| Author |
Message |
Alaskagal
Member
Username: Cheathers
Post Number: 141
Registered: 06-2011
| | Posted on Wednesday, July 24, 2013 - 07:04 pm: | 
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It has been a hard couple of months. I have had fungal and viral infections, sores in my mouth, lost about 12 pounds (not a bad thing, heh). I started talking some Ambien because I was desperate for sleep. Then my bp plummeted, and I thought that was the reason. But just not sure.
Yesterday's nephrologist visit, he called my surgeon for the kidney transplant down in Seattle, and they are thinking CMV, although they both were speaking Polish (really) so I didn't understand a thing. So waiting for test for that, as well as adrenal function. Everything seems to take longer when you live in Alaska.
But meanwhile, I might need to stay away from google. Sometimes trying to figure out this stuff can scare the crap out of you. Doctor was saying that if the CMV comes back positive, they would put a central line of Valcyte in for 3-5 days.
You know, we can do the very best we can for ourselves, but sometimes it is hard not to worry. Mindful meditation, I suppose I need more of that!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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miocean
Member
Username: Miocean
Post Number: 214
Registered: 07-2010
| | Posted on Wednesday, July 24, 2013 - 08:12 pm: |
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Dear Alaskagal,
I hope they get to the bottom of what is going on and I certainly understand Cyberchondria. If we believed everything we googled we all have been dead 10,000 times over and had a zillion different diseases.
I am sorry you are going through not feeling well and worrying. Please let us know what happens. Just out of curiosity, were you CMV+ or - before the transplant and what was your donor? I think others have come down with the virus after transplant with successful treatment so hopefully they will see your post and give you more info.
miocean
Diffuse Scleroderma
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ |
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Alaskagal
Member
Username: Cheathers
Post Number: 142
Registered: 06-2011
| | Posted on Wednesday, July 24, 2013 - 10:29 pm: |
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Thanks so much... good to be "heard"... by people who understand.
Yes, both my donor and I were CMV+... I will let you know how this works out.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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vince
Member
Username: Saintly1
Post Number: 11
Registered: 03-2012
| | Posted on Wednesday, July 24, 2013 - 10:29 pm: |
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Dear Alaskagirl,
I hope you feel better soon, I came down with CMV last Oct. & Nov. 2012, was in Hospital for few weeks, had to take Valcyte for few months, feel great now, I really hope you feel better soon & find the problem, also yes try not to believe too much online, it can really depress you, just follow ALL kidney doctors instructions to the letter & take the best care of yourself you can.
God bless you , Vince |
Alaskagal
Member
Username: Cheathers
Post Number: 143
Registered: 06-2011
| | Posted on Wednesday, July 24, 2013 - 10:56 pm: |
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THANKS Vince, it helps to hear from someone who has been there!
Were you and your donor also CMV+? Also, what were some of your symptoms?
Presently, besides the weakness, insomnia, and overall feeling terrible, my bp plummeted. Honestly, I eat such a pure diet, that I have been able to avoid bp meds, but my bp has been as low as 80/60. I am still not sure if that is the reason (I stopped it for 2 days, but took 2/3 of a 10 mg pill last night because I was desperate for sleep. It goes up and down...
THANKS!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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vince
Member
Username: Saintly1
Post Number: 12
Registered: 03-2012
| | Posted on Wednesday, July 24, 2013 - 11:15 pm: |
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Hi Alaskagirl,
I do not know I or my donor was CMV +, my symptoms for CMV, I was very weak, but my main problem was very painful stomach pain, I could not eat much at all, my stomach pain was terrible, I feel great now, I received kidney transplant on July 5, 2010, watch yourself that is really low BP, Alaskagirl, some advice, take all your medications as directed, We have been blessed with a gift of Life, we do not want to lose this gift,Please take care of yourself.
Vince |
Alaskagal
Member
Username: Cheathers
Post Number: 144
Registered: 06-2011
| | Posted on Thursday, July 25, 2013 - 12:08 am: |
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Thanks so much Vince. Yes, I truly agree with you.... grateful has been my theme for some time. I am SO careful to take my meds on time, and to only eat things that will help my body, and not harm it. My donor offered a kidney when I had no idea what I was going to do, and did not ask anyone. Such an incredible gift.
If you haven't seen this, it is a blog that a friend put together to help us, and my donor and I shared out experience: http://sidney.papashome.com
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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vince
Member
Username: Saintly1
Post Number: 13
Registered: 03-2012
| | Posted on Thursday, July 25, 2013 - 10:22 am: |
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Hi Alaskagal,
Nice to read your message, Glad you our serious about your health & well being, I know of a few patients that do not take care of them-selfs & they wonder why they have so many problems, I you feel better soon so You can enjoy your priceless gift of health. Alaskagal, I always whatever I am going through, I am so thankful always because things could be so much worse,
I am 52 years old now,I Feel like 25 years old, I am so very Thankful for this Precious Gift of Health. I have not yet visited thanks for the info. Vince |
Cora
Member
Username: Cora
Post Number: 505
Registered: 06-2007
| | Posted on Thursday, July 25, 2013 - 12:22 pm: |
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I had CMV and had some problems, but that was related to other issues. The CMV itself was not a big deal and resolved fairly quickly with oral meds. My bp did drop when I had it though.
Try not to worry too much. I know how the internet can be scary. I have heard of many people who had cmv and got over it quite nicely.
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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Alaskagal
Member
Username: Cheathers
Post Number: 145
Registered: 06-2011
| | Posted on Thursday, July 25, 2013 - 01:54 pm: |
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Thanks Vince... it seems that the gratitude is so immense sometimes, that it will take a life time to really begin to comprehend, doesn't it?
Thanks Cora, and so good to know about the blood pressure. I was thinking that it was a rare side effect of the Ambien. But I quit it last Sunday, but am still having the bp plummet, as low as 80/60. I really could use a night's sleep, and honestly, it takes sometimes most of the night to begin to start to sleep... which takes up too much morning. I hate adding another drug, but sleep is so important, and I have tried everything. But maybe it is the infection and not the Ambien!
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Alaskagal
Member
Username: Cheathers
Post Number: 153
Registered: 06-2011
| | Posted on Friday, August 02, 2013 - 06:31 pm: |
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UPDATE!!!!
I am totally confused. I FINALLY got a call back with results of CMV, which they said was negative! I really don't know quite what to think. On the one hand, thanks God!! But the other hand, what the heck has been the issue for the last two months. Could it be the thrush (not just my mouth but systemic) and the herpes (on my mouth and in my nose) and the anti fungal making me a mess, causing me to lose 12 pounds and totally unable to sleep? What about the blood pressure completely dropping to as low as 80/60?
Well, I am on the Myfortic at a dose lowered by 2/3, and 10 mg of Ambien at night, and doing much better... I just don't know. But my gosh, what a long wait, and a lot of worry!
Now I shall get back to life, as best I can and just look for the best. Anyone else have a strange issue like this?
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Babbie
Member
Username: Babbies_kid
Post Number: 1
Registered: 04-2014
| | Posted on Saturday, April 26, 2014 - 01:07 am: |
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Hi, I had my kidney on Oct last year..my white blood cell keeps dropping and now been told I have CMV which right is not a threat..so they're keeping an eye out on my blood work..but I am weaker then I was after the transplant..I could barely walk at times..I asked my doctor why and he simply said, I don't know!! I'm tired of being weak, I stay home because I have a hard time walking with no strength..is this normal?
thank you |
vince
Member
Username: Saintly1
Post Number: 16
Registered: 03-2012
| | Posted on Saturday, April 26, 2014 - 08:20 am: |
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Hi Babbie, This is not normal but then there is no normal re: Kidney Transplant, have faith in God and your kidney doctors, Babbie you also want to be a Informed kidney transplant patient. God bless you and hope You get better soon. |
Alaskagal
Member
Username: Cheathers
Post Number: 178
Registered: 06-2011
| | Posted on Friday, May 09, 2014 - 08:19 pm: |
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Oh gosh, sorry I didn't see this sooner, I am so sorry Babbie. Dang... I do NOT like that reply from your doctor. What does your transplant center have to say about this? And I cannot imagine that CMV is "not a threat". Please let us know how you are doing... and if you have improved or found some treatment.
Blessings!!!
Heather
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18051
Registered: 05-2003
| | Posted on Saturday, May 10, 2014 - 06:11 am: |
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Hi 
I wanted to add my two cents if you all don't mind. Not a kidney pt here (double lung)
For the past two and half years I have had low EBV levels (not super low) I was given oral drugs (did not work) then IV and that did not work.
What is finally working for me is taking Prograf on an empty stomach which allows me to take three mg less than I was taking before.
I had asked my doctor about something that I saw on Dr. Oz. She said she did not know anything about it. I told her I tried and it and it
happened to have helped me a lot. Camu which is a fruit new to the US and is very high in Vitamin C.
I am feeling Fantastic again!
I know the feeling that you do not feel like doing much.
If you are eating healthy foods, getting your rest and still do not feel well, perhaps the doctors have you taking too much medications?
Don't be afraid to speak up and ask them to explore other options.
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Alaskagal
Member
Username: Cheathers
Post Number: 179
Registered: 06-2011
| | Posted on Thursday, May 15, 2014 - 12:46 am: |
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Wow Hostess Risé, that is VERY interesting! I wonder if I could get some of that here in Alaska. Do you get Camu as a dried, or canned, or fresh fruit? My whole family has always been very susceptible to cold sores/herpes/EBV. All the drugs have such hard reactions, and of course increase the level of the immunosuppressants. So far I did a test with my nephrologist to see if L-lysine had any effect on the level of Prograf, and it didn't, so I am taking it every day, but I still drag, really drag.
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 18057
Registered: 05-2003
| | Posted on Friday, May 16, 2014 - 10:49 am: |
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Hi Alaska gal
I buy my Camu from Navitas Naturals.
http://navitasnaturals.com/product/443/Camu-Powder.html
It is less money at Whole Foods.
I stopped taking it for a few days and can tell I need it again. So thanks for reminding me
I still would not take the L-lysine. Instead I would eat foods that are rich in L-lysine.
See what you find on diet on the internet about viruses.
I believe dandelion is good for viruses. The taste is quite bitter. Bitter foods are important for good digestion.
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