I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kellyt on August 17, 2009, 03:45:21 PM
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I've posted earlier that my creatinine has been creeping up. My last labs three weeks ago showed a decrease from 1.89 to 1.85. Lab results from the 13th apparently show my creatinine has jumped to 3.0. I was sent today for an ultrasound and another renal panel. I should know something by tomorrow morning. To my knowledge nothing else in my labs is strange, except for my WBC (which I also mentioned in earlier posts had been high, as well).
Anyway, I'm a little freaked out, but I'm hoping it's a treatable undetected virus and not rejection. I have been having some bowel issues, so maybe I have a "bug". Any thoughts would be appreciated.
Thanks ya'll. :cuddle;
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It seems like its always something to worry about after a transplant. Will be thinking about you as you are going through this.God Bless!...Chris :cuddle;
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Oh, kelly, I am sorry to hear this, but strongly believe that whatever it is, they have caught it in time and your creatinine will settle soon.
I´ve only had two official rejection episodes in my life. The last one was almost 25 years ago, and my creatinine was at least as high as yours - and I was still a kid. My kidney was thought to be about 50% scarred from the biopsy results. I guess my point is even if it is rejection, your kidney could still be with you for the long haul. I´ve got fingers crossed for you. :cuddle;
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Kelly, I need to live closer! I want to be there if you need a biopsy. Just to hold your hand. I will say lots and lots of prayers for good results. We'll think positive thoughts. Sending you love :cuddle; :cuddle;
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Hi Kelly,
I hope they can figure out what's happening and help bring your creatinine back down. :cuddle;
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Along with fighting infection, white blood cells also help produce, transport and distribute antibodies to build the body’s immune system. If you are not getting enough immunosuppressant the white blood cells can attack the foreign object (transplanted kidney.)
A high WBC could mean infection, inflammation or allergy. Do you get urinalysis each month?
The Signs of Infection Include:
- Fever: a temperature greater than 100 degrees Fahrenheit.
- Shortness of breath
- A productive or persistent cough
- Persistent pain such as an earache, stomachache or headache
- Chills
- Nausea, vomiting or diarrhea
- Swelling, redness or tenderness in an area of skin
- Skin blisters or sores
- Wound drainage
- Neck or joint stiffness
- Confusion, lethargy or alteredmental state
- Progressive weakness
- Sore throat
A high WBC could mean a worsening of insulin sensitivity. Have they been checking your blood sugar levels?
I know you've read all this before, but here it is again.
Rejection
The body recognizes the transplanted organ as a foreign body and tries to destroy it
through a process called rejection. Rejection can be broken into 3 types:
1. Hyperacute- this occurs within 24 hours of the transplant. This is
rarely seen with today’s blood tests done before transplant (crossmatches)
2. Acute Rejection- usually occurs after the fist week. The greatest risk occurs
during the first 3 months after transplant
3. Chronic Rejection- can occur months to years after transplant.
The anti-rejection medications will help to prevent and control this process.The
transplant team carefully monitors you for the signs and symptoms of rejection.
Early diagnosis is important because rejection episodes can be treated and reversed.
Generally, you will be admitted to the hospital for part or all of the treatment.
Medications such as prednisone or thymoglobulin are given in your vein. You may
be able to finish your treatment as an outpatient.
Signs and Symptoms of Rejection:
- Abnormal laboratory test; an elevated serum creatinine and BUN.
- Fatigue, lethargy
- Pain over the transplant
- Decreasing urine output
- Fever
- Weight Gain
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Thanks Karol. And Paris, I wish you and I lived closer, as well. I would have been there for you during your IVIG treatments in a heartbeat! :cuddle;
I received a call from my doctor's office roughly 15 minutes ago and, of course, only spoke with a nurse who was unwilling to give me answers to my questions. Apparently, I have (basically) Post-Transplant Nephrotic Syndrome. I'm holding fluid around the new kidney. ??? That's all she would tell me.
My Neph has scheduled me for an 8 a.m. visit with a post-transplant Nephrologist at the clinic and basically he is "putting me in her hands", as she is a part of the post transplant team. She will discuss with me my recent labs, the ultrasound, treatment/prognosis.
Anyone have this post transplant? Any information would be appreciated. I'm Googleing, but I keep getting stuff that I don't understand and/or find helpful. I'll continue to search though. :thx;
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Healing thoughts for you Kelly.
Let's hope that this is just a bump in the road. :cheer: :cheer:
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Kelly, I hope you get more answers tomorrow and also that they can treat it and stop it. You'll have many of us there tomorrow with you in spirit and also back here waiting for news. :cuddle;
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Keeping my fingers crossed for you Kelly. Hope all works out well. You're in my thoughts and prayers.
We got a meeting in Vegas planned!!!
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Thanks Friends. I appreciate the good thoughts. I should know something by noon.
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Good luck Kelly :cuddle;
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Kelly, I had a pocket of fluid around one of the kidneys I got. I had gotten two pediatric kidneys. I was told that one might have to come out. They did a proceedure, I can't remember the name. They can put a drain in to relieve the fluid. When they did mine they found that the smaller of the two kidneys was draining slowly. I didn't have to have the drain kept in. Good Luck to you. Transplants are certainly a roller coaster ride. :grouphug; :grouphug;
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Kelly I bumped the thread of when I went through what I did. :grouphug;
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Thanks Ramona. Was it considered a "rejection episode"? I'm still very confused and mad my doctor didn't speak to me directly. That leads me to believe it's not "serious", as I do believe he would have talked to me. ???
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I am hoping for the best for you! :cuddle;
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:cuddle; Hi Kelly. I have just caught this tread.
Your Doctor is probably transferring you to the Post Team as they are more experienced with the problem you are having. Maybe he didn't have the answers he knew you would ask! :waiting;
I am sure they will be able to treat the fluid issue and reverse the problem. It is amazing what they can do these days. I will be think ing of you. :grouphug; :grouphug; :grouphug;
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Thinking of you.
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Hope it all turns out well for you Kelly. Please let us know as soon as you can, we will all be thinking of you.
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Hope everything works out for you. i have been going through some issues lately as well. im sure they will get to the bottom of it.
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Thanks Ramona. Was it considered a "rejection episode"? I'm still very confused and mad my doctor didn't speak to me directly. That leads me to believe it's not "serious", as I do believe he would have talked to me. ???
No, they were just confused about the fluid and where it was coming from.
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You have been in my thoughts all day. Waiting for good news :thumbup; :grouphug;
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Kelly..
As you know I had more than one "rejection episode". I still fear that more will come. I had to have fluid "tapped" from my belly near the new kidney about 4 months post transplant. The pressure from the fluid did effect my creatinine. I haven't had any issues with fluid since. They tapped and drained it (painless procedure) and sent it to pathology to make sure it wasn't a leak of urine.
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Thinking of you Kelly. :grouphug;
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Waiting for news and hoping for the best, Kelly!!!
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Kelly, saying lots of prayers :cuddle;
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:cuddle; Kelly, we are waiting. :bow;
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:waiting; Hope to hear soon Kelly. :cuddle;
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I hope that this is just a bump in the road and creatinine goes down. Jaclyn is back in the hospital with a spike in creatinine. The doctors were having a difficult time getting her prograf levels high enough. She was not absorbing it so they gave her one dose of an anti-fungal med that helps prograf absorption and her prograf level went from 9 to 16.7. The Nephrologist has indicated that the spike in Prograf could have caused the spike in creatinine, which went from a baseline of 1.0 on Sunday to 1.8, Wednesday :stressed; The Nephrologist also indicated that Jaclyn may be drinking more fluid than her bladder can handle, putting too much pressure on her kidney.
Anyhow, we will be in the hospital until the issue is resolved. I hope that our issue and your issue is just a small glitch and we are back on track with healthy, happy kidneys soon. It helps to read that others have had similar issues and are back on track.
Kelly- Jaclyn and I are praying for you and sending lots of positive vibes your way. Please keep us posted. :grouphug;
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Thinking of you both Kelly and Jaclyn and hoping for a simple quick resolution to this glitch. :grouphug;
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Just caught this thread thinking of you :cuddle;
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Waiting to hear good news on both fronts. :cuddle;
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Hey Kelly, hope all is well. :grouphug; :grouphug;
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:waving; Kelly.....
Thinking of you and waiting on any news. :cuddle; :grouphug;
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Kelly - We are praying and sending lots of positive vibes your way.
Jaclyn's biopsy got canceled a couple of hours prior to the surgery. ;D The doctors say that Jaclyn is very sensitive to Prograf and had a Prograf spike on Sunday due to a med they added to help her absorb the prograf better. The spike in prograf caused vessels to constrict causing her creatinine to spike. Once they controlled the prograf levels they expected the creatinine to start decreasing, but it took 48 hours. Jaclyn is still being monitored overnight in the hospital, but things are going well. It is such a balancing act with all of the meds.
Kelly - I know it is hard to be optimistic, but there are so many things that can be done to resolve these issues. I hope they resolve your issue quickly and you and your kidney are healthy and happy very soon. :grouphug;
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:grouphug; :grouphug; :grouphug; :grouphug; Kelly :grouphug; :grouphug; :grouphug; :grouphug;
Susan- Maybe this prograf problem is just something with being 7 weeks out...my level went from 7 on monday to 11 on Thursday at clinic (13 hours after the previous dose). But my creatinine stayed down at 1.1, which they were surprised at, so they said they'll just see what the level is next Monday (which they won't get until atleast Thursday, since I mail it in! :banghead; ). I'm hoping Monday my creatinine is the same.....
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Ok...all the way home from work I thought about this thread. Now I am here checking and no news.....Sigh......I am not a patient Wench!
Hoping no news is good news. Prayers for Kelly.
As for Jac....when my prograf level got up to 12 my creatinine spiked....so I am sure at over 16 that would happen. Best of luck!
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Kelly, I hope all is okay. :grouphug;
and for Jaclyn too :grouphug;
:grouphug; :grouphug; :grouphug; :grouphug;
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Hi everyone. Sorry no contact for the last few days.
I went in Tuesday as directed and ended up being admitted. After being placed on or under every machine in the Radiology Department on Tuesday, including a really fun intravaginal ultrascan to be sure this "mass" wasn't an ovarian cyst, I woke-up Wednesday morning knowing exactly what I knew going into the clinic Tuesday morning, which was there is a rather large fluid pocket that is/was just below my kidney. However, the problem with this pocket of fluid was that it was positioned just so that it was pushing on my new kidney and constricting the ureter so that the kidney could not drain all the way causing urine to backup into the kidney (swelling the kidney).
Wednesday afternoon I finally got the fluid drained (250 cc's!!) and was returned to my room with a Bandaid over the drain site and a poorly 1/2 shaven....well, you know. :waiting; That is how low the fluid pocket was - below my kidney and pressing on the kidney and constricting the ureter.
Hoping that my creatinine results in the a.m. would have dropped after the fluid was drained, results in the a.m. showed that it had in fact went up from 2.6 to 2.8 :stressed; However, the fluid was found not to be urine (thank goodness), but caused by a lymphoceal. Had it been urine that would have meant that my kidney/ureter was leaking somewhere and surgery would have been needed.
Because there was no drop in the creatinine another ultrascan was done and it showed my kidney to still be enlarged and holding urine. I was told then that they needed to go in and "perforate the kidney" and put in a drain to release the backed-up urine and pressure. I was so scared, but had no choice. Yesterday they took me down and set a drain in the kidney. I have this nice little bag ever so gently hanging from my tummy. It filled up a few and drained quite a few times, both with the backed-up urine in the kidney, as well urine currently being made by the kidney.
However, creatinine this morning only dropped from 2.8 back to 2.6. :stressed; A drop nonetheless, but not what we were hoping for. My post transplant doctor said that "The kidney is working well, but we want you to start urinating more into the toilette". Meaning that fluid will take the path of least resistance and right now the easiest way out is the set drain. Hopefully, the ureter will open back up and the urine will start flowing into the bladder. If not, then we will have to put a stent back in place. All the while we are all praying that no permanent damage has been done to the kidney. We are now on a mission to keep my Prograf level between 6 and 8, and the Cellcept has been stopped for the time being.
I was sent home with the drain in place and I go back Monday a.m. for labs and will see the doctor Tuesday. Hopefully the creatinine will start coming down (which he is confident it will do now that the kidney has drained), but he wants to wait 10 days or so before setting a stent (if needed at all).
What a crazy week. I'm terrified. I feel fine. It's good to be back. :waving;
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:cuddle; I'm so glad to finally hear from you! Oh goodness! You've been through so much these past few days. I hope on Monday you will have good news with your creatinine. Hang in there little kidney! :cuddle;
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I am so glad to see you here! But, I can't believe all you have been through. Most of it sounds horrible. Now we will pray very hard for this kidney to get back on track. Tell Charles he has to email me if you ever go missing from here again!! It was hard not to think bad things when you were gone for days. Now rest and do everything you are suppose to do. (Nothing!) And we will wait patiently for Monday and good lab results. Love you!!! :cuddle;
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I hope things get better Kelly! :grouphug;
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:cuddle; :cuddle; :cuddle;
Poor Kelly - I hope the numbers go the right direction and you can relax!
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Same type of fluid I had Kelly....and the creatinine will go down. I promise. You've got to get back on the straight and narrow....so we can meet in Vegas and bend hell out of the straight and narrow!
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How long did it take for your creatinine to go down, Wenchi?
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Took about 5 days if I recall....and its never gone as low as it was. But I have been constant and steady now for several months, so its all good.
If things dont drain...get that stent in there....backing up will do more damage than anything. Pee girl...pee!!
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so happy to hear that you're home :cuddle;
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Kelly - We are praying and sending positive vibes your way. Jaclyn was admitted on Wednesday night and will still be in hospital tomorrow, still being monitored although creatinine is at 1.2-1.3. There always seems to be a bump or two in the road in the first year and a kidney tune-up or slight maintenance work needed. Good luck and we are crossing our fingers, toes, eyes, etc for good news next week. Go little kidney GO! :grouphug;
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:grouphug; Oh Kelly, I having been thinking so much about you. I hope they get this resolved. Get that stent back in so the flow can be right. Glad you are home and pray that your numbers come down. I look forward to hearing a good report from you this week. Get plenty of rest and drink tons of water, if you can. :cuddle;
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Thank you all so much. I hope everything turns around for Jaclyn, as well. I hate being in the hospital. The food is horrible, the bed is uncomfortable - I hate everything about it! I'm super glad to be home, but am finding it difficult with this silly drain bag hanging from my side. Oh well, hopefully just a few more days. AND hopefully they tell me I can shower next week. I'm sure I stink.
My kidney is still producing a good amount urine and I'm starting to pass more through my ureter and into the toilet. I wish it were more, but at least something is getting through. I hope it's not urine from my native kidneys. That's what the doctor said it could possibly be. :(
Anyway, I'm looking forward to getting my labs done tomorrow a.m. My creatinine will hopefully be in the 1's.
Love to you all!
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Pee is GOOD! :2thumbsup;
Glad to hear you are doing better. I've been thinking of you.
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Kelly, I'm so sad you've been going through all this but now I'm just hoping for excellent news from tomorrow's labs. You and Jaclyn have been constantly in my thoughts. :cuddle; :cuddle;
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Lots of prayers coming your way Kelly.
Same for Jaclyn - hoping all turns out ok.
:pray; :pray; :pray; :pray; :pray;
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Hope things get better for you soon!!! just a small hurdle to overcome :cuddle; God Bless!! Chris
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just stopping in with a :cuddle;
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:cuddle; Hope the numbers are down on Monday.
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:pray;
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Went in for labs this morning and called about 1:30 p.m. for my results. The nurse said my creatinine was 2.9 and my Prograf level was above 8 (too high for the situation I'm in right now). What? How could it possibly be going up? She said she would show the results to the doctor and see what he says and she'll call me back.
2:45 p.m. she calls back. "Kelly, I am so sorry. I was looking at the wrong labs. Your creatinine is 1.6 and you Prograf level is 6.7. :Kit n Stik;
:yahoo; :bandance;
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And did you thank her for the hour plus of high BP??
Kidding aside, I'm glad for this good news.
Aleta
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:bandance; yay Kelly :bandance;
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Worse than that Willowtree, I was thinking (only thinking) "Why do I have to wear this stupid drain bag if my creatinine is going to continue to climb? I might as well rip it out!" Yes, I get emotional. But I soon calmed myself and just sat in the quiet for a while thinking about what it all meant. I was so relieved to get the 2nd call with the admitted mistake that I broke down and cried. All better now, though. :)
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No one knows how much simple numbers can effect us. Just one number makes such a difference. The nurses read these numbers all day long never realizing how "over the edge" we can get with the wrong numbers. I am sorry, Kelly, for the hour of agony, but am really glad she called back and didn't wait to tell you. I am thrilled the creatinine is 1.6 :2thumbsup; :yahoo; :clap;
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Sometimes a good cry is just what the doctor ordered, Kelly.
I know medical workers are over-worked, but they just don't seem to realize how much a simple slip can hurt.
Let's keep the good numbers coming! I hope this means that you'll be on your way to LV!
Best wishes,
Aleta
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:cheer: Kelly. Keep drinking and peeing. :cuddle;
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I think a good cry rids your body of toxins, both emotional and physical ( in my mind anyway) Glad your numbers are so much better...see I told ya!!!
:sir ken;
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:flower; Awww Kelly - I am sorry they scared you! (Scared me too!)
Your 1.6 is something to celebrate!! :yahoo;
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:bandance; Thats great Kelly its on the way down :bandance;
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:yahoo; so happy to hear that the numbers are going :thumbdown;
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:flower;
Music to my ears Kelly!!! :cheer:
I think I will do a little dance now........... :bandance; :bandance; :bandance; :bandance; :bandance;
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:2thumbsup; Love the direction of your creatinine numbers! Decreasing creatinine is always good news! I know that Jaclyn's issue will be resolved soon, but she is still in the hospital being monitored. They did her 3 month biopsy today, at 7 weeks. Expecting it to be fine, hopefully just issues with prograf absorption, but she has been in hospital since Wednesday.
Jaclyn and I are very excited for you! Sorry they made a mistake on your first numbers. They don't understand that our lives revolve around those numbers. Lots to celebrate. Go Good Kidney Go! :clap;
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Good thoughts and prayers for Jaclyn!
I saw the doctor today and discussed both the good news and the bad. The good news being my creatinine and the bad news being I have to have this drain in for four more weeks! He's putting me back on Bactrim to hopefully avoid infection. Plus another medication. Four weeks is going to be tough. This thing is always in the way. Our main concerns are 1) infection and 2) accidentally pulling out the drain. That would be bad!
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thinking of you and sending a :cuddle;
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:grouphug; I'm glad your number are better!
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He's putting me back on Bactrim to hopefully avoid infection.
The day after I take the Bactrim my Creatinine spikes Kelly. So don't be alarmed if yours plays up a bit too.
Did you manage to work out a waterproof dressing? Four weeks will go quickly. :cuddle;
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Thanks.
We placed plastic wrap over it and taped it down on all four sides with packing tape. I stood in the shower holding my drain bag with one hand and my other hand over the covered dressing. My husband helped me out. I hope the time flys