update on blood typing for transplant

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anonymous

New member
Hi Guys,

I asked the transplant nurse at the Brigham and Women's Hospital about blood typing just to triple check all the info we've been sharing.

Please Note: I can't say if this applies to ALL centers...

The Brigham only types by letter and not by positive or negative. I have A negative blood and can receive donor lungs from either A+ or A-. She told me this very clearly.

I can't explain or clarify what is on the Unos site. I can only share what the transplant nurse at this specific center told me.

I hope this info helps people.

-Vicki
 
M

Marjolein

New member
I think my transplant doctor has told me the same, i'm not completely sure but almost completely <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

AmyKins

New member
Thanks for the info. - I have another question for you...how did they do the 6 minute walk test?... and did they seem very conerned about your nutriental status @ B & W?
 
A

anonymous

New member
Amy,

YES, nutrition is HUGE for the Brigham. Actually, the 6 minute walk is, too. Both play a big role in acceptance to the program and how they feel you'll do post-transplant. I think you mentioned your weight is much better now so maybe that isn't a huge problem for you??
As a side note: would love to know what you did to gain weight. just went to the store and bought body building powder to gain wt. I put 2 scoops of it in a blender w/2 cups of whole milk and some ice. The shake tastes like a mudslide and is over 700 calories. I've been trying to have one a day, but the milk is killing my lungs! Usually need some chest PT afterwards, but I guess it's worth it.

Anyway, the 6 minute walk...OK...
You meet with a PT who takes a brief history and checks vitals etc. Then she takes you out in the hall and attaches an O2 stat to your finger. She has you walk through the hall, around the corner and back again for as many laps as you can do for 6 minutes. While you're walking she walks beside you while holding the O2 stat machine and monitoring your numbers. It's pretty easy. Just wear sneakers and loose fit clothes.

-Vicki
 
E

EnergyGal

New member
If you are A or B you can aslo accept lungs for a O donor. If you are a O recipient then you can only take from an O donor. There is also a rare blood type AB+ but I think they can take from either only AB or O

You can gain weight easily if you just increase your amounts of food per meal or increase your snacks. Drink a high calorie drink in the middle of the night if you can when you awake to go to the bathroom and have a few more throughout the day. Try to drink the high calorie drink after your meal in order to get in more calories this way. Drinking high cal drinks works.
Adding more protein to snacks will help with breathing. Too many carbs will put you too sleep and possibly congest you if you overdo the carbs.

Try and wake up early in the morning to eat and then go back to sleeep if you must. Try to get in six or more mini meals per day. you might be able to increase over time. The more you eat the bigger your stomach gets and the more food you can consume.
Good luck
Risa
 
A

AmyKins

New member
I just could not gain the weight on my own, so I had a j-tube put in- since I had it put in (in May) I have gained like 13 pounds- right now I am 5'6'' -110 lbs., which I guess is ok for B&W because they told me I had to weight @ least 102. For the 6 minute walk test- I have a P/T come to my house and she makes me walk 6 minutes everyday now- so I will be able to do that just fine (I just hope they let me wear my O2 for that). I just want all the eval. to be over already, but Im going there 2 weeks from today, so soon enough... how many days was the eval. again? 3 or 4?
 
A

anonymous

New member
Hi Amy,

It took about 4 visits to complete all the tests.

Question for you: what supplement are you using through your feeding tube and how many cans of it are you using? Is it just at night?

Risa: thanks for the tips.

-Vicki
 
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AmyKins

New member
I use nutren 2.0 - I do about 4-5 cans a night (1 can = 500 cals.)- depending on when I want to get out of bed- it really has helped (even though I hate the looks of the j-tube). Is your weight ok or is that an issue for you too?
 
A

anonymous

New member
Amy,

Wow. My doc has me on Ensure. I do 3 to 4 cans a night depending on what time I go to sleep. I can only fit that many because I need to stop by 4am to let my body digest because I have Chest PT at 6am every morning (only time my therapist can do it, unfortunately). The Ensure cans are only 355 calories per shake. Had asked my doc about a month ago for something stronger, but he was hesitant about giving me something heavier w/ a lot of protein in it for fear of kidney problems--which seems odd to me since my kidneys are fine.

I've had the tube since April and have only gained 2 pounds. Granted, I've had a couple of colds and times when I barely ate during the day, but to see you gain that much weight in just a month or two makes me wonder if something is wrong with my situation.

-Vicki
 
A

anonymous

New member
Hi Vicki

Are you boardline diabetic? If so , Ensure is high in sugar and if you are not taking any insulin you will be urinating out way too much sugar. I would have that end checked. They can do a A1c hemoglobin on you.

Do you like Granola Bars? They are healthy and high in carbs. I would not do more than three a day as they are about twelve grams of sugar to them.

Nut butters like Cashew, almond or hazelnut butter are high in fats and they tend to increase your appetite during the day.
good luck
Risa

PS. I think when you spend a lot of time on the chest pt or perhaps extra sessions, you are clearing yourself up in between sessions allowing for a greater appetite. If you do not clear out then it is harder to eat throughout the day.
 
A

AmyKins

New member
well at first I had just a g-tube and I could NOT gain the weight because I couldn't keep it down, but since I have had the j-tube put it is has made a huge difference- I never vomit anymore. Also, like someone said you might want to have your sugars checked to make sure your absorbing it all- I have just started insulin and I think that is helping a lot too. This product I take is made by nestle and its 2 calories per CC. Its pretty thick, but you get used to it after a little bit. Do they want you to put on some more weight? If so, you might want to consider changing the formula you use.
 
A

anonymous

New member
Geez, I don't know about the sugars/diabetes. I will ask my doc. I know they've done those tests in the past and I've been OK. Will double check.

I have a G-tube, not J-tube--not sure of the difference, but will say that I do throw-up about once a day from coughing fits. My husband thinks that's contributing to the loss of calories, but it's not like I'm throwing up all day--like when I was nauseous from pregnancy. I know throwing up isn't good, but I don 't think that is the whole problem.

I asked my dietician about the nutren 2.0 and 3 cans would have 80grams of protein and with my weight I can take up to 85 so I'm within range. She is calling my doc to see if I can do 3 cans of Ensure per night and one can of nutren. She figured out what I need to gain a pound a week and felt this solution will work.

Thanks for all the advice and info. It's definitely helpful and I really appreciate it.

-Vicki
 
A

anonymous

New member
Do you get up to urinate in the middle of the night more than one time? If so, if this is frequent you are probably taking in way too much sugar. Tell your doctor.
Risa
 
A

anonymous

New member
Hi Risa,

No. I only get up once during the night...sometimes I can go from bedtime (11pm) til 5am without going to the bathroom during a nocturnal feeding. I just left my doc an email asking if the computer has an updated hemoglobin test on me. I'm hoping with all the blood work the Brigham did that one is listed.

Risa, quick question for you: my husband and I had asked the Brigham about 2nd transplants if the 1st doesn't work out and they said they're not often done b/c the outcome is poor. wondering your situation and your transplant center's view of 2nd transplants? I'm pleasantly surprised you were able to get one. Seems like you get very good care.

-Vicki
 
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AmyKins

New member
A J-tube bipasses the stomach all together, so you never have that full feeling. It goes into the jejunal, which is past the stomach.
Did Brigham's say they want you to gain weight?They were really stressing that the 1st time I went (I was very under weight then) I ask a lot about this because my doctor is being REALLY strict with me when it comes to nutrition- he wants to make sure it doesnt hold me back from getting on the list,-he checks my blood every week to make sure my nutrition is ok- I could agree with him 2 months ago (I only weighted 95 on april 1), but I am doing so good now (like I said 5'6'' 110- which is amazing for me) I think I can keep doing what Im doing and be just fine to be put on the list.
 
A

anonymous

New member
Amy,

YEs, Brigham is very concerned about my weight. I'm listed now, but instead of the "we'll see you every 3 months" check-up until transplant they want to see me every month and though they never said why (and stupid me was too intimidated to ask)I'm sure it's because they want to watch my weight. If I lose 1 pound I'll probably be inactivated since 93 pounds is the cut off for my height. That's why I'm working so aggressively to solve this feeding tube problem b/c I know I should've gained more by now.

How do the extra pounds feel? Was it hard to get use it at first? I've been this weight for so long that it's hard to imagine what the weight would feel like (I was 98 while pregnant last year so I guess I could remember how that felt, though it's a very different feeling when all the wt is in your belly!!!). How much were you gaining a week? Did you have to buy new clothes?
-Vicki
 
A

anonymous

New member
Amy,

p.s. yes...I think you are fine to be listed. you're really doing well and you're not borderline. don't worry. when it comes to the wt factor I don't think it will be cause for concern because you've gained so much wt. They'll be very happy!!!!
 
A

AmyKins

New member
I feel and look great ( if I say so) I hate how skinny I am!! but since I have this extra weight I feel so good about myself. The way I did it is just by the tube feedings because I am not a big eatter- I have to force myself to eat more. When I first went I was way under the limit for my height, so they told me to work on it & come back, but at that point I didnt want to be listed so I never went back, but now Im ready for this!! My only secret is the tube feeds as annoying as they can be, I never skip a night.
 
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