Pre & Post Transplant Questions

[anonymous]

To those of you post-tx: Did you gain a lot of weight from the steroids? Is that the norm? Did you keep the weight gain? What was your health like immediately pre-tx? Were you still able to get out and about? After the tx, how long did you have to stay at home? (I know it varies from person to person and center to center).

To those of you pre-tx and currently listed as 'inactive' - What exactly does that mean? I assume it means you 'passed' the initial consultation, did the work up, got accepted and listed, then went inactive. Why? Was it voluntary? Did your health improve? How/when will you become 'active?' Will you have to go through the work up again? To other pre-tx'ers, did you move up the list after the new rules?

Thanks for taking the time to answer my questions - just trying to stay on top of things! Take care to all.,

Jan (wife of 45 CF'er w/cepacia, No. 1 on tx list)
www.standinginthegap4greg.org

 

[senatorgraham]

Dear Jan,

I did not gain a lot of weight, but what weight I did gain was not just do to steriods-Several factors are involved-It depends on your diet, exercise, and as you are healthier it allows for a little natural weight gain. Also your steriod usage goes down over time (of course that also varies from person to person like most of my answers here) It takes time to recover but I left the hospital and went back to work-against doctors wishes-on the 14th day (only part-time as I needed to take it easy for a few days.)

As far as active versus inactive. Getting a transplant is a big decision for anyone. Some people may have medical reasons why they become inactive and others may choose to go inactive. Getting a transplant in many ways is trading one problem for another. You get new lungs but the amount of drug intake to maintain yourself after the fact can damage other organs as well as cause other problems. As an example, I have developed diabities because of the high steriod usage. Although CFers can be more prone to such conditions the steriods put me over the line, in case you are wondering the loss of chocalates, cake , and soda has been devastating.

Several things can affect you getting a transplant. Your health-is the candidate for the transplant healthy enough? Do they have infections, etc.? What is the candidates blood type? Your clinic plays a role-how aggressive is your doctor? Are they really behind the candidate? These are just a few things worth mentioning

I do not wish to deter anyone from getting a transplant only provide, in broad brushstrokes the reality that goes along with such a wonderful gift. The very positive side is I breath much better-God I am so thankful for that. No regrets.

Hope this helps.

Sincerely,

"Senatorgraham"

"My friends are my estate. Forgive the avarice of hoarding them."-Emily Dickinson

 

[IG]

Wee finally some questions I can answer...
1) Did you gain a lot of weight from the steroids? It depends on the person. I myself gained a good healthy 20 lbs. I'm finally in the 'normal' range for my height, and I know some post-Tx people who still have trouble gaining weight.
2) Is that the norm? Gaining weight, especially on steriods yes. And it's highly encouraged by the doctors, especially if you're underweight pre-Tx.
3) Did you keep the weight gain? Yes, thank goodness. I'm currently 118 lbs and have been for the past 6 months or so.
4) What was your health like immediately pre-tx? Immediately? As good as can be expected having been through a major surgery.
5) Were you still able to get out and about? Well after getting out of the hospital after Tx (they don't want you in there longer than you have to be) I was able to go places and do things, with of course the proper precautions. i.e. wearing a mask and being very careful of germs.
6) After the tx, how long did you have to stay at home? (I know it varies from person to person and center to center). Actually if you're not aware of this you have to be within a certain radius of the hospital (for my center I think it was an hour and a half maximum) before your transplant. Actually having to live there. They also want you to live there for a while after transplant as well so you're close to the doctors, hospital, and all that stuff. You'll have doctors appointments up the wazoo after TX so it's easier to just stay in the area anyway. I had to stay for 6 months before I got the okay to move back home.

'inactive' - What exactly does that mean? I assume it means you 'passed' the initial consultation, did the work up, got accepted and listed, then went inactive, etc. Yes, that's exactly what it means. I myself went 'inactive' for a month during my listing. For me personally it was because my health had stabalized and my FEV1 actually went up. It had looked like my health was getting better. So I went 'inactive' which is basically just you're on the list but if a call is made to the doctor saying that an organ has become available it goes to the person currently under you on the list that is still 'active.' You can be re-instated to the list when you feel it's necessary and still be at the position that you were at when you went inactive. You do not have to go through the work up again.
As for the last question I don't know that one.
Now I'm not sure if the 'inactive' info that I just gave you is still correct since they changed the listing process and mine happened over 2 years ago which was before they changed it, so it'd be better to ask your doctor.
If you have any other question feel free to email me, my email is in my profile.

Although I do have to agree with Senatorgraham. A transplant is just trading one set of evils for another, but you really wouldn't be listed in the first place if you didn't need it.
Anyway I hope this helps and answers your questions.

 

[Byron]

Did you gain a lot of weight from the steroids? Is that the norm? Did you keep the weight gain? <b>Initially yes; but it comes off just as fast if you keep up with excercise.</b>
What was your health like immediately pre-tx? <b>I was sucking down O2 @ 6 liters canula an sometimes a vinny mask in addition to the canula.I would even sometimes wake up in a daze not knowing where I was due to low sats.</b>
Were you still able to get out and about? After the tx, how long did you have to stay at home? (I know it varies from person to person and center to center). <b> I was initially in the hospital a lil longer than usual & had to live close to the Tx center.Being my home was 3 hrs away.A few days after I got "out" the hospital I was out an about exploring the town I had to move too.

 

[anonymous]

I gained some weight post TX perhaps from the steroids. My weight is stable and where the doctors want it (7-9 pounds heavy). They want me heavy to have some "reserve" if I get another infection or some other issue.

Immediately pre TX my health was obviously poor or I would not have undergone a TX. I was out and about and drove with my wife and 3 large dogs 2,500 miles to the TX center on oxygen.

I had a tough time post TX and did not leave for home until 7 months post TX (due to the distance from the center).

Inactive means your on the list, accepted by a center yet too healthy to undergo a TX and are not on the active list waiting for the call. It is voluntary and with the consulatation with the center and the doctors with the concensus that you are not "ready yet'. I became active when the race for lungs VS death became rather close. I was followed by the center so no need for a new workup. I was under the old rules.

Jan, I thought Greg would get his lungs by now. Best of luck.

CF 55 cepacia TX

 

[anonymous]

Us, too! The strain is wearing on us, especially my son, you know having it hang over our heads. Every phone call our hearts race! Well, hopefully the next time I post it will be from Indy! Best to you all, thanks for the info.

Jan