Post Number: 1
|Posted on Sunday, February 12, 2012 - 05:45 am: ||
I am a double lung transplant patient as of Nov, 5th 2011. So far I am a survivor, thank God and thank Doctors.
I seem to be doing very good except for getting used to all the meds. I keep getting CMV and I get very very sick that only lasts a few days. Then I get a few days where I feel great. But, like lightning out of the clear blue sky I start to feel chills. They get worse and worse and I find myself under 2 or 3 covers knowing what will be happening next. I get up to about 103.6F every time. After that I wonít get into the details but it goes away just as fast as it hits me.
I take about 30 pills per day for rejection and stuff and for the most part I am doing good. My wife still works and my 9 year old daughter keeps me going so life is good. I just wonder if there isnít more that can be done about his CMV. Now even when I am feeling good I live in fear that any second BOOM there I go back to bed.
I keep having to get a PICC line put in so I can treat CMV at home. I have one now. This one didnít go in very well. It took them 4 tries to get it in and it hurts real bad. Itís getting better though.
Thanks for reading,
Post Number: 1
|Posted on Sunday, February 12, 2012 - 07:45 am: ||
my son just got out of hospital where he was diagnosed with CMV. transplant was 5 months ago. they wanted to do picc line and I asked to start Valcyte first. After one week on Valcyte the CMV level was normal. they said 3 negative CMV levels and he can go off meds. We've had 2 so far. Are you getting weekly blood tests to see CMV levels?
Post Number: 5307
|Posted on Sunday, February 12, 2012 - 09:26 am: ||
I know they kept checking mine. Since I had a transplant from someone who had all ready had it and I had not, they knew that I was going to get it, it was just a question of when. They had me on Valcyte for the first nine months of my transplant and then took me off of it, let me know what the symptoms were and let it take it's course. About two weeks after they took the Valcyte away, I got it. They put me back on the Valcyte and took away the Cellcept, I had more frequent blood tests. Once it was
gone, they tried to put me back on the Cellcept at half strength, but it came back, so they took me off of the Cellcept entirely. (Had problems with white cell count taking Cellcept) I take neither now. Gosh, I sure wish you luck with your dilemma!
Post Number: 553
|Posted on Sunday, February 12, 2012 - 09:32 am: ||
Congratulations on your transplant Rick, keeping in mind that the first year can be the roughest with your body getting used to all your new meds and being an independent breather. I'd ask my tx team about the Valcyte as Mindy suggests, I'm going on 5 years out now and I take it daily (hey what's 1 more pill right?) with no side effects.
With regards to the number of pills you are taking, during the first year this will fluctuate as your team adjusts levels - I am taking between 22 to 24 pills a day depending upon the day.
|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
Post Number: 50
|Posted on Sunday, February 12, 2012 - 10:56 am: ||
My name is Brian and I had a heart transplant almost 5 years ago. I too struggled with CMV flare-ups in the first year. Why do they keep giving you the PICC line to treat it? Are you getting IV Valcyte or are they treating it with something else? The crappy thing about CMV is that it IS always just sitting there waiting for an opportunity. In my experience though and from those who've also dealt with it, it's gotten better over time. I had the exact same symptoms as you... chills, fever, no appetite. I'd get into my bed for hours each day after coming home from work and some days wouldn't go to work the next day.... for a little while this would happen even with the Valcyte going. then, the valcyte would get a handle on things and I'd start to get severe headaches and increased BP from the Valcyte. We're talking headaches that require Vicodin to be tolerable. Anyway, after about 6 months this all went away and (knock on wood) I've not had to deal with it for the last 4 years, no CMV, no headaches, no Valcyte.
I understand what you mean about your child keeping you going. I've got two daughters 10 and 8 myself and they are definitely the reason I get up each morning. Good luck Rick! I'll be thinking about you.
Post Number: 3
|Posted on Sunday, February 12, 2012 - 12:51 pm: ||
I forgot to mention that my son was on 100 days of gancyclovir post transplant because he was negative and donor was positive. he went off on Dec 21. Went in the hospital on Jan 19 for severe ascites and horrible headaches. They found the CMV just because they tested for it as he had no fever or chills. The headaches turned out to be prograf toxcitity and the ascites we now learned is from a narrowed outflow valve. has anyone had this and anyone have suggestions?
Post Number: 2
|Posted on Sunday, February 12, 2012 - 06:19 pm: ||
Wow, nice to hear from people who understand. They told me I will be taking Valcyte for the rest of my long life. I really don't mind itís just when I have CMV I can't keep anything down. When I miss my meds I get real worried. What started me down the road of transplant was I had a tension pneumothorax and it colasped on my heart and killed me. My heart was stopped for 4 minutes. Surviving that was a total miracle and I then realized how bad my lungs were. I was on the list 3 months and got lungs.
The PICC is for 2 small spots of Pneumonia they saw in my lungs. So It's really amazing, they cut on you and they stick you and they saw you and they froze me (remove a mole) and they shocked me many times. Itís like mid-evil torture going to them docs. I had to see a nerve doctor for my numb feet and real bad headaches. They give me Narco for it. That just makes me feel good with a headache so oh well. Thanks everyone, I have no one to talk to that understands. I take 450MG of Valcyte twice a day. When I get a flare up they double that and drop my prograf a bit to let my own immune system help get rid of it. But through all this MAN can I breathe. Very nice. It's worth it.
Love to ALL Rick
Post Number: 5321
|Posted on Tuesday, February 14, 2012 - 08:56 pm: ||
Congratulations on your successful lung transplant - that is so awesome! I am sorry to hear that you are battling CMV. I was fortunate that I was CMV positive and my donor was CMV negative.
I didn't really have much of a risk factor for CMV, but I took Valcyte for 6 months post transplant.
I hope that your transplant team can come up with a good solution for getting the CMV under control. In the meantime - hang out here and meet lots of great people. There is always someone here that can relate to what you are going through.
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Be kinder than necessary because everyone you meet is fighting some kind of battle.