Tiffany's Band to Sleeve Tour

[Tiffykins 672]

I thought it would be easier to start a blog of sorts in here since I would like to keep progress notes on how things are going for me.

I have posted most of my back story in other threads so I am just going to start from today forward.

Today, I had my psych consult on base. The surgeon decided t it would be a good idea to have another consult since the psych had lapband surgery herself, and she is 74 or 75 years old. He was also concerned for me because my husband is deployed. Pleasant little lady, she deemed me fit for surgery, and invited me to join her support group.

I went to the front desk of the surgical clinic to have my med records copied. When the 2 clerks at the desk saw the stack they refused to copy them, and wanted me to leave them. Ummm NO. So, I took them back with me, and made copies at my office. I'll take them to him at my next pre-op appointment.

Not a lot to report. I start the low carb/fat diet this week. I've pretty much been doing that, but I need to add more Water, and lay off the mid-day snack.

I'm scheduled for the hematologist on Friday. I bleed excessively. Not to the point of needing a transfusion, but it took 4 days for my wisdom teeth holes to quit bleeding. I apparently heal quickly, but, I bleed a lot. All of my bloodwork has been normal, and I tested negative for the R5 factor which apparently has something to do with a reaction heparin. I read the hematology report, and it says NEGATIVE. Anyways, I am not sure what they have planned for me at this Friday's appointment. I googled R5 factor and a lot of HIV/AIDs articles show up. I am HIV negative, so I am not sure what to make of everything. I won't lie, I'm pretty freaked out mentally that I'm having to go see an oncologist. I just want to make sure I never have problems like I did with the previous surgery.

I'm a big time writer, and am often long-winded. So, if it gets too long, or I ramble it won't hurt my feeling if you just skim.

Hope everyone is having a great Hump Day! ! !

[Elisabethsew 50]

Many hematologists are oncologists. I don't absorb Iron and have to see him weekly for 8 visits to get intravenous iron dextran so don't worry about seeing him/her.

[Tiffykins 672]

Many hematologists are oncologists. I don't absorb Iron and have to see him weekly for 8 visits to get intravenous Iron dextran so don't worry about seeing him/her.

WHEW . . . thank you.

Can you easily explain what Heparin Induced Thrombocytopenia is exactly?

My old surgeon said that is what happened when one of my lap sites got infected, the one that was the size of a lima bean that opened up and all the cottage cheese consistency stuff came out. . . It was disgusting, but that is what he "assumed" I had. He waited 5 months to do any bloodwork, and said that it was an R5 factor test, plus a full metabolic profile.

My platelets and MCHC were both on the low normal side the day before surgery. Now, they have returned to normal, and the path report states "NO COAGULOPATHiC ABNORMALITIES DETECTED"

[Elisabethsew 50]

WHEW . . . thank you.

Can you easily explain what Heparin Induced Thrombocytopenia is exactly?

Thrombocytopenia means your platelet count is too low and platelets promote clotting. Platelets > thrombin 1 > thrombin 2 > fibrinogen > fibrin > clot. Factor V (five) which is commonly called Leiden Factor is activated by thrombin and binds to platelets. Aspirin inhibits platelets from clumping together. That's why you're advised to chew 4 baby aspirin if you're having chest pain (keeps the clot/blockage from getting bigger). Heparin acts on thrombin and inhibits clot formation at that level of clot formation.

People who have Leiden Factor V have a clotting disorder (coagulopathy) and should not be given heparin. Since you tested negative, you don't have to worry. The treatment for Heparin induced thrombocytopenia is plasmapheresis and platelet and blood transfusions as necessary.

My old surgeon said that is what happened when one of my lap sites got infected, the one that was the size of a lima bean that opened up and all the cottage cheese consistency stuff came out. . . It was disgusting, but that is what he "assumed" I had. He waited 5 months to do any bloodwork, and said that it was an R5 factor test, plus a full metabolic profile.

Were you on a heparin drip pre or post-op? Were you on coumadin? The only reason to wait to do the test for Leiden factor V is if you're on an antocoagulant.

My platelets and MCHC were both on the low normal side the day before surgery. Now, they have returned to normal, and the path report states "NO COAGULOPATHiC ABNORMALITIES DETECTED"

The results mean you have no genetic markers for abnormal clotting which is good. However, you might be allergic to heparin. Alternatives to heparin are lovenox and argantroban. MCHC has to do with the red blood cells. I suspect your RDW was low also (red blood cell size). It's normal for women to have low MCHC and RDW because women lose blood every month. It's a sign of Iron deficiency anemia. If all is normal now, you're good to go! I hope that wasn't too technical.

As an aside, they say people who test positive for Leiden Factor V are all related... kind of interesting tid-bit. LOL.

[Tiffykins 672]

Were you on a heparin drip pre or post-op? Were you on coumadin? The only reason to wait to do the test for Leiden factor V is if you're on an antocoagulant.

I had to take 1 regular aspirin for two days pre-op.

I was given 5 heparin injections in a 30 hour time frame, but did not go home with any anti-coags.

My surgeon was inept to my concerns. I asked for months to have f/u bloodwork, it took 5 months for him to finally order the tests.

I am highly allergic to Latex, and hallucinate when I take Vicodin.

[Elisabethsew 50]

I had to take 1 regular aspirin for two days pre-op.

That makes no sense to me at all. The standard of care is to stop apririn 3-5 days pre-op so that you are NOT predisposed to bleeding.

I was given 5 heparin injections in a 30 hour time frame, but did not go home with any anti-coags.

This makes a bit more sense. To prevent thromboemboli (blood clots that break lose and travel) some MDs order Heparin 5,000 units every 6 hours subcutaneously (under the skin in the belly/abdominal area). Heparin has a short half life (leaves the body quickly) so it's given every 6-12 hours or continuously in an IV infusion (stomach acid destroys heparin so it does not come orally).

My surgeon was inept to my concerns. I asked for months to have f/u bloodwork, it took 5 months for him to finally order the tests.

That is ridiculous!

I am highly allergic to Latex, and hallucinate when I take Vicodin.

Latex allergy is serious. Make sure you ask every person who comes near you if they are wearing latex free gloves. Ask the person who draws your blood if the tourniquet is latex free and make sure the tape is as well. If your surgeon inserts a foley catheter for urine drainage, that needs to be latex free too.

Vicodin produces weird side-effects in many people. Itching and vivid nightmares are very common. Torodol is a good alternative.

[Tiffykins 672]

Latex allergy is serious. Make sure you ask every person who comes near you if they are wearing latex free gloves. Ask the person who draws your blood if the tourniquet is latex free and make sure the tape is as well. If your surgeon inserts a foley catheter for urine drainage, that needs to be latex free too.

Vicodin produces weird side-effects in many people. Itching and vivid nightmares are very common. Torodol is a good alternative.

He tried to tell me that I only received 4 injections of Heparin because he ordered the dose every 8 hours instead of 6. Well, guess what mr surgeon, I got 5. He literally argued with me that I must of not really been paying attention. "yes, sir the nurses waking me up in the wee hours of the morning to poke me, I wasn't paying attention."

I had to pull my pants down to show him all of the bruising I had on my thighs so he would believe that they dosed me with heparin 5 times. . . He orders the heparin injection to be given in in my outer thigh.

You should of seen when they pulled the catheter out of my hands. I bled non-stop for over ten minutes with pressure. It wasn't huge bleeding because it was a 16 gauge catheter, but we had to apply pressure over 10 minutes to get it to stop. I had 2 catheters, one in each hand, and the discharge nurse pulled out the left one, slapped a little tape and gauze on it, she went to do the other one, my husband said "Ummm ma'am, I think there is a problem with her hand" We looked down and there was a little puddle of blood at my foot. . . It was not good.

I know it seems like all I do is b*tch about my horrible experience, but when I look back over the last 7 months, I cringe at everything that has happened.

I plaster the Latex allergy all over my chart.

OH LORDY, please tell me they won't catheter me. I hate, hate, having to be cathed.

Edited May 14, 2009 by Tiffykins

[Elisabethsew 50]

He tried to tell me that I only received 4 injections of Heparin because he ordered the dose every 8 hours instead of 6. Well, guess what mr surgeon, I got 5. He literally argued with me that I must of not really been paying attention. "yes, sir the nurses waking me up in the wee hours of the morning to poke me, I wasn't paying attention."

Either he ordered the medication wrongly or the RNs picked up the order incorrectly. A young patient who is alert and oriented knows what medications she got and when.

I had to pull my pants down to show him all of the bruising I had on my thighs so he would believe that they dosed me with heparin 5 times. . . He orders the heparin injection to be given in in my outer thigh.

You should of seen when they pulled the catheter out of my hands. I bled non-stop for over ten minutes with pressure. It wasn't huge bleeding because it was a 16 gauge catheter,

A 16g catheter??? That's ridiculous. We don't even use catheters that large unless it's a trauma patient who needs massive amounts of blood products fast. For IV fluids, a 22g is used. For patients going to surgery (in the U.S.) they like a 20g but 22g is fine if blood is not expected to be transfused. An 18g is ideal for blood transfusions but smaller gauges can be used.

but we had to apply pressure over 10 minutes to get it to stop. I had 2 catheters, one in each hand, and the discharge nurse pulled out the left one, slapped a little tape and gauze on it, she went to do the other one, my husband said "Ummm ma'am, I think there is a problem with her hand" We looked down and there was a little puddle of blood at my foot. . . It was not good.

I know it seems like all I do is b*tch about my horrible experience, but when I look back over the last 7 months, I cringe at everything that has happened.

I plaster the Latex allergy all over my chart.

OH LORDY, please tell me they won't catheter me. I hate, hate, having to be cathed.

You're not bitching. You're sharing your experience which was a bitch. LOL. I did get a catheter for the band but not for the VSG. Check with your surgeon.

[Tiffykins 672]

Yep, 16 gauge. I know this sounds ridiculous, but I was a vet tech for 12 years, and while I am not a nurse, I have just enough knowledge to be dangerous.

I ask so many questions, I had 2/16gauge catheters, I was flooded with fluids. . . It was insane, and the prick of anesthesiologist placed my catheter because I have horrible veins. He just jabbed it my hand, and it was HUGE. No numbing, nothing, he missed the first time. I wanted to claw his eyes out. . .

[MacMadame 81]

These same people aren't doing your sleeve, are they?!

[Tiffykins 672]

These same people aren't doing your sleeve, are they?!

Ohhhhhh good lordy, NO. I've had to manipulate and maneuver my way through Tricare Prime (husband is active duty Air Force) insurance HMO stuff. I started researching surgeons the 3rd week in March after my last horrid fill under fluoro, and ended up choosing the bariatric surgeon on base for my revision.

[Tiffykins 672]

Had the hematology appointment today.

He suspects that I have von Willebrand disease. He sent me for a battery of tests including a bleeding time test.

I finally clotted after 22 minutes. The tech was going to stop at 15 minutes, but she was pretty intrigued apparently. Anyways, I should hear back on the final results by Monday.

Of course, now I'm freaking out because I need to have this band removed, I need and want the Sleeve, but I am scared. I won't deny it. Hopefully, they will be able to still do surgery on 3 June.

I seriously want to pull my hair out. It makes me so mad that my old surgeon made me like the post-op bleeding was so trivial. I knew in my gut something wasn't right. I did not have this problem with my c-section in 1998, nor with my 2 knees surgeries in '93 and '99.

I have read a bunch of information on the internet, but I am so confused. No one in my family has had this disease. I can only pinpoint that I started noticing that I bruised really easily, and bled pretty severely after having my wisdom teeth extracted back in 2000.

I don't drink on a regular basis, I don't take Tylenol, or Aspirin. I really don't know understand all of the implications.

The hematologist did rule out an allergy to heparin.

I spent 3 hours of my day between the lab and the hematologist office. Work was so hectic today. I have a business trip next week that pulls me out of the office for 3 full days, and I have so much on my desk that I can't get caught up.

We have the end of season baseball party tomorrow for my son's team. It will be a good time, but I am going to have to cram so much crap into my day on Sunday. I'll get a bunch of it done tonight, but after the day I've had, I just want to veg out in recliner. . .

I hope everyone had a great Friday! ! !

Elisabeth- any information that you can give me about this stuff, I would greatly appreciate it.

[Elisabethsew 50]

You've been through a lot but it's important to find out if/why you have a bleeding disorder.

von Willibrand's disease is the most common clotting disorder and it's genetic. There are different types of this disease but the one most people have (75%) is the mildest form referred to as Type 1. In this type, you don't make enough of the von Willibrand factor. They should also check you for Factor VIII deficiency. Sometimes, people with von Willibrands have decreased level of Factor VIII as well (hemophiliacs have very low amounts of Factor VIII).

von Willibrand factor is a complex Protein that causes platelets to clump or stick to each other. Platelets begin the clotting cascade. If you don't have the ability (or decreased ability) to make your platelets adhere to each other, it takes longer to stop bleeding.

Treatment for Type 1 is really prophylactic. You'll need to tell your dentist and any MD or surgeon that you see about it. If you have trouble clotting, you can get Factor VIII through an intravenous drip and it takes no time to transfuse. Deciding whether or not to treat patients usually depends on the type of von Willibrands you have as well as the percentage of your deficiency. Someone with a 10% deficiency might not be treated whereas a person with a 40% deficiency might.

Finally, you should ask if you need to have your children tested. Tell the RNs that you need to be placed on bleeding precautions.

[Tiffykins 672]

You've been through a lot but it's important to find out if/why you have a bleeding disorder.

von Willibrand's disease is the most common clotting disorder and it's genetic. There are different types of this disease but the one most people have (75%) is the mildest form referred to as Type 1. In this type, you don't make enough of the von Willibrand factor. They should also check you for Factor VIII deficiency. Sometimes, people with von Willibrands have decreased level of Factor VIII as well (hemophiliacs have very low amounts of Factor VIII).

von Willibrand factor is a complex Protein that causes platelets to clump or stick to each other. Platelets begin the clotting cascade. If you don't have the ability (or decreased ability) to make your platelets adhere to each other, it takes longer to stop bleeding.

Treatment for Type 1 is really prophylactic. You'll need to tell your dentist and any MD or surgeon that you see about it. If you have trouble clotting, you can get Factor VIII through an intravenous drip and it takes no time to transfuse. Deciding whether or not to treat patients usually depends on the type of von Willibrands you have as well as the percentage of your deficiency. Someone with a 10% deficiency might not be treated whereas a person with a 40% deficiency might.

Finally, you should ask if you need to have your children tested. Tell the RNs that you need to be placed on bleeding precautions.

Thank you. I called my mom and my aunt (my dad's sister) to find out if anyone else had been diagnosed. To their knowledge, none of my relatives have this disorder.

I have always had symptoms of "easy bleeding". I bruise extremely easily, like it took 4 days for me to quit bleeding when I had 2 of my wisdom teeth extracted.

If it isn't von Willebrand disease, I hope they can get a diagnosis. . . I just want to make sure everyone knows everything before surgery. I can't go through another horrific experience. The hematologist is actually familiar with gastrectomies, and he says that he really doesn't think that it's going to pose a major roadblock.

Thank you so very much for all of your help, and information.

[Tiffykins 672]

Well, the blood work that the hematologist ordered last week all came back normal except for my bleeding time was greater than 20 minutes. The hematologist is like 98% certain that it is von Willebrand disease which is a relief. I go tomorrow for more blood work to determine which type of von Willebrand.

I just got back into town from the stupid business trip.

Caysen made the All-Star team for his little league. Last year, this coach's team made it all the way to state, and his son went to the Little League World Series. I was so proud of him, he called me while I was out of town, and I could hear all of his excitement.

Tonight, Caysen (he's 10) asked me "mommy, can you die?" I said "well of course I can die, we all can die Caysen." He said " No mommy, I mean with this surgery." He just broke down and started crying. He is so freaked out. I finally calmed his nerves and he has a better understanding of what is going on.

I think he just really missed me while I was out of town. It doesn't help that John is gone and he is worried about being left without us. It's just a lot for a 10 year old to comprehend. . .

I hope everyone is doing well. I'll be checking in with everyone over the weekend.