachel's grandfather had a pituitary tumor that was surgically removed with complications. He later developed Alzheimer's. Her father's tumor was found early and eliminated with medication, and they can do the same for her if one develops. I'm heartsick that Rachel may have to have multiple surgeries but we'll take it one health issue at a time.
When Rachel's life is calmer, I'll see if she'll participate in the forum. Right now she's scared and stressed so I don't want to press my luck. She may use her freakish upper body strength to dump me outside in the cold :] I'll post updates on how she's doing. Thanks again for your support and taking the time to write.
Post edited by: JessLee, at: 12/07/2008 01:25
03/07/2009 12:03 AM
Posts: 3 New Member
Post edited by: JessLee, at: 03/08/2009 20:37
10/14/09 Hello everyone, I deleted my last post regarding my daughter and MEN1 due to my own stress but here's an update. Rachel lost her job in March because she wasn't progressing as expected as a veterinary assistant. She has a short attention span that needs to be addressed, and I'm trying to get her to make an appt. for an evaluation. Meanwhile, she's collecting unemployment and working part time. Fortunately, she can remain on her former employer's group medical coverage for up to 18 months. It's been costing her over a couple hundred dollars a month which is not a big expense and well worth it.
She did finally have all of her parathyroid glands removed and almost a full gland transplanted into her left arm. Rachel has about a 4" scar on her neck which has healed nicely. Her calcium is being closely monitored, and she's doing very well. She had lithotripsy done on one kidney since the surgery and will need one on the other side to get rid of the remaining stones. After having two kidney infections, Rachel's urologist isn't taking any chances.
The lesion on Rachel's pancreas is also being monitored, and she has a cyst inside the pancreas which is not as much of a concern. She was recently told by her former employer that they have to change their medical coverage to a more expensive plan because of her health condition. The cost is going up to $360 a month.
Her father's oldest brother also has MEN1 and is about 60 years old. He recently had his first parathyroid surgery and months later had a large, hard growth removed from his pancreas. He's now diabetic as is Rachel's father and aunt. One of Rachel's uncles didn't inherit MEN1, so it wasn't passed on to his two daughters.
Rachel's set a wedding date for 5/22/10 and plans to move to Grand Cayman in the Caribbean. Her fiance is a truly wonderful man but I'm not happy about her leaving and am really concerned regarding the availability of specialists on the island. I don't believe they have an endocrinologist except for one that visits every so often. Rachel will probably need international medical coverage in case she has to fly to Florida from Cayman for treatment. When she explained this move to her endocrinologist, he said she was really scaring him. Coverage will be difficult to get with a pre-existing condition. The plan is to live on Cayman for maybe three years and then return to the U.S. I'm hoping that dealing with hurricane season makes her return sooner. Best wishes to all.
Post edited by: JessLee, at: 10/14/2009 08:18 PM
Post edited by: JessLee, at: 10/14/2009 08:27 PM
05/01/2010 07:49 AM
Posts: 4 New Member
I am new to this forum as of today. I can't seem to find a doctor to get properly diagnosed. I read your story of your daughter and you are a wonderful mom and very supportive and I can understand your concerns. I personally got sick out of the country and it was hard to find good treatment it was in Aruba but I did make it. I would love to find a good endocrinologist who would listen and test me for MEN's problem is I had problems in alot of areas. Thryoid, I was told in 2005 I had a pitutary adenoma, in 2006 they said it did not grown, 2007 said it was gone, 2008 said it was a cyst and 2009 again said it was a cyst so not sure what is in the head. I have calcium levels jumping up and down all over the place right now am looking into hyperparathryoidism. thryoid told i had hashimotos but lately I notice my Free T3 is elevated I have not been on thyroid medication and was told because my Free T4 looks good by someone that I could have T3 Toxicsis maybe I am spelling it wrong just had a nephew who had thyroid cancer. I have nodules was tested four years ago told I don't have cancer. I also have problems with my pancrease and sugar levels going up and down. Get severe hypoglycemia at times and my adrenals not sure how they are working am told so many different stories. I have been on steriods for years so they can't measure the adrenals. I had three seizures in 2/10 of this year and am determined to find out what caused them. I strongly believe I have some kind of MEN's disorder. Lost my mom to so many symptoms I am having she never got diagnosed. Have brothers and sisters all sick also so something herditary is going on in the family. My mom is no longer here to test any genes. I just want to find out what I have and find a good doctor who can diagnose this disorder I live in New Jersey if you have any information please let me know. God bless you and my prayers are with you and your family. God is good he does answer our prayers so I know you daughter will be okay. God Bless Kathie
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