Re: Could it be rejection ?

[Guest guest]

Miranda

glad you are doing well most of the time

sorry you are having an episode

other people have written about the rejection issues and the need for hospital stays in the first year, i wonder if the meds are causing the stomach problems

when i first started cellcept i had a lot of stomach problems

the literature said to take it on an empty stomach, the transplant pharmacist said it is ok to take it on a full stomach

so now i do both

fasting at 7 am, and full stomach at 7 pm

i stopped eating yogurt and that has made a big difference for me

sometimes you need to figure out which foods you need to avoid

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Could it be rejection ?To: Breathe-Support Date: Monday, January 18, 2010, 11:41 AM

Hello Everyone,Since I got home from having the surgery I have been so busy. Healing, playing with the kids, shopping, I even started rehab again. I have been feeling GREAT ! Well...I do have alot of nausea and stuff from the meds but what can I do, Right ? Last week when I went to clinic the xray showed some fluid around my left lung. I told te doc that It hurt alittle bit when I cough or sneeze or laugh. He sent me for a CT scan. They made the decision to schedual me to have fluid drained. The appointment was supposed to be this coming up WED. But yesterday at home I began to hurt more, and more on my left side so I called the office and they said they wanted to admit me and have it taken care of. SOOOO...I am back in here waiting AGAIN ! They are going to drain the fluid and do a bronchoscopy. They want to rule out rejection and infection. Just wanted to give a little update. I really dont get on the computer much now between

the kids and the throwing up. But I will try to stay in touch. Hope you all are doing well. Miranda Bi-lateral lung transplant 12/07/09

[Guest guest]

Miranda,My thoughts and prayers are with you during this waiting time. Keep your chin up and keep on keeping on.Kathy ILD/Hypersensitivity pneumonitis 3/08 Subject: Could it be rejection ?To: Breathe-Support Date: Monday, January 18, 2010, 8:41 AM

Hello Everyone,

Since I got home from having the surgery I have been so busy. Healing, playing with the kids, shopping, I even started rehab again. I have been feeling GREAT ! Well...I do have alot of nausea and stuff from the meds but what can I do, Right ?

Last week when I went to clinic the xray showed some fluid around my left lung. I told te doc that It hurt alittle bit when I cough or sneeze or laugh. He sent me for a CT scan. They made the decision to schedual me to have fluid drained. The appointment was supposed to be this coming up WED. But yesterday at home I began to hurt more, and more on my left side so I called the office and they said they wanted to admit me and have it taken care of. SOOOO...I am back in here waiting AGAIN ! They are going to drain the fluid and do a bronchoscopy. They want to rule out rejection and infection.

Just wanted to give a little update. I really dont get on the computer much now between the kids and the throwing up. But I will try to stay in touch.

Hope you all are doing well.

Miranda

Bi-lateral lung transplant 12/07/09

[Guest guest]

Hi. Yes I do believe my tummy issues are from the CellCept. When I first started the CellCept I ws on 750mg and had no problems. I went home, then at clinic the dr. changed it to 1000mg. BOOM thats when I started getting sick. They say that there are alternantives to the CellCept to try.

I just got back from Ultrasound. They were going to drain the fluid from my lung but the Ultrasound showed the amount and space to be to small to do anything. It would be more of a risk to go in. SOOO...I wait and see if my body will absorb the fluid or becomes more fluid and then they can go in.

Now I am waiting for the Bronchoscopy. I hope it is soon because I havn't eaten since yesterday and I threw all of that up. I"M HUNGRY !!!

Ok I am done going on and on.....

Miranda

Transplant 12/07/09

[Guest guest]

Miranda,

Hope you feel better, I am sure they will fix you up in no time. Your story has

given me great hope that I too can have a second chance when the time comes.

Dave, Miami 43 UIP/IPF 11/09, Lung Transplant Evaluation 3/4/10

>

> Hi. Yes I do believe my tummy issues are from the CellCept. When I first

started the CellCept I ws on 750mg and had no problems. I went home, then at

clinic the dr. changed it to 1000mg. BOOM thats when I started getting sick.

They say that there are alternantives to the CellCept to try.

>  

> I just got back from Ultrasound. They were going to drain the fluid from my

lung but the Ultrasound showed the amount and space to be to small to do

anything. It would be more of a risk to go in. SOOO...I wait and see if my body

will absorb the fluid or becomes more fluid and then they can go in.

>  

> Now I am waiting for the Bronchoscopy. I hope it is soon because I havn't

eaten since yesterday and I threw all of that up.  I " M HUNGRY !!!

>  

> Ok I am done going on and on.....

>  

> Miranda

> Transplant 12/07/09

>

[Guest guest]

miranda

when i went to the er from the stomach flu shortly after starting cellcept, they gave me something to control the vomiting, it begins with a "Z"

i thought at the time i picked something up, because a lot of people in the area had the stomach flu

the next time, i didn't need to go to the er

one of those times the transplant doc, said to stop all dairy until it goes away

at some point the pulmonary recommended probiotic yogurt

tried that

never been a yogurt fan, always had to doctor it up anyway with granola and other stuff

so i stopped eating it completely

when i heard the transplant pharmacist speak at one of the transplant support groups, she gave lots of good info

and yes, cellcept does cause stomach problems in the beginning

i forget who told me that the timing of the cellcept is more important than whether or not it is with a meal or fasting

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Could it be rejection ?To: Breathe-Support Date: Monday, January 18, 2010, 2:18 PM

Hi. Yes I do believe my tummy issues are from the CellCept. When I first started the CellCept I ws on 750mg and had no problems. I went home, then at clinic the dr. changed it to 1000mg. BOOM thats when I started getting sick. They say that there are alternantives to the CellCept to try.

I just got back from Ultrasound. They were going to drain the fluid from my lung but the Ultrasound showed the amount and space to be to small to do anything. It would be more of a risk to go in. SOOO...I wait and see if my body will absorb the fluid or becomes more fluid and then they can go in.

Now I am waiting for the Bronchoscopy. I hope it is soon because I havn't eaten since yesterday and I threw all of that up. I"M HUNGRY !!!

Ok I am done going on and on.....

Miranda

Transplant 12/07/09

[Guest guest]

Praying for quick recovery. We all know you are going to be ok Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Mon, January

18, 2010 1:18:04 PMSubject: Re: Could it be rejection ?

Hi. Yes I do believe my tummy issues are from the CellCept. When I first started the CellCept I ws on 750mg and had no problems. I went home, then at clinic the dr. changed it to 1000mg. BOOM thats when I started getting sick. They say that there are alternantives to the CellCept to try.

I just got back from Ultrasound. They were going to drain the fluid from my lung but the Ultrasound showed the amount and space to be to small to do anything. It would be more of a risk to go in. SOOO...I wait and see if my body will absorb the fluid or becomes more fluid and then they can go in.

Now I am waiting for the Bronchoscopy. I hope it is soon because I havn't eaten since yesterday and I threw all of that up. I"M HUNGRY !!!

Ok I am done going on and on.....

Miranda

Transplant 12/07/09

[Guest guest]

will be praying for you.

Gale

To: Breathe-Support Sent: Mon, January 18, 2010 10:41:26 AMSubject: Could it be rejection ?

Hello Everyone,Since I got home from having the surgery I have been so busy. Healing, playing with the kids, shopping, I even started rehab again. I have been feeling GREAT ! Well...I do have alot of nausea and stuff from the meds but what can I do, Right ? Last week when I went to clinic the xray showed some fluid around my left lung. I told te doc that It hurt alittle bit when I cough or sneeze or laugh. He sent me for a CT scan. They made the decision to schedual me to have fluid drained. The appointment was supposed to be this coming up WED. But yesterday at home I began to hurt more, and more on my left side so I called the office and they said they wanted to admit me and have it taken care of. SOOOO...I am back in here waiting AGAIN ! They are going to drain the fluid and do a bronchoscopy. They want to rule out rejection and infection. Just wanted to give a little update. I really dont get on the computer much now between

the kids and the throwing up. But I will try to stay in touch. Hope you all are doing well. Miranda Bi-lateral lung transplant 12/07/09

[Guest guest]

Miranda, take care of yourself.To: Breathe-Support Sent: Mon, January 18, 2010 11:41:26 AMSubject: Could it be rejection ?

Hello Everyone,

Since I got home from having the surgery I have been so busy. Healing, playing with the kids, shopping, I even started rehab again.. I have been feeling GREAT ! Well...I do have alot of nausea and stuff from the meds but what can I do, Right ?

Last week when I went to clinic the xray showed some fluid around my left lung. I told te doc that It hurt alittle bit when I cough or sneeze or laugh. He sent me for a CT scan. They made the decision to schedual me to have fluid drained. The appointment was supposed to be this coming up WED. But yesterday at home I began to hurt more, and more on my left side so I called the office and they said they wanted to admit me and have it taken care of. SOOOO...I am back in here waiting AGAIN ! They are going to drain the fluid and do a bronchoscopy. They want to rule out rejection and infection.

Just wanted to give a little update. I really dont get on the computer much now between the kids and the throwing up. But I will try to stay in touch.

Hope you all are doing well.

Miranda

Bi-lateral lung transplant 12/07/09

[Guest guest]

Hi Miranda,

Nice to hear from you! Sorry you are having some complications, hopefully it will be something minor. I will keep you in my thoughts and prayers.

Last month I went with Beverley Joy for her appt. with Dr. Raghu and I told him about your transplant. He said to tell you hello and that he was glad to hear you got the transplant.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 18, 2010 8:41:26 AMSubject: Could it be rejection ?

Hello Everyone,Since I got home from having the surgery I have been so busy. Healing, playing with the kids, shopping, I even started rehab again. I have been feeling GREAT ! Well...I do have alot of nausea and stuff from the meds but what can I do, Right ? Last week when I went to clinic the xray showed some fluid around my left lung. I told te doc that It hurt alittle bit when I cough or sneeze or laugh. He sent me for a CT scan. They made the decision to schedual me to have fluid drained. The appointment was supposed to be this coming up WED. But yesterday at home I began to hurt more, and more on my left side so I called the office and they said they wanted to admit me and have it taken care of. SOOOO...I am back in here waiting AGAIN ! They are going to drain the fluid and do a bronchoscopy. They want to rule out rejection and infection. Just wanted to give a little update. I really dont get on the computer much now between

the kids and the throwing up. But I will try to stay in touch. Hope you all are doing well. Miranda Bi-lateral lung transplant 12/07/09

[Guest guest]

Hang in there Miranda!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 18, 2010 11:18:04 AMSubject: Re: Could it be rejection ?

Hi. Yes I do believe my tummy issues are from the CellCept. When I first started the CellCept I ws on 750mg and had no problems. I went home, then at clinic the dr. changed it to 1000mg. BOOM thats when I started getting sick. They say that there are alternantives to the CellCept to try.

I just got back from Ultrasound. They were going to drain the fluid from my lung but the Ultrasound showed the amount and space to be to small to do anything.. It would be more of a risk to go in. SOOO...I wait and see if my body will absorb the fluid or becomes more fluid and then they can go in.

Now I am waiting for the Bronchoscopy. I hope it is soon because I havn't eaten since yesterday and I threw all of that up. I"M HUNGRY !!!

Ok I am done going on and on.....

Miranda

Transplant 12/07/09