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LUCKY-13's Photo LUCKY-13 Posts: 11,837
7/1/10 3:22 P

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This June thread is now closed. Come over to our July thread!!!

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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MMAKAZIPPY Posts: 25
6/30/10 3:21 P

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Lynda,
You have so much you are dealing with right now. My prayers are with you as is God. emoticon

"I don't want to get to the end of my life and find that I've lived just the length of it. I want to have lived the width of it as well. - Diane Ackerman


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/28/10 3:36 P

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Lynda,

You've been through more the past few weeks than most people go through in a lifetime. I hope, and pray, that your health gets better for you, and that your husband continues to hang in there.

You're both in my prayers everyday, and please keep us updated!!!

Hugs,
Lucky
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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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6/26/10 5:51 A

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So much has happened since I wrote back on the 11th that I hardly know where to begin. I'll only write the bare essentials. On the 12th I woke up with the most horrific pain in my left flank that wrapped around to the front. Since I developed a pulmonary embolism at the hospital I was put on heavy duty blood thinners. I had to go to the lab to get blood work done. When I got home, my symptoms became more acute. I called the doctor and he said to call an ambulance. For the next 48 hours the local hospital kept seeing me and sending me home even though they diagnosed a hemmorage in the left kidney. On Wednesday the 15th my urologist admitted me to ICU at a much larger hospital. Later that day he did a CT scan with contrast. The kidney is definitely hemmoraging. There is a tumor, however. I have been diagnosed with transitional cell carcinoma of the left kidney. I will have another CT on the 2nd to confirm this and get the final diagnosis on the 7th. In addition to this, I have a severe kidney infection which will not respond to any oral antibiotics. Fortunately, I have a central line still in place from the hospital and I am able to hook up my IV antibiotics twice a day. It takes about an hour each time, but I can do it. Otherwise I would have had to remain in the hospital for another 10 days. Home health is coming twice a week to check on me.

I am going to have additional surgery the first week of August to remove my left kidney, ureter, part of my bladder, and some lymph nodes. I can't have it any sooner because I am very weak and this IV medication is making me even more weak.

Transitional Cell Carcinoma is not the worst kind of renal cancer one can have -- it is the next to the worst. According to the research that I have done, by the time you have symptoms you are usually in the advanced stages of the disease. There is a SLIM chance that this is nothing more than an acute hemmorage which may resolve itself spontaneously. That would take another miracle in my life. But, I of all people know that God is a God of miracles.

Regardless of what is finally determined, I will still lose the kidney because of the large tumor in it. Transitional Cell Carcinoma is one of the very few cancers that is not diagnosed with a biopsy, but with a CT scan.

I am anxious and am eager for July 7th to come so that I will finally know what I am dealing with. It's the not knowing for sure that is so hard to deal with. The other thing that is hard to deal with is the weakness I'm experiencing from the IV antibiotic. The medication is so strong that it not only kills all the bad bacteria in my body, but also all the good bacteria. It takes every ounce of energy I have to just slide something into the oven for my husband for his supper.

I could really use some prayers right now for strength until this medicine is finished--spiritual strength until I get a definite diagnosis--prayers for my husband who is having difficulty with all of this (he is a stroke patient who is on the verge of another major stroke which could be fatal and he is mentally ill who has no concept of my needs or how to fulfill them).

Thanks for reading this long post but I really did give you the bare bones version.

Love you all bunches,
Lynda

Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/23/10 11:33 P

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Maybe both! It appears like GP is so unpredictable. What you might be able to tolerate (stress, fiber, etc) one day might be unbearable the next. It's difficult to know when GP might flare, and if it's something different than before.

I know that thyroid hormones can affect GP, not sure about the others. If I find out anything, I'll be sure to let you know.

Hope you feel better soon!
Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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MMAKAZIPPY Posts: 25
6/23/10 11:16 P

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I am wondering what people are experiencing as triggers. I thought stress was my primary trigger but am now thinking hormones play a big role too. Usually if I stick to low fiber I tolerate anything. Last night chicken and noodles were problematic and today I had problems with eggs and a slice of toast. Stress from grad school final or hormone flux from menses?

"I don't want to get to the end of my life and find that I've lived just the length of it. I want to have lived the width of it as well. - Diane Ackerman


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/13/10 7:21 P

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Lynda,
I'm hoping by now you feel better. You've been through so much, and then to have the surgeon not understand GP. I would have thought that surely he'd understand that GP was most likely what caused the problem.

Fried chicken? Oh my goodness! As much as I would LOVE to have some, I think my stomach would rebel and bounce right out. I try not to salivate when I smell it cooking. The last time I was in the hospital, they had these tubes running through my mouth to my stomach to gauge any/how much activity was going on whenever they tried different things in my IVs. So what do they serve the first night? Pot roast!!! I couldn't even eat the mashed potatoes (that were swimming in gravy) or the salad. One of the nurses was nice and brought me a yogurt. Unbelievable! Pot roast and gravy!

Have you had any luck keeping anything down? Pudding maybe? Jello? I'm trying to think of things that might be easy on you but with some calories - especially if you eat the full sugar type. I'm having trouble eating and am having smoothies. Full fat yogurt? Tried Greek yogurt yet? The Fage yogurt with honey is very good - all of theirs is good, but I think the honey has some extra calories. ;)

If I can think of anything else I'll let you know (baby food?). I hope if you do get a baseball bat it's one of those plastic ones! lol

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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6/11/10 2:14 P

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Thanks Lucky!
I spent 2 1/2 hours with the home health team this morning. Except for doctor appointments I am homebound for the next 90 days. I'm allowed to read, play the piano, and work on the computer. Other than that I'm totally limited. This is going to be difficult because I am very hyper almost to the point of being manic. I even take medication for this. I may need a baseball bat.

I had a major frustration in the hospital. My surgeon did not (or did not care to) understand GP. When I would say things like "I can't have fiber" he would get frustrated. At one point he even threw up his hands. My first meal after 5 days of being on ice chips consisted of fried chicked, potatoes au gratin, spinach, fruit salad, and banana cream pie (I'm also diabetic). Like an idiot I ate the potatoes and a bite of the chicken simply because I was soooo hungry. I have been in pain and nauseated ever since. Do you get the feeling that he is either clueless or just doesn't give a flip. Either way, I'm angry! Also, because there was a moderate amount of stool in my colon at the time of the surgery, he treated me with a harsh laxative for the first 5 days post-op until I refused to take it. It caused extreme bloating, pain and explosive diahhrea (which was not fun leaping out of bed for the bathroom with an incision from the ribcage to the pubic bone). Several times I did not make it to the bathroom which was humiliating for me. Fortunately for me, the hospitalist is a great doctor who DOES understand GP and who is also a good friend of mine. He has assured me that he will educate the surgeon between now and when I need any further surgery (which I hope is never). In case you can't tell I'm still angry. I had the chicken on Wednesday night. This is Friday afternoon and I still can't eat. I lost 9.5 pounds in the hospital and I can't afford to lose anymore. I've lost so much weight through trying at first, then GP, then being sick with the obstruction that I've lost close to 100 pounds. I only wanted to lose 35-45 pounds when I joined SparkPeople. Now I need to start gaining. But with GP it is so hard.

I'm sorry to have ranted to much. I've never let out my feelings about GP before, but this doctor's incompetence and total lack of care has really upset me. And I know that you understand. Not many people do. Thanks for reading this diatribe.

Hugs,
Lynda

Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/10/10 8:34 P

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Lynda,
I'm so happy to hear that you made it through surgery and are back home! I know you've still got a lot of recuperating to do, a lot of medicine to take, and a lot of precautions to observe before you're completely well.

I won't stop saying prayers for you and your family until you tell me not to (and then I might be pretty stubborn and continue anyway!).

Thank you for taking the time and some of your very precious and limited energy to let us know how you're doing. Please get plenty of rest, and obey ALL the doctor's orders. We want you to get well!!!

Hugs,
Lucky
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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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6/10/10 8:19 P

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THANKS SO MUCH FOR YOUR THOUGHTS AND YOUR PRAYERS. THEY MEAN SO MUCH. EVEN THOUGH I'M HOME I STILL NEED YOUR PRAYERS. "THE SURGERY WAS A SUCCESS BUT THE PATIENT ALMOST DIED." I DEVELOPED A MILD CASE OF PNEUMONIA WHICH IS BEING TREATED WITH ANTIBIOTICS. THE AREA OF GREAT CONCERN IS THAT I HAVE A PULMONARY EMBOLISM (BLOOD CLOT) NEAR MY HEART AS A RESULT OF THE CENTRAL LINE THAT WAS PUT IN. I AM ON INJECTIBLE BLOOD THINNERS FOR THE NEXT FOUR DAYS AND COUMADIN FOR THE NEXT 6 MONTHS WITH CLOSE MONITORING BY A HEMATOLAGIST. I WILL BE ON HOME HEALTH FOR THE NEXT 60 DAYS AND ALMOST COMPLETE BEDREST (EXCEPT FOR DOCTOR VISITS) FOR THE NEXT 6 WEEKS. I'M GOING TO GO NUTS!!!! THERE GO MY FITNESS MINUTES! ALL JOKING ASIDE, IT WILL BE A DIFFICULT 6 WEEKS BUT I CAN DO IT -- I THINK.

Lynda


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TYMPANI's Photo TYMPANI Posts: 124
6/10/10 4:48 P

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I hope you are doing well, Lynda. Take care of You!

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/3/10 7:24 P

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Lynda,

You're in my prayers, and you'll definitely be in my thoughts. I'll also be saying some extra prayers that your DH will be able to handle everything OK.

Love,
Lucky


Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/3/10 7:21 P

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I'm quitting my Domperidone.

My DH and I have been evaluating the side effects for the past few days, and I feel as if I have to make this decision. The side effects were so mild, a few, mild headaches that a couple of aspirin would fix. My GI doc kept me on a low dose hoping that I cold avoid any side effects, and for about four months, I thought we had done it.

Then came unexplained and intermittent UTIs. Rashes, itching, diarrhea, fatigue, brain "fog," and the unbearable bloating that pressed too firmly on my liver and lungs. It wasn't until the bloating that I started to put the picture together.

So now I'm taking about half a dose three times a day. I'm still tired, and my hands are shaky. The GI doc assures me that this will pass soon, but I've got to be extremely careful of what I eat now. Very soft food, lots of liquids.

I know domperidone works just fine for some people, unfortunately, I'm not one of them.

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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6/3/10 5:24 P

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WELL, EVERYTHING IS FINISHED. THE HOUSE IS CLEAN,THE LAUNDRY IS UP TO DATE, THE GROCERIES ARE BOUGHT AND PUT AWAY, AND MY SUITCASE IS PACKED. NOW ALL I HAVE TO DO IS WAIT UNTIL TOMORROW MORNING TO HEAD OUT TO THE HOSPITAL. THAT'S THE HARD PART -- THE WAITING. I'LL TALK TO YOU ALL IN ABOUT A WEEK. TAKE CARE AND REMEMBER THAT I LOVE YOU ALL BUNCHES.

LYNDA

Lynda


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6/2/10 11:12 P

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Thanks Lucky. I didn't know about Diva. I will add her to my prayer list.
Lynda
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Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/2/10 10:08 P

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Please remember those on our team who's health is less than optimal!

Lynda (READINGDOC) is having surgery this Friday.
NIKEGIRL will also be having surgery soon.
DIVA540 has been in the hospital and is having a lot of trouble with her GP.

Anyone needing positive thoughts, prayer, a chance to vent, a shoulder to cry on, or anything else we can help with, please let us know.

Many hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/2/10 10:04 P

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Happy June first! Here's our official June chat thread!

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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