Post by Colleen-Pa on Nov 17, 2013 18:10:37 GMT -5
Hi everyone, been a while since I posted anything about my transplant and Jackie though it would be a good idea to update everyone and it is.
I am doing great for the most part, I have felt better this past year than I have in at least 15 years. I wonder how it is possible to keep feeling better?? ~ I still have issues with the migraines and stomach issues with the meds but even they have calmed down a bit, I actually went 6 months with out getting sick and that's the longest I have gone and this last time was milder than most episodes so for that I am grateful. My PFT's are still blowing at a bit over 100%!! Incredible isn't it??? Sometimes I have to pinch myself ~~
I attribute a lot of my success to having a strong mind and not worrying about every little thing...it is what it is and worrying ain't gonna fix anything, just make it worse. I have an incredible faith in God and thank him everyday. I don't know where I'd be without that.....
I would do it all over in a second even knowing the struggles with recovery, not that they are that bad but it is a bit painful but the team works hard to keep you comfortable.
If anyone has any questions, please feel free to ask, I'll be more than happy to answer. If your thinking about transplant my advise is go for it~~ Its incredible to be able to breath and live life again~~
Colleen, It's so wonderful to hear how well you are doing. I have followed you from the beginning of this journey and can't express how incredible it is to see the fantastic results. I'm sure that your experience with transplant will answer so many questions for those facing this choice. Thank you for sharing this with us and God bless you.
Post by Blossom/Jackie W. on Nov 19, 2013 9:01:11 GMT -5
Colleen... Thank you for agreeing to update e'one re: your transplant. We appreciate it!
You've come a long way baby! And it sounds like your living, and loving, every minute of your life!
I realize you're a lady of faith, and you try not to worry about every little thing but.... and I hope you don't mind my asking, but....
Do you ever stress at all before your check ups? Not just your PFT's but bloodwork, kidney function etc? And; if/when you get ill or not feeling well, and it's a new symptom (not like a cold or anything)surely the thought or concern might cross your mind about rejection? Speaking of which; is the rejection possibility on-going or just "x" number of years?
And; when you say you'ce actually gone 6 months w/o getting sick; what were you referring to?
Like I said; I hope you don't mind my asking but I know people are curious.
Post by Colleen-Pa on Nov 19, 2013 13:46:32 GMT -5
Jackie, i don't mind the questions at all~~I do my PTF's @ home at least 3X's a week so I will know if there's a change and this is how they try to catch rejection/infection early...if there's a drop of more than 20% you have to call asap. So this is why I really don't stress about my appointments. I do worry about my kidneys as my numbers were running a bit high due to the tacrolimus (main anti rejection med) and it was running high (the tacrolimus) on the blood work so they decreased my dose and the kidney function #'s came back down to the normal range. Kidney transplant after lung happens more than you think, I don't know the percentages but it does happen so I watch closely. I can't take advil, motrin, or any drugs in this class and have to check w/the team with any over the counter med for this reason.
The 6 months without getting sick is my stomach. I will throw up every half hour for like 12 hours and was doing this every 2 to 3 months and we just couldn't get a reason for it. Had all kinds of tests done but nothing conclusive came up. We think its just the meds and my body sorta purging the toxins out or something....who knows??? But I went a little over 6 months this last time so we'll see it it keeps getting farther apart. Adjusting to the meds has been a challenge for me. Its worth it tho, I don't like getting sick but it wouldn't stop me from doing it again. The next day I am fine, no residual from the day before~
I also do stress out if I am out and there's people around me coughing. I carry masks with me and not just the one's from CVS but the surgical ones that I have to order. This is my biggest stresser~ I avoid crowds in the winter and kinda hibernate. I usually do a lot of volunteer work but cut way back in the flu season. If someone is sick I will not go with them or to their house and tell them not to come to mine, most people understand. The possibility of rejection is always there I think but I just read an article that they are coming close to being able to tell if you are prone to rejection or not. I had a very mild case of it 3 months after transplant and I tell ya it was not fun. I was on 1500 mg IV steroids for 3 days and the side effects lasted 3X's as long as they said and I actually questioned it at that time if it was really worth it cause I was so depressed at about 2 months after but thankfully it slowly lifted and I felt much better. I dread having to go through that again if I have rejection but will tell them how bad it was and see about an anti depressant ASAP....do not want to ever feel that bad again.
Colleen, Thank you so much for keeping us up to date on your status post lung transplant and congratulations on doing so very well. I am still on the waiting list here in Vancouver, BC now at 38 months. It's a challenge as I'm sure you recall. I am really interested to hear of your "bumps" along the way as it gives me an idea as to what I might expect for myself, even though I know with this procedure every person responds differently and much is so new yet in this field.
What meds are you currently on daily and do you have to limit your exposure to children, I'm thinking grandchildren, with all the lovely germs they can bring with them?
Even though I haven't been there yet, I hear you when you say go for it and that all the recovery troubles are well worth it. I truly feel, and you seem to agree, that I will be able to deal with any problems that arise as long as I can breathe again. For me, there is nothing worse than not being able to breathe.
Post by Colleen-Pa on Nov 19, 2013 18:57:12 GMT -5
Hi Barbara, my meds have decreased a bit since transplant and I am on 1.5mg of tacrolimus 2X's a day, 2000 mg Mycophenolate 2X's a day, 10 mg's pred 1X a day, 1 baby aspirin, 800 mg magnesium, 2X's a day, daily vitamin and 1500 mg calcium and bactrim 800 mg 3X's a week. I was on a BP in the beginning but stopped that at 6 months I think, and an anti viral for the 1st year for CMV. I also had diabetes at first but when the steroids were decreased I went back to normal. You get used to the meds and the schedule pretty quick. I was so scared in the hospital that I would never get them straight but you catch on pretty quick.
As far as the kids you just have to be careful, if their sick stay away and you can't go near them for 2 weeks if they have had any shots, other than that they are fine, just use common sense and be careful and you should be ok. Carry masks at all times and wash your hands as much as possible. I hate the hand sanitizers with a passion and wash if at all possible. I feel that they just rub the germs in ~~ I buy wipes and carry them in my car and knitting bag and use them quite frequently. Do you get a flu shot?
Try not to get discouraged, my motto was "GOOD THINGS COME TO THOSE WHO WAIT" ....I was on the list for almost exactly 42 months. SO worth it. And your right, once you can breathe everything else just seems to fall in place. I have to tell ya when I woke up and they took away my cannula while I was sleeping I was in a panic and for months I would catch myself looking for my inhalers... I don't know why just out of habit I guess, it wasn't like I couldn't breathe or anything....
Good Luck with the wait and pray your call comes soon. Do you have anyone to update the forum??? It is so exciting to follow~~are you on facebook?? My daughter & sister kept everyone pretty much updated there and it was so easy. Looking forward to following your journey~~
Post by Colleen-Pa on Nov 20, 2013 22:38:51 GMT -5
Jim, thanks so much for the kind words~if I can help anyone by this it would be a good thing~~it can be so scary and if it can relieve some fear of the unknown then ITS good.
Jackie, I did end up in the ER for broncho spasms about 6 months before transplant~but I never was hospitalized for pneumonia or any other related lung issue.....always seemed to puzzle my Dr's~~ but I just wasn't prone to lung infections, thank God because I think if I had contracted pneumonia or any kind of lung infection in the year before transplant I am sure now looking back that it most likely would have killed me. I was prone to sinus infections but would catch them early so they wouldn't travel to my lungs.
It sounds like we have/had very similar situations Colleen. I don't get many chest infections either which amazes my doctors and have never been hospitalized, but I know with the stage I'm at now a major infection would probably be the end of me! I always get a flu shot and have had the pneumonia vaccine (and a booster) as well. I don't go out much so avoid germs that way and if any thing seems to be coming on I have my antis and prednisone at home as so many of us do.