Well there isn't much to update in regards to my health as (hooray!) things have been uneventful!
The past few months have been fantastic. I have been able to enjoy WDW a few times with Kurt - we went for A Halloween and Christmas Party and to visit the parks a few times. We are staying away from WDW for the rest of the year with the mass infux of visitors, but still it was wonderful to go. I love this time of year and going to Disney on top of that is just fantastic.
Otherwise things have been busy here with getting ready for Christmas, as I am sure they are everywhere (or most everywhere) this time of year.
I have been continuing my exercising and been out doing a bit of job hunting. I am hoping to find something by the end of the year beginning of next. It is just somewhat challenging right now to find something that is NOT in retail and since I do not have too much work experience (since I was sick and not really able to work for a while) it is even more challenging. We will get there though it is just taking a little longer than I had hoped.
There have been a few other small things going on that have kept me busy, and I have been out testing these new lungs lol. We have been able to play a little football and hockey and I am trying to learn to skate (well rollerblade - which I will say is harder than I thought it would be).
This week I have gone to a Christmas Party and attended a Silent Auction for the Adult CF Foundation in Jacksonville. Both were wonderful events and I was so thrilled to be able to attend them. I got to see so many friends and it was just great to see everyone again.
I am going to go for now, but I hope that my next update won't be so far off. I just get wrapped up in life and forget sometimes. It is wonderful to be able to say that - I have the energy and the ability now to be out and going and to not have too much time to be on the computer!
Have a Great Day and a Wonderful Christmas - or Happy Holidays if you do not celebrate Christmas!
Lindsey
Friday, December 7, 2007
Monday, October 22, 2007
6 month check up - October 22, 2007
Well I really don't know what to say other than these past 6 months have absolutely flown by. I had my 6 month check up just about a week ago and things were perfect. I had been looking forward to my appointment for a few weeks cause I have been feeling great and just knew the tests would go wonderfully.
I had my normal blood work and chest xray, along with a breathing test and bronchoscopy done on Tuesday. Then I followed up with the doc the next day. They said all of my labs were perfect and my breathing test went amazingly well. My FEV1 is up to about 88% and my FVC is about 81% My FEV1 was up 10% from 78% at my last visit, while my FVC was up 13% from 68% at my last visit. They did not do a biopsy because they said that everything looked great and there was no need for that to be done.
I have been given the all clear to track down a job and go back to school when I want too. I have already been looking for work, but think I am going to give myself a chance to get adjusted to working before I step into work AND school. I also got the okay to go to school for Massage Therapy if I choose to go that route. I was a bit worried that I would be told it wasn't a good idea when I brought it up due to patient contact, but the nurse seemed to think it was a good idea since you don't so much deal with sick people as injured people in the therapy world. Also another yay! I have been told it is okay for my to travel out of state. I had gone on a few weekend trips to Orlando and such but was hesitant to go out of state cause I didn't know if they would have a problem with that or not.
All in all the appointment last week was fantastic. I was started on a blood pressure medication because I have had an increase in my blood pressure due to the transplant meds. Otherwise things couldn't be better though. I also got to lower my Prednisone dose to 7.5mg, so we are seeing how that goes for now.
My next appointment is in January and I am sure that time will fly until then too. Just like with this last appointment.
Now my next goal is too maintain my weight around where it is now ... 125lbs ... and to get my PFTs above 95%. Hopefully I will be able to manage that in three months, but it will require some work lol.
Well I must go for now as we are heading to the Jags vs. Colts Monday Night Game!!! I am so excited for this. At the beginning of the year I didn't think I would be making it to the game this year cause I just didn't have the energy for it. Then I had my surgery and I didn't think I wouldbe given the all clear because of the large crowds, after asking (nicely) I was told okay just to wear my mask and clean my hands alot. I am so excited about this - this is a yearly thing for Kurt and I to go to this game so it will be GREAT!
Take Care,
Lindsey
I had my normal blood work and chest xray, along with a breathing test and bronchoscopy done on Tuesday. Then I followed up with the doc the next day. They said all of my labs were perfect and my breathing test went amazingly well. My FEV1 is up to about 88% and my FVC is about 81% My FEV1 was up 10% from 78% at my last visit, while my FVC was up 13% from 68% at my last visit. They did not do a biopsy because they said that everything looked great and there was no need for that to be done.
I have been given the all clear to track down a job and go back to school when I want too. I have already been looking for work, but think I am going to give myself a chance to get adjusted to working before I step into work AND school. I also got the okay to go to school for Massage Therapy if I choose to go that route. I was a bit worried that I would be told it wasn't a good idea when I brought it up due to patient contact, but the nurse seemed to think it was a good idea since you don't so much deal with sick people as injured people in the therapy world. Also another yay! I have been told it is okay for my to travel out of state. I had gone on a few weekend trips to Orlando and such but was hesitant to go out of state cause I didn't know if they would have a problem with that or not.
All in all the appointment last week was fantastic. I was started on a blood pressure medication because I have had an increase in my blood pressure due to the transplant meds. Otherwise things couldn't be better though. I also got to lower my Prednisone dose to 7.5mg, so we are seeing how that goes for now.
My next appointment is in January and I am sure that time will fly until then too. Just like with this last appointment.
Now my next goal is too maintain my weight around where it is now ... 125lbs ... and to get my PFTs above 95%. Hopefully I will be able to manage that in three months, but it will require some work lol.
Well I must go for now as we are heading to the Jags vs. Colts Monday Night Game!!! I am so excited for this. At the beginning of the year I didn't think I would be making it to the game this year cause I just didn't have the energy for it. Then I had my surgery and I didn't think I wouldbe given the all clear because of the large crowds, after asking (nicely) I was told okay just to wear my mask and clean my hands alot. I am so excited about this - this is a yearly thing for Kurt and I to go to this game so it will be GREAT!
Take Care,
Lindsey
Thursday, August 2, 2007
August 2, 2007 Update
Well there really is not much to update, but I wanted to let you all know what I do know.
My last culture was negative - meaning it is free of bacteria - except normal flora (which is supposed to be there). That is awesome news and meant that I got ANOTHER med change. I was stepped down from taking my antibiotic twice a day to taking a maintenance dose of 3 times a week - so MWF for me. Just one more thing down.
Otherwise all is well - I am finishing up with rehab this coming Monday also, so the next step .. finding a gym. That is a first. I have NEVER had a gym membership before - HA this should be fun - or should I say funny.
Have a good one!
Lindsey
My last culture was negative - meaning it is free of bacteria - except normal flora (which is supposed to be there). That is awesome news and meant that I got ANOTHER med change. I was stepped down from taking my antibiotic twice a day to taking a maintenance dose of 3 times a week - so MWF for me. Just one more thing down.
Otherwise all is well - I am finishing up with rehab this coming Monday also, so the next step .. finding a gym. That is a first. I have NEVER had a gym membership before - HA this should be fun - or should I say funny.
Have a good one!
Lindsey
Wednesday, July 25, 2007
July 25th, 2007 Update
Well I just wanted to let everyone know how things have been for me the past few weeks.
My birthday was pleasant and YES I did blow out all of my candles this year. Better yet I only had to use about HALF of my breathe and was not panting for air when I was done. I had a good time with friends and some family, though not everyone could be there we made the best of it.
As for healthwise things have been pretty good. I finished the antibiotics I started a few weeks ago and am feeling a bit better. My headaches have stopped and the sinus rinses are now able to actually help clear my sinuses whereas before the antibiotics they were seeming to be a waste of time to me. I have been exercising and trying to build my strength also. I have started riding my bike several days a week - basically anytime the weather is nice - something I have not been able to do in over 3 years comfortably. I would try riding before transplant and could only last a minute or so on the bike before I had to stop because I could not breathe. The last time I went for a ride was Sunday July, 22nd and I was able to ride for 6 miles. I made 6 miles in just about 40 minutes. I am not sure if that is slow or not, but to me it is a good pace and I am just excited that I could ride for 40 minutes continuously without needing a break to catch my breath.
I had my 3 month bronchoscopy on Monday the 23rd. Things went pretty well with that - they also took lung biopsies to check for any signs of rejection. I had a breathing test which was very similar to my last one. My TOTAL lung volume had not changed, but the amount of air that I breathe OUT in the first second of exhalation had increased by 4%. My total lung volume is still at around 70% of "normal", while the air I exhale in the first second is up to about 78% of "normal". Also to add - normal is compared to someone my age, sex, weight, height with no underlying lung issues.
I was seen a day early in the office for my 3 month appointment because I was having some wheezing the night and morning after my bronchoscopy, apparently the wheezing is not normal. I called to ask what to do and they just brought me into the office. I talked to the nurse and the doctor and things look fine. The doctor actually said that everything is perfect. My biopsy is perfect - 0 - ZERO signs of rejection, my Pulmonary Function Tests (PFTs or Breathing Tests) are great, my cultures as of right now are clear and my blood work looks good. He said that if - IF - he were to treat me for anything he would not know where to begin because everything looks great and he doesn't want to change anything really.
Even though he said nothing needed to be changed he did change some of my medication doses - which is good. He decreased my prednisone dose from 15mg a day to 10mg a day which is wonderful because the prednisone can really affect your blood sugar. Then he increased my Prograf (one of the anti rejection meds) dose from 3mg in the morning and at night to 4 mg in the morning and 3mg at night. He is having me get bloodwork redone on Friday to make sure my levels are okay for Prograf and that they are not to high. My next scheduled appointment and bronch are not for several months now, but I still have some rehab appointments and labs to do.
I will let you go for now because I have to go to a rehab appointment soon, but I hope everyone is doing well and thank you for reading.
Take Care!
My birthday was pleasant and YES I did blow out all of my candles this year. Better yet I only had to use about HALF of my breathe and was not panting for air when I was done. I had a good time with friends and some family, though not everyone could be there we made the best of it.
As for healthwise things have been pretty good. I finished the antibiotics I started a few weeks ago and am feeling a bit better. My headaches have stopped and the sinus rinses are now able to actually help clear my sinuses whereas before the antibiotics they were seeming to be a waste of time to me. I have been exercising and trying to build my strength also. I have started riding my bike several days a week - basically anytime the weather is nice - something I have not been able to do in over 3 years comfortably. I would try riding before transplant and could only last a minute or so on the bike before I had to stop because I could not breathe. The last time I went for a ride was Sunday July, 22nd and I was able to ride for 6 miles. I made 6 miles in just about 40 minutes. I am not sure if that is slow or not, but to me it is a good pace and I am just excited that I could ride for 40 minutes continuously without needing a break to catch my breath.
I had my 3 month bronchoscopy on Monday the 23rd. Things went pretty well with that - they also took lung biopsies to check for any signs of rejection. I had a breathing test which was very similar to my last one. My TOTAL lung volume had not changed, but the amount of air that I breathe OUT in the first second of exhalation had increased by 4%. My total lung volume is still at around 70% of "normal", while the air I exhale in the first second is up to about 78% of "normal". Also to add - normal is compared to someone my age, sex, weight, height with no underlying lung issues.
I was seen a day early in the office for my 3 month appointment because I was having some wheezing the night and morning after my bronchoscopy, apparently the wheezing is not normal. I called to ask what to do and they just brought me into the office. I talked to the nurse and the doctor and things look fine. The doctor actually said that everything is perfect. My biopsy is perfect - 0 - ZERO signs of rejection, my Pulmonary Function Tests (PFTs or Breathing Tests) are great, my cultures as of right now are clear and my blood work looks good. He said that if - IF - he were to treat me for anything he would not know where to begin because everything looks great and he doesn't want to change anything really.
Even though he said nothing needed to be changed he did change some of my medication doses - which is good. He decreased my prednisone dose from 15mg a day to 10mg a day which is wonderful because the prednisone can really affect your blood sugar. Then he increased my Prograf (one of the anti rejection meds) dose from 3mg in the morning and at night to 4 mg in the morning and 3mg at night. He is having me get bloodwork redone on Friday to make sure my levels are okay for Prograf and that they are not to high. My next scheduled appointment and bronch are not for several months now, but I still have some rehab appointments and labs to do.
I will let you go for now because I have to go to a rehab appointment soon, but I hope everyone is doing well and thank you for reading.
Take Care!
Saturday, July 14, 2007
9 weeks post transplant - update
Well I wanted to update everyone on how things have been going for me since transplant. I know some time has passed without an update, so this may be lengthy.
Firstly all is well, though this past week has been a bit hectic. I have had few issues in regards to my new lungs - there have been no signs of rejection and all of my biopsies have come back perfectly normal. I had one episode where I felt "tight" and constricted when I was breathing. I mainly felt like I was having to work extra hard to get the same results that I had been getting for the first few weeks. That happened at about 5 weeks post transplant. I called the doctor and they ended up bringing me in early for a breathing test - which was stable. Then they decided to bring me in for a bronchoscopy and check things out. When they looked around they found some secretions - most likely from my sinuses - and also removed some scar tissue that was growing inside the bronchi (where the new lungs were attached to my bronchi and trachea) and somewhat constricting my airways. From that point I have seen improvement in my breathing and lung function and not had any other lung issues.
Most of my problems as of late seem to be related to my sinuses. I have had two CT Scans to look at my sinuses, both of which show them being fairly full. I was a bit disappointed in that because I just had sinus surgery in January and I thought that the surgery would give longer lasting results. I was having pretty severe headaches and that is what led to my first CT Scan and appointment with the ENT (Ear Nose and Throat doctor). He looked in my nose and cleaned out some stuff and took cultures. Being that the cultures came back growing the same bacteria that had been in my lungs before transplant (the bacteria is in my sinuses now NOT my lungs though thank goodness) the doctor started me on an antibiotic sinus rinse. I have to do a saline sinus rinse twice a day followed by the antibiotic sinus rinse also twice a day. I will do the antibiotic sinus rinse twice a day for 6 months, and then it will be cut back to once a day for 6 months. I was not able to get that prescription filled right away, so about a week passed from the time I got the script until I was able to take the medication.
In that time I started to run a fever. I talked to my Nurse Coordinator at the Transplant Center and they prescribed me Cipro - an oral antibiotic - to be taken twice a day for two weeks. They think that my fever was caused by my sinuses. My fever went away over the weekend and reappeared on Wednesday July 11th and stuck around until the 12th. I again called the doctors office because we are supposed to call the doctor if we ever have a temperature over 99.5. Running a temperature can be a sign of rejection OR infection, so that is why we have to call. When I talked to them the second time they again said that it was most likely my sinuses causing the problem. They then prescribed yet another medication. This one is Colistin - a nebulized medication. I am now using that once a day for the next 10 days, and I am nebbing it with a mask so I can breathe the medicine into my sinuses. The docs are hoping that between the Cipro, Colistin and Gentamicin (the antibiotic sinus rinse I am using) that the sinus infection will be effectively attacked. Though I was somewhat disappointed yesterday when I met with the ENT again because he told me that I will never have normal sinuses and they are probably about as good as they will get. I was just hoping to have more improvement I guess.
So yes my lungs have been doing wonderfully, but my sinuses have now decided to act up. My sinuses are still an issue because I still have the Cystic Fibrosis DNA in my sinuses - as well as the rest of my body (except for my lungs). I will have to deal with sinus rinses and probably periodic antibiotics for my sinuses for the rest of my life according to the ENT I talked to yesterday. It is alright though - it is a workable situation so long as I can breathe.
Also in GREAT news. I have been sleeping better. As the doctors at the Transplant Center started lowering my medication doses I began having trouble sleeping. Now that my medications have been stable for a few weeks I have been able to get better sleep. I am still doing my daily breathing tests, exercises and meds and such. I am finding that most of my issues with exercise now are related to my being so weak and having no muscle mass. I was unable to do much physical activity for so long that I have more difficulty with muscle cramping and tiredness than being short of breath now. I am able to walk upwards of 3 miles an hour now, whereas before transplant I was only walking 2 miles an hour (on a good day) and when I was pushing it. My normal "casual" pace was lower than that. I went for my first bike ride in about 3 years - on a NON stationary bike - Thursday July 12th. I rode for about 3 miles and it took me about 25 minutes. I went in the heat of the day on Thursday, so I was pleased with that. I decided to try again on Friday the 13th for another bike ride and went after eating dinner when it was cooler. I was able to ride 4.5 miles in roughly 30 minutes. I was so excited. Otherwise, I am slowly trying to get back into life "as usual." I am trying to get a schedule down or a daily routine. It just always seems like there is so much to do - days really should be something like 40 hours :). I get up and before I know it, after I do all my meds, testing and exercises that I have to do, it is time for lunch if not later.
I am going to end this for now as I am going to visit family. Also to let everyone know I am going to be celebrating my 25th birthday tomorrow. YAY! I will actually be able to blow out candles this year - so long as there isn't too much smoke :).
Firstly all is well, though this past week has been a bit hectic. I have had few issues in regards to my new lungs - there have been no signs of rejection and all of my biopsies have come back perfectly normal. I had one episode where I felt "tight" and constricted when I was breathing. I mainly felt like I was having to work extra hard to get the same results that I had been getting for the first few weeks. That happened at about 5 weeks post transplant. I called the doctor and they ended up bringing me in early for a breathing test - which was stable. Then they decided to bring me in for a bronchoscopy and check things out. When they looked around they found some secretions - most likely from my sinuses - and also removed some scar tissue that was growing inside the bronchi (where the new lungs were attached to my bronchi and trachea) and somewhat constricting my airways. From that point I have seen improvement in my breathing and lung function and not had any other lung issues.
Most of my problems as of late seem to be related to my sinuses. I have had two CT Scans to look at my sinuses, both of which show them being fairly full. I was a bit disappointed in that because I just had sinus surgery in January and I thought that the surgery would give longer lasting results. I was having pretty severe headaches and that is what led to my first CT Scan and appointment with the ENT (Ear Nose and Throat doctor). He looked in my nose and cleaned out some stuff and took cultures. Being that the cultures came back growing the same bacteria that had been in my lungs before transplant (the bacteria is in my sinuses now NOT my lungs though thank goodness) the doctor started me on an antibiotic sinus rinse. I have to do a saline sinus rinse twice a day followed by the antibiotic sinus rinse also twice a day. I will do the antibiotic sinus rinse twice a day for 6 months, and then it will be cut back to once a day for 6 months. I was not able to get that prescription filled right away, so about a week passed from the time I got the script until I was able to take the medication.
In that time I started to run a fever. I talked to my Nurse Coordinator at the Transplant Center and they prescribed me Cipro - an oral antibiotic - to be taken twice a day for two weeks. They think that my fever was caused by my sinuses. My fever went away over the weekend and reappeared on Wednesday July 11th and stuck around until the 12th. I again called the doctors office because we are supposed to call the doctor if we ever have a temperature over 99.5. Running a temperature can be a sign of rejection OR infection, so that is why we have to call. When I talked to them the second time they again said that it was most likely my sinuses causing the problem. They then prescribed yet another medication. This one is Colistin - a nebulized medication. I am now using that once a day for the next 10 days, and I am nebbing it with a mask so I can breathe the medicine into my sinuses. The docs are hoping that between the Cipro, Colistin and Gentamicin (the antibiotic sinus rinse I am using) that the sinus infection will be effectively attacked. Though I was somewhat disappointed yesterday when I met with the ENT again because he told me that I will never have normal sinuses and they are probably about as good as they will get. I was just hoping to have more improvement I guess.
So yes my lungs have been doing wonderfully, but my sinuses have now decided to act up. My sinuses are still an issue because I still have the Cystic Fibrosis DNA in my sinuses - as well as the rest of my body (except for my lungs). I will have to deal with sinus rinses and probably periodic antibiotics for my sinuses for the rest of my life according to the ENT I talked to yesterday. It is alright though - it is a workable situation so long as I can breathe.
Also in GREAT news. I have been sleeping better. As the doctors at the Transplant Center started lowering my medication doses I began having trouble sleeping. Now that my medications have been stable for a few weeks I have been able to get better sleep. I am still doing my daily breathing tests, exercises and meds and such. I am finding that most of my issues with exercise now are related to my being so weak and having no muscle mass. I was unable to do much physical activity for so long that I have more difficulty with muscle cramping and tiredness than being short of breath now. I am able to walk upwards of 3 miles an hour now, whereas before transplant I was only walking 2 miles an hour (on a good day) and when I was pushing it. My normal "casual" pace was lower than that. I went for my first bike ride in about 3 years - on a NON stationary bike - Thursday July 12th. I rode for about 3 miles and it took me about 25 minutes. I went in the heat of the day on Thursday, so I was pleased with that. I decided to try again on Friday the 13th for another bike ride and went after eating dinner when it was cooler. I was able to ride 4.5 miles in roughly 30 minutes. I was so excited. Otherwise, I am slowly trying to get back into life "as usual." I am trying to get a schedule down or a daily routine. It just always seems like there is so much to do - days really should be something like 40 hours :). I get up and before I know it, after I do all my meds, testing and exercises that I have to do, it is time for lunch if not later.
I am going to end this for now as I am going to visit family. Also to let everyone know I am going to be celebrating my 25th birthday tomorrow. YAY! I will actually be able to blow out candles this year - so long as there isn't too much smoke :).
Sunday, July 8, 2007
Live Big - Post Transplant Thoughts
Original Post Date: May 22, 2007
Transplant Date: May 2, 2007
Full of calm and almost at peace
Resigned to what will come
Whether or not I know who it is from
I look at my family and then to my friends
I know that this is about to end
The struggles and the constant pain
I am ready to finally breathe again
I close my eyes and fight back tears
Excitement and anticipation
I open them up and I hear the words
The lungs are good we have to go
I say I love you and take one last look
Across my lips come the phrase
See you on the flip side
I lay back and get ready for the ride
I ask God to take care of me
Give me strength and protect me from harm
My fate is resting in the hands of his workers
I wake up in black in white
I see a faded image of my mom and feel her love for me
I can feel her touching my face (though she didn't - I could feel it)
I felt the tubes
I could hear the machines
I knew that it was done
I can still see the doc standing at the end of my bed
I can feel him holding my hand and telling me to breathe
Then he said "Lift your hand - move your feet - wave your other hand"
I remember the words "I am pulling the tube you have to breathe on your own"
I looked at the clock
I thought this is it
I had to work now
I was afraid I wasn't ready
Then I found out I was
I remember the first steps
I remember the excitement, the exhaustion, the looks
The looks of excitement from my family and friends
The looks that told me I was BACK
Like I had just been ripped out of some perilous abyss
Just like that I had been clutched from the hands of death
I didn't see myself for 6 days
I wouldn't look in the mirror
I didn't want to see the IVs and the puffy cheeks and the everything
I was told I looked great but was afraid of what I would see
I asked about life outside and constantly wanted to know what day it was
I started to learn about the prayers people were saying for me
I had never known
I didn't know I mattered to so many
I got stronger each day and I could feel the love healing me from all directions
I was never alone even when I was
I could hear and see the love and was of course sharing it in my medicated state
I walked with a walker that 2nd day and then the 3rd
I walked without a walker on the 3rd and 4th
I was already faster than I had been before
I started to realize the gravity of what I was going through
My life was no longer the same
I wasn't doing CPT and stopped nebs - for the first time in my life they weren't required
Day 6 rolled around and I made my way to the bathroom with my mom's help
She sat me down and left me to myself
I sat with my head down for a moment
Took a deep breath and raised my head
There I was - no makeup, unwashed hair, semi tired
I looked amazing I could see the tears come
I was a person again
I wasn't just an empty shell of what I had been years ago
I had life in my eyes - they were no longer dull
I didn't have to struggle to give them life and sparkle it just was
My cheeks were red - not slightly pink but bright red
My lips had gone from bluish to bright and red
I looked like a real person again
I sat there wiping tears away and thanking God and my angel my donor
I thanked him for sharing his life with me and for giving me my chance
I now have the chance to live the life I so desperately want but haven't been able
I finally gathered myself and got my mom to help me back to bed
I now find I like to see myself in the mirror
I can actually see myself and not my pain
I don't see just a tired worn out ragdoll of a body
I see someone with strength enough to conquer the world
I now have the strength and the doc gave me the wings to fly
I am getting stronger everyday
Looking forward to everything that the coming days and months and years will bring
I now know that I can plan and I know my life is just beginning
Last year this coming Christmas was an uncertainty
Everyone felt it and no one said it
We all knew I was fading and fading fast
My light was dimming and flickering a bit
But it stayed burning long enough to replace the bulb
I have found myself humbled and in awe of this life and these circumstances
I have been blessed in ways that many may never know
My life was a gift from God and now I have been given that gift once again
I have a new fondness for life
My bitterness is dissipating
My fears are being alleviated
I made it through what I thought would be the hardest thing ever
I have seen parts of my inner self that I never knew existed
I have gone places spiritually I never expected
I have had revelations that I never imagined or even thought of before
My life will never be the same
I am no longer living for just me
I am living for the person that couldn't live anymore
I am going to enjoy my life and live it to the fullest for BOTH of us
It is the only way I can think to justly serve his memory
I will do everything I can to live BIG
I want to LOVE big, LAUGH big, GIVE big, HUG big, LIVE big
I just want everything to be BIG
All the things worth it should be BIG
I want to let all the things that are not worth it to fall to the wayside
I am learning what it is to breathe again
To Laugh
To Hug
To Eat
To Kiss
To Smile
To Walk
To Ride a Bike
To COUGH – or not too
I am learning to live all over again
I am learning what each feeling means and what each thing does - when it works right
I am reaching out for familiarity but loving the unfamiliar too
I am just getting started on this road
I am looking SO forward to the winding twistiness that is sure to come
After all what is life without a few detours?
It makes sightseeing so much more fun
After all the best things in life are found on the road less traveled.
Transplant Date: May 2, 2007
Full of calm and almost at peace
Resigned to what will come
Whether or not I know who it is from
I look at my family and then to my friends
I know that this is about to end
The struggles and the constant pain
I am ready to finally breathe again
I close my eyes and fight back tears
Excitement and anticipation
I open them up and I hear the words
The lungs are good we have to go
I say I love you and take one last look
Across my lips come the phrase
See you on the flip side
I lay back and get ready for the ride
I ask God to take care of me
Give me strength and protect me from harm
My fate is resting in the hands of his workers
I wake up in black in white
I see a faded image of my mom and feel her love for me
I can feel her touching my face (though she didn't - I could feel it)
I felt the tubes
I could hear the machines
I knew that it was done
I can still see the doc standing at the end of my bed
I can feel him holding my hand and telling me to breathe
Then he said "Lift your hand - move your feet - wave your other hand"
I remember the words "I am pulling the tube you have to breathe on your own"
I looked at the clock
I thought this is it
I had to work now
I was afraid I wasn't ready
Then I found out I was
I remember the first steps
I remember the excitement, the exhaustion, the looks
The looks of excitement from my family and friends
The looks that told me I was BACK
Like I had just been ripped out of some perilous abyss
Just like that I had been clutched from the hands of death
I didn't see myself for 6 days
I wouldn't look in the mirror
I didn't want to see the IVs and the puffy cheeks and the everything
I was told I looked great but was afraid of what I would see
I asked about life outside and constantly wanted to know what day it was
I started to learn about the prayers people were saying for me
I had never known
I didn't know I mattered to so many
I got stronger each day and I could feel the love healing me from all directions
I was never alone even when I was
I could hear and see the love and was of course sharing it in my medicated state
I walked with a walker that 2nd day and then the 3rd
I walked without a walker on the 3rd and 4th
I was already faster than I had been before
I started to realize the gravity of what I was going through
My life was no longer the same
I wasn't doing CPT and stopped nebs - for the first time in my life they weren't required
Day 6 rolled around and I made my way to the bathroom with my mom's help
She sat me down and left me to myself
I sat with my head down for a moment
Took a deep breath and raised my head
There I was - no makeup, unwashed hair, semi tired
I looked amazing I could see the tears come
I was a person again
I wasn't just an empty shell of what I had been years ago
I had life in my eyes - they were no longer dull
I didn't have to struggle to give them life and sparkle it just was
My cheeks were red - not slightly pink but bright red
My lips had gone from bluish to bright and red
I looked like a real person again
I sat there wiping tears away and thanking God and my angel my donor
I thanked him for sharing his life with me and for giving me my chance
I now have the chance to live the life I so desperately want but haven't been able
I finally gathered myself and got my mom to help me back to bed
I now find I like to see myself in the mirror
I can actually see myself and not my pain
I don't see just a tired worn out ragdoll of a body
I see someone with strength enough to conquer the world
I now have the strength and the doc gave me the wings to fly
I am getting stronger everyday
Looking forward to everything that the coming days and months and years will bring
I now know that I can plan and I know my life is just beginning
Last year this coming Christmas was an uncertainty
Everyone felt it and no one said it
We all knew I was fading and fading fast
My light was dimming and flickering a bit
But it stayed burning long enough to replace the bulb
I have found myself humbled and in awe of this life and these circumstances
I have been blessed in ways that many may never know
My life was a gift from God and now I have been given that gift once again
I have a new fondness for life
My bitterness is dissipating
My fears are being alleviated
I made it through what I thought would be the hardest thing ever
I have seen parts of my inner self that I never knew existed
I have gone places spiritually I never expected
I have had revelations that I never imagined or even thought of before
My life will never be the same
I am no longer living for just me
I am living for the person that couldn't live anymore
I am going to enjoy my life and live it to the fullest for BOTH of us
It is the only way I can think to justly serve his memory
I will do everything I can to live BIG
I want to LOVE big, LAUGH big, GIVE big, HUG big, LIVE big
I just want everything to be BIG
All the things worth it should be BIG
I want to let all the things that are not worth it to fall to the wayside
I am learning what it is to breathe again
To Laugh
To Hug
To Eat
To Kiss
To Smile
To Walk
To Ride a Bike
To COUGH – or not too
I am learning to live all over again
I am learning what each feeling means and what each thing does - when it works right
I am reaching out for familiarity but loving the unfamiliar too
I am just getting started on this road
I am looking SO forward to the winding twistiness that is sure to come
After all what is life without a few detours?
It makes sightseeing so much more fun
After all the best things in life are found on the road less traveled.
"Are You Ready to Be Listed?" Day Six Evaluation - Original Date February 23, 2007
"Are you ready to be listed now?"
That is one of the questions that the transplant pulmonologist asked me today. Are you ready? I just sat there - letting those words sink in - or should I say trying to let those words sink in. I have thought about it and how fast everything has happened. I never in a million years thought it happened this quick, everything is just flying by at what seems like a record pace. I am sooo glad that I waited until after Christmas to do this, if I had all of these thoughts and worries and concerns running through my head 2 month ago my Christmas would have been insane and too much to handle emotionally.
My initial reply was a grin - and then an “I am ready to be listed, but I'm not ready for the phone call.” I am not ready for that phone call to come tomorrow or even the next day. I need a few weeks to let this new way of living sink in. I told the doc things have just happened so much faster than I was ready for them to happen. I just wasn't expecting all of this so soon. I thought I would have a few weeks after testing to gather myself and get back on my feet before listing was brought up.
Last night after my right heart catheterization the pulmonologist and everyone else I have met got together and discussed my case - along with others. The only people not present were the cardiothoracic surgeon(s), which are the people that actually take the organs out and put them in. They were transplanting a patient last night for something. The doc said that I am pretty much all but listed at this point. He said that everyone agrees and thinks I would be a wonderful candidate for transplant, and they think I would do very well post transplant. I could be listed as soon as next Friday (March 2nd). If I were listed March 2nd, I would be listed as inactive since I will be gone from the 3rd to the 11th. He said to just call when I came home and they could make me active on the list.
I am just amazed at everything - I asked the question of what kind of lung function I could expect post transplant with a double lung transplant and he said most patients are restored to normal range 90-100%. I was almost giddy - I actually wanted to cry. I don't ever remember having that much lung function and the fact that it is even possible makes me so happy and excited.
I asked several other questions that I will include farther down, but I wanted to share with all of those that have kept posted on the status of my situation that it looks as though I will be listed - actively - the week after I get back from Hawaii. Just think - this time last year I tried getting a part time job thinking I could work and now I will be waiting for transplant - GUH how quickly things can change.
Day SIX - Transplant Eval
9:30am & 10:00am - TC Pulm Nurse Report Visit (RN2) & TC Pulm Report Visit:
Well on to my questions:
Can you have pets post transplant?
I was told that birds are a no go - I need to stay clear of birds because the feces being in the open air and harboring bacteria can cause infections for me.
Cats are risky as well. For the same reasons that pregnant women need to stay away from cats litter boxes transplant patients have to stay away from that as well. The bacteria could kill a transplant patient and at the very least could make them very sick. I am not to have any contact with the litter box or have the cats on my bed or in/on my clothing and such. I have to try to not let cats/dogs lick me and I have to wash my hands after touching them.
Dogs are not as risky as cats because most dogs go to the bathroom outside - but I still need to be careful with dogs and petting them and what may be on their fur.
Also fish - I can have fish but I can NOT clean their tanks or touch their food - so honestly fish are out.
I asked if there was a pet that was safe to have post transplant and I was told that dogs would probably be the safest, but there are some risks with every animal. With a dog also you need to wear a mask and gloves if you bathe them.
What gauge needle was used for the catheter in my neck for the right heart catheterization yesterday?
It actually was not a gauge, it is too big to rank on the gauge scale. **FOR THE SQUIMISH DO NOT LOOK THIS UP UNLESS YOU ARE PREPARED TO BE FREAKED A LITTLE** It was actually a Swan-Gask 8 French needle/catheter.
What would be the situation for pain management?
I have heard some people are given epidurals and some that aren't. He said that it depends. If I am able to have an epidural then I will be given one during surgery. He said that sometimes they have difficulty oxygenating patients properly and have to set up a line in the groin to bypass the lungs and draw the blood out of the body and oxygenate it using a machine. In order to use that machine they need to use heparin to keep the blood from clotting while it is outside the body. Due to the heparin there are risks with bleeding involved with doing an epidural. If they are able to keep me oxygenated upon removal of the first lung - until the first lung can be replaced - then I will be given an epidural. If they have issues and I have to go on that bypass machine then I will not be given an epidural. He said that I am at risk for needing to be on bypass because I do have some pulmonary hypertension. He said with pulmonary hypertension patients are more likely to have difficulty oxygenating throughout surgery upon the removal of the first lung.
How long does the average patient stay "out" after surgery?
He said it varies the older the patient the longer they sleep after surgery, but typically with younger patients they are awake within an hour. Average stay in ICU after surgery is 3 days; average stay in the hospital after surgery for lung transplant is 10 days. He said I would be vented for the first day and I would be sedated some what throughout that. Unless there was a problem I would be taken off the vent after the first day. The goal is to have me up and moving as quickly as possible.
Is there anything that you recommend your patients NOT do or put themselves around after transplant?
They Recommended NO SWIMMING. They said private pools are better than public pools, but any pool or public swimming area is not recommended (i.e. pond, lake, river, ocean, pool, jacuzzi). They do not want you to do anything in those bodies of water that would involve you submersing your head completely due to the risk of ingesting the water. If you were to accidentally take in water and it got into your lungs it could burn your lungs (due to chemicals) or it could cause an infection. You can sit by the pool or lay/walk around in the pool - BUT DO NOT submerse your head. Also you have to wear sunscreen because with the post transplant medications you are more likely to develop skin cancer.
Other than that I asked a few questions about how the listing process worked and everything - stuff that varies per region really. Oh and one thing I found interesting is that typically they only get lung from 4 hours away at the most. A lung has a life of about 4 hours outside of a body - it has gone longer but 4 hours is the goal they try not to pass that marker.
That is one of the questions that the transplant pulmonologist asked me today. Are you ready? I just sat there - letting those words sink in - or should I say trying to let those words sink in. I have thought about it and how fast everything has happened. I never in a million years thought it happened this quick, everything is just flying by at what seems like a record pace. I am sooo glad that I waited until after Christmas to do this, if I had all of these thoughts and worries and concerns running through my head 2 month ago my Christmas would have been insane and too much to handle emotionally.
My initial reply was a grin - and then an “I am ready to be listed, but I'm not ready for the phone call.” I am not ready for that phone call to come tomorrow or even the next day. I need a few weeks to let this new way of living sink in. I told the doc things have just happened so much faster than I was ready for them to happen. I just wasn't expecting all of this so soon. I thought I would have a few weeks after testing to gather myself and get back on my feet before listing was brought up.
Last night after my right heart catheterization the pulmonologist and everyone else I have met got together and discussed my case - along with others. The only people not present were the cardiothoracic surgeon(s), which are the people that actually take the organs out and put them in. They were transplanting a patient last night for something. The doc said that I am pretty much all but listed at this point. He said that everyone agrees and thinks I would be a wonderful candidate for transplant, and they think I would do very well post transplant. I could be listed as soon as next Friday (March 2nd). If I were listed March 2nd, I would be listed as inactive since I will be gone from the 3rd to the 11th. He said to just call when I came home and they could make me active on the list.
I am just amazed at everything - I asked the question of what kind of lung function I could expect post transplant with a double lung transplant and he said most patients are restored to normal range 90-100%. I was almost giddy - I actually wanted to cry. I don't ever remember having that much lung function and the fact that it is even possible makes me so happy and excited.
I asked several other questions that I will include farther down, but I wanted to share with all of those that have kept posted on the status of my situation that it looks as though I will be listed - actively - the week after I get back from Hawaii. Just think - this time last year I tried getting a part time job thinking I could work and now I will be waiting for transplant - GUH how quickly things can change.
Day SIX - Transplant Eval
9:30am & 10:00am - TC Pulm Nurse Report Visit (RN2) & TC Pulm Report Visit:
Well on to my questions:
Can you have pets post transplant?
I was told that birds are a no go - I need to stay clear of birds because the feces being in the open air and harboring bacteria can cause infections for me.
Cats are risky as well. For the same reasons that pregnant women need to stay away from cats litter boxes transplant patients have to stay away from that as well. The bacteria could kill a transplant patient and at the very least could make them very sick. I am not to have any contact with the litter box or have the cats on my bed or in/on my clothing and such. I have to try to not let cats/dogs lick me and I have to wash my hands after touching them.
Dogs are not as risky as cats because most dogs go to the bathroom outside - but I still need to be careful with dogs and petting them and what may be on their fur.
Also fish - I can have fish but I can NOT clean their tanks or touch their food - so honestly fish are out.
I asked if there was a pet that was safe to have post transplant and I was told that dogs would probably be the safest, but there are some risks with every animal. With a dog also you need to wear a mask and gloves if you bathe them.
What gauge needle was used for the catheter in my neck for the right heart catheterization yesterday?
It actually was not a gauge, it is too big to rank on the gauge scale. **FOR THE SQUIMISH DO NOT LOOK THIS UP UNLESS YOU ARE PREPARED TO BE FREAKED A LITTLE** It was actually a Swan-Gask 8 French needle/catheter.
What would be the situation for pain management?
I have heard some people are given epidurals and some that aren't. He said that it depends. If I am able to have an epidural then I will be given one during surgery. He said that sometimes they have difficulty oxygenating patients properly and have to set up a line in the groin to bypass the lungs and draw the blood out of the body and oxygenate it using a machine. In order to use that machine they need to use heparin to keep the blood from clotting while it is outside the body. Due to the heparin there are risks with bleeding involved with doing an epidural. If they are able to keep me oxygenated upon removal of the first lung - until the first lung can be replaced - then I will be given an epidural. If they have issues and I have to go on that bypass machine then I will not be given an epidural. He said that I am at risk for needing to be on bypass because I do have some pulmonary hypertension. He said with pulmonary hypertension patients are more likely to have difficulty oxygenating throughout surgery upon the removal of the first lung.
How long does the average patient stay "out" after surgery?
He said it varies the older the patient the longer they sleep after surgery, but typically with younger patients they are awake within an hour. Average stay in ICU after surgery is 3 days; average stay in the hospital after surgery for lung transplant is 10 days. He said I would be vented for the first day and I would be sedated some what throughout that. Unless there was a problem I would be taken off the vent after the first day. The goal is to have me up and moving as quickly as possible.
Is there anything that you recommend your patients NOT do or put themselves around after transplant?
They Recommended NO SWIMMING. They said private pools are better than public pools, but any pool or public swimming area is not recommended (i.e. pond, lake, river, ocean, pool, jacuzzi). They do not want you to do anything in those bodies of water that would involve you submersing your head completely due to the risk of ingesting the water. If you were to accidentally take in water and it got into your lungs it could burn your lungs (due to chemicals) or it could cause an infection. You can sit by the pool or lay/walk around in the pool - BUT DO NOT submerse your head. Also you have to wear sunscreen because with the post transplant medications you are more likely to develop skin cancer.
Other than that I asked a few questions about how the listing process worked and everything - stuff that varies per region really. Oh and one thing I found interesting is that typically they only get lung from 4 hours away at the most. A lung has a life of about 4 hours outside of a body - it has gone longer but 4 hours is the goal they try not to pass that marker.
Day Five Evaluation - Original Date February 22, 2007
This was pretty much the last day of testing for me. I still have a few more appointments but all of the actual testing ended today. I must say they saved the "best" for last.
7:00am Pre-Admissions Appointment:
This was just to get me checked in and registered in the hospital's system for the procedure.
8:00am - TC (Transplant Center) Pulmonary Medicine Exercise Swan VO2 Study:
They got me in the room and my parents were able to WAIT with me. The nurse came in and started getting everything set up. They ended up using my port for this test as they were in need of an IV for sedation. My parents stayed with me until the nurse had gathered everything she needed and was ready to access the port. When she said she was ready to access the port my parents left and went to the waiting room.
The set up involves not only the IV, but also placing a pulseoximeter (device to measure a person’s oxygen saturation) on your finger, getting the heart monitor set up for the nurses and another one for the respiratory techs, and a blood pressure cuff placed on your arm.
It was actually one of the doctors on the transplant team that did the procedure. It was nice to meet one of them - other than the doctor I saw on my first visit this is the only transplant doctor I have met. He asked me general questions - like if anything in my health had changed since I saw the doc for the first time in Dec. I said yes I am on O2 now and he just nodded and patted me on the shoulder and said - it is good you are here to do this now since you have started on the O2, and we will take care of you.
He explained the procedure pretty well. They started start by giving a small dose of versed to help with the anxiety and nervousness of the whole thing. Then they numbed my neck with lidocaine and took and inserted a line in a vein in my neck just above my clavicle. Once they gained access in my neck they feed a line through the vein, through the heart and into the Pulmonary Artery. He said the line has a small balloon type thing on the end of it that can measure the pressures within the pulmonary artery once it is properly placed.
Also to Note: As the line is being fed through you can get a fluttering in your heart it is relatively easily dealt with - the line is simply advanced through the heart and the fluttering will stop.
Then once the line is placed in the neck the Swan is attached and the site is covered with tegaderm or some type of dressing cover. From there they moved to my wrist – again numbing with lidocaine - to start an arterial line. They end up taking several blood gases throughout the testing and rather than stick you repeatedly they just get an arterial line so they can continue using it throughout the test.
They take several measurements while you are at rest, flat on your back. For this portion of the test I was on 5 liters of Oxygen. I am not really sure why my oxygen saturation was so low, but they were at 91-92% on 3-4 liters at the beginning of the test. By the end of the test they were up to 97% on 2 liters - go figure.
Once they get all of the measurements they need from you laying flat they will sit you up. You sit up straight for several minutes, and they take the same measurements they took while you were laying flat while you are sitting up straight.
After sitting up straight for several minutes I was helped up out of the chair to a standing position and placed onto a stationary bike. I had to ride the stationary bike for a time to be determined by them. They have you place a mouth piece in your mouth, and they remove your nasal cannula (if you are on Oxygen). You then begin getting O2 through the mouth piece. They have you use the mouth piece so that they can measure the way that you absorb gases while you exercise. They then start you off riding the bike. They tell you to go faster and faster until you are at the pace they want you to be at and then you have to maintain that speed until they tell you to stop basically.You have to signal if you think you will need to stop soon, you can not just stop - if you just stop they have to start the bike portion of the test all over again. I signaled and they started taking their measurements but they would not let me stop. They told me to keep going and keep going because my saturation was doing well and my other readings were apparently stable at the time. At that point I told them that my legs were hurting and that is why I wanted to stop. They kept me going until I was shaking - then I heard the doctor say get what you need she is done. Then they took their measurements all over again and I was able to slow down. This test was pretty much as hard as I expected.
They took about 4-5 blood gases throughout the testing. They also read other things - blood pressure, pressure within the pulmonary artery, respirations, O2 saturation, and some others. I was told that I had some pulmonary hypertension - which would go away with transplant. Otherwise I think everything else was normal with my heart.
This test is done to show the docs whether or not my lung problems are caused by heart problems or if there are heart problems caused by my lung problems. It can give them an idea of what meds I need to take before, during or after transplant. He said that if I had heart irregularities I may need to take meds now or after transplant for that - or there may be certain meds they need on hand to help me through surgery when I am actually getting transplanted.
Once all of the testing was done and the doc gave the okay - the nurse pulled the line from my neck. For this the worst part is really the pressure on the insert site because it is tender. She also had me take a deep breath and hold it as she removed the actual catheter because she said there is a risk of pulmonary embolism if you breathe while the catheter is being removed.The arterial line was also tender on removal - it was not a sharp piercing pain so much as a prolonged throbbing nagging pain. Initially my hand was numb into my thumb, pointer and middle fingers.
They said that the reason I do not have to have a left heart catheterization is due to my age. With the left heart catheterization you remain laying the entire time and the catheter is placed in your groin. If I was older and heart disease was more of a concern then they would most likely have ordered a left heart catheterization as well.
Sorry if I scared any of you with the write up of this test - but I didn't want to lie - it was hard - it was NOT horrendous. I CAN imagine worse things, but it is not an easy test to get through that is for sure.
7:00am Pre-Admissions Appointment:
This was just to get me checked in and registered in the hospital's system for the procedure.
8:00am - TC (Transplant Center) Pulmonary Medicine Exercise Swan VO2 Study:
They got me in the room and my parents were able to WAIT with me. The nurse came in and started getting everything set up. They ended up using my port for this test as they were in need of an IV for sedation. My parents stayed with me until the nurse had gathered everything she needed and was ready to access the port. When she said she was ready to access the port my parents left and went to the waiting room.
The set up involves not only the IV, but also placing a pulseoximeter (device to measure a person’s oxygen saturation) on your finger, getting the heart monitor set up for the nurses and another one for the respiratory techs, and a blood pressure cuff placed on your arm.
It was actually one of the doctors on the transplant team that did the procedure. It was nice to meet one of them - other than the doctor I saw on my first visit this is the only transplant doctor I have met. He asked me general questions - like if anything in my health had changed since I saw the doc for the first time in Dec. I said yes I am on O2 now and he just nodded and patted me on the shoulder and said - it is good you are here to do this now since you have started on the O2, and we will take care of you.
He explained the procedure pretty well. They started start by giving a small dose of versed to help with the anxiety and nervousness of the whole thing. Then they numbed my neck with lidocaine and took and inserted a line in a vein in my neck just above my clavicle. Once they gained access in my neck they feed a line through the vein, through the heart and into the Pulmonary Artery. He said the line has a small balloon type thing on the end of it that can measure the pressures within the pulmonary artery once it is properly placed.
Also to Note: As the line is being fed through you can get a fluttering in your heart it is relatively easily dealt with - the line is simply advanced through the heart and the fluttering will stop.
Then once the line is placed in the neck the Swan is attached and the site is covered with tegaderm or some type of dressing cover. From there they moved to my wrist – again numbing with lidocaine - to start an arterial line. They end up taking several blood gases throughout the testing and rather than stick you repeatedly they just get an arterial line so they can continue using it throughout the test.
They take several measurements while you are at rest, flat on your back. For this portion of the test I was on 5 liters of Oxygen. I am not really sure why my oxygen saturation was so low, but they were at 91-92% on 3-4 liters at the beginning of the test. By the end of the test they were up to 97% on 2 liters - go figure.
Once they get all of the measurements they need from you laying flat they will sit you up. You sit up straight for several minutes, and they take the same measurements they took while you were laying flat while you are sitting up straight.
After sitting up straight for several minutes I was helped up out of the chair to a standing position and placed onto a stationary bike. I had to ride the stationary bike for a time to be determined by them. They have you place a mouth piece in your mouth, and they remove your nasal cannula (if you are on Oxygen). You then begin getting O2 through the mouth piece. They have you use the mouth piece so that they can measure the way that you absorb gases while you exercise. They then start you off riding the bike. They tell you to go faster and faster until you are at the pace they want you to be at and then you have to maintain that speed until they tell you to stop basically.You have to signal if you think you will need to stop soon, you can not just stop - if you just stop they have to start the bike portion of the test all over again. I signaled and they started taking their measurements but they would not let me stop. They told me to keep going and keep going because my saturation was doing well and my other readings were apparently stable at the time. At that point I told them that my legs were hurting and that is why I wanted to stop. They kept me going until I was shaking - then I heard the doctor say get what you need she is done. Then they took their measurements all over again and I was able to slow down. This test was pretty much as hard as I expected.
They took about 4-5 blood gases throughout the testing. They also read other things - blood pressure, pressure within the pulmonary artery, respirations, O2 saturation, and some others. I was told that I had some pulmonary hypertension - which would go away with transplant. Otherwise I think everything else was normal with my heart.
This test is done to show the docs whether or not my lung problems are caused by heart problems or if there are heart problems caused by my lung problems. It can give them an idea of what meds I need to take before, during or after transplant. He said that if I had heart irregularities I may need to take meds now or after transplant for that - or there may be certain meds they need on hand to help me through surgery when I am actually getting transplanted.
Once all of the testing was done and the doc gave the okay - the nurse pulled the line from my neck. For this the worst part is really the pressure on the insert site because it is tender. She also had me take a deep breath and hold it as she removed the actual catheter because she said there is a risk of pulmonary embolism if you breathe while the catheter is being removed.The arterial line was also tender on removal - it was not a sharp piercing pain so much as a prolonged throbbing nagging pain. Initially my hand was numb into my thumb, pointer and middle fingers.
They said that the reason I do not have to have a left heart catheterization is due to my age. With the left heart catheterization you remain laying the entire time and the catheter is placed in your groin. If I was older and heart disease was more of a concern then they would most likely have ordered a left heart catheterization as well.
Sorry if I scared any of you with the write up of this test - but I didn't want to lie - it was hard - it was NOT horrendous. I CAN imagine worse things, but it is not an easy test to get through that is for sure.
Sunday, June 24, 2007
Day Four Evaluation - Original Date Feb 21, 2007
I actually got to sleep about 15 minutes later than I had last week, so I got up and moving at about 6:15am. I ended up leaving the house at around 8:20am.
9:30am - Infectious Disease Consultation TC (
This appointment was pretty simple though I wasn't really sure what all would be involved with this meeting. I thought it was going to be geared more towards my culturing MRSA (Methicillin Resistant Staphlococcus Aereus), but it was not.
The doctor came in and talked to me a little about whether or not I had been exposed to TB - which according to my test results from last week the answer to that is NO. Then he asked how often I am admitted, he asked what bacteria I culture and about drug allergies and such. He also told me that from his perspective I would be a GOOD candidate for transplant because I HAVE been exposed to all of the viruses that they WANT me exposed to - meaning I have all of the antibodies for those things - and I have NOT been exposed to the things they do NOT want me exposed too. The things that they want me to have been exposed to are EBV - Epstein Barr Virus, CMV - Cytomegalovirus and Chicken Pox. He said that those viruses can be potentially deadly in a person post transplant if they have NEVER been exposed to them before. He really emphasized that with Chicken Pox. He said there was a vaccine that could be given for chicken pox now, but if there had been NO exposure to chicken pox pre-transplant and a person were to catch it they could find themselves in a desperate situation.
At this appointment I asked him the following:
Is it possible for me to get a MRSA infection in other parts of my body when I am transplanted - with my lungs being removed and the bacteria being exposed to other areas of my body?
Yes - He said that in any situation where a person cultures bacteria and the bacteria has the opportunity to be in contact with other areas of the body it is POSSIBLE. He also said that it is unlikely, but still it is possible. They closely monitor all patients post transplant in the event that did happen. There are ways to treat such things - though he did say that in a small - very small - percentage of cases sepsis can occur if the infection is not identified.
I asked them what drugs/antibiotics they would treat me with post transplant because at the very least I would be taking something initially.
His response is that since I am able to take Cipro they would most likely prescribe Cipro and some other drugs within the same family.
He also said that often times with Cystic Fibrosis patients they have problems post transplant with their sinuses re-infecting their lungs. He said that is something that we would need to closely monitor. He said in many instances it can be controlled but because in most cases the bacteria in our lungs is also in our sinuses as well we will need to be careful. He also said that in that instance it may require antibiotics, but the problems that we have with ongoing lung infections now - with CF diseased lungs - would not be as much of an issue and the infection could be handled and treated much easier than it is now.
11:00am - Psychiatry Consultation:
This appointment was simple too. We got there at about 11:25am. I had to fill out a form that asked a bunch of questions. Then once I completed that they called me back.
I talked to the psychiatrist for about an hour or so. She was great. She was easy to talk to and just asked about my interests, school, if I worked - where I had worked, my personal life. She asked how I felt about transplant, if I was ever diagnosed with depression, if I had anxiety, if I had ever taken any medication for either.
1:40pm - Radiology Mammogram:
I was dreading this appointment and turns out I dreaded it for no reason. I went through the motions, but when it came time for the actual test the tech said I was too young to need this done. They talked to the radiologist and then sent me on my merry way without having the test done.
Day Three Evaluation - Original Date Feb 16th, 2007
I had to get up at 5am again Friday morning. We had to leave the house at about 7am to make it across town to my first appointment at 8am.
8:00am - Allergy Anergy/PPD w/Control Skin Test Reading:
This was a brief appointment that was simply meant to read the results of my PPD test from Wednesday. Remember the test I mentioned that tested to see if I had been exposed to TB. I have NOT been exposed to TB and YES my immune system responded.
11:00am - Heart and Lung Financial Advisor:
This was pretty simple we met with a financial advisor to discuss my insurance situation and fundraising. This lasted about 30 minutes and we were done.
11:30am - Lab Non-Fasting Blood Visit:
This was simple. They drew ONE vial of blood. I asked what the blood draw was for and was told that it was for some form of typing.
1:00pm - Radiology Nuclear Medicine V/Q Injection + Scan (Ventilation/Perfusion Injection + Scan):
I thought this test would be one of the hardest tests I had to go through and it was relatively simple to be honest. This test is to measure the way that air flows through your lungs and also the way that blood flows through your lungs. They are hoping to determine if one of your lungs is more damaged than the other and which one it is.
Procedure wise they had me lay on my back - they gave me pillows to elevate my head a bit so I could breathe a little easier. Then they center cameras above and below your chest to take pictures. There are NO xrays - the cameras they use are specially made to only identify the radioactive materials so xrays are not needed. Once you are lying on your back and they have the cameras ready they give you a mask. You have to put the mask over your mouth and nose. They have you take a few breathes and then they inject Xenon into the mask and you have to inhale it and hold your breathe a little and do that again. The Xenon did not taste or smell or make me feel any different than usual. I laid there with the mask over my mouth and nose for about probably 7 or 8 minutes maybe 10 I cannot recall. All the while they were taking pictures of the way the gas was taken into my lungs and how it was dispersed out of my lungs. The way the pictures looked it showed up as reddish on the camera - reddish where the gas was and darker to black where the gas was NOT. After the gas portion of the test I was able to take the mask off. Then the tech rearranged the cameras for the next test.
The next part of the test was the injection portion. They injected a protein combination of sorts into your blood stream. This also showed up only on the cameras that they were using. It showed the way that blood flowed through the lungs. She had to take 4 sets of pictures for this portion of the test. One portion was front and back pictures, then right front and left back, left side and right side AND left front and right back. It showed all of the lobes from different angles. This was the same premise as the first set of pictures the brighter areas (which in this scan appeared to be bright WHITE) were where the blood was flowing and the dark areas were the more damaged parts.
2:00pm Gynocology Consultation (Medical):
Just a basic gynecology appointment. Nothing spectacular and I get the results in a few weeks.
Day Two Evaluation: Original Date Feb15th, 2007
Thursday started earlier than Wednesday for me. I rolled out of bed at about 5am and got cleaned up. After treatments and getting ready we left the house at about 7am.
We rolled into the hospital - which was a different facility than the place we went on Wednesday - at about 7:40am.
8:20am Radiology Bone Mineral Analysis (aka - Bone Density Scan):
They said that you could not take ANY Vitamins and/or Calcium Supplements the day of the test. To eat a LIGHT breakfast, but to refrain from ANY food containing calcium, milk, cheese. Also they recommended that you wear clothes that were comfortable with no metal zippers, buttons or snaps.
As for the test itself, they had me lay flat on my back with a pillow under my head. Then they put a big square pillow beneath my knees and legs to lift them up. They did a scan of my spine - in my midsection. Then they had me roll onto my left side and slide with my back all the way up against this metal slide thing. They took a scan of my spine in that position as well. From there they had me lie on my back again and put my legs in a few different positions and scanned my hips.
I asked about what the pictures were supposed to look like because I was curious. She said the black areas were tissue - the really white areas are where the bone is dense and the gray areas are where the bone is less dense.
According to my test results - My spine is normal but I am slightly into the Osteopenia range in my hips.
10:30am -
This was a CT scan of my lungs. They did NOT use contrast of any kind. Typical CT Chest Scan. They lay you flat on your back arms up and they have you breathe normal then on occasion a voice prompts you to take a deep breath in and hold it. You hold your breathe for roughly 10 seconds each time you do it. If you are unable to hold your breath for 10 seconds they will adjust the timer for you. That test lasted about 10-15 minutes in total.
1:00pm Cardiology Echocardiogram w/Contrast:
The test was really not bad the more unpleasant thing was the fact that the room was bitter cold and you are lying with a dinky gown covering you. The point of this test was to show them whether or not I have a hole in my heart.
She took several pictures of my heart using a device similar to what they would use for an ultrasound. She ended up having me lie in about 4 different positions to get images of my heart. It was also interesting to see that when I would breathe in you could barely make out where my heart was, but as I was breathing out it became more clear. So the lung wasn't in the way when I wasn't inhaling I guess. After that I had to lay flat on my back and she rubbed around the base of my sternum and my throat - right between each clavicle. When she was around my clavicle she turned on an audio feed and you could hear my heart beat.
The contrast part of this was Saline and Sterile water combination. They had to start an IV - with a 20 gauge needle. They injected the contrast twice to make sure they got what they needed. The tests showed I did NOT have a hole in my heart but they did show that I had some type of pulmonary filtration or something similar to that - I can't remember what she called it. She said that it is not normal - but is probably typical for my diagnosis with the CF and needing transplant.
2:00pm - Pulmonary Med ABG O2
Arterial Blood Gas – for those that don’t know – involves getting a blood sample from an artery NOT a vein. Due to the nature of arteries and the fact that they are surrounded by nerve endings this test has the potential to be very painful. Overall the experience was not bad though. The lady that tried initially stuck my twice but was unable to get a sample because the artery was shifting on her. Even though she stuck me twice it was not bad. It was uncomfortable but not overly painful. At the first hint of sharp pain she removed the needle each time. She ultimately got her boss to come in and get the sample. He also had to stick me twice, but he did the same as the original nurse. If there was any indication of pain he removed the needle or readjusted it so it did not hurt. He got all the blood he needed the 4th time around. The strangest thing with that blood test to me was that I could feel the blood going every time my heart would beat. It was somewhat bizarre.
The test results for that were as follows. O2 levels
I met another transplant patient this day as well. The man was telling me about the blood gas and who he liked doing his - he had a single lung transplant 4 yrs ago. They were from
Wednesday, June 13, 2007
Day One Evaluation - Original Date Feb 14th, 2007
For all of those in the "curious about transplant" category or for those that just want to know how the past few days have been for me --- here it goes.
9:30am & 9:40am - Fasting Blood Work and Lab Container Visit:
Fasting blood work equated to probably about 12 vials of blood - maybe more. Lab Container visit just involved any type of specimen you can think to give to test for any and every problem that you might have.
9:50am - Radiology Chest X-Ray:
A Chest X-Ray same old same old - chest against the board and turn with your left side against the board and your arms up.
10:30am - Cardiology Electrocardiogram:
This took about 15 minutes max. Just involved a few adhesive patches on my chest and stomach (which was slightly uncomfortable – the adhesive meaning) other than that we are talking pretty painless and very fast.
11:00am & 12:00pm - Pulmonary Med Complete PFT & Pulmonary Med Six Minute Walk:
They took me right on time for this test and it took about an hour. I had to take my O2 off - and STAY OFF for the length of the testing. They were monitoring my O2 levels the length of the testing. My O2 Saturation actually never dropped below 92 (which is an improvement from before IV treatment when they were at 89). I had to do the typical breathe normal breathe normal - DEEP BREATHE and BLOW and keep blowing for at least 6 seconds. Then I had to do a test where I panted rapidly (outside of the box) for about 12 seconds. Then they shut me in the box - I did that test once - since I get claustrophobic she said I could stop since the results were consistent with the other tests.
After that I had to do the test that measures the amount of gases you absorb or retain - that was the reason I had to stay off the O2 the length of the test. You have to breathe normal, take a deep breath (at your own pace) breathe all the way out slowly and hold it. Then she hit a button and released the gases you take a deep breath in and hold it and then blow out all the way. That test for me ended up being about half of what was normal - I think she said normal was about 22 and my reading was about 11. Then I got 2 puffs of Albuterol and redid the first 2 tests.
At the end of the breathing tests I did a six minute walk with the O2. The Respiratory Therapist followed behind me with the pulsoximeter - that was attached to my finger to measure my oxygen saturation level - and a tool to measure the distance that I walked.
1:00pm - TC Cardiology HL Diet Consult (TC =Transplant Center HL=Heart and Lung):
This was relatively simple. We talked about my diet and how I may need to modify it to add more protein before transplant and less sodium after transplant. The protein would help me gain weight and I would need to lower my sodium intake because of the meds post transplant.
2:00pm & 2:30pm – Pre-Admissions Appointment & Allergy Anergy/PPD w/Control Skin Test:
This is a test to see if you have been exposed to TB. They inject two allergens(Yeast and Tetanus) that most people react to on one arm and they inject the TB testing portion on the opposite arm. If you do NOT react to either of the controls – the yeast and tetanus – then the test is deemed inconclusive because your immune system is not functioning properly otherwisee you would have a reaction to at least one of the controls. Due to that the results of the TB test are not known for certain because you did not show a reaction. I hope that makes sense. So you want to react to the yeast, tetanus or both. Doing that shows your immune system is responding the way it should, and in that case if there is NO response to the TB then you are truly negative for TB or exposure to TB.
3:00pm Heart Lung Social Worker Evaluation:
This was somewhat involved and took about 2.5 hours to complete. We talked in a group first – the social worker, myself, my mom and dad. We talked about who would be my caregiver, the issue of insurance, some about fund raising and a little family history. The social worker also got my parents work and home information. Then my parents left and I talked to the social worker alone for a while. We talked about my history, school, college, jobs, hobbies, interests, and she asked the worst thing to ever happen to me and the best thing to ever happen to me. She asked about my spirituality and religious beliefs. I also asked her a few questions about this process and how long it takes for them to decide if I am “listable” after I finish the evaluation. She said once all of my tests are complete that I could know something within a week or two, BUT all of the tests have to be complete.
Well in other news about the FIRST Day – We met so many wonderful people that had also gone through transplant at the center. We met a woman who had a single lung transplant last June and was there for her monthly appointment. She was roughly 50-60 years old. She told me a bit about her experience at the center and said nothing but wonderful things about the center as well.
Then I met a man whose wife had a single lung transplant about 4 years ago. She is still doing wonderfully – though she was not at the hospital when I met him. He said that he helps in heading up the transplant support group and gave me some information about that. He also talked for a long time to me about the different CF patients he had met through the center and how they had done after transplant – he said every CF patient that came through the center did extremely well.
I met a woman who had been waiting for 8 months now for lungs, considering she has been waiting for 8 months she looked great. They have her going to therapy at the hospital three days a week and it helps keep her in shape for when she does have transplant.
Overall the first day was long but enjoyable – woke up at 6:30am and arrived home at the end of the day at 6:45pm.
9:30am & 9:40am - Fasting Blood Work and Lab Container Visit:
Fasting blood work equated to probably about 12 vials of blood - maybe more. Lab Container visit just involved any type of specimen you can think to give to test for any and every problem that you might have.
9:50am - Radiology Chest X-Ray:
A Chest X-Ray same old same old - chest against the board and turn with your left side against the board and your arms up.
10:30am - Cardiology Electrocardiogram:
This took about 15 minutes max. Just involved a few adhesive patches on my chest and stomach (which was slightly uncomfortable – the adhesive meaning) other than that we are talking pretty painless and very fast.
11:00am & 12:00pm - Pulmonary Med Complete PFT & Pulmonary Med Six Minute Walk:
They took me right on time for this test and it took about an hour. I had to take my O2 off - and STAY OFF for the length of the testing. They were monitoring my O2 levels the length of the testing. My O2 Saturation actually never dropped below 92 (which is an improvement from before IV treatment when they were at 89). I had to do the typical breathe normal breathe normal - DEEP BREATHE and BLOW and keep blowing for at least 6 seconds. Then I had to do a test where I panted rapidly (outside of the box) for about 12 seconds. Then they shut me in the box - I did that test once - since I get claustrophobic she said I could stop since the results were consistent with the other tests.
After that I had to do the test that measures the amount of gases you absorb or retain - that was the reason I had to stay off the O2 the length of the test. You have to breathe normal, take a deep breath (at your own pace) breathe all the way out slowly and hold it. Then she hit a button and released the gases you take a deep breath in and hold it and then blow out all the way. That test for me ended up being about half of what was normal - I think she said normal was about 22 and my reading was about 11. Then I got 2 puffs of Albuterol and redid the first 2 tests.
At the end of the breathing tests I did a six minute walk with the O2. The Respiratory Therapist followed behind me with the pulsoximeter - that was attached to my finger to measure my oxygen saturation level - and a tool to measure the distance that I walked.
1:00pm - TC Cardiology HL Diet Consult (TC =Transplant Center HL=Heart and Lung):
This was relatively simple. We talked about my diet and how I may need to modify it to add more protein before transplant and less sodium after transplant. The protein would help me gain weight and I would need to lower my sodium intake because of the meds post transplant.
2:00pm & 2:30pm – Pre-Admissions Appointment & Allergy Anergy/PPD w/Control Skin Test:
This is a test to see if you have been exposed to TB. They inject two allergens(Yeast and Tetanus) that most people react to on one arm and they inject the TB testing portion on the opposite arm. If you do NOT react to either of the controls – the yeast and tetanus – then the test is deemed inconclusive because your immune system is not functioning properly otherwisee you would have a reaction to at least one of the controls. Due to that the results of the TB test are not known for certain because you did not show a reaction. I hope that makes sense. So you want to react to the yeast, tetanus or both. Doing that shows your immune system is responding the way it should, and in that case if there is NO response to the TB then you are truly negative for TB or exposure to TB.
3:00pm Heart Lung Social Worker Evaluation:
This was somewhat involved and took about 2.5 hours to complete. We talked in a group first – the social worker, myself, my mom and dad. We talked about who would be my caregiver, the issue of insurance, some about fund raising and a little family history. The social worker also got my parents work and home information. Then my parents left and I talked to the social worker alone for a while. We talked about my history, school, college, jobs, hobbies, interests, and she asked the worst thing to ever happen to me and the best thing to ever happen to me. She asked about my spirituality and religious beliefs. I also asked her a few questions about this process and how long it takes for them to decide if I am “listable” after I finish the evaluation. She said once all of my tests are complete that I could know something within a week or two, BUT all of the tests have to be complete.
Well in other news about the FIRST Day – We met so many wonderful people that had also gone through transplant at the center. We met a woman who had a single lung transplant last June and was there for her monthly appointment. She was roughly 50-60 years old. She told me a bit about her experience at the center and said nothing but wonderful things about the center as well.
Then I met a man whose wife had a single lung transplant about 4 years ago. She is still doing wonderfully – though she was not at the hospital when I met him. He said that he helps in heading up the transplant support group and gave me some information about that. He also talked for a long time to me about the different CF patients he had met through the center and how they had done after transplant – he said every CF patient that came through the center did extremely well.
I met a woman who had been waiting for 8 months now for lungs, considering she has been waiting for 8 months she looked great. They have her going to therapy at the hospital three days a week and it helps keep her in shape for when she does have transplant.
Overall the first day was long but enjoyable – woke up at 6:30am and arrived home at the end of the day at 6:45pm.
Welcome ~
Hello - Welcome to any and all that have come to read about me and my experience.
This blog is to journal my progress and my experience with my Double Lung Transplant. Some of the posts will be back dated as they are journal entries I made prior to transplant and during my testing and evaluation to see if I qualified for transplant. The majority of the posts will be updates about my life post transplant and my recovery.
I hope you enjoy and if you have any questions feel free to post and ask I will do my best to reply to them.
Please remember that this is simply MY experience. None of the information in my blog should be used in place of the advice or opinions of a medical professional. I am simply telling of my personal journey with transplant.
Thank You and Have a Wonderful Day!
Lindsey
This blog is to journal my progress and my experience with my Double Lung Transplant. Some of the posts will be back dated as they are journal entries I made prior to transplant and during my testing and evaluation to see if I qualified for transplant. The majority of the posts will be updates about my life post transplant and my recovery.
I hope you enjoy and if you have any questions feel free to post and ask I will do my best to reply to them.
Please remember that this is simply MY experience. None of the information in my blog should be used in place of the advice or opinions of a medical professional. I am simply telling of my personal journey with transplant.
Thank You and Have a Wonderful Day!
Lindsey
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