sick w/FEV1 @ 17%

C

coltsfan715

New member
I definitely agree with Liza about the Transplant Support Group. I had a hard time convincing myself to go at first because I had the thought that I would be the youngest (which I was) and that no one would really understand how I felt because they would all be a bunch of smokers. Well none of that was true other than my being the youngest one. I do get some people that the concept of being chronically sick with a serious genetic disease kind of surpasses their comprehension but overall it was the first group of people outside the CF world that did understand how I felt.

Our Clinic has a support group broken down for Heart and Lng Transplants - be it people looking to get listed, waiting or transplanted and their caregivers. There is also a group specifically for caregivers but my family and I have found that the best outlet for all of us is the general heart and lung support group.

Even on top of that though I still went to counselling pre and post and I think both were beneficial in their own right.

Take Care,

Love Lindsey
 
C

coltsfan715

New member
I definitely agree with Liza about the Transplant Support Group. I had a hard time convincing myself to go at first because I had the thought that I would be the youngest (which I was) and that no one would really understand how I felt because they would all be a bunch of smokers. Well none of that was true other than my being the youngest one. I do get some people that the concept of being chronically sick with a serious genetic disease kind of surpasses their comprehension but overall it was the first group of people outside the CF world that did understand how I felt.

Our Clinic has a support group broken down for Heart and Lng Transplants - be it people looking to get listed, waiting or transplanted and their caregivers. There is also a group specifically for caregivers but my family and I have found that the best outlet for all of us is the general heart and lung support group.

Even on top of that though I still went to counselling pre and post and I think both were beneficial in their own right.

Take Care,

Love Lindsey
 
C

coltsfan715

New member
I definitely agree with Liza about the Transplant Support Group. I had a hard time convincing myself to go at first because I had the thought that I would be the youngest (which I was) and that no one would really understand how I felt because they would all be a bunch of smokers. Well none of that was true other than my being the youngest one. I do get some people that the concept of being chronically sick with a serious genetic disease kind of surpasses their comprehension but overall it was the first group of people outside the CF world that did understand how I felt.

Our Clinic has a support group broken down for Heart and Lng Transplants - be it people looking to get listed, waiting or transplanted and their caregivers. There is also a group specifically for caregivers but my family and I have found that the best outlet for all of us is the general heart and lung support group.

Even on top of that though I still went to counselling pre and post and I think both were beneficial in their own right.

Take Care,

Love Lindsey
 
C

coltsfan715

New member
I definitely agree with Liza about the Transplant Support Group. I had a hard time convincing myself to go at first because I had the thought that I would be the youngest (which I was) and that no one would really understand how I felt because they would all be a bunch of smokers. Well none of that was true other than my being the youngest one. I do get some people that the concept of being chronically sick with a serious genetic disease kind of surpasses their comprehension but overall it was the first group of people outside the CF world that did understand how I felt.

Our Clinic has a support group broken down for Heart and Lng Transplants - be it people looking to get listed, waiting or transplanted and their caregivers. There is also a group specifically for caregivers but my family and I have found that the best outlet for all of us is the general heart and lung support group.

Even on top of that though I still went to counselling pre and post and I think both were beneficial in their own right.

Take Care,

Love Lindsey
 
C

coltsfan715

New member
I definitely agree with Liza about the Transplant Support Group. I had a hard time convincing myself to go at first because I had the thought that I would be the youngest (which I was) and that no one would really understand how I felt because they would all be a bunch of smokers. Well none of that was true other than my being the youngest one. I do get some people that the concept of being chronically sick with a serious genetic disease kind of surpasses their comprehension but overall it was the first group of people outside the CF world that did understand how I felt.
<br />
<br />Our Clinic has a support group broken down for Heart and Lng Transplants - be it people looking to get listed, waiting or transplanted and their caregivers. There is also a group specifically for caregivers but my family and I have found that the best outlet for all of us is the general heart and lung support group.
<br />
<br />Even on top of that though I still went to counselling pre and post and I think both were beneficial in their own right.
<br />
<br />Take Care,
<br />
<br />Love Lindsey
 
J

j121361

New member
Thx everyone, I'll look into the support group thing, I haven't asked, but you would think a transplant center like ours would have one.

he left the hospital this weekend with PFT's at 29%,I'm not sure what the docs thinking is from here on out, but I do know that eval wont happen til his resistant pseudomonas is susceptable to 2 antibiotics.

it's been a rough month for him<img src="i/expressions/face-icon-small-sad.gif" border="0">, but he's tickled to be home, but still extremely worn out.

thx everyone,

Jamie<img src="i/expressions/rose.gif" border="0">
 
J

j121361

New member
Thx everyone, I'll look into the support group thing, I haven't asked, but you would think a transplant center like ours would have one.

he left the hospital this weekend with PFT's at 29%,I'm not sure what the docs thinking is from here on out, but I do know that eval wont happen til his resistant pseudomonas is susceptable to 2 antibiotics.

it's been a rough month for him<img src="i/expressions/face-icon-small-sad.gif" border="0">, but he's tickled to be home, but still extremely worn out.

thx everyone,

Jamie<img src="i/expressions/rose.gif" border="0">
 
J

j121361

New member
Thx everyone, I'll look into the support group thing, I haven't asked, but you would think a transplant center like ours would have one.

he left the hospital this weekend with PFT's at 29%,I'm not sure what the docs thinking is from here on out, but I do know that eval wont happen til his resistant pseudomonas is susceptable to 2 antibiotics.

it's been a rough month for him<img src="i/expressions/face-icon-small-sad.gif" border="0">, but he's tickled to be home, but still extremely worn out.

thx everyone,

Jamie<img src="i/expressions/rose.gif" border="0">
 
J

j121361

New member
Thx everyone, I'll look into the support group thing, I haven't asked, but you would think a transplant center like ours would have one.

he left the hospital this weekend with PFT's at 29%,I'm not sure what the docs thinking is from here on out, but I do know that eval wont happen til his resistant pseudomonas is susceptable to 2 antibiotics.

it's been a rough month for him<img src="i/expressions/face-icon-small-sad.gif" border="0">, but he's tickled to be home, but still extremely worn out.

thx everyone,

Jamie<img src="i/expressions/rose.gif" border="0">
 
J

j121361

New member
Thx everyone, I'll look into the support group thing, I haven't asked, but you would think a transplant center like ours would have one.
<br />
<br />he left the hospital this weekend with PFT's at 29%,I'm not sure what the docs thinking is from here on out, but I do know that eval wont happen til his resistant pseudomonas is susceptable to 2 antibiotics.
<br />
<br />it's been a rough month for him<img src="i/expressions/face-icon-small-sad.gif" border="0">, but he's tickled to be home, but still extremely worn out.
<br />
<br />thx everyone,
<br />
<br />Jamie<img src="i/expressions/rose.gif" border="0">
 
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