It's been a while, I know. Sorry. It has been a hectic few months.
My pancreatic surgery is scheduled for July 28th. So that means July 7th I will go inpatient to start IV antibiotics to get my lungs in tip top shape. The surgeon told me I will be in 7-10 days after surgery, possibly longer, depending on how I heal. It could be 7 days or it could be 40. No one knows. But the first few days out of surgery I won't even be awake or aware, which I like...means I won't feel pain yet lol.
As far as specifics go: they will remove my gall bladder, bile duct, part of my intestinal tract, and the head of my pancreas. More of the pancreas if the pathologist in the room determines I need more removed. He said I will most likely need insulin when I am done, and I will definitely need pancreatic enzymes (got that covered already!!!). My whole mid section will be entirely rearranged. They will be quite surprised when they go in there to begin with and see I am all moved around already. HA! Have fun docs! (they know about my hysterectomy no worries). I'm not too thrilled about the scar that will be across my stomach from this, but I am hoping it won't be too large. Not like I wear skimpy bikinis anyway, but I am still not looking forward to that.
I'm extremely nervous and hoping that my immune system allows me to heal quickly and that I don't get any infections. I am worried about that part more than the surgery and coming off the vent. I have faith my lungs will pull me through it. One thing I am going to try, which I remember from my hysterectomy, is to put on as much weight as I can before surgery so that the CO2 they pump me full of during surgery can be reabsorbed into all my fat. I remember the awful pain I had in my upper right shoulder from it last time. Maybe the more fat I have, the less it will hurt. *fingers crossed*
In other news:
May 15th I GRADUATED!!! Finally, 16 years after graduating from high school I finally have my Master of Arts degree!!! So exciting. It feels fabulous to be done and I have already started a to-do list for myself of things I want and need to do to fill my now empty time slots. I'm afraid to get too lazy because then I will do nothing but sleep, and I need to keep busy to keep healthy.
Speaking of which, I have been going to the gym once a week to do strength training on my own. Tried for twice a week but I was so busy that it wasn't working out. Now that things have calmed down for the next month or so I am shooting for twice a week. As my transplant nurse said, I am in training for surgery. Pretend that this surgery is something I need to train for and prepare. So that is my goal. Minus the whole CF thing, I am in fairly good shape. I can't run, but its hard with 37% lung function lol. But I can exercise like a champ and lift weights, and I have stamina for cleaning etc. Now if these stupid lungs would work I would be set!!!
Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts
Saturday, May 24, 2014
Wednesday, February 12, 2014
Evaluation Date Set
I was surprised when transplant clinic called me the other day to set up my appointments...for February 19th. Holy soon batman! Its going to be a very long day with not much time to rest. But I will sleep good on Thursday...no wait I can't because I have to pick the SD up from the airport. Great. Maybe the flight will be delayed in like it was delayed out.
Anyway...I meet with everyone but the doctors. First appointment is at 9am and the last is at 4pm with a double CT scan of my lungs and sinuses.
After all those tests and meetings are done I only need to get a TB test done and bone density scan and I will be completely up to date on my testing. That reminds me, I need to call my PCP and set up the TB test appointments.
I assume on May 2nd when I have my clinic appointment they will go over everything with me, and let me know the reasoning for the rush to get this done. I am assuming right now there is worry I won't do well after the pancreas surgery. I mean really, with an FEV1 at 32%, if I were to handle the surgery poorly, I don't have much wiggle room do I? Any small bump is likely to put me in danger and need of a transplant. Let's hope that I don't get there and that if I do I know what I want....I am still so unsure of it all................................................
Anyway...I meet with everyone but the doctors. First appointment is at 9am and the last is at 4pm with a double CT scan of my lungs and sinuses.
After all those tests and meetings are done I only need to get a TB test done and bone density scan and I will be completely up to date on my testing. That reminds me, I need to call my PCP and set up the TB test appointments.
I assume on May 2nd when I have my clinic appointment they will go over everything with me, and let me know the reasoning for the rush to get this done. I am assuming right now there is worry I won't do well after the pancreas surgery. I mean really, with an FEV1 at 32%, if I were to handle the surgery poorly, I don't have much wiggle room do I? Any small bump is likely to put me in danger and need of a transplant. Let's hope that I don't get there and that if I do I know what I want....I am still so unsure of it all................................................
Thursday, February 6, 2014
Finished Processing
OK so the long awaited, or not, update.
I have had over a week to process all my information and I think I am at a good point.
The thing is I HAVE to get this cyst from my pancreas removed. The thing is pancreas surgery is a BEAR and I may or may not be in good enough health to deal with it. The surgeon is worried, and rightly so, about my lung function and bacteria growth in my lungs, and recovery. Bacteria from my lungs can cause all sorts of issues with the healing of a sliced up pancreas. My low lung function means I could never come off the vent or I could die. But not having it removed means I may never get a transplant and I may get cancer. Neither risks I am willing to take. I may not be 100% sure I WANT a transplant, but I know I don't want the option taken off the table.
The stats on this surgery are crazy. 30-60% of patients experience post-surgical complications. 5% of patients die during surgery. Roughly 5% die from complications after surgery. Scary to me, but I also didn't ask about the stats when I had the hysterectomy. It seemed simple and easy. Though when you Google the stats it seems just as scary. So maybe I have nothing to fret about.
My cyst right now is on the head of the pancreas and the whole head will need to be removed. The size is 2.6cm right now and we will see in May if it has grown to the magic number of 3cm. 3cm and the surgeon told me they remove it. But because I have Lynch Syndrome and they are recently learning the affects of LS on the pancreas, they would recommend it coming off, if I did not have CF or transplant to think of.
After the appointment on Tuesday, the surgeon began a chain email with my GI doc, genetics doc, tx team and CF doc. I was pleasantly surprised he started it that day and did not expect to see my CF doc on Wednesday and hear what had been discussed. Tx was asking a bunch of questions, as I would expect. Dr. D. does not see any serious risks (besides the vent thing) to me having the surgery and vowed they would do all they could to be sure my lungs were in the best shape possible. Luckily I see the transplant doc early May, before the MRI and surgeon again.
As far as CF clinic went...I was down a bit lunch function. At 32% again, 1.00L exactly. She wants to see me monthly until the surgery to be sure I am ready. As she said, I am stable, I dip here and there but nothing drastic. I am not on O2 full time and only require a small amount with sleep. Thanks to exercise my resting heart rate and O2 have gotten better so I am in good shape for surgery. But I am still scared. I will be scared until the surgery is over.
The transplant coordinator called me earlier this week to let me know that due to all of this, they want me to get up to date on all of my transplant tests again. So back to the dentist I went, back to the PCP I go for those tests and I get to spend a day or two wandering around BWH getting all my tests done again...except the cardiac cath and pH probe thankfully. I can deal with CT scans, echos, PFTs, labs and meetings with docs. I don't know what this means for me. Do they want to reconsider my case and list me? Or disqualify me? I won't find out until May 2nd.......................................
Love to you all...
I have had over a week to process all my information and I think I am at a good point.
The thing is I HAVE to get this cyst from my pancreas removed. The thing is pancreas surgery is a BEAR and I may or may not be in good enough health to deal with it. The surgeon is worried, and rightly so, about my lung function and bacteria growth in my lungs, and recovery. Bacteria from my lungs can cause all sorts of issues with the healing of a sliced up pancreas. My low lung function means I could never come off the vent or I could die. But not having it removed means I may never get a transplant and I may get cancer. Neither risks I am willing to take. I may not be 100% sure I WANT a transplant, but I know I don't want the option taken off the table.
The stats on this surgery are crazy. 30-60% of patients experience post-surgical complications. 5% of patients die during surgery. Roughly 5% die from complications after surgery. Scary to me, but I also didn't ask about the stats when I had the hysterectomy. It seemed simple and easy. Though when you Google the stats it seems just as scary. So maybe I have nothing to fret about.
My cyst right now is on the head of the pancreas and the whole head will need to be removed. The size is 2.6cm right now and we will see in May if it has grown to the magic number of 3cm. 3cm and the surgeon told me they remove it. But because I have Lynch Syndrome and they are recently learning the affects of LS on the pancreas, they would recommend it coming off, if I did not have CF or transplant to think of.
After the appointment on Tuesday, the surgeon began a chain email with my GI doc, genetics doc, tx team and CF doc. I was pleasantly surprised he started it that day and did not expect to see my CF doc on Wednesday and hear what had been discussed. Tx was asking a bunch of questions, as I would expect. Dr. D. does not see any serious risks (besides the vent thing) to me having the surgery and vowed they would do all they could to be sure my lungs were in the best shape possible. Luckily I see the transplant doc early May, before the MRI and surgeon again.
As far as CF clinic went...I was down a bit lunch function. At 32% again, 1.00L exactly. She wants to see me monthly until the surgery to be sure I am ready. As she said, I am stable, I dip here and there but nothing drastic. I am not on O2 full time and only require a small amount with sleep. Thanks to exercise my resting heart rate and O2 have gotten better so I am in good shape for surgery. But I am still scared. I will be scared until the surgery is over.
The transplant coordinator called me earlier this week to let me know that due to all of this, they want me to get up to date on all of my transplant tests again. So back to the dentist I went, back to the PCP I go for those tests and I get to spend a day or two wandering around BWH getting all my tests done again...except the cardiac cath and pH probe thankfully. I can deal with CT scans, echos, PFTs, labs and meetings with docs. I don't know what this means for me. Do they want to reconsider my case and list me? Or disqualify me? I won't find out until May 2nd.......................................
Love to you all...
Wednesday, January 29, 2014
In the Process of Processing
I met with the pancreatic surgeon yesterday and my CF doctor today. There is a lot of information to talk about. But I need some time to process it all. Once I do I will post an update.
Sunday, January 19, 2014
Tobi Podhaler
I started the pod haler on Friday. So far it hasn't been awful to use. I only have a 7 day trial so I won't get the full 28 day dosing, but we are doing it to see how my lungs react to it. I have a horrible reaction to inhaled antibiotics. Severe bronchi spasms. Hate them. So far nothing serious like that but its only been 3 doses. The first night, Friday night, I had quite a few suffocation dreams and P said I was moaning a lot in my sleep. So last night I upped my O2 from 1.5L to 2.5L and it seems to have worked.
Saturday morning I also woke up with a sore throat. But that could be from the inhaled meds. Or so I thought. Today I woke up with a left eye that won't stop watering, a nose on constant drip, and sneezing up a storm. Looks like a cold. Fabulous.
I have clinic on January 28th as my follow up from the 3 weeks of IVs (if you want to call it that) and to discuss how the pod haler worked for me. Or didn't. I also have an appointment with a pancreatic surgeon on the 28th. My GI doc at Dana Farber agreed that I should meet with one to discuss the possibility of removing that precancerous cyst from my pancreas. She doesn't think I need to right away, and that monitoring it will be sufficient, but it dawned on me on Friday that BWH will NOT transplant me with a precancerous cyst. So if something were to happen to me before it was removed, and my lungs took a dive, I would not be able to be listed until it was removed. So why wait? I need this bad boy removed asap. That is something I will discuss with the surgeon on the 28th.
So until the 28th my lovely blog readers...
Saturday morning I also woke up with a sore throat. But that could be from the inhaled meds. Or so I thought. Today I woke up with a left eye that won't stop watering, a nose on constant drip, and sneezing up a storm. Looks like a cold. Fabulous.
I have clinic on January 28th as my follow up from the 3 weeks of IVs (if you want to call it that) and to discuss how the pod haler worked for me. Or didn't. I also have an appointment with a pancreatic surgeon on the 28th. My GI doc at Dana Farber agreed that I should meet with one to discuss the possibility of removing that precancerous cyst from my pancreas. She doesn't think I need to right away, and that monitoring it will be sufficient, but it dawned on me on Friday that BWH will NOT transplant me with a precancerous cyst. So if something were to happen to me before it was removed, and my lungs took a dive, I would not be able to be listed until it was removed. So why wait? I need this bad boy removed asap. That is something I will discuss with the surgeon on the 28th.
So until the 28th my lovely blog readers...
Tuesday, December 3, 2013
It's That Time Again
Yup it is time for IVs!!! This way I will feel fabulous (or as fabulous as someone with my lung function can lol) for Christmas and visiting my family.
I blew some really shitty numbers today. FEV1 of 28%, .85L ha! Last time, Sept 17, I blew 1.11L, 36%!!! Holy drop batman!!! I haven't seen numbers like that since I did the Vertex study in Jan 2011. I was glad to see them so low because then she wouldn't suggest Cipro and Prednisone first. She did get an Xray done to make sure I didn't have a collapsed lung or anything like that. And I don't think I do or I would have heard back by now.
BCH and BWH made some changes and all CF patients up to age 35 have to be admitted to BCH unless they are listed for transplant or already transplanted. Luckily for me, I am technically listed for transplant even though I am inactive on the list. Seems weird to say that. But that means I can stay at BWH and not get used to another new hospital. Yayyyyyyy!!!
So it looks like tomorrow night I will be admitted and then I can be home on Monday, just in time to finish up my grad class. Lots of editing of my paper and crocheting will get done! Plus I starting getting a new magazine so I have 2 of them to bring with me. I won't be bored that is for sure!
Wednesday, June 12, 2013
Amazing Difference in 3 Months from Exercise!!!
This is the story of a Cyster's desire to improve her body and her health. This is a story with a happy plot line. This story is not over yet.
Three months ago I joined a new gym. I had been at my old one for a while but it was boring, I didn't like the atmosphere and I felt like a puny girl. Then the end of February I found a flyer in the mail-room of our condo. It was for a women's only gym down the street. Closer than the other gym!!! I decided to check it out. It was a bit more pricey but it had a good vibe and they offered classes for teens which was perfect for my step-daughter. I was hooked! I signed up that day and have not looked back since.
With the gym membership (and an annual fee) you can get a fitness consult to see where you are body wise. It was $90 and you get 4 appointments. I couldn't say no. March 13, 2013 I had my first consult. I was nervous. I felt fat and gross and so out of shape. I say I FELT that way because while I was out of shape, I was far from fat.
Here are some stats from that consult:
Weight: 126.2 lbs
BMI: 22.4
Body Fat: 30.8%
Fat Mass: 38.9 lbs
Cardio Fitness: 28.9 (needs improvement - NI)
Grip Strength: 51.6 (Fair)
Push ups (on your knees): 7 (NI)
Sit and Reach: 13.2 (NI)
Plank: 11 (Good)
Vertical Jump: 7.7 (NI)
Fast forward to today. It has been 3 months, and only 6 personal training sessions. I exercise 5-6 days a week. I do cardio for 4 days, strength training one day a week and then I also do Tone It Up. I am eating better, I am working out, and I am seeing results (and I realize I sound like a dam infomercial!).
Here are today's stats:
Weight: 121.2 lbs
BMI: 21.5
Body Fat: 28.4% (28% is normal)
Fat Mass: 34.4 lbs
Cardio Fitness: 37.8 (Very Good)
Grip Strength: 52.9 (Fair)
Push ups (on your knees): 25 (Very Good)
Sit and Reach: 22.86 (NI)
Plank: 11 (Good)
Vertical Jump: 12.7 (NI)
Now for the kicker:
I lost 14.25 inches from my body!!!
3/4" from my neck
1.5" from my shoulders
1.5" from my chest
2.5" from my waist
2.5" from my hips
2.0" from each of my thighs
I lost 4.5 lbs of body fat and decreased my Body Fat% by 2.4%.
My biggest surprise is not the 14" that I lost, but the improvement in my cardio functions! Granted, today I could not finish the treadmill test (they increase the incline and I insisted that once I hit 90% O2 we stop since my lungs are not fully cooperating), whereas last time I forced myself to finish no matter what. But my recovery time for my HR was much better this time around.
I knew I lost weight, I knew I lost inches. But I had no idea the results were this fabulous. My trainer asked if I wanted to be on the testimonial board and I said yes!!! After 6 sessions to see such an improvement, it makes me so happy. I realize now that the hard work IS paying off. I may not get back to work, but I know I will be healthier, and if I keep this up, when I get a transplant, hopefully my recovery and chances of survival will increase with the added health on the rest of my body.
I love this!!!
Sunday, April 28, 2013
Bitten by the Flu Bug!!!
Yup, it got me, a little late in the season but it got me. It started with Peter last weekend and I picked it up this weekend. My CF doctor told me to come to the ER if my fever spiked again and since it was 103 this morning, we decided to take a trip. Some fluids, a nose swab and a chest x-ray later and it was determined I have Flu B.
They are keeping me over night to monitor me and make sure my breathing doesn't get any worse. Its very hard to cough since it feels like I have glass shards in my chest, but hopefully the TamiFlu and fluids will help with that. Looking forward to being back to normal and getting my paper done this week. I finished one yesterday and printed it out so I am going to make use of my time in here and get the other one done as well as the assistantship stuff and practice for my presentation on Thursday. I have so much to do this week it really sucks the flu had to hit NOW!!!
I have an appointment with my CF doctor next Tuesday, the 7th, so we will see if this flu did anything to my numbers. I was expecting to be put on IV antibiotics next week, but who knows now. Right now I am just getting IV fluids, no antibiotics. But that could change tomorrow depending on what my culture comes back with.
I might as well update on everything while I am here right....Thursday I started working out with my personal trainer. LOVE IT! I was so sore on Friday but a good sore. I am looking forward to being in shape and toned up. I cannot wait. Thursday I also had transplant clinic and I got another clean bill of health and a "see you in 6 months" as I walked out the door. Love that too! I go back in 6 months and that will be right when I am finished with the PT so maybe my numbers will have improved some. She was excited for me when I told her I want to look into going back to work. She thought that was a great idea, as long as I figured all the SSDI and disability issues out. I've got a year to do it...I had seen them right before the honeymoon from hell so I was telling her all about that and she was so shocked my lungs crapped out as much as they did on the plane. She said they would have had to make an emergency landing had I not been wearing my O2 for sure. She said some people just respond totally different to flying than others....yeah ya think lol.
So that is all. Hopefully I am out of here tomorrow and back home curled up in my bed. It took me forever to get out of the house today because I didn't want to move. 103* fevers will do that to you...
They are keeping me over night to monitor me and make sure my breathing doesn't get any worse. Its very hard to cough since it feels like I have glass shards in my chest, but hopefully the TamiFlu and fluids will help with that. Looking forward to being back to normal and getting my paper done this week. I finished one yesterday and printed it out so I am going to make use of my time in here and get the other one done as well as the assistantship stuff and practice for my presentation on Thursday. I have so much to do this week it really sucks the flu had to hit NOW!!!
I have an appointment with my CF doctor next Tuesday, the 7th, so we will see if this flu did anything to my numbers. I was expecting to be put on IV antibiotics next week, but who knows now. Right now I am just getting IV fluids, no antibiotics. But that could change tomorrow depending on what my culture comes back with.
I might as well update on everything while I am here right....Thursday I started working out with my personal trainer. LOVE IT! I was so sore on Friday but a good sore. I am looking forward to being in shape and toned up. I cannot wait. Thursday I also had transplant clinic and I got another clean bill of health and a "see you in 6 months" as I walked out the door. Love that too! I go back in 6 months and that will be right when I am finished with the PT so maybe my numbers will have improved some. She was excited for me when I told her I want to look into going back to work. She thought that was a great idea, as long as I figured all the SSDI and disability issues out. I've got a year to do it...I had seen them right before the honeymoon from hell so I was telling her all about that and she was so shocked my lungs crapped out as much as they did on the plane. She said they would have had to make an emergency landing had I not been wearing my O2 for sure. She said some people just respond totally different to flying than others....yeah ya think lol.
So that is all. Hopefully I am out of here tomorrow and back home curled up in my bed. It took me forever to get out of the house today because I didn't want to move. 103* fevers will do that to you...
Tuesday, February 19, 2013
Charity's TEDx Video
Piper over at A Matter of Life and Breath had a guest blogger today. Her message was simple. Be an organ donor.
Check out Piper's blog for her guest blogger and this video of Charity:
Discourses from the Undead: Charity Tillemann-Dick at TEDxMidAtlantic
Check out Piper's blog for her guest blogger and this video of Charity:
Discourses from the Undead: Charity Tillemann-Dick at TEDxMidAtlantic
Thursday, December 20, 2012
Transplant and Cysts
This morning I heard from the transplant clinic. I was not presented last week, but was this morning. The results are what was expected. I am too healthy to be listed right now. Fine by me as I am not even 100% sure I WANT a transplant. So this means that I go into clinic every 4-6 months to get looked over. Any issues I encounter, any hospitalizations, any set backs, I need to let them know so they can add it to my file.
Today I also had my GI follow up to the colonoscopy and endoscopic ultrasound back in November. Mostly good news. :) OK actually its all relatively good news lol. The 9 polyps removed from my colon were benign adenomas - cancer polyps IF left untreated for many MANY years. She said there were 4 on the left side and 5 on the upper right side and that sides don't really matter as far as developing cancer. But 9 is a lot especially for only being 18 months since my last one. I was told I NEED to come back every 12 months at the most. Looks like every Oct/Nov I get to clean my gut out.....yaaaaaay.....
The pancreatic cyst is still concerning to the docs. I had thought it went from 1.5cm to 2.2 cms, but it was 1.2cms to 2.2 cms. She said if I was JUST CF I would be told to have it checked every 1-2 years. But since Lynch Syndrome can also affect the pancreas they are slightly worried it almost doubled in size in less than a year. So while I am inpatient in Jan they are going to do an MRI with sedation (I can not do them because I have anxiety issues and they NEED one done so they are knocking me out lol) to get a better look at it. She said they wanted to get a biopsy but its in an awkward spot. The GI doc who did the tests is one of the best at Dana Farber and she couldn't get it so they need to go with the MRI and possibly surgery for a biopsy. So after the MRI I am meeting with a pancreatic surgeon to, as she put it, cover my bases like with the transplant evaluation, I don't need it quite yet, but just in case. Not overly concerning issues, but still issues that need to be followed up on.
There ya have it. I am cancer safe for now, and hopefully after follow up tests I will remain so....
Today I also had my GI follow up to the colonoscopy and endoscopic ultrasound back in November. Mostly good news. :) OK actually its all relatively good news lol. The 9 polyps removed from my colon were benign adenomas - cancer polyps IF left untreated for many MANY years. She said there were 4 on the left side and 5 on the upper right side and that sides don't really matter as far as developing cancer. But 9 is a lot especially for only being 18 months since my last one. I was told I NEED to come back every 12 months at the most. Looks like every Oct/Nov I get to clean my gut out.....yaaaaaay.....
The pancreatic cyst is still concerning to the docs. I had thought it went from 1.5cm to 2.2 cms, but it was 1.2cms to 2.2 cms. She said if I was JUST CF I would be told to have it checked every 1-2 years. But since Lynch Syndrome can also affect the pancreas they are slightly worried it almost doubled in size in less than a year. So while I am inpatient in Jan they are going to do an MRI with sedation (I can not do them because I have anxiety issues and they NEED one done so they are knocking me out lol) to get a better look at it. She said they wanted to get a biopsy but its in an awkward spot. The GI doc who did the tests is one of the best at Dana Farber and she couldn't get it so they need to go with the MRI and possibly surgery for a biopsy. So after the MRI I am meeting with a pancreatic surgeon to, as she put it, cover my bases like with the transplant evaluation, I don't need it quite yet, but just in case. Not overly concerning issues, but still issues that need to be followed up on.
There ya have it. I am cancer safe for now, and hopefully after follow up tests I will remain so....
Saturday, December 15, 2012
Happy...and Sad
So sad....so very sad
A good friend of mine. The one I posted about needing a transplant like yesterday, well she is not well at all. Her heart is failing along with her lungs and they have told her husband she needs new lungs in the next 12 hours or there is nothing more they can do for her.
We are all hoping and praying for a Christmas miracle to come in the form of some new lungs and maybe even a new heart if they think that will help.
On the happy front, a fellow CF blogger Jess received her new life a few days ago in the form of new lungs! So excited and happy for her!
What does this all mean???
BE AN ORGAN DONOR!
When you die, you don't need them anymore. Why not be someone's hero and save their life? Why not donate them to someone who needs a few more years with their loved ones?
PLEASE sign up to be a donor! Click this link if you are in the US and register. And tell your family members too. They are the ones who have to sign the papers when you are gone / almost gone.
A good friend of mine. The one I posted about needing a transplant like yesterday, well she is not well at all. Her heart is failing along with her lungs and they have told her husband she needs new lungs in the next 12 hours or there is nothing more they can do for her.
We are all hoping and praying for a Christmas miracle to come in the form of some new lungs and maybe even a new heart if they think that will help.
On the happy front, a fellow CF blogger Jess received her new life a few days ago in the form of new lungs! So excited and happy for her!
What does this all mean???
BE AN ORGAN DONOR!
When you die, you don't need them anymore. Why not be someone's hero and save their life? Why not donate them to someone who needs a few more years with their loved ones?
PLEASE sign up to be a donor! Click this link if you are in the US and register. And tell your family members too. They are the ones who have to sign the papers when you are gone / almost gone.
Thursday, December 13, 2012
CF Can Kiss My Fucking Ass
Today is the big day. Today is the day I am officially presented to the transplant team. But so much shit is going on I totally forgot until I was driving to class tonight. I should call the coordinator tomorrow and find out if I actually WAS presented. Then await my appointment in April to see what the outcome was.
On the shit front....
Its been a devastating few days in the CF world.
A friend of mine who was transplanted a little over a year ago is in the ICU on the vent and ECMO trying to fight pneumonia and rejection.
Another good friend of mine was transplanted just a few days ago, was doing great, sitting up in a chair and hours later re-vented and now on ECMO fighting pneumonia.
And the closest friend was hospitalized a couple weeks ago for a routine exacerbation but steadily declined. They transferred her to Stanford in CA earlier today to re-activate her on the transplant list. I just found out a few hours ago she was vented and her husband was told she has 7-10 on the vent to wait for lungs, before they have to de-activate her. 7-10 days.
I am just so done with CF. I am so over it. It's too much to handle. I just can't do it.
So please, no matter what religious denomination you may subscribe to, PLEASE sending healing vibes to all three of these fabulous Cysters. They all have husbands (one is engaged and planning her wedding) and deserve SO MUCH MORE time.
On the shit front....
Its been a devastating few days in the CF world.
A friend of mine who was transplanted a little over a year ago is in the ICU on the vent and ECMO trying to fight pneumonia and rejection.
Another good friend of mine was transplanted just a few days ago, was doing great, sitting up in a chair and hours later re-vented and now on ECMO fighting pneumonia.
And the closest friend was hospitalized a couple weeks ago for a routine exacerbation but steadily declined. They transferred her to Stanford in CA earlier today to re-activate her on the transplant list. I just found out a few hours ago she was vented and her husband was told she has 7-10 on the vent to wait for lungs, before they have to de-activate her. 7-10 days.
I am just so done with CF. I am so over it. It's too much to handle. I just can't do it.
So please, no matter what religious denomination you may subscribe to, PLEASE sending healing vibes to all three of these fabulous Cysters. They all have husbands (one is engaged and planning her wedding) and deserve SO MUCH MORE time.
Tuesday, November 27, 2012
BRAVO Fix
If you are keeping up with my BRAVO mess I have some good news!
I spoke with the transplant coordinator today and they are going to let me skip the test until I am actively listed or until I am transplanted. And then only if I have some reflux issues. Which I probably will since I have reflux now without my meds.
But I am so glad to hear that I can be presented now! December 13th I will have my file presented to the team. If someone who needs to be listed immediately pops up to be presented and the case load is full, she will bump me to the following week. I am OK with that since I don't plan on being actively listed just yet. And as long as I don't have any sudden health scares I should be deemed too healthy. Again, fine by me. Better to get in there and get evaluated than to wait till I NEED it.
Very exciting and very scary. To think that in 3 weeks I will finally get an answer to whether or not I can have a transplant....crazy.
Fingers and toes crossed....for what I am not quite sure yet...
I spoke with the transplant coordinator today and they are going to let me skip the test until I am actively listed or until I am transplanted. And then only if I have some reflux issues. Which I probably will since I have reflux now without my meds.
But I am so glad to hear that I can be presented now! December 13th I will have my file presented to the team. If someone who needs to be listed immediately pops up to be presented and the case load is full, she will bump me to the following week. I am OK with that since I don't plan on being actively listed just yet. And as long as I don't have any sudden health scares I should be deemed too healthy. Again, fine by me. Better to get in there and get evaluated than to wait till I NEED it.
Very exciting and very scary. To think that in 3 weeks I will finally get an answer to whether or not I can have a transplant....crazy.
Fingers and toes crossed....for what I am not quite sure yet...
Thursday, November 22, 2012
Bravo Disappointment
Where to start, where to start?
Shall I start last Wednesday when I got a phone call with a totally different time for my procedures than I had been told?
Shall I start on Friday when I finally talked to someone about the discrepancies in the times and was told a totally different time again?
Shall I start on Sunday when I actually began my prep for Wednesday's procedures?
Shall I start on Monday when I had to field a call that my health history doesn't allow me to do a phone pre-op and needed to come in mid-prep for it now?
Shall I start on Wednesday when those procedures where scheduled to go down?
Let's start on Friday..................
I finally received a phone call back from endoscopy about the discrepancy in the times. I had been told the week before when everything was switched to Wednesday the 21st that my new time would be 2:15pm. The phone call I received said 3pm. When I spoke with the woman in endoscopy she told me 2:30 but I needed to be in at 1:45. She also told me that I would get a phone call on Monday to do my pre-op screening since they were running slightly behind. I said no problem.
Sunday I started my prep. Yes SUNDAY. 4 days before anything was to be shoved in, up, down and around my body. I have an extremely SLOW digestive system and this is the only way to ensure I am clean enough to get anything done on me. So Sunday started my chicken broth, lemon water ice and lemon jello diet. Yummy huh? I also take 2 ducolax pills to get my system started.
Monday I receive a phone call from the SAME woman I spoke to on Friday. She tells me that due to my health history I can not have a phone pre-op assessment and I need to come to BWH Tuesday morning at 9:45. I nicely as I can after not eating anything of substance for 24 hours, that I am in the middle of my prep and that sitting in a hospital waiting room for 2 hours is not an option. She tells me she will speak with someone and get back to me. So she calls me a couple hours later and lets me know that they can get me in at 10am on Wednesday before my scheduled procedures and asks why I am prepping already. Again I nicely as I can explain why. I have also started my prep and finished 2 64oz bottles of apple juice with a total of 30 Miralax doses in them. I am in the throws of "cleaning out." I take 2 more ducolax pills to keep it going over night.
Tuesday is more of the same however, I am drinking magnesium citrate. I don't feel it is working as well as I would like so when P is on his way home I ask him to get me another bottle of apple juice. I added another 15 doses of Miralx to that and drank it for the rest of the night. I take 2 more ducolax to again keep it going over night.
Wednesday morning. I am nervous I am not as clean as I need to be. I decide to use an enema for good measure. Are you keeping track? That is 45 doses of Miralax, 2 bottles of magnesium citrate, 6 ducolax pills and 1 enema. Phew! I was lucky enough to have my SIL drive me to the hospital and wait for me. She is a doll! Especially since we had to be there at 10am and my procedure wasn't until 1:45. We kept each other company and got to chat, just the two of us.
So at 1:30 we get to the endoscopy center and I sign in. They take me back shortly after and we get started on all pre-op in op that we need to do. I change and we go over what I am supposed to have done that day. But wait? There is no BRAVO on the list!? I explain that I was scheduled for it on the 28th but was called to move everything to one day (Wednesday) to make it easier on me. She says OK I will look into this. So right there I am a bit annoyed that things get screwed up. I go into the bathroom one last time and when I come out there is this doctor having a hissy fit about something. I immediately realize its ME and the BRAVO procedure. I hadn't met the doctor doing my scopes yet, and now I am totally annoyed that she is annoyed.
The nurse comes over and gets me into a bed. Well, my heart rate decides to sky rocket because I am so frustrated. Resting its still in the 140s. No one is too happy about this and all the deep breaths I take is only making it go higher. They decide they need to do an EKG to make sure there is nothing wrong. Great. I try to explain that stress raises my HR and resting I am around 110-115. EKG is fine, of course. All I keep thinking is if they cancel this because of my HR I am not going to be happy! They decide its OK since this is normal for me (they listened yay!).
Finally they wheel me into the room where the procedures will be done. Everyone is great and the doctor (the one who was having the hissy fit) comes in. I have calmed down some and she explains to me that there is NO record of my ever having been scheduled for the BRAVO in the system. She is very nice, I should add. She says she paged my transplant doctor, Dr G, and she said there is no need for me to have the BRAVO. Um excuse me? I explain to Dr L that I NEED this test for my transplant evaluation and that I am supposed to be presented in December and can not be without this test. She said since there is no record of me being scheduled and my doctor said I don't need it, they can not do it. Now it is entirely out of endoscopy's hands. I am LIVID at the transplant center. I tell Dr L I will be seeing her again soon. Again, she was VERY nice and there is nothing they can do. They can't just do a test on me that isn't OK'd by my doctor.
At this point they drug me up and I wake up right before they wheel me out and back into the recovery area. All went well. I spoke with Dr L again after and she let me know what they found. There were 9 small polyps (all 1cm and under) in my colon that they removed. My ultrasound showed that the cyst on my pancreas grew from 1.5cm to 2.2cm. They were unable to get a biopsy of it due to the location. She said they are slightly worried that it grew but that my GI doc will go over all my options in December when I meet with her. She said they may have to operate to get it off, or biopsy or whatever. So I have that to look forward to. But I will get the result of the polyps in my colon when I see her as well. Other than the growing cyst everything went well. I was clean enough to see everything so my absurd amount of prep actually worked!
Here is the size of the polyps in my colon, the original size of the pancreatic cyst in January and the size it is now. And a dime for reference.
So there you have it. I sent an email to the NP at transplant clinic and I hope to hear back from here on Monday. I told her I was not happy and they need to work on their communication up there. Confrontations are not my style but I am sick of this run around shit. Someone needs to figure things out and I am so furious this got fucked up. Being presented in December might not be an option now, and I suffered for 5 days without ANY antacids for no reason. But shit happens and hopefully they fix this.
Happy Thanksgiving everyone!!!
Shall I start last Wednesday when I got a phone call with a totally different time for my procedures than I had been told?
Shall I start on Friday when I finally talked to someone about the discrepancies in the times and was told a totally different time again?
Shall I start on Sunday when I actually began my prep for Wednesday's procedures?
Shall I start on Monday when I had to field a call that my health history doesn't allow me to do a phone pre-op and needed to come in mid-prep for it now?
Shall I start on Wednesday when those procedures where scheduled to go down?
Let's start on Friday..................
I finally received a phone call back from endoscopy about the discrepancy in the times. I had been told the week before when everything was switched to Wednesday the 21st that my new time would be 2:15pm. The phone call I received said 3pm. When I spoke with the woman in endoscopy she told me 2:30 but I needed to be in at 1:45. She also told me that I would get a phone call on Monday to do my pre-op screening since they were running slightly behind. I said no problem.
Sunday I started my prep. Yes SUNDAY. 4 days before anything was to be shoved in, up, down and around my body. I have an extremely SLOW digestive system and this is the only way to ensure I am clean enough to get anything done on me. So Sunday started my chicken broth, lemon water ice and lemon jello diet. Yummy huh? I also take 2 ducolax pills to get my system started.
Monday I receive a phone call from the SAME woman I spoke to on Friday. She tells me that due to my health history I can not have a phone pre-op assessment and I need to come to BWH Tuesday morning at 9:45. I nicely as I can after not eating anything of substance for 24 hours, that I am in the middle of my prep and that sitting in a hospital waiting room for 2 hours is not an option. She tells me she will speak with someone and get back to me. So she calls me a couple hours later and lets me know that they can get me in at 10am on Wednesday before my scheduled procedures and asks why I am prepping already. Again I nicely as I can explain why. I have also started my prep and finished 2 64oz bottles of apple juice with a total of 30 Miralax doses in them. I am in the throws of "cleaning out." I take 2 more ducolax pills to keep it going over night.
Tuesday is more of the same however, I am drinking magnesium citrate. I don't feel it is working as well as I would like so when P is on his way home I ask him to get me another bottle of apple juice. I added another 15 doses of Miralx to that and drank it for the rest of the night. I take 2 more ducolax to again keep it going over night.
Wednesday morning. I am nervous I am not as clean as I need to be. I decide to use an enema for good measure. Are you keeping track? That is 45 doses of Miralax, 2 bottles of magnesium citrate, 6 ducolax pills and 1 enema. Phew! I was lucky enough to have my SIL drive me to the hospital and wait for me. She is a doll! Especially since we had to be there at 10am and my procedure wasn't until 1:45. We kept each other company and got to chat, just the two of us.
So at 1:30 we get to the endoscopy center and I sign in. They take me back shortly after and we get started on all pre-op in op that we need to do. I change and we go over what I am supposed to have done that day. But wait? There is no BRAVO on the list!? I explain that I was scheduled for it on the 28th but was called to move everything to one day (Wednesday) to make it easier on me. She says OK I will look into this. So right there I am a bit annoyed that things get screwed up. I go into the bathroom one last time and when I come out there is this doctor having a hissy fit about something. I immediately realize its ME and the BRAVO procedure. I hadn't met the doctor doing my scopes yet, and now I am totally annoyed that she is annoyed.
The nurse comes over and gets me into a bed. Well, my heart rate decides to sky rocket because I am so frustrated. Resting its still in the 140s. No one is too happy about this and all the deep breaths I take is only making it go higher. They decide they need to do an EKG to make sure there is nothing wrong. Great. I try to explain that stress raises my HR and resting I am around 110-115. EKG is fine, of course. All I keep thinking is if they cancel this because of my HR I am not going to be happy! They decide its OK since this is normal for me (they listened yay!).
Finally they wheel me into the room where the procedures will be done. Everyone is great and the doctor (the one who was having the hissy fit) comes in. I have calmed down some and she explains to me that there is NO record of my ever having been scheduled for the BRAVO in the system. She is very nice, I should add. She says she paged my transplant doctor, Dr G, and she said there is no need for me to have the BRAVO. Um excuse me? I explain to Dr L that I NEED this test for my transplant evaluation and that I am supposed to be presented in December and can not be without this test. She said since there is no record of me being scheduled and my doctor said I don't need it, they can not do it. Now it is entirely out of endoscopy's hands. I am LIVID at the transplant center. I tell Dr L I will be seeing her again soon. Again, she was VERY nice and there is nothing they can do. They can't just do a test on me that isn't OK'd by my doctor.
At this point they drug me up and I wake up right before they wheel me out and back into the recovery area. All went well. I spoke with Dr L again after and she let me know what they found. There were 9 small polyps (all 1cm and under) in my colon that they removed. My ultrasound showed that the cyst on my pancreas grew from 1.5cm to 2.2cm. They were unable to get a biopsy of it due to the location. She said they are slightly worried that it grew but that my GI doc will go over all my options in December when I meet with her. She said they may have to operate to get it off, or biopsy or whatever. So I have that to look forward to. But I will get the result of the polyps in my colon when I see her as well. Other than the growing cyst everything went well. I was clean enough to see everything so my absurd amount of prep actually worked!
Here is the size of the polyps in my colon, the original size of the pancreatic cyst in January and the size it is now. And a dime for reference.
So there you have it. I sent an email to the NP at transplant clinic and I hope to hear back from here on Monday. I told her I was not happy and they need to work on their communication up there. Confrontations are not my style but I am sick of this run around shit. Someone needs to figure things out and I am so furious this got fucked up. Being presented in December might not be an option now, and I suffered for 5 days without ANY antacids for no reason. But shit happens and hopefully they fix this.
Happy Thanksgiving everyone!!!
Wednesday, September 5, 2012
WOW Pretty Low Numbers Again!
Its amazing how you can be sick and not even know it!
I had clinic today and we knew going in I would need a clean out. My numbers were down slightly last clinic and Cipro really didn't do much for me. I am more SOB and my energy level is low. I cough all the time, as usual but I mean really cough. I have an admission scheduled for next Wednesday, the 12th.
Seems I am on a somewhat downward trend. I get back up but my lows are pretty low!
Today I blew an FEV1 of .93L or 32%. Last clinic I was 1.10L or 38%. And the healthy clinic after IVs were stopped I was 1.28L or 44%. And last time I needed IVs (May) I was at .95L or 33%. Before that I was 1.08L or 37%. See where I am going with this?
I go up and then come back down. I go up and then I come back down.
Oh well....that is the nature of CF correct?
Today though I was completely overwhelmed. I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow. I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic. I felt overwhelmed by the never ending appointments for CF and LS. Bu constantly having to do this test and that test and go here and go there. And all so I don't get cancer and I can stay healthy.
Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy. Or I might only have 2 years. I dunno. Maybe once I hit the "dying" phase I will be more sure of things? Maybe I will be more confused? I dunno. All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).
And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him. I really miss my old clinic. I don't like going to a children's hospital. I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait). I don't like the traffic and the parking garage and the parking fee and well you get my point. It was just one of those days ya know....
I had clinic today and we knew going in I would need a clean out. My numbers were down slightly last clinic and Cipro really didn't do much for me. I am more SOB and my energy level is low. I cough all the time, as usual but I mean really cough. I have an admission scheduled for next Wednesday, the 12th.
Seems I am on a somewhat downward trend. I get back up but my lows are pretty low!
Today I blew an FEV1 of .93L or 32%. Last clinic I was 1.10L or 38%. And the healthy clinic after IVs were stopped I was 1.28L or 44%. And last time I needed IVs (May) I was at .95L or 33%. Before that I was 1.08L or 37%. See where I am going with this?
I go up and then come back down. I go up and then I come back down.
Oh well....that is the nature of CF correct?
Today though I was completely overwhelmed. I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow. I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic. I felt overwhelmed by the never ending appointments for CF and LS. Bu constantly having to do this test and that test and go here and go there. And all so I don't get cancer and I can stay healthy.
Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy. Or I might only have 2 years. I dunno. Maybe once I hit the "dying" phase I will be more sure of things? Maybe I will be more confused? I dunno. All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).
And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him. I really miss my old clinic. I don't like going to a children's hospital. I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait). I don't like the traffic and the parking garage and the parking fee and well you get my point. It was just one of those days ya know....
Friday, August 24, 2012
Ecccchhhoooooooo
Today I had an echocardiogram done for transplant evaluation.
First off it was so cool! I got to watch my heart actually BEATING on the screen! Took me a few seconds to be sure that was what it really was, but it was in line with the "duh dun...duh dun...duh dun" of my heart beat. It was so small and I laid there for a while trying to figure out which angle it was. I kept picturing baby ultrasounds and how a baby would lay in the abdomen and how that looks....and well you get the idea.
Secondly I guess it wasn't THAT cool because I started to nod off....and did one of those "jump in your seats when you realize you are falling asleep" moves, only I was laying on my side....with the echo lady rubbing the device over my boob. Ah well. She asked if I was falling asleep and laughed. I felt like an ass but hey they keep it dark in there and looking at my heart can only entertain me for so long ya know.
I was the youngest one in the waiting room by far. I guess today was the older generation (see how I used that instead of old farts lol) day at the cardiovascular center.
I am feeling thoroughly overwhelmed at this transplant evaluation. I have hit denial mode and just can't seem to find the energy to move forward with it. My BRAVO test is scheduled but I need to move it because it falls on a day I will be inpatient, and they won't place it while inpatient (seriously PENN was so much better about this shit than BWH is sheesh). Clinic sent me a list of everything I have to have done, and when, to keep myself on the list (active or not) when I am actually listed. Key is getting everything up to date all at once so they can present my case and decide if I am a good candidate for lung transplantation.
But that is where I fall off the wagon. Getting it all scheduled and completed before something else expires. It's almost like I am sabotaging this before it even begins. Kinda like all my old relationships HA! If you sabotage it before it starts, then there is no disappointment when it doesn't work/happen right? RIGHT?
I remember when transplant was a word that described sick people needing new organs. It was a word that I NEVER thought I would ever use on an almost daily basis. It is a word I NEVER thought I would think about constantly. And it is a word I NEVER thought would cause me so much anxiety and fear.
I do plan on discussing my main concerns with the doctor next time I am there. I need them to be aware of my concerns, and see if they are the same as theirs...i.e. cancer. All this because of the threat of cancer. All this because I am PETRIFIED to get cancer after transplant. When I say petrified I mean like the kids in Jurassic Park when they are running for their lives scared. Yeah intense I know.
First off it was so cool! I got to watch my heart actually BEATING on the screen! Took me a few seconds to be sure that was what it really was, but it was in line with the "duh dun...duh dun...duh dun" of my heart beat. It was so small and I laid there for a while trying to figure out which angle it was. I kept picturing baby ultrasounds and how a baby would lay in the abdomen and how that looks....and well you get the idea.
Secondly I guess it wasn't THAT cool because I started to nod off....and did one of those "jump in your seats when you realize you are falling asleep" moves, only I was laying on my side....with the echo lady rubbing the device over my boob. Ah well. She asked if I was falling asleep and laughed. I felt like an ass but hey they keep it dark in there and looking at my heart can only entertain me for so long ya know.
I was the youngest one in the waiting room by far. I guess today was the older generation (see how I used that instead of old farts lol) day at the cardiovascular center.
I am feeling thoroughly overwhelmed at this transplant evaluation. I have hit denial mode and just can't seem to find the energy to move forward with it. My BRAVO test is scheduled but I need to move it because it falls on a day I will be inpatient, and they won't place it while inpatient (seriously PENN was so much better about this shit than BWH is sheesh). Clinic sent me a list of everything I have to have done, and when, to keep myself on the list (active or not) when I am actually listed. Key is getting everything up to date all at once so they can present my case and decide if I am a good candidate for lung transplantation.
But that is where I fall off the wagon. Getting it all scheduled and completed before something else expires. It's almost like I am sabotaging this before it even begins. Kinda like all my old relationships HA! If you sabotage it before it starts, then there is no disappointment when it doesn't work/happen right? RIGHT?
I remember when transplant was a word that described sick people needing new organs. It was a word that I NEVER thought I would ever use on an almost daily basis. It is a word I NEVER thought I would think about constantly. And it is a word I NEVER thought would cause me so much anxiety and fear.
I do plan on discussing my main concerns with the doctor next time I am there. I need them to be aware of my concerns, and see if they are the same as theirs...i.e. cancer. All this because of the threat of cancer. All this because I am PETRIFIED to get cancer after transplant. When I say petrified I mean like the kids in Jurassic Park when they are running for their lives scared. Yeah intense I know.
Wednesday, July 18, 2012
"I Get By with a Little Help From my Friends"
The Beatles were right on the money with those lyrics if I do say so myself!
Sometimes we just need someone else to help us know that its OK to wonder....
Thank you for your beautifully written (as always) post Piper!
I hope that though I struggle right now with the choice of yes or no, that when I am facing the barrel of the death gun I will be able to make a choice. And I know that choice will be the right one no matter which it may be.
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Sometimes we just need someone else to help us know that its OK to wonder....
Thank you for your beautifully written (as always) post Piper!
I hope that though I struggle right now with the choice of yes or no, that when I am facing the barrel of the death gun I will be able to make a choice. And I know that choice will be the right one no matter which it may be.
Tuesday, July 17, 2012
6 Minute Walk Test Results
Today I had another 6MWT done. I usually don't have them print up a sheet for me but decided to this time. I am glad I did as I never realized how much stuff was on there!
I walked 342m or 1122 feet in 6 minutes. I am at 49% of other people my age (694m or 2277 feet).
My starting respiratory rate was 16 and my ending was 22.
My starting heart rate was 93 and ending was 132.
My starting blood pressure was 94/65 and ending was 115/71.
My starting O2 was 94% and lowest I went was 89%.
So all in all not a bad turn out for my 42% lung function.
I walked 342m or 1122 feet in 6 minutes. I am at 49% of other people my age (694m or 2277 feet).
My starting respiratory rate was 16 and my ending was 22.
My starting heart rate was 93 and ending was 132.
My starting blood pressure was 94/65 and ending was 115/71.
My starting O2 was 94% and lowest I went was 89%.
So all in all not a bad turn out for my 42% lung function.
Monday, July 16, 2012
Transplantation...Is it for me?
Lately I feel like I am hitting the old denial bottle quite hard. Just thinking about transplant and all the tests I have to get done. They sent me a list with every test I need done and when it is due to be repeated. Its daunting. Especially since I feel healthy and like I might not need to be transplanted for quite a few years.
The test today, which I couldn't do, just really got me thinking. If I can't handle that, will I be able to handle a cracked open chest and new lungs?
I just look at everything that needs to be done, all the recoup time, all the tests, medications, appointments and I wonder "is it REALLY worth it?" What if I end up with shitty lungs again? What if I reject fast? What if I die in surgery? What if...what if...what if?
The choice is mine right? I know I have a family now, but I can say no right?
Maybe I need to step up my health game. Maybe I need to kick it into high gear and work on staying healthy so I don't NEED a double lung transplant.
Life was a lot easier when I was against getting a transplant. Then again, I could actually breathe back then....
Panicking Amy
Well I didn't get the 24 hour pH probe done. I freaked out. I started crying as soon as I walked into the room and could not stop. He sprayed the numbing stuff into my mouth and nose and I about lost it completely. I couldn't go through with it. I was a mess. There was no way anything was being shoved in my nose. And they can't give you anything to calm you unless it is pre-ordered by your doctor.
I had to have 2 tests done (that part was a surprise). One was a quick 10 minute test much like the Barium Swallow test. However, the tube is GINORMOUS! It was the size of a dam worm! OK maybe not quite that large but pretty dam close. Its safe to say it was larger than the NG tube I tried to have placed. I don't care if it was only going in for 10 minutes. I knew for sure I would freak out.
The probe was a MUCH smaller copper colored tube attached to a device that would have been strapped to my waist. I probably could have handled that being placed, but I was not sure how I would be once the numbing wore off and I was too afraid I would have a panic attack and rip it out.
I say this because I have a panic attack if I put a dress on and it gets stuck. Seriously. Panic attacks from a dress. Why would I even consider this test?
Luckily there is another test that can be done in its place called the BRAVO test. This one you are knocked out for the placement and you don't have to go back to have anything removed. Its a small device glued to your stomach/esophagus that transmits information back. Ummm HELLO, why was I not informed about this before?!?! Friends had mentioned the test on facebook after I had this probe booked. So I was aware I could have it done, if this didn't work out. I don't know why they don't give you that option. Its ridiculous. Instead let's have people be uncomfortable for at least 24 hours and even more so since you can not take ANY heartburn medications 5 days prior.
A wasted trip down to BWH, but oh well. Now to go call the transplant team and schedule that BRAVO.....
UPDATE:
I called my transplant team and they don't like doing the BRAVO test. So they are going to discuss it and decide. I am NOT doing the probe so they either have me do this or I go somewhere else that doesn't require it. And quite frankly, I know of a couple of patients who were transplanted here and didn't have it done because they were too sick to wait. So ha!
I had to have 2 tests done (that part was a surprise). One was a quick 10 minute test much like the Barium Swallow test. However, the tube is GINORMOUS! It was the size of a dam worm! OK maybe not quite that large but pretty dam close. Its safe to say it was larger than the NG tube I tried to have placed. I don't care if it was only going in for 10 minutes. I knew for sure I would freak out.
The probe was a MUCH smaller copper colored tube attached to a device that would have been strapped to my waist. I probably could have handled that being placed, but I was not sure how I would be once the numbing wore off and I was too afraid I would have a panic attack and rip it out.
I say this because I have a panic attack if I put a dress on and it gets stuck. Seriously. Panic attacks from a dress. Why would I even consider this test?
Luckily there is another test that can be done in its place called the BRAVO test. This one you are knocked out for the placement and you don't have to go back to have anything removed. Its a small device glued to your stomach/esophagus that transmits information back. Ummm HELLO, why was I not informed about this before?!?! Friends had mentioned the test on facebook after I had this probe booked. So I was aware I could have it done, if this didn't work out. I don't know why they don't give you that option. Its ridiculous. Instead let's have people be uncomfortable for at least 24 hours and even more so since you can not take ANY heartburn medications 5 days prior.
A wasted trip down to BWH, but oh well. Now to go call the transplant team and schedule that BRAVO.....
UPDATE:
I called my transplant team and they don't like doing the BRAVO test. So they are going to discuss it and decide. I am NOT doing the probe so they either have me do this or I go somewhere else that doesn't require it. And quite frankly, I know of a couple of patients who were transplanted here and didn't have it done because they were too sick to wait. So ha!
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