Going to Omaha again at the end of this month to meet the Intestinal Rehab Program team and see if any other non-surgical options work. Going to alter IVs and other meds to see what happens…
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I was just told that there is “no indication for transplant” and to scale back my activities and to get IVs seven days a week now. I didn’t know only having 3.2 feet of guts and not being able to work or keep up with my friends needed scaled back. So frustrated!
Will post more later…
I am measuring my ins and outs while trying the ORS mix so that we know if there are any changes. Tomorrow afternoon I will e-mail the results for the last 24 hours to the nutritionist. I want at least some results for them to have going into the final decision. So far it hasn’t helped, even while continuing IVs as well. I e-mailed her about my concerns and hesitation trying oral medications again because they do not work and it will waste time. I hope they take everything to heart when they meet. Wednesday is coming up fast!
FRIDAY, July 23
8:00 am – Upper GI / Small bowel series
11:30 am – Transplant Surgeon Consult
Day Five!!! Well, I made it through the Evaluation Process. The first appointment was doing an upper GI and small bowel series. It entails drinking barium in front of a ‘live’ x-ray to watch it go down the esophagus, into the stomach and through the intestines. Also swallow a barium pill to watch that. This test is for checking for any dilation, obstruction and other abnormalities. The test can take several hours in a normal digestive system; I was finished in about 45 minutes lol. Everything looked good inside though and it was fun to watch. I have drank way too much barium in the past, I am actually used to the flavor. It wasn’t until the last few gulps I had the dry heave effect. View Full Article »
THURSDAY, July 22
9:30 am – Pharmacy Consult
3:00 pm – Social Service Consult
Day Four is no more! I got to sleep in a little bit today, which I needed! My first appointment was with the Pharmacist to discuss all of the medicines I will need after transplant. Some medicines will need to be taken for life, while others are temporary. She said that people usually go home on up to 15 prescriptions and whittle them down over time. I am prepared for this kind of commitment since it means I can get my life back! I will need to be on everything from immunosuppressants, steroids, antivirals, antibiotics, blood pressure meds, stomach acid reducers, pain meds, etc…Luckily, the part D plan of my Medicare will cover all the medications that I need to be on. The anti rejection meds will be covered by part B of my Medicare.
I will need to be on (Prograf/Tacrolimus 5mg) or (Cellcept/Mycophenolate 1g) twice daily forever.
I will need to be on Prednisone 20mg once daily for six months to a year.
I will need to be on Valcyte 900mg once daily or Acyclovir 400mg twice daily for three months to a year.
I will need to be on Bactrim SS 1 tab twice daily only Monday and Tuesday or Dapsone 1 tab once daily for one year.
I will need to be on Enalapril 10mg, Amlodipine 5mg or Metoprolol 25mg as needed if transplant affects my blood pressure.
I will need to be on Nexium 20mg, Prevacid 30mg, Omeprazole 20mg or Prilosec OTC 20mg for 30 tabs if I have acid reflux after transplant.
I will need to be on Lasix for 30 tabs if needed afterwards as well.
I will need to be on pain meds as well, which will depend upon what works and takes care of the pain.
I will need to be on Multivitamins, Calcium with Vitamin D and Slow-Mag if absorption is still not able to get my body enough.
That may mean nothing to you (I am still learning about some of these) but thought it would be interesting to post it for those interested. The costs for these is quite expensive which is good that I have good insurance now. The rejection meds range from $248-$1,181 per month each type. The only other really expensive one is the antiviral for $2,596.75/month. The medicines and costs will vary on whatever combination of medicines I need to stay safe and healthy. Luckily my prescription plan allows me to get name brand meds for $6.30 and generics for $2.50. The crazy thing is that even with the most expensive medicines, it will be one-fourth the cost of my IV treatments!
I then had a pretty long break between appointments and took another nap. I have been napping between everything because I am wiped out. It is also very humid out here and that sucks me dry.
My next appointment was with the Social Worker. This was a good meeting. We discussed a lot and he made sure I understood a lot of the things that most people overlook. Made sure I had a support group of friends and family in place and also plans for housing and food and a flight to get out here when the transplant happens. He also asked about how I handle stress and what I thought about worst case scenarios that may happen with surgery. I was very open and honest with him and explained that even if the absolute worst happens, I can handle it because I will know that I did everything I could to make my life better and if it doesn’t work, I can smile knowing that I tried! I also told him I am very skeptical about the Bowel Rehabilitation they want to put me on. I have spent years trying to stay hydrated and out of the hospital without IVs and know I am beyond any oral medication help. I will voice my concerns tomorrow too but still feel they will try this first anyways because it is less invasive. I will just ask that they put me on the list the second we know there is no progress or I get worse. Tomorrow I talk to the surgeon so I hope it is very informative and a two-way conversation.
WEDNESDAY, July 21
8:00 am – Pulmonary Function Tests
9:00 am – Nutrition Consult
10:00 am – Neuropsychology Consult
1:00 pm – Financial Counselor Consult
Day Three Done! The first test of the day was to check my lungs. My lungs are really good so I aced that test! They did an ABG (Arterial Blood Gas) which is when they stick a needle through your wrist into the artery to get an exact reading of oxygen levels in your blood. He was kind of surprised that I didn’t even flinch, but I have a very high pain tolerance.
The next meeting was with the Nutritionist. View Full Article »
TUESDAY, July 20
7:30 am – Central Line Draw
8:30 am – Barium Enema
11:30 am – Upper & Lower Extremity Venous Dopplers
1:30 pm – Hepatology Consult
Day Two is done now too! Or should I say also? This morning they drew 11 tubes of blood, so in two days I have given up 19 tubes, yay! I didn’t absorb any of all the laxatives they had me take for the barium x-rays. Proof my intestines really do absorb nothing. I drank a plethora of laxatives and took 4 pills and nothing happened… They did find out something good and bad. Their estimate is that I have only 98 cm of bowel. I thought I had at least 5 feet of bowel but only have 3.2 feet of bowel. So the bad news is I have less bowel than I thought but the good news is that I am stubborn and still very healthy considering…
I then had the Dopplers but haven’t heard the results from those yet. My blood work has been pretty good though. Just a few levels a little off but the rest are good. My heart is a little enlarged but nothing out of the ordinary. Probably just a little bigger from all the IV fluids pumped in and from it working so hard every time I get dehydrated. My last appointment of the day was with a Liver doctor and Gastroenterologist. My liver is doing well which is awesome! I usually only have liver problems when my body gets really dehydrated. It bounces back when I get fluids but crashes every time I crash. This is another reason I need new intestines that will actually absorb fluids so continually causing liver and kidney trauma won’t become permanent damage!
So there is good news with the bad and bad news with the good. I have less bowel than I thought but am doing better than I should be, why, who knows… I am in a medical limbo, too sick to work or safely do the things that I want to do, but well enough I don’t think they want to do the transplant. I need them to realize I am not taking a risk to not have to do IVs, I don’t mind the medicine or even the time it takes. I mind that even with these IVs I still have zero energy and almost die every time I do something active. I get Rhabdomyolysis every time I exert myself. I am not one to sit around, I want to live life!!! I hope they will understand this.
The doctor also said I am the FIRST person in my situation to not be on any narcotics. I don’t absorb oral medicine so I have just learned to deal with the pain without medicine. They should learn that I am outside the box, I am the anomaly. I have just over 3 feet of bowel yet I still lead an active life. It is risking my life every day and I want a new small bowel so that I can do the things I want and go back to work without risking my life. I want a higher quality and a longer life. The fact that I am healthier than I ‘should be’ should not take that opportunity away from me!
MONDAY, July 19
7:00 am – Pick up Barium Enema Prep Kit
7:30 am – Central Line Draw
8:00 am – Ultrasound – Abdomen
8:45 am – Electrocardiogram (EKG)
8:45 am – Chest x-ray
8:45 am – ETOH / Drug Screen
10:00 am – History & Physical
11:00 am – Transplant Coordinator
2:00 pm – Echocardiogram
Day one is done, just waiting for my IV fluids to be delivered to my hotel room so I can hook up and get some hydration. I picked up the Barium kit but am still skeptical. My surgeon has always told me to never take anything that would flush my system (laxative) because with my extremely short bowel, I would end up in the Emergency Room. The people here say they have done it many times in the past so I will do it, but am curious what will happen. Guess we’ll see.
I then went to my blood draw and they took 8 tubes of blood and will be taking more tomorrow. My liver levels were a little off but we’ll see how it does this week. Magnesium was also low but that always happens so hopefully they agree to transplant so I can go back to living my life instead of squeaking by always sick. I then had my ultrasound and found out that I am having twins!!! They were checking my liver and the veins and arteries and all that jazz to see if it is good for transplant and connecting. The chest x-ray and EKG were pretty uneventful, those are always quick and just checking how my body is. I also had to pee in a cup to make sure I am not a druggie or boozer lol.
The History and Physical was the most in depth so far, went over all my past medical history and surgeries. They try to do the transplant as a final attempt because of the risks involved. But I did find out that if you survive the first two years, most of the time you will live a normal length life. That would be so awesome!!! Not only be healthier but stick around for awhile. The Transplant Coordinator talked about another option of Bowel Rehabilitation, which she thought was the better idea. We will see how the rest of the tests go and what the others think. I am willing to try anything but I want to be able to return to work and not be wiped out doing simple tasks. The Rehab is often a first attempt before transplant for people who aren’t in a life threatening situation at the time.
The final test for today was an echocardiogram. They wanted to check my heart to make sure it is strong and can handle a surgery this major. They told me for a small intestine transplant, the surgery will last 7-9 hours. This would be my longest surgery that I know of. The longest I can remember I was under for 6 hours. Well, time for my IVs but more will be posted tomorrow after my tests.
My doctor was right in recommending this place and I am glad I agreed and chose to come here! Just driving to our parking spot we counted 16 different states’ license plates here. Some of them were even from states that have their own Intestinal Transplant Center nearby. To me, this stands as proof that this center is the best choice and their statistics back that ‘theory’ up. University of Nebraska has the best success rates of all the places in the US, granted there are only three or four, that is still a big deal. Why would anyone want to do a serious surgery with high risk anywhere but the best??? I am willing to bet we will run across even more states as the week goes on at this hospital.
My mom and I are on our way to Omaha for the evaluation!!!
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