About Me (In My Own Words)
My name is Barry and they have been monitoring my heart for about 6 years. I have been getting an echo annually, the last one was in May 2016. My cardiologist said I am at the point that I need to consider surgery. We talked it over and I decided to wait until the end of summer, so I went back to the doctor the end of August to get things going. I am getting close now, it is October 2nd - had an angiogram and CT Scan recently to check my artery's to see if I need any bypasses done and the extent of my enlarged aortic artery. On the CT Scan they noticed a nodule and I am having another Scan of my lungs this week (the second Scan is my lungs to get a clearer look of the nodule and see if there are any others). I should know something by mid week - don't know what the effect is on my surgery.
I had another CT Scan and now they want to do a needle biopsy to see what the nodule is. I checked in to the hospital for the biopsy on Thursday October 20th - the radiologist stopped by to discuss the procedure - he was very concerned about taking a biopsy without using contrast dye (I have IGA kidney disease - dye is hard on your kidneys). He looked at the last Scan in slices and said he doesn't think it is cancer. He would have trouble getting the sample because of the location to blood vessels and the possibility of causing some other problem. He left to talk to my cardiologist and they both came back to talk things over. They felt it was not worth taking the risk and are going to get a PET Scan to see if there is any cancer - if the nodule is cancer it could be removed the same time as the heart surgery and they can determine what it is and what additional treatment is needed. So now we are waiting for insurance approval to proceed. It has been a very long month and a half - still need an answer before setting up my surgery.
Had the PET Scan, not much uptake in the lung nodule, however, they did find a nodule that had more uptake in my thyroid - so now they want to do a biopsy on both nodules to see what they are.
Now we are into December, had both biopsies done and the lung is an Neo endrocrine tumor - the doctor said it needs to be removed within a year - not really cancer, probably will never be cancer but should be removed.
On December 2nd, my wife fell at work and broke her right arm - so she had surgery about a week later - tough time for her!
The week before Christmas I contacted my doctor for the results of the thyroid - he was out of town on a family emergency and would not be back for 3-4 days. I called my cardiologist to see if he could get the results. He called that evening and it turned out to be pappilary thyroid cancer - not very good news! So I heard from my doctor on Saturday, he just got back into town and wanted to get me the results.
I contacted the surgeon that takes care of thyroid surgeries in the area and could not get in to see him until early January. At my appointment he examined me and reviewed the biopsy - he asked if they did an ultrasound before they did the biopsy - no, just the biopsy. So then I had to get that done and had surgery scheduled for 2/28/17 - 1st opening available!
Had to go to the ER on 2/14 - shortness of breath - had fluid in my lungs so they put me on a dieretic for 10 days. I went to my doctor and he decided to keep my on this until my surgery so it doesn't happen again. Also been having bad indigestion at night, put me on medication for this too! On our anniversary 2/25 my wife isn't feeling well - back to the ER - she has a kidney infection - got a prescription to take care of it.
Had the surgery, it was pappilary thyroid cancer and they removed the entire thyroid. No thyroid hormones - have to get hypo thyroid to do a scan and they radioactive iodine treatment. 10 days before taking the pill for the initial scan, I had to go on a low iodine diet - food doesn't taste too good since the surgery and I am getting more fatigued daily. So about 6 weeks later, have to drive 1 1/2 hours to take a pill and then go home and go back the next day for a scan. They determine how much radioactive iodine I need and a week later come back to take the pill - the pill is in a large vessel, they are handling it with 3 foot tongs - they tell me to open the small container, swallow the pill - don't touch it! Put down the container and water glass and get out of the hospital as fast as I can - then another 1 1/2 hours home and 7 days in isolation (still on the diet). Back to the hospital for another scan, when it was finished I was waiting for the results - one technician asked the guy doing the test if he checked my for radiation - no. So he took me into another room and started checking and then went and got another instrument and checked again - he said you are hot! They put me back in the waiting area and then I saw the doctor in her office - she stayed as far away as possible - she said I still had too much radiation and to go home and stay isolated 3 more days and take laxatives to get the radioactive material out of my intestines. I asked the technician how hot I was - he said not too bad - I asked him compared to last week when I took the dose - he said that day I was glowing! So back home and isolated for 3 more days. I have no energy, cold, miserable the last couple of weeks.
I started taking thyroid hormones and immediately started feeling better.
I saw the thyroid surgeon on 5/8/17 and he said everything looked good and he wanted to get labs done in a couple of weeks. Finally starting to taste food again! Have to do a follow up scan in October to make sure the cancer is completely gone. Did the labs - no changes in medication.
Finally met with Dr. Castro on May 16th - he spent an hour with Diane and I going over my surgery and what the plan was, types of valves, removing the tumor, etc. - he made me feel pretty at ease with things. He didn't have all my test results, so he requested them from my cardiologist and called me a week later to finish our discussion. I called his office and setup my surgery - I have all the pre op stuff on 7/5 and surgery on the 6 th.
7/5/2017 finishing up with all the pre op stuff - busy day!
So, I am finally getting around to updating things. I did have my surgery on 7/6 and it took around 4 - 5 hours. I don't remember much, my sister updated family and friends on Facebook. They did a lobectomy to remove a tumor from my right lung - not the normal way they would do this, but were able to save me from another surgery! They replaced my aortic valve with a cow valve and repaired a large aneurysm in the ascending aortic artery where it leaves the heart.
On 7/7 they had me up in a chair, ate a little - not much sleep and had some pain in my chest.
on 7/8 still pretty out of it.
Somewhere during this time, they had to do a cardio version to get my heart back in sinus rhythm and took out the third chest tube - they took the other two out earlier - I was awake - just a little discomfort.
Doing my walks and just getting through the day - a lot of foggy ness from the effects of the surgery!
7/11 CT Scan to check my lung and an x ray. They did a bronchoscopy to remove some mucous from a partially collapsed lung.
Labs, tests and monitoring, no bed available so still in the ICU. Not taking any pain medications except for Tylenol most of the time. The most discomfort was the catheter - it was remove and replaced once - miserable and then removed before leaving the ICU - miserable again! I finally got a room on 7/13 and moved upstairs. Less monitoring and able to use a bathroom instead of commode in ICU!
I spent a couple of days here while they continue to monitor my kidneys and having physical therapy. Finally got released on 7/15 - 9 days in the hospital - I am ready to head home!
My feet were so swollen when I got dressed, we had a difficult time getting my socks and shoes on.
It is nice to be home, I am still on a diuretic so I am in the bathroom every 1 1/2 hours. it is 7/19 and I have a follow up with my cardiologist in a week - I am down 13 pounds in 5 days! Waiting for an update on my kidney function - it was coming back when they released me from the hospital - anyway, no pain, just time to recover!
Got the update on my kidney's and they are a little better than the lab's before my surgery, just another thing that is positive!
Dr. Castro, his team and Sequoia Hospital took excellent care of me, I don't know how many times they checked in on me a day, one of them was sticking there head in to see how I was doing!
It is 12/13/17 - it has been about 6 months since my surgery. I finished up a cardiac rehab class just before Thanksgiving and started a two day a week exercise class the next week. Had a CT Scan of my chest, abdomen and pelvis recently and labs to see if there were any new tumors related to my lung tumor - everything is okay!
I am scheduled in January 2018 to have a secondary radioactive iodine Scan which means getting hypothyroid again - should have results the end of the month.
It took about a month to get back to not having to urinate every 1 1/2 hour, I lost around 18 pounds the 1st week I was home and have kept my weight consistent, even after going to cardiac rehab - they said to expect to gain 6-8 pounds of muscle during the 36 classes - so it was nice not to gain any weight.
I am feeling pretty good, when I exert myself I start breathing pretty hard (like doing yard work with bending and lifting), but walking/excercise is okay.
I looked up my records from the hospital and when they did a CT Scan before surgery it measured 6.3 x 6.4 cm - back in September it was 5.5 x 5.5 cm - good thing I got it taken care of!
So that’s where I am as of now, continue to improve slowly - that’s probably the hardest part of recovery.
Got hypothyroid in January, had lab work for checking that and also checking my kidney function. Pretty miserable the last two weeks of January, flu like symptoms and gained 10 pounds - kinda normal when you get hypothyroid. I am hypothyroid so I will get a Scan in the next couple of days - my kidney function didn’t look good creatinine level 4.8 - it was 3.0 the end of November. I already have an appointment to go over the results next week. The doctor had me stop two medicines Lisonipril and Tricor which can affect kidney function - so I have to wait a month to repeat thelabs.
It’s February 21,2018 and I had the 2nd RAI Scan done the end of January - it appears there may be something on the left side of my neck - possible lymph nodes? And my thyroglobulin levels were higher than expected when they did labs the end of January. Went over the results with the surgeon and he wants me to have a CT Scan without contrast (because of my kidneys) which was done on the 21st - the results were on line today and did not show anything in the lymph nodes and nothing is left of my thyroid. I will see him in a couple of weeks to see if he wants to do any other tests.
Saw my cardiologist today, EKG and general check - no restrictions, just be aware and monitor for faint or dizziness due to an electrical problem with my heart. So I am 7 1/2 months since I had surgery and feel pretty good!
It’s March 8th (8 months since my surgery), went to the thyroid surgeon to get the results of the CT Scan of my neck to see if there’s any thyroid cancer in the lymph nodes - nothing found - he is concerned still so he is sending me to UCSF to have a team of specialists evaluate me and see where we go from here.
Echocardiogram in a week to check my heart and other various doctor’s appointments and labs tomorrow to check my kidney function - hopefully it will be better than January’s results!
My kidney function results were much better, creatinine was 2.17 - definitely a relief!
Went to UCSF in April 2018 and saw Dr Ryan - after several physical exams and ultrasounds he said there is nothing there, the RAI Scan must have been a false positive - pretty good news again! Except it took several months to find out what was going on.
So on we go, I have an appointment with my surgeon in June to see what the next followup is. Mostly monitoring this year, hope life can settle out for awhile! Still not great with my lungs - it may be the way it is from now on.
In September 2018 I had another ultrasound of my neck and it was clear. Since my. Last RAI Scan showed something I will be doing it again in January 2019.
It takes about a month to prepare for the RAI Scan, so here we go again! The last week to ten days are the hardest with being hypothyroid - no energy but I wasn’t as sick this time. By the time it was done I gained another 10 pounds which is another side affect. Anyway there is still a spot on the left side of my neck but less prevalent than last years and the tracer in my labs was better so now it will be monitored with ultrasound and lab work - pretty good news! Finished up on Valentines Day afternoon - back to a regular diet.
So hopefully this year will just be monitoring my heart, lungs, thyroid cancer and kidneys - it is a lot but better than the alternative! I have been feeling better, lungs are a little better and life is good!
It is mid October 2019, just going in for labs, CT, etc. they are watching my heart, thyroid cancer, kidney function, lungs, diabetes and whatever else they feel needs watching. Started walking in May, down from 266 to 243, feeling better, lungs and endurance better - overall better than the last 5 years!
All you can do is live your life and deal with the next problem when it shows up!
More Info About Me & My Heart
More About Me
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I am from:
Murphys, California
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My surgery date is:
July 6, 2017
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I was diagnosed with:
Aortic Regurgitation
Aortic Aneurysm
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My surgery was:
Aortic Valve Replacement
Aortic Aneurysm Replacement
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My surgeon is:
Dr. Luis Castro
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My hospital is:
Sequoia Hospital
