janiedelite Posted April 2, 2009 Report Share Posted April 2, 2009 This forum has been my lifeline over the last year, since my POTS symptoms have become debilitating. Since coming back from Mayo a couple months ago, I strictly followed the doc's suggestion and drink 3-4 liters a day, take in 4+ gms sodium, wear waist-high compression, sleep with head of bed up, exercise whenever able, avoid stress, etc. Now I can clean the house, cook, and for the first time in over 2 years I sat for 2 hours in a salon and got highlights in my hair! I know it's such a material thing, but I haven't even felt well enough to get a hair cut and grew my hair out long so I wouldn't have to maintain it. I didn't have the energy to spend time fixing my hair, and I just laid down all day anyway. But my hubby loves my new look, and even if I still spend most of my time at home I feel a little more presentable.My mom has carcinoid syndrome (she's had it for 22 years and has tumors in her liver, lung, and maybe her colon and has had 2 surgeries to remove other tumors). She's on 75mg of octreotide a month through a pump. Just like POTS, it is terribly hard to find a doc who really knows about carcinoid syndrome. But we have "trained" a local oncologist in her disease and once a year we fly from Oregon to New Orleans to see another oncologist who has a clinic devoted to carcinoid patients. Our local doc is willing to take direction from him. Until the last month, I didn't think I'd be well enough to go with her to her appointment in New Orleans, but thankfully I went and did fine! Yay! Wearing compression hose in nearly 100% humidity wasn't too fun, and the heat took its toll, but my seat cane helped a ton and I took it everywhere. I'm glad that I went because she has about as much brain fog as I do (so together we might make a whole brain ). My dad went too but he can't hear much, and he gets stressed out talking about her illness much. I'm glad I can go and help her remember what the doc says, and can help advocate for her.Unfortunately, my mom is just too thin. We spent about an hour with the dietician, who also specializes in carcinoid syndrome, and got some good tips but even she admits that she will have to look for more treatment options for my mom. There is an area on her CT scan that looks like an intusucception caused by a new tumor, so now she has to work within her insurance limits and get a colonoscopy (and have an IV octreotide drip during the procedure, so it may need to be done inpatient), and maybe more surgery... Other than that, the rest of her tumors are very stable. I'm thankful for every day I have with my mom. And I know that someday she will be in heaven and will eat everything and have no pain! It's hard because I am an RN, and I second-guess myself wondering what else we should be doing. But POTS has certainly taught me my limits, emotionally and physically. Carcinoid syndrome is the slowest-growing cancer there is, which gives most of these patients a longer life expectancy but not always a great quality of life. Carcinoid syndrome symptoms are flushing (especially of the face), diarrhea, and many of the symptoms are similar to POTS (OI, nausea, abdoomina pain, etc). The average time of misdiagnosis for carcinoid patients is 7-8 years. For my mom it was 9 years and by the time they figured out what she had she had multiple lymph metastases and liver mets too. If any of your symptoms are suggestive of carcinoid syndrome, get a urine 5-HIAA, and a Chromogranin A. These are two lab values that are fairly standard. Other diagnosics would be chest, abdominal and pelvic CT's with and without contrast, gastrin level, pancreastatin, serotonin, and neurokinin-A. Spread the word! Any other questions: www.carcinoid.org Quote Link to comment Share on other sites More sharing options...
carinara Posted April 2, 2009 Report Share Posted April 2, 2009 my heart goes out for you. Iam so glad that you found some adjustments that allow you to spend more quality time with your mum (and also go to the hairdressers). All the best and a big hug from carinara Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 2, 2009 Author Report Share Posted April 2, 2009 Thank you, Carinara. Quote Link to comment Share on other sites More sharing options...
Maxine Posted April 3, 2009 Report Share Posted April 3, 2009 Thankful,I'm so sorry your mom has been suffering so long with this, but glad this is slow growing, and she is treatable. She sounds amazingly strong, and I' glad your doing better so you can be with her offering whatever support you are able to give. It's nice that you have some quality time together when your not feeling so beat up from your POTS.Watch yourself carefully, and realize your limitations. When my brother was towards the end of his life, my husband and I spent a lot of time with him and his family. I cooked meals, and we tried to offer whatever support we could. He was such a strong person, and our family is close, so we saw eachother often anyway. He was so good at hiding his pain and suffering, and would often be helping others--------(always pulling rabbits out of his hat). We didn't really see how bad he really had it until his last weeks. He was diagnosd with colon cancer in late 2006, and unfortunately felt no symptoms until the cancer grw to the other side of his colon, and reached 17 lymphnodes. Although his last colonoscopy was completely clear, it spread to his liver and abdomin, and finally took a toll by the end of 2008 whihc lead to the chemo no longer being effective.While your busy helping your mom, you may not notice your body slipping, so please listen to your body and pace yourself.I crashed pretty badly, and was more susceptable to catching viruses. His wife and I both got so sick just after he passed away on Feb. 16th, we are just now able to feel like we can at least think straight. My POTS has taken a weird turn, and my BP is super low, and seems to be stuck there, and my heart rate isn't compensating. I think our whole family has felt pretty sick from the stress of it all. My brother was only 51.I know it has to be really difficult for you and your family. My aunt had a slow growing brain tumor, and after it was removed she lived another 10 years---she had an amazingly positive attitude evn though she lost her independence. when she had the surgery, she had a stroke. The tumor was so big it was wrapped around her brain stem, and went up the side of her head. The docs didn't think she was going to make it, and they sent her to another hospital 3 hours away for specialized care. She learned to talk, read, write, and do other normal function all over again.It sounds like your mother is a fighter, and I hope they can find a way to help her gain some weight to help build more strength to fight this carcinoid syndrome.I will keep you all in my thoughts and prayers, and hope that you continue to have continuous quality time with you mother.HUGS,Maxine :0) Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 3, 2009 Author Report Share Posted April 3, 2009 Thank you, Maxine. I was kind of hoping you would reply to this post, although I didn't expect it because I know you've been through so much lately. But you can personally relate to what my family is going through.I don't know about you, but it seems like negative emotional stress takes much more of a toll on my body than even physiscal stress. I was pretty stressed on Tuesday and Wednesday this week, processing what we learned at the doc's appt. Yesterday I was tired, but today I'm wiped. I went for a short trip to the store and almost had to leave because of nausea and tremors. My hubby understands, though, and is very sympathetic. And I'm thankful I don't have to work. In the past, emotional stress sometimes put me in bed for weeks and my neuropathy pain worsens too. I hope that doesn't happen, and I wish I had more to give to my mom in the form of energy. Yesterday I went to her house (just a mile down the road) and we watched The Apprentice together. That was fun. I'll take your advice and stay within my limits, especially during days like this when I'm already drained. My mom can still drive herself places most days, cook and clean, so I don't do a whole lot for her except go to appointments with her and give medical advice sometimes or make phonecalls for her. Stress makes her symptoms much worse also, so we are a pair!Thank you so much for sharing your experience and advice. It is greatly appreciated.Take care, Janie Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 7, 2009 Author Report Share Posted April 7, 2009 She was seen at the GI doc's today (they got her an appt as soon as her oncologist sent the referral which was nice). We spent most of the time educating the nurse practitioner about carcinoid syndrome and carcinoid crisis. But she saw the CT and they want to do the colonoscopy asap. Mom really wanted this one GI doc who has a great reputation, but they want to do her scope in the hospital instead of their outpatient clinic because of her medical needs understandably. That doc isn't scheduled in the hospital for over 6 weeks. So she sees another GI doc next Friday for her colonoscopy at the hospital. But the good news is that they're totally willing to collaborate with her carcinoid specialist in New Orleans and run an octreotide drip the whole time! The prep will dehydrate her most likely and it seems to strip a lot of her intestinal flora which takes her months to "normalize" (normal is in quotes because she's never "normal"). I'm thankful her condition is being taken seriously. Instead of 2 steps forward, one step back, lately it seems like 2 steps backward but now we're finally taking a step forward again. I hope she doesn't feel too poorly as a result of this prep and procedure and lose more weight, but she probably will and it has to be done.The nurse practitioner couldn't understand why her local oncologist said she didn't need a colonoscopy either... she said a possible intussuception needs to be evaluated urgently, as I suspected. Quote Link to comment Share on other sites More sharing options...
Maxine Posted April 7, 2009 Report Share Posted April 7, 2009 Wow, intussusception is a very serious condition!Here's a link from wikipedia giving a good explanation of what it is:http://en.wikipedia.org/wiki/Intussuscepti...dical_disorder)It needs immediate attention--- I'm so glad she has a great daughter like you to help her--- .Maxine :0) Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 7, 2009 Author Report Share Posted April 7, 2009 Thank you Maxine. Yes, that's why I was so surprised her local doc told her not to do anything. But at least she's being taken seriously now. Thank you. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 17, 2009 Author Report Share Posted April 17, 2009 Mom has her colonoscopy tomorrow, so send prayers/thoughts for peace and health please! She's doing the prep now and has the option to get admitted if she needs for IV fluids and electrolyte monitoring, but she can usually drink plenty and she has electrolyte packets to add to her water. Hopefully she can tough it out at home.She's been really trying to put on weight and her diet is so limited so she's been drinking liquid tube feeding all week and has put on 4 pounds! Liquid tube feeding... she's one tough cookie! I haven't had the heart to tell her that if they do find an obstruction or intussuception they'll probably keep her in the hospital and do surgery asap. She's so anxious about fluid/calorie loss from just the colonoscopy I don't think she can deal with thinking about another surgery right now. I'm going to be with her and Dad at the hospital sitting around in waiting areas (fun), drinking salted gatorade, and I'll bring meds in case I start to flare. I hope we can get whatever this blockage is resolved soon. I just want her to have a happy life.Thanks guys. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 17, 2009 Author Report Share Posted April 17, 2009 Just talked with Mom and she still has some prep left to drink, but she says she doesn't feel much worse than she does on her "bad" days. She's in good spirits! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 18, 2009 Author Report Share Posted April 18, 2009 Good news! The colonoscopy went fine and the doc says that other than some scar tissue she has no obstructions. The intussuception on the CT was probably just normal bowel peristalsis that folded in on itself a little more than usual because of scar tissue from her abdominal surgeries.Yay! Life is back to "normal." Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 18, 2009 Report Share Posted April 18, 2009 whew! I guess that is good news. Please take care of yourself too.Jennifer Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 18, 2009 Report Share Posted April 18, 2009 Glad you got good news! Take care! Quote Link to comment Share on other sites More sharing options...
Maxine Posted April 19, 2009 Report Share Posted April 19, 2009 Wow! Great News!Now take care of yourself--- I'll keep you and your family in my thoughts and prayers.Maxine :0) Quote Link to comment Share on other sites More sharing options...
janiedelite Posted April 19, 2009 Author Report Share Posted April 19, 2009 Thanks so much Maxine, BellaMia and Jennifer for your kind words and prayers! Mom and I are looking forward to many happy days ahead! Quote Link to comment Share on other sites More sharing options...
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