I've passed the 9mos mark since my transplant and the 1yr lungaversary is just around the corner. My 40th bday is days away (gulp) and I can't help but reminisce about this past year.
Before you are transplanted the team warns you about various probable setbacks that occur after transplant. When you hear those things, I thought those sound horrible but doable-I can't breathe anymore-what could be worse?!?! I was told by the social worker before transplant that 'everyone rejects in their first year', I still remember that and I'm just waiting for that to HIT me one day. But then I realize just because she said it doesn't mean its going to happen. She is nice and wonderful but she cannot predict the future. She doesn't hold my future in her hands.
The last 9 1/2 mos have been a major roller coaster rider with the last 2 mos more smoother. When I think back to that call that came on a beautiful sunny mild afternoon in October it makes me emotional. All my docs pre-transplant said I would do great and I believed them but I forgot they don't my future either and what happened post-op was definitely not great. Chest tubes weren't coming out or if they did my lung would collapse and I had to go back for another, my CXR on the right still looked funny. I wasn't able to get back to GR, MI as soon as I thought I would. And just when I was feeling stronger and getting semi-used to all the meds I was being pumped full of (and my eyes were back to normal after seeing squiggles on the walls and peoples pants from the huge amounts of steroids), I was told I had to go back to surgery and reopen the right side of my lung so the RLL could be removed and a muscle flap could take its place. That was devastating-I'm crying right now thinking about it. When I first saw that wound (on top of the original that stretches armpit to armpit) on the right I cried. I have a indentation where ribs were taken out and I thought I looked like a mutant. Looking at it now still upsets me.
I finally got to come home days before Thanksgiving with 2 chest tubes, somehow one fell out a week later and I ended back inpatient at the local hospital Butterworth.
I continued to battle the nasty ever changing bacteria pseudomonas--this was found on numerous bronchs during my hospital stays and I had to stay on IV antibiotics until this past Feb (4mos). I then developed a nasty colon infection that occurs from antibiotic use called c-diff early March. I haven't had a normal bowel movement since before transplant.
In June, my bronch grew out some rare fungus and worry again ensued my transplant team. We are still watching this closely but thankfully after much more testing things look stable.
You are warned pre-transplant about all these possibilities but nothing could ever prepare you. I am certain I have some post traumatic stress from my experiences from last fall-I didn't mention it up there but when you are awake with a tube down your throat it is the most AWFUL experience and I've made it clear to many around me don't ever want to be intubated again.
I could also go into the ICU psychosis that develops post op from the meds, shock to your body, and severe lack of sleep. Greg has good stories he's keeping.
The point being not only do I have a healthy fear of hair, now I am paranoid about catching any germ, bacteria, fungus, allergen, etc. I walk in anywhere and can hear the cough/sneeze 3 aisles down, 10 booths away--those with me don't hear it but its like I have Bat ears--the sonar always working.
I don't want to have acute rejection and be pumped full of high dose steroids and potentially lose the precious lung function I 'm working so hard to gain. That's the other thing--when you have 2 healthy lungs and God forbid you do have rejection and lose some you usually have something to work with. I don't have a lot of wiggle room with Charlie (my left lung) and I haven't named my remaining healthy right upper lobe. (Suggestions welcome)
So thanks to all your prayers and support currently I'm doing good besides the paranoia that I'm working on. I also want to encourage you to take care of yourselves. Do you worry about what you put in your mouth--was that vegetable cleaned? Is the meat cooked thru? That's part of my life now, it is was it is but just be aware. Also, I find it very disheartening when able bodied people don't take care of themselves. There is nothing physically wrong with you and you don't exercise because you don't want to ? Its too boring? REALLY?!!! S*@*@*#*@#*@ How lucky you are to have that choice and shame on you for not treating that body like the well oiled machine it is. I hate sweating and I've never sweated like I do now, and I can honestly say that exercising is not some great fun activity for me. I've heard all the excuses-but there is always something you can do positive for your body--can't run or walk-then bike-don't have access to a bike-do chair exercises-walk up 3 stairs a few times a day-DO SOMETHING. You don't have to agree with my opinion, that's fine. I have a responsibility to these lungs to take care of them, as well as to my family so I can be here for them.
These lungs of mine--given to me by someone's grieving family--think hard about that...it is almost an impossible concept to wrap one's mind around. Someone has died so I could benefit.
Thank you letter next on my list to my donors family, how difficult...
The roller coaster is taking off again--hang on tight!
Sunday, August 2, 2015
Saturday, June 20, 2015
Almost 9 mos...
It will be my 9 mos lungaversary on July 10. Everything is measured in time, 3 days until Friday, 2 wks until vacation, 1 mos until a birthday. Time consumes us- how many times have you said " if only there were more hours in a day?" Time - it will get away from you, and what I have learned the past several mos is to appreciate every minute.
My post op course was very difficult and just thinking about it now makes me teary eyed. I'm so grateful to be home and have family and friends near. Being able to do housework- grateful ! Being able to sleep in my own bed- grateful ! Being able to drive - grateful ! Taking a shower- grateful! Going to work- grateful ! Being able to make my own food- grateful!
Learn to be content with what you are able to do and what you have, don't sweat the small stuff, love hard, play hard, laugh harder. Look around you and be grateful, because as cliche as it sounds it could be gone in a moments notice.
Believe !
I'm so grateful I had a good report from my Wisconsin check up this past Monday, it's nerve wracking for me every time. Having the scope down my airway looking at my lungs is especially anxiety inducing - the doc said my lungs looked "pristine"--GRATEFUL! Returning home to Michigan in downpours and traffic back ups- grateful!
Thank you for all the support and prayers. I couldn't do it without you- each of you. My heart is grateful! I am grateful!
My post op course was very difficult and just thinking about it now makes me teary eyed. I'm so grateful to be home and have family and friends near. Being able to do housework- grateful ! Being able to sleep in my own bed- grateful ! Being able to drive - grateful ! Taking a shower- grateful! Going to work- grateful ! Being able to make my own food- grateful!
Learn to be content with what you are able to do and what you have, don't sweat the small stuff, love hard, play hard, laugh harder. Look around you and be grateful, because as cliche as it sounds it could be gone in a moments notice.
Believe !
I'm so grateful I had a good report from my Wisconsin check up this past Monday, it's nerve wracking for me every time. Having the scope down my airway looking at my lungs is especially anxiety inducing - the doc said my lungs looked "pristine"--GRATEFUL! Returning home to Michigan in downpours and traffic back ups- grateful!
Thank you for all the support and prayers. I couldn't do it without you- each of you. My heart is grateful! I am grateful!
Thursday, May 7, 2015
Hair, hair-- it's everywhere!!
People that really know me know that I have a healthy disdain for hair. Hair that is not attached to the body grosses me out. I can go into what seems to be a spotless space and my eyes find the one hair that is in the corner out of most people's sight. When I go into a hotel room the first thing I do is pull off the top comforter that is never washed (everyone should), I then pull back the sheets and look for hair. If I find one that bed is now off limits. Going into bathrooms, I have to check out the tub, the sink, the toilet, and the floor. Almost always there is hair somewhere in there taunting me.
When it's slushy or super rainy weather and you walk into a public place and see hair on the floor clumped together---- stop the press- I can't walk over that!
I am in a current state of mourning for my own hair. It's falling out and it's everywhere - all over my clothes, all over the house, on Greg's clothes, on Eric's clothes, in hair balls after pulling clothes out of the dryer, on the counters... Ahhhhhh- it's EVERYWHERE!!!
One of the side effects of my meds is hair loss. It's a bummer. I'm not a high maintenance girl but it was nice to get my hair colored and cut, now I'm scared to wash it. Every time I touch my head, hair comes out. The transplant team says this is common and it will come back. I pray this is true because right now there is no end in sight. I'm fortunate I started with a thick head of hair but that is not the current case.
If only the hair loss would be from my legs....
When it's slushy or super rainy weather and you walk into a public place and see hair on the floor clumped together---- stop the press- I can't walk over that!
I am in a current state of mourning for my own hair. It's falling out and it's everywhere - all over my clothes, all over the house, on Greg's clothes, on Eric's clothes, in hair balls after pulling clothes out of the dryer, on the counters... Ahhhhhh- it's EVERYWHERE!!!
One of the side effects of my meds is hair loss. It's a bummer. I'm not a high maintenance girl but it was nice to get my hair colored and cut, now I'm scared to wash it. Every time I touch my head, hair comes out. The transplant team says this is common and it will come back. I pray this is true because right now there is no end in sight. I'm fortunate I started with a thick head of hair but that is not the current case.
If only the hair loss would be from my legs....
Friday, April 10, 2015
Today is my 6mos lungaversary!
It was 6mos ago (10-10-14 @ 1151am) that Greg and I were leaving the Secretary of States office after waiting forever that I got the call. We had just moved ~ 3wks prior to call so we were changing our address. The weather was sunny and beautiful and I was ready to go eat lunch. God had other plans for my lunch--nothing!
I remember making phone calls to family, friends, work--trying to talk through tears and hyperventilation. Racing thoughts--was I ready for this, could I shower (who knew at the time that would be last real shower for many mos), I wouldn't get to say good-bye to my son--he was in school, were the pilots ready, was I ready (yes I know I said this). So many thoughts...
Well the pilots were ready, the flight went seamless, the cab was waiting at the airport, and I was still a bit shell shocked. God had His hand in it all. I got to Wisc around 230-3pm Mich time.
The staff on the floor (B 4/5) at U of Wisc were very welcoming and that helped my nervousness. I saw many providers involved in transplant care. One of the cardiothoracic fellows informed me that the clamshell incision is the worse incision of all a person could get. Fantastic, I'm really going to go through with this.
I tried to get info on my donor from everyone but they either didn't know or were very tight lipped. The same fellow did inform me the lungs were coming from Central Wisconsin and they were 'young lungs'--I asked to clarify their definition of young and got under 40.
I didn't go into surgery until about 8 pm Wisc time (they are 1hour behind Michigan).
After a very long stretcher ride, I got down to the OR suites and there were like 10 people lined up along the wall all looking at me, I didn't know who they were but I knew they were a part of this transplant. I also got to finally meet the cardiothoracic surgeon who was going to do the surgery (I had met the other CT surgeon during my initial transplant eval). Dr Maloney--he wasn't very big, but he had a sense of humor. The OR RN also had a sense of humor, he was had a bit of a punk flavor so I jokingly asked him to play Backstreet Boys in the OR and he quickly declined.
Who knew that the next 3 mos would be a roller coaster. I had some very serious post-op complications with the right donor lung and acquired a life threatening bacteria (had to be on IV antibiotics for 3mos). I had a handful of returns to the hospital as an inpatient the most serious being 11-17 when I had to go back to surgery to have the right lower lobe removed.
It was devastating, I thought we would be going home and had to have another major surgery. We did finally get to go home 2 days before Thanksgiving accompanied with a PICC line and chest tubes but we were home.
It has been a very difficult 6mos, but today I celebrate I am alive and my lung function has tripled. I imagine the donor family is still grieving and I will continue to push myself as I was given a gift while someone lost theirs.
I remember making phone calls to family, friends, work--trying to talk through tears and hyperventilation. Racing thoughts--was I ready for this, could I shower (who knew at the time that would be last real shower for many mos), I wouldn't get to say good-bye to my son--he was in school, were the pilots ready, was I ready (yes I know I said this). So many thoughts...
Well the pilots were ready, the flight went seamless, the cab was waiting at the airport, and I was still a bit shell shocked. God had His hand in it all. I got to Wisc around 230-3pm Mich time.
The staff on the floor (B 4/5) at U of Wisc were very welcoming and that helped my nervousness. I saw many providers involved in transplant care. One of the cardiothoracic fellows informed me that the clamshell incision is the worse incision of all a person could get. Fantastic, I'm really going to go through with this.
Clamshell incision
I tried to get info on my donor from everyone but they either didn't know or were very tight lipped. The same fellow did inform me the lungs were coming from Central Wisconsin and they were 'young lungs'--I asked to clarify their definition of young and got under 40.
I didn't go into surgery until about 8 pm Wisc time (they are 1hour behind Michigan).
After a very long stretcher ride, I got down to the OR suites and there were like 10 people lined up along the wall all looking at me, I didn't know who they were but I knew they were a part of this transplant. I also got to finally meet the cardiothoracic surgeon who was going to do the surgery (I had met the other CT surgeon during my initial transplant eval). Dr Maloney--he wasn't very big, but he had a sense of humor. The OR RN also had a sense of humor, he was had a bit of a punk flavor so I jokingly asked him to play Backstreet Boys in the OR and he quickly declined.
Who knew that the next 3 mos would be a roller coaster. I had some very serious post-op complications with the right donor lung and acquired a life threatening bacteria (had to be on IV antibiotics for 3mos). I had a handful of returns to the hospital as an inpatient the most serious being 11-17 when I had to go back to surgery to have the right lower lobe removed.
It was devastating, I thought we would be going home and had to have another major surgery. We did finally get to go home 2 days before Thanksgiving accompanied with a PICC line and chest tubes but we were home.
It has been a very difficult 6mos, but today I celebrate I am alive and my lung function has tripled. I imagine the donor family is still grieving and I will continue to push myself as I was given a gift while someone lost theirs.
Sunday, March 29, 2015
You're Not You
This was a movie I watched last night on Netflix - it has Hilary Swank, Josh Duhamel, and Emmy Rossum. It came out in 2014 and I don't recall it, but oh was I snotting all over the place!
Swank plays a woman in her late 30s who develops ALS and her husband played by Duhamel dresses, bathes, puts on her make up, etc. Swank finds out he cheats on her, feels guilty as she can't give him the life he deserves or the life they thought they would have when they first married.
ALS eventually takes away your breathing ability and you end up on a ventilator. Swanks character did not want to end up on a ventilator, she wanted to die on her terms at home even though her family wanted different. Her friends also distanced themselves as they didn't know how to deal with Swanks condition.
I related to this movie on so many levels. When you first marry your beloved you dream and discuss all the great things you are going to accomplish together. The places to go, the children to raise, the world to conquer. Then BAM you develop a life altering condition that slowly takes away things you love to do. I have the greatest husband who has stood by me through it all, yes he gets tired, yes he gets cranky, but I know he's there. I've said to him he got the raw end of this deal, and his response is that he definitely didn't -God put us together for a reason. I've helped him through things and made him who he is today and he's here to help me and loves me very much. How did I get so lucky?
Gratefully I do not have a progressive neurological condition, and I can walk. But while I was in the hospital Greg never complained about adjusting my pillows with all my chest tubes or cleaning my butt because I couldn't reach back there. (Wiping a spouse butt is on a whole other level for both parties involved). But I do feel bad I can't give Greg everything he needs right now.
We have a whole new lifestyle to adjust to with meds, side effects, routines.
We have seen people distance themselves and that hurts but they must have their reasons.
The ventilator issue is a hard one for me- I was intubated twice (2surgeries) and was awake and that was horrible! I don't ever want a ventilator again! I'm also a difficult intubation. I truly believe I have some post traumatic stress from the complications that occurred post-op. I have a constant fear of getting sick and ending up back in the hospital and away from home. I was away for so long and it was so incredibly difficult. I cry thinking about it now. But I have amazing supportive family, friends, co- workers and that makes life easier.
Be thankful for your body and what it can do and treat it well - it can do amazing things.
Watch the movie , it's worth it.
Swank plays a woman in her late 30s who develops ALS and her husband played by Duhamel dresses, bathes, puts on her make up, etc. Swank finds out he cheats on her, feels guilty as she can't give him the life he deserves or the life they thought they would have when they first married.
ALS eventually takes away your breathing ability and you end up on a ventilator. Swanks character did not want to end up on a ventilator, she wanted to die on her terms at home even though her family wanted different. Her friends also distanced themselves as they didn't know how to deal with Swanks condition.
I related to this movie on so many levels. When you first marry your beloved you dream and discuss all the great things you are going to accomplish together. The places to go, the children to raise, the world to conquer. Then BAM you develop a life altering condition that slowly takes away things you love to do. I have the greatest husband who has stood by me through it all, yes he gets tired, yes he gets cranky, but I know he's there. I've said to him he got the raw end of this deal, and his response is that he definitely didn't -God put us together for a reason. I've helped him through things and made him who he is today and he's here to help me and loves me very much. How did I get so lucky?
Gratefully I do not have a progressive neurological condition, and I can walk. But while I was in the hospital Greg never complained about adjusting my pillows with all my chest tubes or cleaning my butt because I couldn't reach back there. (Wiping a spouse butt is on a whole other level for both parties involved). But I do feel bad I can't give Greg everything he needs right now.
We have a whole new lifestyle to adjust to with meds, side effects, routines.
We have seen people distance themselves and that hurts but they must have their reasons.
The ventilator issue is a hard one for me- I was intubated twice (2surgeries) and was awake and that was horrible! I don't ever want a ventilator again! I'm also a difficult intubation. I truly believe I have some post traumatic stress from the complications that occurred post-op. I have a constant fear of getting sick and ending up back in the hospital and away from home. I was away for so long and it was so incredibly difficult. I cry thinking about it now. But I have amazing supportive family, friends, co- workers and that makes life easier.
Be thankful for your body and what it can do and treat it well - it can do amazing things.
Watch the movie , it's worth it.
Saturday, February 14, 2015
National Donor Day/Happy Valentines Day
Today is a day to represent love and one of the most loving selfless acts you can do is give life to another human being.
Stop and think what the medical community can do: so much of our body can be paid forward when God sees fit to call us home. It's a crazy thought that I have someone else's lungs inside of me. They are helping me breathe better and have given me color back.
So take time on this national day of love and tell each other how you feel. Spread some love and consider spreading that love after you are gone as an organ donor.
Stop and think what the medical community can do: so much of our body can be paid forward when God sees fit to call us home. It's a crazy thought that I have someone else's lungs inside of me. They are helping me breathe better and have given me color back.
So take time on this national day of love and tell each other how you feel. Spread some love and consider spreading that love after you are gone as an organ donor.
Friday, January 2, 2015
2015!! Here we come
A new post has been long overdue but the end of 2014 was rough.
I received my double lung transplant 10-10-14, was in the hospital roughly 2 wks and discharged home with 2 chest tubes on each side. We stayed in Madison as they didn't want me too far away so they could keep a close eye on me.
The right lower lung was always imperfect and it continued to worsen. Just when we thought we were going to be able to go home, I had to get a chest CT which showed a bad infection and dying tissue in the right lower lobe and I had to be scheduled to have it removed. Thus I was readmitted to the hospital November 11, received a PICC line for IV antibiotics and had to have my chest reopened on 11-17--they also took muscle from right upper chest to place where the lung use to be so there wasn't empty space for bacteria to breed. To do this muscle flap procedure they also removed part of my upper ribs so I have an indentation there. They kept me on the ventilator overnight and being aware of intubation is extremely difficult. They couldn't sedate me as much as my blood pressure was already on the low side.
Man -this was a big bummer and I was feeling a bit defeated. I wanted to go home, I needed to go home--I hadn't seen my son in wks and facetime just isn't the same. I was determined to get better.
I was able to go home on 11-25, right before Thanksgiving and that was so awesome. It was so good to be home and be in my own bed even if I still had chest tubes.
I was cooking some dinner on 12-1 and one of my chest tubes fell out!!!! Yes -it fell out! How does this happen?!!?!? I ended up in Butterworth ER and was admitted there to have chest tube replaced. I was discharged on 12-3.
I had follow up in Wisconsin on 12-10 and they found my white blood cells to be elevated and needed to admit for work up as elevated WBC can be a sign of infection. I had another chest CT which showed 2 small pockets of fluid/infection in that right lower lung area. They decided to put 2 chest tubes in those areas to drain the fluid and the IV antibiotics continue. I was able to leave 12-15 and continue with IV antibiotics at home which I'm still doing.
I went to Wisc 12-28 and the CT was improved and I was able to have one of the chest tubes removed!!! Yeah!!! I go back to Wisc on 1-7 and hope to have the last tube pulled. I've had tubes somewhere in my chest since October!!!!!
My labs from today are all normal--yea!!!!!!!!!
So Oct-Dec were very rough, and I pray 2015 is much smoother. I take a lot of meds which have all kinds of side effects---hot flashes, tingling/numbness in fingers and toes, headaches, memory issues, tremors, etc. But I have new lungs and its starting to feel good to take a breath! My chest has many scars and am starting to get some feeling back where the incisions are (nerves damaged when cuts are made). The initial incision that was made for transplant goes from armpit to armpit and I was told it is the worse incision to have (as it is so long and they cut through sternum).
I so appreciate the support, you do find out who your true friends are when you are traveling through the valley. Be kind and please take care of yourself and those you love around you. We are not guaranteed another day.
Breathe and be thankful for that breath.
I received my double lung transplant 10-10-14, was in the hospital roughly 2 wks and discharged home with 2 chest tubes on each side. We stayed in Madison as they didn't want me too far away so they could keep a close eye on me.
The right lower lung was always imperfect and it continued to worsen. Just when we thought we were going to be able to go home, I had to get a chest CT which showed a bad infection and dying tissue in the right lower lobe and I had to be scheduled to have it removed. Thus I was readmitted to the hospital November 11, received a PICC line for IV antibiotics and had to have my chest reopened on 11-17--they also took muscle from right upper chest to place where the lung use to be so there wasn't empty space for bacteria to breed. To do this muscle flap procedure they also removed part of my upper ribs so I have an indentation there. They kept me on the ventilator overnight and being aware of intubation is extremely difficult. They couldn't sedate me as much as my blood pressure was already on the low side.
Man -this was a big bummer and I was feeling a bit defeated. I wanted to go home, I needed to go home--I hadn't seen my son in wks and facetime just isn't the same. I was determined to get better.
I was able to go home on 11-25, right before Thanksgiving and that was so awesome. It was so good to be home and be in my own bed even if I still had chest tubes.
I was cooking some dinner on 12-1 and one of my chest tubes fell out!!!! Yes -it fell out! How does this happen?!!?!? I ended up in Butterworth ER and was admitted there to have chest tube replaced. I was discharged on 12-3.
I had follow up in Wisconsin on 12-10 and they found my white blood cells to be elevated and needed to admit for work up as elevated WBC can be a sign of infection. I had another chest CT which showed 2 small pockets of fluid/infection in that right lower lung area. They decided to put 2 chest tubes in those areas to drain the fluid and the IV antibiotics continue. I was able to leave 12-15 and continue with IV antibiotics at home which I'm still doing.
I went to Wisc 12-28 and the CT was improved and I was able to have one of the chest tubes removed!!! Yeah!!! I go back to Wisc on 1-7 and hope to have the last tube pulled. I've had tubes somewhere in my chest since October!!!!!
My labs from today are all normal--yea!!!!!!!!!
So Oct-Dec were very rough, and I pray 2015 is much smoother. I take a lot of meds which have all kinds of side effects---hot flashes, tingling/numbness in fingers and toes, headaches, memory issues, tremors, etc. But I have new lungs and its starting to feel good to take a breath! My chest has many scars and am starting to get some feeling back where the incisions are (nerves damaged when cuts are made). The initial incision that was made for transplant goes from armpit to armpit and I was told it is the worse incision to have (as it is so long and they cut through sternum).
I so appreciate the support, you do find out who your true friends are when you are traveling through the valley. Be kind and please take care of yourself and those you love around you. We are not guaranteed another day.
Breathe and be thankful for that breath.
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