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fayette
@fayette

Posts: 3
Joined: Nov 04, 2017

Complex Health issues

Posted by @fayette, Nov 4, 2017

My son was born with transposition of the greater arteries among other heart defects, 33 years ago. He had a banding procedure at birth to slow the blood going into his heart and they patched a hole in his heart. At the age of 4, he was old enough to have a major heart surgery performed called a Modified Fontan. His heart basically works with 2 chambers. He did well until he was 18 and had Afib. He has had a pacemaker since 18 and is on his second one about to get another. He will some day need a heart transplant. As he got older he started getting really bad episodes of gout in his toes, ankles, and knees. He has been told he has arthritis in his back. He has had other problems along the way such as a hernia, dead bone in his knee, teeth implants etc. Last year he had a terrible case of MRSA. He was hospitalized and it took 3-4 tries to get the right drug cocktail to take out this MRSA. They sent him home on IV meds. A week later he stopped getting better and got put back in the hospital for another round of different drugs and sent home again on IV meds, which, thankfully, this time worked. When he was in the hospital with MRSA, they did a CT scan on him (he cannot have an MRI due to his pacemaker), they found a spot on his kidney and said it might be cancer but it was very small and they wanted him to recover from the MRSA. Six months post MRSA, he had 2 biopsies done on his kidney (the first was inconclusive). The second came back as cancer. He just had surgery which froze the cancer and surrounding area. The reason they chose to freeze it is because he is on Xaralto, a blood thinner for his heart. He came home from surgery and his stomach was quite swollen so after 24 hours they told us to come back into ER. We came back to the hospital and they did another CT scan to make sure there was no internal bleeding. They determined the swelling was normal and they were not concerned. During this visit, they noticed his eyes were yellow so they did a bilirubin test which was at a 6, very high. They said that they looked at other bilirubin tests done on him in the past and it always trended high, like around 3 and they figured that the stress from the surgery caused it to jump but they wanted to keep him for observation and run another bilirubin test the next day and see if it dropped. The next day they drew blood and ran more tests on it including bilirubin and hepatitis. They also did a CT scan of his liver and spleen. The results of the blood test were that his bilirubin dropped to 4.9. The CT scan showed some noduality or cirrhosis of the liver and an enlarged spleen. They questioned him about how much he drank and told him to stop drinking. For the record, he is not a big drinker but yes, he does drink. They indicated that the first thing to look at was if the pressure in his heart was off and thus affecting his liver. So he needs to make a cardiology appointment. He also has an appointment with a gastroentomologist (sorry about the spelling). He cannot see the gastro dr for 3 months. While he was in the hospital, I asked the urologist if there was a link between the mrsa, the gout and the kidney cancer. She said she did not know but didn’t think so….. that was her answer. She said she would look into it. I asked her why he was not seeing a kidney doctor (nephrologist). She said it was because they work with the function of the kidney and his kidneys are working fine. I disagreed and said they are not working fine because in my mind 1. he just had cancer removed from one and 2. his reoccurring viscious gout episodes. Gout is uric acid – produced by your kidneys – that your body does not get rid of properly. Believe it or not, the urologist came back into the room and said she ‘googled’ the relationship between gout, kidney function and kidney cancer and couldn’t find anything that related them. So I am posting this in the autoimmune section, the heart section and the cancer section of this forum as I have no idea where to start to try and help my son. I have concerns that Xarelto is causing problems, or maybe the Sotalol or Valsartan he takes for his heart. He had a rheumatologist to handle the gout but after the mrsa it was rampant in his body and the steroids, allopurinol and other drugs he normally got from his rheumatologist he could not get without being seen and appointments for a rheumatologist are months out so he ended up in urgent care to get the steroids he needed to calm the gout down. I would like all his doctors to talk to one another and try to learn what is causing all this to happen in his body. I would like his doctors to explain why these things are not related in a logical way. I would like his doctors to take an interest in him and his unique situation and care enough to investigate it further. Ironically my son was a big fan of the show “House”. He could really use a doctor like that right now. Is there any guidance I can get from this forum?

REPLY

Hello @fayette,

I’m sorry to learn about your son’s struggles; as a parent, I can only imagine how helpless you must feel, and we are so glad you’ve joined us here on Connect – Welcome!

First, I would sincerely encourage you to consider that the doctors at Mayo Clinic collaborate as a multidisciplinary team to provide coordinated, comprehensive care. This collaborative approach means doctors can often evaluate you and develop a treatment plan within two or three days. Doctors collaborate as team members to ensure favorable outcomes.
If you wish, you can contact Mayo Clinic at one of our 3 campuses in AZ, FL or MN. Here is the contact information: http://mayocl.in/1mtmR63
Our experts can review your son’s medical history and test results, and provide an evaluation prior to traveling.

Although the Fontan procedure is a life-saving surgery, there are negative consequences associated with this surgery including heart failure, liver disease, and renal dysfunction. Two published studies which you may wish to read:
http://www.sciencedirect.com/science/article/pii/S1092912615300144
http://www.onlinejacc.org/content/66/15/1700?_ga=2.145846388.177533910.1509840821-183701467.1503681034
The good news is that Mayo Clinic doctors are aware of these issues, and detecting these issues earlier with better imaging, better diagnostic tools that they’ve developed.

@fayette, given your son’s symptoms and his conditions, he would derive the most benefit at Mayo Clinic’s Center for Congenital Heart Disease:
https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/center-congenital-heart-disease/overview
– Transposition of the great arteries care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/transposition-of-the-great-arteries/care-at-mayo-clinic/mac-20350598

You may also wish to view these conversations on Connect:
– Fontan Surgery and the Liver https://connect.mayoclinic.org/newsfeed-post/fontan-surgery-and-the-liver-2b450d/
– Congenital Heart Disease – What Patients Need to Know https://connect.mayoclinic.org/webinar/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/
– A Mother’s Perspective: Congenital Heart Disease https://connect.mayoclinic.org/newsfeed-post/a-mothers-perspective-congenital-heart-disease-2965a2/

And finally, I’d like to invite Connect’s incredibly informative Mentors, @hopeful33250 @predictable @rosemarya @cynaburst and @johnbishop, for any insights and suggestions they might have.

@fayette, you must have so many questions, and the Connect community is here, listening; I hope the information above, gets the ball rolling. I wish you all success.

@kanaazpereira

Hello @fayette,

I’m sorry to learn about your son’s struggles; as a parent, I can only imagine how helpless you must feel, and we are so glad you’ve joined us here on Connect – Welcome!

First, I would sincerely encourage you to consider that the doctors at Mayo Clinic collaborate as a multidisciplinary team to provide coordinated, comprehensive care. This collaborative approach means doctors can often evaluate you and develop a treatment plan within two or three days. Doctors collaborate as team members to ensure favorable outcomes.
If you wish, you can contact Mayo Clinic at one of our 3 campuses in AZ, FL or MN. Here is the contact information: http://mayocl.in/1mtmR63
Our experts can review your son’s medical history and test results, and provide an evaluation prior to traveling.

Although the Fontan procedure is a life-saving surgery, there are negative consequences associated with this surgery including heart failure, liver disease, and renal dysfunction. Two published studies which you may wish to read:
http://www.sciencedirect.com/science/article/pii/S1092912615300144
http://www.onlinejacc.org/content/66/15/1700?_ga=2.145846388.177533910.1509840821-183701467.1503681034
The good news is that Mayo Clinic doctors are aware of these issues, and detecting these issues earlier with better imaging, better diagnostic tools that they’ve developed.

@fayette, given your son’s symptoms and his conditions, he would derive the most benefit at Mayo Clinic’s Center for Congenital Heart Disease:
https://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/center-congenital-heart-disease/overview
– Transposition of the great arteries care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/transposition-of-the-great-arteries/care-at-mayo-clinic/mac-20350598

You may also wish to view these conversations on Connect:
– Fontan Surgery and the Liver https://connect.mayoclinic.org/newsfeed-post/fontan-surgery-and-the-liver-2b450d/
– Congenital Heart Disease – What Patients Need to Know https://connect.mayoclinic.org/webinar/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/
– A Mother’s Perspective: Congenital Heart Disease https://connect.mayoclinic.org/newsfeed-post/a-mothers-perspective-congenital-heart-disease-2965a2/

And finally, I’d like to invite Connect’s incredibly informative Mentors, @hopeful33250 @predictable @rosemarya @cynaburst and @johnbishop, for any insights and suggestions they might have.

@fayette, you must have so many questions, and the Connect community is here, listening; I hope the information above, gets the ball rolling. I wish you all success.

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Thank you so much for the information. I”ve been reading the links and it does start to give me a better picture of whats happening and why. I will pass it along to my son and hopefully his care team. He had been to the Mayo in Rochester last year for a second opinion on his MRSA so maybe he could go back there again for a full check up. I truly appreciate the information

Thanks for your response Teresa. I’ve started following caregivers and hope this forum will help our whole family.

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