My name is Tana Gotcher, I’m from Amarillo, Texas and am 48 yrs. old (1956)

This is my story as a Carcinoid Patient. I am really not sure where to begin so I will give a brief health history prior to Carcinoid Diagnosis.

At seventeen I had a son he is my only child. At 25 I had to have a hysterectomy. Around the age of 28 I started having a lot of stomach problems. At one time I was so bad that they had to put tubes down my nose and a feeding tube. They did exploratory surgery when I stabilized and removed my gallbladder.

For about 6 months I felt great with no stomach pain, nausea or diarrhea. Then the pain started again, just like the gallbladder attacks. At first they were like once a month then a couple of times a month then weekly exceeding to several times a week to even several a day. I was hospitalized and treated a few times for pancreatitis. I was on Prilosec then Nexium most of my life after that. They were able to keep me from having so many attacks and eventually my weekly trips to the emergency room for pain shots grew further apart. In 1995 I had severe headaches and back pain and had to see a doctor for pain control. Since then I see a pain specialist about every 3 months and now take Kadian. The medicine that works best was Oxycontin I do not know why I was changed to Kadian. My pain has not been stable since they changed me I just got tired of complaining and go along with what they have me on.

The headaches did get worse and I had dizziness that started about 1999. I had a lot of symptoms such as flushing, sweating, diarrhea and nausea with bad pains in my right upper abdomen. They were always running tests, scopes and x-rays, blood work. Sending me to all kinds of doctors and even one telling me maybe I needed a psychiatrist. At that time I weighed about 125 lbs. which was pretty much my normal weight. The same doctor that thought it was in my head also told me that maybe I had gotten lazy since I started gaining weight. I decided to start swimming and went to my brother’s apartment where they had an indoor pool. My brother went and watched me and visited. I told him I was going to do a couple of more laps then get out. On return of my next lap I yelled for him, “meet me at the steps something is wrong.” That was the last I remembered until I woke at the hospital.

Now the road to Carcinoid begins. As I’ve had so many problems over the years who knows how long I have really had carcinoid.

December 1999
I woke up in the hospital with IV's and monitors everywhere and my husband and brother at my side. Before I could really ask questions my son came in and by the look on his face I knew it was bad. I said, “Okay guys, what's going on?” and my husband said, “It’s your heart dear.” “My heart?”, I said-- “It couldn't be! I have low blood pressure! I am the only one in my family with good blood pressure! They have made a mistake get me a different doctor!” He went and asked them to send the specialist back in. Dr. Debra McCollum came in and explained to me what was happening. She said I had a rather large hole in my heart and right next to it an aneurysm. I said, “Okay what does this mean and what do I need to take.” To my horror she said I have booked an operating room for in the morning and we are waiting to have you taken up to CCU. “This is not happening.”, I said, “You can fix it another way can't you?” She said, “Maybe a year ago or even a few months ago but it is bad now and it will start dumping blood into your lungs if I do not go repair it.” She said, “I do not know what other damage has been done you have had this since birth. The aneurysm is recent and thankfully you made to me in time.” So the next day I had open heart surgery at the age of 42.

When I woke up the doctor was standing at the end of my bed. She said, “You are one very lucky girl a few more weeks and your family would have been having a funeral. Your heart was giving out and there is more damage. You do have congestive heart failure but with medicine, rest and time I hope to get you stronger and you will be able to live with it several more years.” At that moment I was just thankful that I was alive.

Over the next year my cardiologist took care of me. In February 2000 I was back in CCU with a very high pulse and they had to shock my heart to get it to beat properly. I went through many trials with my heart but the flushing and the sweating and the diarrhea just got worse. By June 2000 I had gained about 50 lbs. and I was miserable, not only with the symptoms but with the extra weight. I had never weighed more that 135 and that was when I was pregnant. How could I keep gaining when what I could eat went right through me? Of course I had gone on Social Security disability after my heart surgery and yes I was depressed.

January 2001
My cardiologist finally decided that all the heart tests he was doing were coming out fairly normal. He said, “I believe something else is going on to cause these additional problems.” He talked to a few colleagues and decided to do a 5HIAA and yes it was high. It came back in the 40's the first time and he sent me to Dr. Brantley my endocrinologist.

He explained to me that I had Carcinoid and that is was rare. He said, “I have only had one other patient with this and it effects your glands. The best thing to do is an Octreoscan and find the primary and remove it.” After that I should start feeling better and he will know more about the next form of treatment. The scan showed two lesions in my liver and I was told they were fairly small. That one was deep in the middle and the second in the right lobe up under my breast bone. After talking to some of the others they decided to start me on Sandostatin.

March 2001
For several days I could not keep food down and everything else went straight through me, nothing seemed to help. I swelled up very bad in my ankles my abdomen and face. On the 4th day Dr. Brantley sent me to the hospital and I stayed 18 days. They did all kinds of scans and of course heart monitors and tests and scopes and it seemed like I had gone back many years. The only difference is I now had the heart problem added to it and of course the diagnosis. My 5HIAA was up to about 92 and they gave the Sandostatin 200mcg. 1ml 3 to 5 times a day. They tried a biopsy of the liver but missed it because of where the tumors are located. The Octreoscan showed 3 lesions now and the other 2 had increased in size some. Again a primary was not located. After the attack was over and I stabilized I returned home.

2002
This year I spent 3 different times in the hospital for attacks like the one in 2001. They always do the very same thing and I do not get anywhere. This went on pretty much the same way for the next few years. The best part is somewhere along my journey I was introduced to the Texas Carcinoid Group. I have only met one in person and she is Ron's wife Myrna. Their son lives fairly close to Amarillo in Friona and she came by to meet me on one of the visits. Unfortunately Ron was having a bad spell and could not come. I feel like I know both of them like long time friends because of the companionship I get on line and the phone calls. I do keep emails up with several others and to each of you thank you. I do not want to mention names because I am afraid I might leave someone out and each of you have become very special to me. I have exchanged phone calls and cards with both Dann and Carol Anne over the years.

2004
The year 2004 was a very bad year and one that will go down in my memory-book forever. First in March I started having severe spells. It seemed I would just get over one and another would start during this time my liver counts went off the chart and of course my old heart began to act up more. I had gone on oxygen in 2003 so my poor heart has deteriorated. Then April 24th I went in the hospital because I was so sick and weak I could hardly walk across the room. I would have almost said I was on my final days but my faith in God has got me through so much that I knew in my heart I would recover. I spent all of May in the hospital--my birthday, Mothers Day and Memorial Day. I had all the celebrations right in my hospital room. Of course they did the same old tests and they had to put in a central line. The Octreoscan showed 3 lesions in the liver the original 2 bigger and a hemangioma. This time it lit up several other places all in my abdomen and on the appendix, also in the colon. I told them I didn't think I had an appendix and he said if not the tumor is in that area. They decided another colonoscopy even though in the past it had been clear. The scope showed nothing and he said at the base of the colon he would have been able to see the appendix and there was nothing there. They gave up looking for the other tumors at that point and sent me home. I stayed home one night and returned with a 103 fever and stayed 10 more days in the hospital. It seems as if the 48 days I spent in the hospital put me right back in the same place. I was over that attack and could take care of myself at home but that was it. Still no primary location.

September 2004
At this point I am still just making it day to day, taking pain control and the Sandostatin. Never have I been put on the LAR because my doctor thinks I am on the maximum level of Sandostatin. The months of September, October and November would mark another historical event in my journey. On Friday, September 18th at around 5pm I fixed myself a sandwich put it on a paper plate and started back into the living room. The next thing I knew I was screaming and on the floor thankfully my husband had just gotten home. He ran to me and said where does it hurt I screamed and cried and he finally got loud please tell me what is it. My arm help me I cried, he said it does not look broken I don't see anything I said my arm the bottom half of my right arm is not connected to the top part. Charles said it is too it is all there no I said call an ambulance or get me to the hospital NOW. We finally managed to get to the truck I was in so much pain I was sick and dizzy, simply miserable. Thinking back I am sure the hospital staff thought this lady is a big baby, but I am telling you I can endure a lot of pain I could not bear this. Comically they cut off my clothes got me in a gown and to x-ray. The x-ray showed I had snapped my arm clean in two, above my elbow I had a clean break and the bottom of my arm was not connected to the top. They started me on morphine, splinted the arm the best they could and sent me to a room. Everything was a nightmare. I literally could not move myself up or down in the bed or up and out. Laying right there in that bed is how I stayed until Monday. The surgeon could have done the surgery Saturday but because of my other problems he wanted all my doctors to see me first. I had to have the surgery but the heart doctor decided to be there during the operation so I had to wait. The surgery took place Monday 8 AM and he had to put plates and rods and my heart gave them fits and I went on a ventilator for a couple of days. I wish I could say all went well and I went home to recover. NO, my carcinoid went crazy and my body rebelled and again I spent several days in the hospital.

This brings me to the present and the only other change is I was recently diagnosed with super ventricular tachycardia and I’m on more heart medicine for that. I wish I was able to say that there is a happy ending or at least be able to share with you hope of a treatment that has worked for me. All I do know is I have a stronger faith with God because He is the only way I can make it through each day. I have a wonderful support system. My husband is great and works very hard to take care of me financially. My mother lives down the street now and is over daily to help me or to just keep me company. My son checks on me almost daily and wants very much for me to have a better quality of life, he is an associate pastor and youth pastor at our church. His wife is great to me and will help me anyway she can. My greatest joy is my two grandchildren--Tristan she is 6 and my grandson Aslan is 2. When they are here I can forget my trouble for a while. I am hoping to go to the Mayo Clinic in Minnesota in late spring but I have to get an okay from the heart doctor who doesn't really want me to travel. This will only be possible with the help of very special friends. I pray daily for myself and all of my friends with carcinoid and can only hope one day a treatment may be offered to give us a better life.

Tana Gotcher, March 2005.

Continued....

 

 

 

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