paulaquinn
New member
can you tell me what problems you have come across after your tx ?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Transplants
- Thread starter paulaquinn
- Start date
I have experienced very few problems. I had an episode of acute rejection about two weeks post transplant. I experienced an airway narrowing about two months post transplant (dealt with by dilation and it never narrowed again). I caught bronchitis in the spring and needed IV antibiotics. And more recently the polyps in my nose have gone crazy. I had sinus surgery about a month ago, but because they raised my prednisone to do the surgery I caught an upper respiratory infection (dealt with oral antibiotics). Now I just have to make sure my pfts go back up and we will be in the clear. That is everything that I have dealt with in the last year. Are you listed for a transplant? Thinking about a transplant?
Margaret
Double lung tx. 11.11.04
Margaret
Double lung tx. 11.11.04
paulaquinn
New member
Thankyou for that , i was put on the transplant list 2 weeks ago and just want to get as much info as i can from other people who had a tx , if they dont mind me asking
I
IG
Guest
Nope we don't mind.
The problems I've had post transplant. I'm more prone to getting the sniffles. My sinuses too have gone nutso, but that might be on account of me moving to a different region. I have had sinus surgery since the transplant but that's nothing new. I had rejection for about the first month after transplant. [Which is completely normal]. It finally went away when they switched a med. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The one big thing I've had was back in december I came down with food poisoning and prayed to the porcelain gods for about 24 hours.
Throwing up is a big <b>big</b> no-no with transplant patients. I learned this the hard way. Reason being since you're pretty much numb down there if you inhale something you really can't feel it, and since you can't feel it you don't have the urge to cough it out. Come March I had a spot on my x-ray that the docs didn't like which lead to a long stressful hospitalization trying to figure out what it was [despite the fact that in december I did nothing but complain about being sick due to food poisoning] go figure. Other than that I've been as healthy as a horse [almost weigh as much as one too] or is it eat as much as one. <img src="i/expressions/face-icon-small-wink.gif" border="0">
The problems I've had post transplant. I'm more prone to getting the sniffles. My sinuses too have gone nutso, but that might be on account of me moving to a different region. I have had sinus surgery since the transplant but that's nothing new. I had rejection for about the first month after transplant. [Which is completely normal]. It finally went away when they switched a med. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The one big thing I've had was back in december I came down with food poisoning and prayed to the porcelain gods for about 24 hours.
Throwing up is a big <b>big</b> no-no with transplant patients. I learned this the hard way. Reason being since you're pretty much numb down there if you inhale something you really can't feel it, and since you can't feel it you don't have the urge to cough it out. Come March I had a spot on my x-ray that the docs didn't like which lead to a long stressful hospitalization trying to figure out what it was [despite the fact that in december I did nothing but complain about being sick due to food poisoning] go figure. Other than that I've been as healthy as a horse [almost weigh as much as one too] or is it eat as much as one. <img src="i/expressions/face-icon-small-wink.gif" border="0">
Paula,
I am now post lung tx 8 years... what an amazing thing to say.
My post tx complications have been few. I have had 5 colds in those 8 years. Two of them required some IV's. The rest just went away. I have had acute rejection and chronic. But that does not stop me. I went into chronic last year but they put me on some great new meds and I improved.
That has been it for me. No sinus, airway issues, reflux issues to speak of here.
I also have a web site for those who had lung transplants, pre and post folks, check it out, another great group of people talking tx.
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
Joanne Schum
luckylungsforjo@aol.com
I am now post lung tx 8 years... what an amazing thing to say.
My post tx complications have been few. I have had 5 colds in those 8 years. Two of them required some IV's. The rest just went away. I have had acute rejection and chronic. But that does not stop me. I went into chronic last year but they put me on some great new meds and I improved.
That has been it for me. No sinus, airway issues, reflux issues to speak of here.
I also have a web site for those who had lung transplants, pre and post folks, check it out, another great group of people talking tx.
<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>
Joanne Schum
luckylungsforjo@aol.com
some of the other complications I have has since tx other then what has been mentioned are below:
I had a abscess on my chest next to the scar that started off small and drs didnt think it was a big deal, until my scar literally broke down and I was oozing pus out of my scar 12 months later. I was on holidays at the time and had to be flown back to my hospital by air ambulance. I had surgery to remove a abscess the size of a golf ball. I had a open wound for 3 months that had to be packed and a vaccum pump placed directly over the wound to try and suck the muck out. They tried closing it after then 3 months which ended up causing a infection, and had to be re opened. When they took the abscess out they also had to remove the chest wire as it was all twisted up in the abscess, my sternum now clicks in and out continuously, which is kinda painful LOL
I also had to have a Hysterectomy 6 months after the abscess was removed, due to non stop bleeding, and chronic anemia, at the time of the hysterectomy they also had to remove my right ovary, due to a rather large dermoid cyst that grow post tx (I had it pre tx, but it tripled in size in a year)
I am also going for sinus surgery next week.....
I havent had any rejection to date, I have had a couple of chest infections mostly due to getting my anti rejection levels right (this was the first year)
but thats about all I have had go wrong, hehe
Tracy (almost 3 years out!)
I had a abscess on my chest next to the scar that started off small and drs didnt think it was a big deal, until my scar literally broke down and I was oozing pus out of my scar 12 months later. I was on holidays at the time and had to be flown back to my hospital by air ambulance. I had surgery to remove a abscess the size of a golf ball. I had a open wound for 3 months that had to be packed and a vaccum pump placed directly over the wound to try and suck the muck out. They tried closing it after then 3 months which ended up causing a infection, and had to be re opened. When they took the abscess out they also had to remove the chest wire as it was all twisted up in the abscess, my sternum now clicks in and out continuously, which is kinda painful LOL
I also had to have a Hysterectomy 6 months after the abscess was removed, due to non stop bleeding, and chronic anemia, at the time of the hysterectomy they also had to remove my right ovary, due to a rather large dermoid cyst that grow post tx (I had it pre tx, but it tripled in size in a year)
I am also going for sinus surgery next week.....
I havent had any rejection to date, I have had a couple of chest infections mostly due to getting my anti rejection levels right (this was the first year)
but thats about all I have had go wrong, hehe
Tracy (almost 3 years out!)
My face was more full right after transplant. That went away as they lowered my prednisone. My face is back to normal. I never had the extra hair growth, or the hair thinning. I was 21 years old at the time of my transplant (almost a year out for me!). My FEV1 pre transplant was 26%. My FVC was 34% and my FEF25-75 (smaller airways was 11%). Now my FEV1 is 112%...FVC 102%....FEF25-75 is 134%. Quite the difference.
Margaret
Double Lung tx 11.11.04
Margaret
Double Lung tx 11.11.04
Do you look different post tx due to the steroids? Are your faces big? I don't know it's just something I've heard.
Yes the steriods have made me quite puffy, and I admit its something I have had a hard time dealing with is the change in my appearance....I still have a hard time eating through lack on appetite, and yet I have still put on a stack of weight, mainly through fluid retention....I have days were I am puffed up badly, even my eyes feel like they are being squeezed shut, LOL, but other days its not so bad, I find the heat also makes the fluid retention worse...
And how old were all of you at the time of your tx and what was your FEV1?
I was 28 when I had my tx, my FEV1 was <15 % three months prior to the tx, I didnt take my lung function for three months due to the effort it took to do them and the results where always the same if not worse, I didnt see the point in wasting what very little energy I had left on trying to lung function
I am now sitting steady on a 124% which was my last clinic appoint...(my aim is to beat that number as well hehe) Fev1 is 3.76 I want to TRY and get 4 litres <img src="i/expressions/face-icon-small-happy.gif" border="0"> (greedy I know) (pre tx I was 0.3 at my last test which was three months prior to the op)
I also do the gym 5 days a week, lift weights and do kickboxing once a week....(My aim is "4" and I'm trying my hardest to get it!!)
Tracy (almost 3 years out)
Yes the steriods have made me quite puffy, and I admit its something I have had a hard time dealing with is the change in my appearance....I still have a hard time eating through lack on appetite, and yet I have still put on a stack of weight, mainly through fluid retention....I have days were I am puffed up badly, even my eyes feel like they are being squeezed shut, LOL, but other days its not so bad, I find the heat also makes the fluid retention worse...
And how old were all of you at the time of your tx and what was your FEV1?
I was 28 when I had my tx, my FEV1 was <15 % three months prior to the tx, I didnt take my lung function for three months due to the effort it took to do them and the results where always the same if not worse, I didnt see the point in wasting what very little energy I had left on trying to lung function
I am now sitting steady on a 124% which was my last clinic appoint...(my aim is to beat that number as well hehe) Fev1 is 3.76 I want to TRY and get 4 litres <img src="i/expressions/face-icon-small-happy.gif" border="0"> (greedy I know) (pre tx I was 0.3 at my last test which was three months prior to the op)
I also do the gym 5 days a week, lift weights and do kickboxing once a week....(My aim is "4" and I'm trying my hardest to get it!!)
Tracy (almost 3 years out)
I
IG
Guest
moonface, I had that for about a year. Apparently I was 'adorable' which was <i>lovely</i>.
It wasn't too bad, definitely not as bad as some I've seen. I think it depends on the person and perhaps the type of metabolism they have. Some people have virtually none and some have it noticably. This usually decreases as the steroid dose is lowered. Mine is down to 5 m.g. and my face is fine.
I was 17 [just turned] when I had my transplant. My fev1 was 24% I believe. I'm not absolutely for sure about that, I'd have to check. But it was quite low for me.
It wasn't too bad, definitely not as bad as some I've seen. I think it depends on the person and perhaps the type of metabolism they have. Some people have virtually none and some have it noticably. This usually decreases as the steroid dose is lowered. Mine is down to 5 m.g. and my face is fine.
I was 17 [just turned] when I had my transplant. My fev1 was 24% I believe. I'm not absolutely for sure about that, I'd have to check. But it was quite low for me.
Shamrock-
My appetite went CRAZY after transplant. That was mostly due to the prednisone in the beginning. But even now i have this insatiable love for food! I think it just all tastes better. I used to be reliant on a feeding tube to gain weight. Prior to transplant I was 74 pounds...I am now anywhere between 97 and 103. That was all weight gained on my own from eating (no water weight for me). So yes I would say that post transplant your appetite will change.
Margaret
Double Lung tx 11.11.04
My appetite went CRAZY after transplant. That was mostly due to the prednisone in the beginning. But even now i have this insatiable love for food! I think it just all tastes better. I used to be reliant on a feeding tube to gain weight. Prior to transplant I was 74 pounds...I am now anywhere between 97 and 103. That was all weight gained on my own from eating (no water weight for me). So yes I would say that post transplant your appetite will change.
Margaret
Double Lung tx 11.11.04
I've noticed that some of you had FEV1's of 24 or 26 and just wondered if you felt just terrible then & definitely knew that you needed a transplant or did you take the transplant because the lungs became available and you thought that you may not get a second chance if you passed them up.
The reason I ask is, my FEV1 is 29-30 and I'm just now getting evaluated and basically I can do normal things without getting too winded but I couldn't jog a block, walk a mile or anything like that but I feel that with no further decline (I know, not realistic) I could continue on in life at this point.
I guess my question is--was it obvious to you that it <i>was time</i>?
The reason I ask is, my FEV1 is 29-30 and I'm just now getting evaluated and basically I can do normal things without getting too winded but I couldn't jog a block, walk a mile or anything like that but I feel that with no further decline (I know, not realistic) I could continue on in life at this point.
I guess my question is--was it obvious to you that it <i>was time</i>?
I
IG
Guest
food - always loved food, always will. Prednisone bleh though, makes you feel like you're starving in the middle of having a very huge meal. For me at least. As my grandmother said 'she couldn't go past and empty refridgerator without licking the door' Though my weight has stabled out at 123.5, and I can't seem to loose it [also can't seem to gain anymore either] so eh. I'm happy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
FEV1s - good question... I took a really sharp downhill spiral about 3 months before transplant. Prior to those 3 months I was healthier than I'd been in a while. So of course with this downward drop of health it was just something to get over. The next set of antibiotics would get it then I'd be out and home again. I didn't want to admit it to myself that I was <i>really</i> sick, even before the downward spiral my health took. I was bad, I could walk wal-mart and be ok, go to school, do normal things. But I was in the hospital alot [more than what was normal for me] I was doing bad, almost constant fevers, coughing up a lot of crap, etc. It was never obvious to me that it was time, it was obvious to others that it was. When they came in [the doctors] and started to explain it to me I asked if I could say no and my grandmother but it this way 'you do this, or you die Candice' So it really wasn't a conscious decision on my part, but a lack of options. Something I had to do or I'd die. Simple as that.
FEV1s - good question... I took a really sharp downhill spiral about 3 months before transplant. Prior to those 3 months I was healthier than I'd been in a while. So of course with this downward drop of health it was just something to get over. The next set of antibiotics would get it then I'd be out and home again. I didn't want to admit it to myself that I was <i>really</i> sick, even before the downward spiral my health took. I was bad, I could walk wal-mart and be ok, go to school, do normal things. But I was in the hospital alot [more than what was normal for me] I was doing bad, almost constant fevers, coughing up a lot of crap, etc. It was never obvious to me that it was time, it was obvious to others that it was. When they came in [the doctors] and started to explain it to me I asked if I could say no and my grandmother but it this way 'you do this, or you die Candice' So it really wasn't a conscious decision on my part, but a lack of options. Something I had to do or I'd die. Simple as that.
Do you look different post tx due to the steroids? Are your faces big? I don't know it's just something I've heard.
And how old were all of you at the time of your tx and what was your FEV1?
Do I look different... yeah... I look healthy and not guant. My cheeks did get puffy post tx for about a couple years... but as they lowered the prednisone that was reduces. I recently lost 25 lbs and that also reduced the cheeks.
I forgot to mention I also had a hysterectomy in June. Due to a small football size mass on my ovary ( my sister died in April of ovarian cancer, she was also CF and post lung tx, so they thought take it all out)
I had my tx when I was 33 and my FEV1 was 17% at the time. I was listed when I was at 27%, but that is when lung allocation was vastly different.
May 2005 the lung allocation changed to who is sickest first and who will have best survival. Back when I had my tx it was who has the most time on the list.
Even though when I got listed I had days of " I don't need this. I can live like this" Then the next day it would be like knocking on deaths door and I wanted it now. So you can go back and forth.
JOanne Schum
And how old were all of you at the time of your tx and what was your FEV1?
Do I look different... yeah... I look healthy and not guant. My cheeks did get puffy post tx for about a couple years... but as they lowered the prednisone that was reduces. I recently lost 25 lbs and that also reduced the cheeks.
I forgot to mention I also had a hysterectomy in June. Due to a small football size mass on my ovary ( my sister died in April of ovarian cancer, she was also CF and post lung tx, so they thought take it all out)
I had my tx when I was 33 and my FEV1 was 17% at the time. I was listed when I was at 27%, but that is when lung allocation was vastly different.
May 2005 the lung allocation changed to who is sickest first and who will have best survival. Back when I had my tx it was who has the most time on the list.
Even though when I got listed I had days of " I don't need this. I can live like this" Then the next day it would be like knocking on deaths door and I wanted it now. So you can go back and forth.
JOanne Schum
For me, I knew that I needed it. I couldn't do the things that I loved to do anymore. I was recently looking over my pfts and I was at 60% in 2003 before I got really sick and ended up loosing 20% lung function over a year and then another 10% during the wait. My ankles were so swollen I could barely walk up the stairs anymore. I couldn't go to school with my friends, it was just too much for me. Basically my quality of life sucked because I couldn't go to school and there was no way that I could even think of starting a meaningful career and that is not the life I wanted to live. So for me, it was time and I felt it was time. Living on an oxygen tank on my couch all day out of breath and scarily skinny was not the life for me.
Joanne-
I have a question regarding hysterectomies. Is there a positive correlation between transplant and needing a hysterectomy. It is very strange but ever since my transplants my menstrual cycles have been nuts (sorry for those of you that this is too much info). The bleeding is unbelievable. I just wanted to see if heavy bleeding could be related to the transplant or if you knew if transplant could affect that. I figured you would be a good person to ask.
Margaret
Double Lung tx 11.11.04
Joanne-
I have a question regarding hysterectomies. Is there a positive correlation between transplant and needing a hysterectomy. It is very strange but ever since my transplants my menstrual cycles have been nuts (sorry for those of you that this is too much info). The bleeding is unbelievable. I just wanted to see if heavy bleeding could be related to the transplant or if you knew if transplant could affect that. I figured you would be a good person to ask.
Margaret
Double Lung tx 11.11.04
Margaret,
I know a handful or two or women who have had a hysterectomy after their lung tx. Ages varied, lung illness varied. But then when I was needing my hysterectomy and started talking to others about it, I found that many women have this done, but just don't talk about it.
Being a woman is the main blame here from what I can tell. I don't think it has to do with transplant.
As far as your periods, mine were a mess for a couple years. I did not have a period for at least 6 months after tx, and then it was heavy or light. This past year it was a real mess, I would have it, then go for 3 months with nothing, then it would come and last a day and nothing. Then it would come and I would be changing pads every 15 minutes it was so heavy. I am now 42 and I was thinking maybe I am going through early menopause. But blood tests done and when the doctor did my hysterectomy he cut the ovaries open and found I was not menopausal or even pre menopause.
See your doctor, just to reassure yourself and make sure all is okay. You might have a cyst or something. Irregular bleeding is common and harmless for the most part ( my sister works at a OB/GYN office and she learns this stuff).
I am not on any hormones, as hormone replacement can cause breast cancer. So we decided to just see how I do, and so far, so good. I am on Paxil for long term depression, and that may be the reason I am not having the mood swings that many describe.
Joanne Schum
luckylungsforjo@aol.com
I know a handful or two or women who have had a hysterectomy after their lung tx. Ages varied, lung illness varied. But then when I was needing my hysterectomy and started talking to others about it, I found that many women have this done, but just don't talk about it.
Being a woman is the main blame here from what I can tell. I don't think it has to do with transplant.
As far as your periods, mine were a mess for a couple years. I did not have a period for at least 6 months after tx, and then it was heavy or light. This past year it was a real mess, I would have it, then go for 3 months with nothing, then it would come and last a day and nothing. Then it would come and I would be changing pads every 15 minutes it was so heavy. I am now 42 and I was thinking maybe I am going through early menopause. But blood tests done and when the doctor did my hysterectomy he cut the ovaries open and found I was not menopausal or even pre menopause.
See your doctor, just to reassure yourself and make sure all is okay. You might have a cyst or something. Irregular bleeding is common and harmless for the most part ( my sister works at a OB/GYN office and she learns this stuff).
I am not on any hormones, as hormone replacement can cause breast cancer. So we decided to just see how I do, and so far, so good. I am on Paxil for long term depression, and that may be the reason I am not having the mood swings that many describe.
Joanne Schum
luckylungsforjo@aol.com
supermanfan
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>paulaquinn</b></i><br>Thankyou for that , i was put on the transplant list 2 weeks ago and just want to get as much info as i can from other people who had a tx , if they dont mind me asking<hr></blockquote>
I am nearly 9 years post transplant... and I have never had any issues. No rejection, no infections, no colds, etc. I do yearly tests, and my doctor has said that my test results show I am at normal level. I said, "You mean normal level for someone with a transplant?", and he said, "No. Normal, as is everyday people".
Transplant isn't something anyone should be afraid of. I support it completely, and promote it.
Best wishes to you <img src="i/expressions/rose.gif" border="0">
I am nearly 9 years post transplant... and I have never had any issues. No rejection, no infections, no colds, etc. I do yearly tests, and my doctor has said that my test results show I am at normal level. I said, "You mean normal level for someone with a transplant?", and he said, "No. Normal, as is everyday people".
Transplant isn't something anyone should be afraid of. I support it completely, and promote it.
Best wishes to you <img src="i/expressions/rose.gif" border="0">