Called! Waiting, waiting....

[KarenInWA]

I had a drain for my tx surgery, and a larger drain for my post-biopsy injury emergency surgery. I personally am all for the drain. One of our own on this website had a tx back in May, and she ended up having to go in for surgery after being discharged due to fluid buildup around her kidney. She did PD for many years. Her IHD name escapes me, but those of us on Facebook know her as Lisa.

For my biopsy-induced hematoma catastrophe, I drained 660 ml overnight after the surgery, which happened at night. I wouldn't want to know what would have happened without that drain...

I also had the neck line both times, too. They put it in when you're under, and take it out before you go home. I think it's a way to save your veins in your arm, as well as a way to do multiple things in a fairly easy way. Yes, it's annoying to have on you, but it's only when you're in the hospital, thankfully.

Has anyone here ever heard of tx hospitals having shared rooms for tx patients? Mine does not do that, but I learned recently on Facebook that apparently the Cleveland Clinic does. I can't even imagine that!

KarenInWA

[Deanne]

I can't imagine a shared room, either. The drain is a pain, but I see the necessity for it. I was good with the neck line, too. Daily blood draws were a breeze with it.

The antibiotic is bactrim. The anti-viral is acyclovir. I don't remember how long I'll be on bactrim. Acyclovir is just for 2 weeks.

Prednisone in the past was to try to put FSGS into remission. I was spilling 10 grams of protein. It brought this down to 3 grams and bought me several years.

Mom chilled out overnight. I don't think she realizes she has mental health issues. We went shopping today and my legs are done now. I was trying to hold off on the Tylenol until bedtime, but I had to cave in. They told me more than 3 doses a day, so I'll need to go back to an oxycodone before bed. Tomorrow is my first clinic appointment.

[MooseMom]

Wow, shared rooms?  That seems counterintuitive.

I had daily blood draws from my IV line sited in the vein on the back of my hand.  Still don't understand the need for something as invasive as a neck line, but there you go.

I'm allergic to Bactrim (hives from Hell), so I had to have that pentamidine inhalation therapy for 6 months.  It was a pain, but at least it meant fewer pills for the first months post tx.

Deanne, I took cyclosporine to put my fsgs into remission, and it bought me time, too, but once my gfr fell below 18, my neph decided that the cyclosporine was now becoming toxic.  It's a fine line.  It seems that people with fsgs are treated with either cyclosporine or with prednisone.  I guess it depends upon the neph.  Mine told me he didn't like the side effects caused by pred, so post tx is the first time I'm encountering this drug.

I hope your pain is better tomorrow, and I'm hoping that you have good news to share with us after your clinic appointment.  And I hope things get better with your mom!  Don't want to have to deal with these kinds of issues after a kidney transplant!!

[lainiepop]

Hope clinic goes well Deanne, and glad u are out of hospital!

I had a drain and neckline, i asked about them before hand as they were in the literature with what to expect to be hooked up with when u come round. The neckline was great as they didnt needle me for blood for a few days (i begged to keep it longer lol) , they said they couldnt take the blood from the iv in my arm as that was used for fluid and pain relief etc it wouldnt give accurate results. Think the neckline was also in case of emergency dialysis if kidney didnt kick in (i think, not sure on that point, and obviously i was a pre-emptive tx patient with no cath or fistula so made sense to me, but everyone else on the ard had them and they werent pre-emptive.)
The drain was a pain, literally! It limited my movement but it let a lot of fluid or whatever off, i had a pool of it i think cant remember, i remember being in agony one night as someone had turned off the suction and i could barely breath til nurse put it back on what a release!, i had it in a few days longer as my abdominal surgery was more complex with the unusual bladder position etc. And oh my goodness did it hurt coming out, ouchy ouchy ouch!!! (helped tho that the rather young, hot, doctor who took my blood every morning removed it, ll the others just had the nurses do that and their blood ) I'd heard about the drain before, from when i realised i might have a c section with my daughter, apparently u sometimes have them during this and the women were describing the pain of that worse that the section or birth, thankfully i escaped it for that Dont know why some have it and some not tho?

Well being in the UK, i didnt  just share a room, we are on wards!! I had 3 others on my ward and that included a bathroom to share. Way better than maternity wards tho where i was with 5 other mums and babies all cramped in like sardines and 2 bathrooms between the whole floor! I did manage first time round, and for a few days 2nd time to have a room to myself because i am high risk cos of kidney (one perk of being me )
Oh my goodness the tx ward was awful could get no rest at all (the maternity u kind of dont expect it so much, what with babies crying including yours), my tx ward was full, after me, which was pre-emptive my surgeon performed 3 more txs where people were called in so they were all surprised and happy, but the woman opposite me bless her was 72 and im not joking snored like a foghorn all night and day!! Then u have the other people not understanding how to use headphones and watching their tv for the ward to all hear, not to mention machines beeping all day and night lol. Only plus was always someone to chat to And tbh cant really complain as we don't pay for it and i get all my prescriptions free too, so u take the good with the bad Oops gone on a bit hope u enjoyed the insight into uk hospitals lol.

Anyway take care and update us soon Deanne xxx

[MooseMom]

lainiepop, I was living in the UK when I was pregnant.  I was diagnosed with pre-eclampsia (didn't know about my kidney disease at the time) and was in hospital for ages.  I was in a room at the end of the corridor in the maternity ward; my bed was one of three.  We were all antenatal, hence being separated from the other mums.  It was at the end of June, and omg was it hot!  No air conditioning, sharing one bathroom, no tv or any amenities at all, a shared kitchen space where we'd go and make our breakfasts ourselves.  But I think all of that saved me from going insane.  My roommates and I would stay up through all hours of the night just talking and having fun.  I got to meet expectant mums with all kinds of experiences and reasons for being in hospital.  One West Indian lady was carrying twins and was in hospital because of some complication that resulted in her having so much swelling that her ankles had disappeared.

She was really upset that she was unable to get to her hairdressing appointment.  I mean REALLY upset.  She explained to me that the texture of West Indian hair was such that you couldn't shampoo it because the water wouldn't get to the scalp.  Instead, to get her type of hair and scalp really clean, it had to be steamed.  I thought that was fascinating.  She begged and begged for her doctor to let her out for just a couple of hours.  He finally relented, she went to the hairdresser, and you guessed it, she went into labour while there.

Once I had my baby, I went to the maternity ward, and it was hell.  I had a bad reaction to some med and could not sit up because doing so made my head feel like it would explode.  It was terrifying.  The consultant anesthetist was unavailable as it was the weekend, so I had to lie flat on my back for the entire weekend.  When she finally returned, she took me off all meds, and I was OK.  In all, I spent 6 weeks in an NHS hospital, and it was quite the experience.  On the plus side, I got good care, and I didn't have to pay a single pence.  I can't imagine what my bills would have been had I been in the US.

But back to you, Deanne, I'm thinking about you and am hoping that all is going well at your first clinic appointment.  I can't wait to hear about it!!

[kelliOR]

Deanne !!!

     I haven't been on IHD in such a long time...........So excited to read about your transplant.   Seems like a lifetime ago we met at Powells.  Did you have your surgery at OHSU or Legacy?
I hope you are healling well.   What a wonderful gift...

Love, Kelli

[Deanne]

It's been ages Kelli, do you ever come up here anymore?

My first clinic appointment went well. They said I'll likely need to settle with "excellent" function with a baseline creatinine of 0.75 instead of "outstanding" with the 0.5 I had while connected to IV fluids. The JP drain is gone. It hurt but it's a release to be rid of it. The neph reassured me about removing the PD catheter. He said the'll put me under for it. I was pretty scared about it. They won't allow me to drive for six weeks. They finished my MLOA paperwork for me and put down May 1 for my return to work date. I thought they'd say March 31. It's worst case, so I think I'll still go back in March - working from home since I'm not allowed to drive.

I'm still on pain killers and a bit concerned about it. I've always had a pretty high tolerance level, so I don't know what to make of this. I didn't need pain killers for my PD catheter placement, gallbladder surgery, or anything else. Am I overdoing it and that's why it still hurts? Today was day 9. They said it's good to walk and I've managed to walk about a mile in a day for three days. It's difficult, but I made it. Is that too much? Tonight was very painful again and I didn't even walk that far today. I try not to bend, but I admit I have picked thins up off the floor. Is that causing the pain?

I had my first pizza in a year for dinner. Bliss!

[lainiepop]

Glad it went well Deanne, your creatinine is awesome xxxx

[cariad]

I didn't have a drain or central line after transplant. I went into the operation with a chest cath but came out of it without one. The only argument Gwyn and I have ever had with my surgeon (it was quite the altercation, too) was over whether I could get a PICC or port put in. My veins were so bad and I was exhausted from the worry over whether or not they were going to be able to find a vein. About a week after the operation I was in desperate need of a blood transfusion. I had already been discharged so was to get this at their on-site clinic. The tech tried a few times to get a vein but kept failing. Gwyn rang the doctor and asked for a port or PICC line but the doctor said no emphatically, stating the infection risk was too great. My immune system had been wiped out from chemo and radiation, and I defer to his infinitely greater knowledge of these things, but I was just about to give in to the fear and stress and pain and become completely unhinged. Finally the surgeon said there was no way he would authorize a port, but he was going to ring the department that put in all of these various accesses and use his influence to have me scheduled for a PICC placement against his better judgement. If I hadn't been unable to speak from pain and frustration, I would have told him to wait. Instead, I asked the tech if there was anywhere else to try, and she said there was one more vein. Gwyn held my hand, I held my breath and she hit that last vein. Then, of course there was the tension from needing that vein to hold out for about an hour as the transfusion took place. Gwyn phoned the doctor back and he was none too pleased that he had gone to the trouble of getting me scheduled for an emergent PICC placement and now we were saying 'never mind!'.

Some days I still wish I had a line from which to draw blood. If they didn't require maintenance and pose an infection risk, I would have jumped to get one for my last hospital stay. I still feel that stress with blood draws.

Speaking of UK hospitals, once I was no longer contagious I went to a ward with 5 other women, 2 shower rooms to share. I thought I would hate it as I was in no mood to socialise, but actually I was quite grateful for the situation in the end. Yes, it was difficult falling asleep some nights when people would be talking, crying, whatever, but if I had needed help of any sort I have no doubt that they would have come to my aid. The woman next to me had Down's Syndrome and her mother (and often her father) would spend all of the visiting hours at her bedside. She was obviously from a posh family and when her parents were there she was quite sophisticated, I would say she could behave like a confident teenager for that time (she was probably in her 30s). When her parents would leave, oh, poor thing. She would sob but I could hardly blame her, I felt the same just didn't express it. Like her, I was in pain, I missed my family and I wanted to go home. She would wake up in the night in pain (gout) and one woman in particular would always tell her to not try to get out of bed, she would get a nurse for her. The staff were almost all brilliant with her, she clearly had many medical problems as they all knew her quite well. This woman could be adorable. She had food allergies so she had to keep her menus to show her mother. She would talk to herself, repeating phrases over and over like 'Keep it for mum'. She would also talk to her IV line 'No, you can't come out. Stay.' I found it really charming. When I was in hospital in LA with viral meningitis, I had a private room but since I could barely move it was terrifying when I dropped the call button. My only option was to scream bloody murder until a sulky little intern walked in, said nothing, handed me the call button and walked out.

Having read the descriptions of a drain, I still am not entirely sure how they decide who does and does not get one.

Deanne, it sounds like you are doing fab! I know all too well how it doesn't necessarily feel that way in the early days. My creatinine dropped to .5 while I was in hospital, too, and then rose slightly. It's the perfect hydration and lack of exercise that does it - my creat fell back to .5 when I was immobile in hospital for over two weeks. It quickly returned to about .8. I think we can both find a way to cope with just being excellent!