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Lindsey
Member
Username: Lindsey3
Post Number: 91
Registered: 06-2007
| | Posted on Tuesday, March 06, 2012 - 09:03 pm: | 
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Okay,
So I just wanted to post an update and maybe solicit some experiences from those with more experience in this area than me.
I don't post here that often, but do tend to read up on people and check things out. Due to that I will give a little background on me for those that don't know me well or at all.
I had a double lung transplant nearing 5 years ago (5 years will be May 2/3, 2012). I have had a relatively smooth and problem free run to this point. I had surgery last year (unrelated to transplant) and ended up with pneumonia of sorts over the summer, which was hurried along by the influx of smoke from fires in the area. I was placed on IV antibiotics for 3 weeks and seemed to recover just fine.
A few months after that started with another little flare up and was on some form of antibiotic for several months (not IVs however). Starting in December I noticed a small drop in PFTs function (but not enough to call my center). I kept an eye on it and it seemed to remain steady. Then near the end of January I noticed another small drop. My normal FEV1 was in the 2.9 liter range before issues and the drop had me hanging out around 2.75 liters. Again still not enough to call my center (we have to be at 10% decline) but I kept an eye on it. Well January came and I hit 2.55-2.60 liters and I called.
I had a bronch and the docs started me on Colistin aerosol treatments and a prednisone taper because they were quite sure what was going on. I had Pseudo culture in my lungs, but they looked clear. I also had some inflammation, so they did a pred. taper. Well in that 3 week span I had no change in lung function (increase or decline). I also pursued sinus surgery because the docs were taking a stab in the dark that my infected sinuses were causing my lungs issues. If I had sinus surgery then I would see the PFTs increase was the theory. So I set up sinus surgery for 1 week after I ended the pred taper and the aerosol antibiotic.
I called before the sinus surgery and asked again to be seen to start some type of treatment in case it was chronic rejection (all of my biopsies came back negative for acute). They told me they wanted to wait a few days until I had the sinus surgery before treating me for chronic rejection. I agreed even though I didn't want to. I had to wait a few days before performing my breathing tests at home again after the surgery. When I did they had declined again. Now down to 2.30 liters. I called and was brought in that day to get an IV started and the next day for a bronch. All of my cultures came back 100% clear only growing normal flora and they did 9 biopsies to check for acute rejection and all were negative.
Due to those results I was given the diagnosis of Chronic Rejection February 15. I started a 2 week course of IV antibiotics as a preventive to getting sick, a 30 day TOBI aerosol treatment course (1 treatment a day) and continued the sinus rinse antibiotic given to me by my sinus surgeon. I was also placed on Zithromax, given 3 500mg infusions of solumedrol and am currently on a prednisone taper that started at 60mg a day after the infusions were complete. I have had my cellcept and prograf levels increased as well. I am also taking meds to prevent thrush and other things of that nature. As of right now I have been stable fluctuating between 2.25 liters and 2.40 liters FEV1.
The docs are hopeful that I will remain stable at this point. They are just trying to get my immune system where they want it. My White Blood Cell Count is still high and they have been altering medications to get that where it needs to be. I go back for my annual appointments the first week of April and will have more information at that time. I may have more meds added to the regimen maybe not, only time will tell.
I have been handling it pretty okay. At this point I am nervous and trying to hold it together. I am also reassuring myself that if I am able to maintain where I am and remain stable that I am okay with that. I currently am sitting at 68-70% of my expected lung function, which is more than I had in my teens and I had a full life in my teens. I am not concerned with quality of life at this point. I am more concerned with trying to get my body in balance and take care of myself more appropriately.
I see a dietitian in the coming days to determine a diet that will keep me healthy, along with my kidneys and other organs that may be compromised with the increase in meds and all. I have also started back to the gym more religiously and am actually doing the couch to 5K training. My cousin and I have tentative plans to do a half marathon next year, God willing. I am maintaining work and school as usual and just taking my time to make sure that I don't wear myself out. I am having to get my body adjusted to the decrease in lung function at this point, but again I know I can handle that. I am still SAT-ing well. 98 on room air with my walks at clinic and am still abl to perform at the gym without feeling like I am going to die.
I guess for me right now it is not letting the possibilities of what COULD happen cloud my judgment and my mind, but more so doing what I did immediately post transplant and re-convincing my body that these lungs belong to me and that my body is not in charge I am lol.
I would love to hear any input from people that have dealt with Chronic Rejection. I have been very spoiled with my transplant experience and have avoided most problems that many patients deal with by either never experiencing them or catching them early because I am anal and I call clinic about everything.
My next big thing that I am excited about at this point after the dietitian is that I am going to see an acupuncturist, after the transplant team gave the okay, in hopes that they can help to clear out some negative build up and toxins in my body. Like I said this is just bringing me to a place where I want to be completely centered in my body because though I am hoping for the best I also want to make sure I am physically prepared if I have to go through this process again.
Thanks for reading.
Lindsey
Lindsey
28 with Cystic Fibrosis
Double Lung Transplant at Mayo Clinic ~
May 2, 2007 |
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Hostess Rise'
Board Administrator
Username: Rise
Post Number: 17243
Registered: 05-2003
| | Posted on Wednesday, March 07, 2012 - 05:39 pm: |
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Hi Linds!
Great hearing from you. I am a huge believer in healthy eating and proud myself on all the food I choose that goes into my body. I feel CF patients in general can greatly benefit from a gluten free diet.
I have tried acupuncture every now and then but prefer energy medicine.
It seems that it depends on what the acupuncturist is working on. One treatment works wonders while another treatment did nothing for me.
Sounds to me that you are very stable and be proud. Follow your dreams!
Keep us posted when you have time
love
Rise'
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Joanne Schum
Member
Username: Joannebutterfly
Post Number: 285
Registered: 11-2011
| | Posted on Wednesday, March 07, 2012 - 07:51 pm: |
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Lindsey,
I received new lungs due to CF, Sept 12, 1997.
I developed Chronic Rejection in December 2004.
I had been on Prograf, Cellcept ,Prednisone for rejection. At the new diagnosis, they ADDED Rapamune and Azithromycin ( I am on 250mg of Azithromycin every day, not the 3 day a week some are on.) When this Chronic started, my FEV1 dipped to 26%. After the new drug regiment over the next couple months my FEV1 went to 65%. I am pretty stable there still.
My team stresses, since day ONE of my tx. if my PFT's change at all, I have any cough, CALL them. The earlier the better to diagnose rejection. So when my numbers fell, I called them in a panic. ( I am a worrier, I think that worked to my advantage in this matter).
Several others at my center also were doing the chronic, and my center put them on the same drug list. Some recovered, some did not. My center felt those that acted fast were the ones with success.
So sounds like you acted fast.
Have you asked about what treatments they are willing to try?
There are so many now....
Wishing you success.
Joanne
Joanne Schum
Bi-lateral Lung Transplant, Sept 12, 1997,due to CF
University of North Carolina, Chapel Hill
Web Site: http://health.groups.yahoo.com/group/LungTransplantSupportForPatients/
Chat Site: http://xat.com/LungTransplantSupportforPatients |
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Lindsey
Member
Username: Lindsey3
Post Number: 92
Registered: 06-2007
| | Posted on Thursday, March 08, 2012 - 12:25 am: |
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Thank you Risa and Joanne,
As for what the plans are I have asked that. The day they gave me the CR diagnosis I asked what we were going to do, as they had already started treating me for CR the day before, with the Solumedrol infusions.
They decided in clinic about the med changes, increased doses and additions. I did Azithromycin everyday for 1 week and then switched to the MWF schedule. When things first started they told me that dependent upon how my WBC reacted and my med levels behaved they may increase my Cellcept dose. Well since my WBC had not responded as quickly as they had hoped they did increase my Cellcept dose to 1000mg twice a day. I go back the first week of April to be seen for my annual appointments and will possibly have more med changes at that time.
The appointment last week the doc said that if my WBC count still isn't where they want it that they will either add a fourth immune suppressant that I would take once a week or they may change me from Prograf to Rapamune. I personally, as silly as it sounds, may ask them to add the fourth rather than change me from Prograf. I can't remember if he told me the fourth immune suppressant, at this time can't think of its name.
At the first appointment the doc said that he didn't want to get to far ahead of himself in running down possible treatment paths because it depended a lot on how my body responded and he didn't want to overwhelm me. At this point we are kind of taking it step by step. If I don't respond they way they want then they are making a change and telling me what the next step will likely be.
Right now the big one for me, after meeting with the dietitian today is adjusting my diet. I have been eating relatively healthy since the new year as it was one of the goals I had for myself this year. I have noticed in the past week I have been losing weight with the time at the gym and the breathing changes. I have dropped about 5 lbs in the past 2 weeks. I have realized that I am going to have to start eating a 3000 calorie diet to maintain. I discussed some options at clinic today and went to the store to buy more protein rich items, veggies, and red meats (I have been showing anemic in my lab work).
The docs do feel that I have caught this early enough to at the very least be stabilized. I just kept telling them I didn't think I had an infection because I wasn't symptomatic. I didn't have a fever, no cough, no pain nothing. I had just noticed a was a little short of breath doing things I wasn't normally short of breath doing (running up the stairs). Like I said I noticed a small drop in PFTs but nothing major, but as soon as it was enough to call I called.
I haven't asked all of the options about treatment, but have called them every few days just to make sure things are still headed in the right direction.
As of right now my PFTs are stable, but my strength is increasing which is good. I hadn't really noticed it but my expiratory force had dropped since I got sick last summer as well. That number has increased back to what it was before I became sick with the start of Pneumonia last summer. They seem to take that as a good indicator that I may be leveling out, but told me that if I drop below 2.20 liters that I better be on the phone with them.
I truly do appreciate the input from you both. I have a good feeling about everything to this point and even though I am nervous it is more the not knowing what to expect with this new issue. As I become more aware of things and I think once I get my body back on track I will be able to relax more.
Thanks again for the input and advice. I appreciate it.
Lindsey
Lindsey
28 with Cystic Fibrosis
Double Lung Transplant at Mayo Clinic ~
May 2, 2007 |
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Hostess Rise'
Board Administrator
Username: Rise
Post Number: 17248
Registered: 05-2003
| | Posted on Thursday, March 08, 2012 - 01:24 pm: |
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Hi Lindsey
It is always a pleasure when you write in - you share so much.
About a healthy diet- it can be difficult to make changes but I feel eating very healthy is so helpful in many ways.
The changes that I have made with my second transplant was to go gluten free. I find that I can digest foods that in the past I had trouble with. I believe it can take a few months to really see a difference. I cannot say for sure- it seems that gluten free has helped me more ways than one. Less bloating in the belly, better PFT numbers, no mood swings and overall strength.
All of my improvements can also point to better workouts. Whatever changes I have made that are working for me hopefully will help the overall health of my body.
Ask your doctors if you can take Krill oil, cod liver oil in small amounts. I find time to eat foods that have anti-inflammatory properties. Sardines-nuts, seeds- avocados and now my new addition is goat kefir (sounds gross but it is delicious).
Practicing the lung sedating points from the Energy Medicine book that you have helps me.
I will share some more ideas that pop into my mind.
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Paul
Member
Username: Bullion78
Post Number: 6
Registered: 01-2012
| | Posted on Wednesday, March 21, 2012 - 09:18 am: |
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Hi Lindsey,
I really hope you have stabilized in the last couple of weeks and this post finds you well.
My name is Paul, I am also going through Chronic Rejection after 8 years of near perfect healthy lungs, I have posted on another thread late last year but I have gone from 3.90 FEV1 at the beginning of last year to now being at 2.20. To be really honest last year was a huge year of complacence for me in that I backpacked quite a lot throughout Asia and India over a few months (not the first time since transplant) but the I hadn't been to a clinic appointment in about 4 months, when I presented at the clinic in late Oct last year the FEV1 was down to about 3.20 FEV1 which really surprised me because I had not noticed a thing, I was adamant that they admitted me and start the process to determine what was going on, a bronch followed which revealed nothing as did CT scans etc, my exercise tolerance remained good and while I was worried it was not really effecting my life too much.. closer to christmas last year when I had another PFT my FEV1 had dropped further to 2.91 which triggered the decision to commence a 3 day pulse of methyl pred and a week later they had fallen further to 2.50. Back into hosp throughout Jan and then was started on a 5 day course of Horse ATG which up the last few days seemed to have steadied the ship. I have just reterned from another 2 weeks trip in Asia (albeit a much more relaxed and stress free holiday, resort all the way) and just the last 2 days my FEV1 has dropped further to 2.20 so I am not taking any chances and going straight to the clinic tomorrow for no doubt admission, really freaking a bit tonight hence coming on here and writing an essay. I guess that will possibly start the Rabbit ATG next? I am not too sure. The other thing that I thought I would mention was that I decided to pick up some montelukast (not told docs yet) while I was in Asia an I have commenced taking 10mg per day along with the AZ daily, Tacro, cellcept, pred 20mg so I will report back if there are any notable changes. cheers and thanks for listening, any advice is appreciated. |
Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 564
Registered: 12-2009
| | Posted on Wednesday, March 21, 2012 - 09:28 am: |
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Think the first thing you should do Paul is tell your team about the additional drug you started to take . . . may not interfere or have adverse effect but you never know. Makes it harder for them to figure out what's going on if they do not have the full picture . . .
Stay well,
Jack Hollenbach
Received double lung transplant August 2 & 3, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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Paul
Member
Username: Bullion78
Post Number: 8
Registered: 01-2012
| | Posted on Wednesday, March 21, 2012 - 10:09 am: |
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Hi Jack, I definitely will be! I asked them about the drug a few months back after reading a thread on here re: a european study being conducted into the effects of the drug with patients with BOS. The drug wasnt covered here so I managed to pick some up heaps cheaper in Malaysia, did my research and concluded that there are no interactions with other meds so all good.
Cheers and hope you are well  |
joyceg
Member
Username: Joyceg
Post Number: 4
Registered: 07-2011
| | Posted on Thursday, March 22, 2012 - 04:36 pm: |
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Hi, I also am in Chronic rejection, after 4+ years of doing really good. It seems that I came down with a virus, which had me in bed for one week, started the downhill cycle to CR. Since then, my FEV1 has been
0.64,0.59. and 0.62. I really try to eat as healthy as I can, do as much as I can, just got over some sort of flu, take Azithromycin 3 times weekly, and
its now becoming a struggle. I have an appt tomorrow at UCSF, (4 hrs from home) to get a CT scan, spirometry, neti pot, and clinic visit. I am back on O2 since the beginning of this, started out at 1 liter and am now at 2 liters.I have gone thru the Azithromycin and Prednisone infusions at local hospital under the care of local pulmo one time for a week. It did work and I was doing very good, then back to square one with another infection. Also, I have lost about 40 lbs since this all started. But you have me thinking about healthier food than I am eating now which I believed was healthy. So we shall see. joyceg
dbl. lung txp. UCSF 11/11/2007
COPD/Pulm Hypertension
Corning, CA |
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DAP1122
Forum Leader
Username: Dap1122
Post Number: 3175
Registered: 05-2008
| | Posted on Friday, March 23, 2012 - 06:57 am: |
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Joy, Will keep you in my thoughts and prayers. Please keep us updated when you can.
God Bless
DAP
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Lindsey
Member
Username: Lindsey3
Post Number: 93
Registered: 06-2007
| | Posted on Tuesday, April 10, 2012 - 10:13 pm: |
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Hi there,
Sorry for the delayed response. So much has been going on the past few weeks I have been semi overwhelmed.
An update for my "stuff." It turns out that I was stable until I came off the prednisone taper. I had a drop from about 2.35 to 2.25 with some extreme wheeziness and coughing over a week. I called and they brought me in for a bronch. Found that my lungs looked great with exception of some inflammation, but that my potassium was through the roof, my blood pressure was high, blood sugar was high, and my kidney function had gone to crap. They had to make some more medication changes, apparently the prednisone taper along with some of my other meds were causing the increase potassium, which contributed to the high B.P. and the kidney issues and the blood sugar was an issue caused by the prednisone. I was admitted over night since I was kind of at risk of having a heart issue.
I was out of the hospital 2 weeks after that and was back at the hospital for another bronch because I had a drop from 2.25 liters FEV1 to 1.85 liters over a long weekend. At that time they decided to change up my meds. I have been completely removed from Cellcept and placed on sirolimus 1.5 mg a day and my dose of prograf was decreased to 1.5 mg twice a day to balance with the sirolimus and to also help my kidneys out.
Since the hospital stay for the heart issues, I have had some ankle, foot and leg swelling which finally seems to be going away after about a month of issue. I went back to the doc yesterday for a follow up since the medication change and luckily I have seen a small increase from 1.85 liters FEV1 to 2.06 liters FEV1. I go back to clinic in 2 weeks for my complete work up for my annual appointments and my 5 years. I believe at that time I will be told their opinion of my "status."
At my last appointment I was told that if this medication change did not seem to help me that the docs would want to re-evaluate and possibly re-list me for another transplant. I was not ready to hear that and have started getting re-approved for disability and getting things situated in the event that I have to stop working. I also finally agreed to cut back my hours at work from full time to part time, but enough hours that I can still maintain medical insurance.
Overall I am feeling much better on the new meds. I don't currently have the "snap crackle pop" cough I had developed over the past few months. I feel better and am not as short of breath or inflamed feeling. At this point I will take feeling okay over a massive improvement. I was starting to feel like I had been beaten up by the end of every day.
Paul - that is one thing I can say is that I felt a difference very quickly fortunately for me. I check my pfts at home still, but rather infrequently (once every few weeks). I was cleaning the house and talking on the phone one night and noticed I was out of breath when I normally wouldn't be. I started out at 2.9 liter FEV1 and when I checked my pfts that night I was at 2.65. I called the next day when I was at 2.6 liters. For me the contributed my immediate issues to infection in my sinuses. I pushed he issue, had sinus surgery and did 3 weeks of aerosol abx. I still saw a decline after that sinus surgery and called back when my pfts dropped to 2.35 liters. Now I am sitting at 2.05 liters and am hoping that I can hold strong here at this level.
I wish each of you the best with your upcoming appts and hope that they can come up with a course of treatment that will work for you.
I unfortunately have to head out now, the bed is calling my name.
Lindsey
28 with Cystic Fibrosis
Double Lung Transplant at Mayo Clinic ~
May 2, 2007 |
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