I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: smcd23 on June 19, 2012, 10:03:56 PM
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Holy cow, I am exhausted and completely overwhelmed. Tony came home today with his new kidney, and with a whole new list of stuff we need to do. ???
We have over a dozen meds - Prograf and CelCept which I expected. Then a blood thinner injection, oral blood thinner, 3 blood pressure meds, tums, calcitriol, 2 vitamins, Valcyte, Bactrim, Nexium, pain med, mouth rinse and maybe 1 or 2 I can't recall from memory. He is literally taking one medicine or another at midnight, 3am, 6am, 8am, 9am, noon, 3pm, 4pm, 5pm, 6pm, 8pm and 9pm. I must have had a bewildered look on my face when she gave me the medication card, because the coordinator left and came back with several that broke it down by time for me. Someone please, PLEASE tell me this gets better?! I know he has 1 or 2 extra meds for his calcium due to the parathyroidectomy he had a week ago, but I swear this list is way longer than the one they gave us previously telling us what to expect.
And he is peeing, a LOT. Which I know is awesome and we are keeping track of input/output, but he is up every 1.5 - 2 hours to pee. He still has a stint from the new kidney to the bladder because they don't want him to put too much pressure on his bladder right away since he wasn't peeing for awhile before transplant, but good God, the man can't catch a bit of sleep. I am hoping this goes away a little when they take the stint out. They had urology do a test on him to see if he still had reflux and to see if his bladder was still working right, and during the test they put a cath in and filled his bladder then he had to pee while they measured the pressure and output. At that time his bladder held close 600ml before he said he had to pee. Those who are post tx - does this frequent urination thing go away with time? Or even if the time between trips to the bathroom increased so he could get some decent sleep, that would be awesome.
We go back for our first follow up on Friday... I hope they don't add more meds (I would be fine with them stopping some) because I've already forked over a small fortune and I think I will go bankrupt if I have to do this every month. We can't get any copay cards because I have health insurance through my employer the Federal Government, and you can't use copay cards with Federal insurance. The social worker said she'd get us some gas cards because it's 84 miles each way to the hospital (and I'm saving receipts for tax time!) which will help a little, but damn!!
Oh, and they gave me a note to stay home the rest of the week. I had planned on going back to work tomorrow because I didn't think so much would need to happen during the day. I figured he'd have one dose of meds during the day, maybe 2 but not the 5 he would have to take between the time I leave for work and the time I get home. I really don't want to take any extra time off because I have none and we need the $, but goodness, this is a lot to adjust to!
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First, that med schedule does not seem right for home use. He shouldn't have to be getting up to take meds in the middle of the night so that his body can rest and recover. I would definitely ask about that. See if you can take more meds together or 30 min apart.
Yes it does get better, medications will dwindle down, but different ones maybe added over the years. Some of those listed are temporary meds.
I am like Tony after each time I am discharged from the hospital. The IV drip wants to get out along with what I have taken in. It will get better over time also because the bladder needs to stretch since it has shrunken a little due to kidney failure.
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It gets better, really! His bladder will stretch and accustom itself to the feeling of pressure, so he doesn't pop up like a jack in the box all night long. I sleep soundly a lovely 9 hours straight now. The meds will level out, too. I would call and demand they do something about the crazy scheduling though. That's insane! Some of that must be able to be taken at the same time.
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I'm 3 wKs post transplant & take 9 diff meds, 2 will stop after 6mths. I take them all in the morning then one set OF rejection drugs at dinner time & another before bed. Not too complicated, I came home with all of these. I am weeing about every 3 to 3 and half hrs now & twice at night, doable, but was tired this morning.
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YES! It really does get better.
Remember he got his transplant less than a week ago - I mean that he is home is incredible to me (but then again I spent 10 days in the hospital). All that stuff like the thinners and mouth washes and all that are to stabalise him and/or prevent infections at this absolutely critical time (eg: bactrim, the mouth wash etc). As the kidney settles in the meds will be altered and a lot removed. Some like Valcyte and Bactim he will have for 3-6 months, but others may well be taken away soon - I would imagine the tums, calcitricol etc shouldn't be needed as his labs come into line.
It is overwhealming but it's still so new (I'm also surprised they're giving him a few days off without labs or a clinic? I had daily clinic for a month post-tx - but I know some units are different). I imagine you might see some real variation in meds and doses initially then things being removed as he settles.
So hold on to the ride, enjoy the pee (you know what I mean!!!) and prepare for a more normal life!!!!
:2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
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Breathe, breathe, breathe.
It DOES get better, just as others have said. Now that Carl is 16 (almost 17) months post TX, the med schedule of 2x/day is just part of his routine. We had to fork over lots of $$$$ in the beginning, but now after our (high) yearly deductible everything is covered. There will be fewer meds over time, too.
:grouphug;
Aleta
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Chris - the med schedule is nuts because he is on K-Phos and Tums for calcium and they have to be taken 3 hours apart, and the Tums can't be taken with food. So that's the middle of the night stuff. 2 of the blood pressure meds are 3x a day so those are at 8, 4 and midnight. And then the main drugs like the anti rejection stuff is at 8 and 8. As time goes on, like when the Tums and K-Phos are gone I think we will try to move everything to 7 3 and 7 but we are following what they sent us home with.
It's not as bad as I thought it was going to be today, but we haven't had the VNA come by yet. His BP is high still but they upped 2 of the meds that he takes later today and tomorrow and they may give him different ones when we go back on Friday.
I think they don't have us doing daily labs because he's been stable on the rejection front since he came out of surgery. The only thing they have to adjust is the blood chemistry stuff - calcium, potassium etc. They said he met all their requirements for discharge - stable, urinating on own, moving about on own, eating solids because he was apprehensive about doing all of this at home, too. Our facilities schedule is clinic on Tues and Fri. Our old facility was only 2x a week too.
I am going to go take a nap until his noon meds. *yawn* it's been exhausting, physically and emotionally. Then I am going to get his meds together for our trip up there on Friday. I have no idea how long the labs are, so I am thinking I should pack all meds up to dinnertime? I have no idea. It's a 1.5 hour drive so I think we will be gone half the day, if not longer.
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I'm 3 wks post transplant & going twice a WeeK to clinic too, had daily bloods When in hospital. this is standard in the uk, then goes to once a Week etc. those travelling further to clinic were told to bring an overnight bag just in Case. I went back in hospital Last week cause had an infection, bit rubbish !
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If you sign up on the prografs website of transplant living you will get a large 7 day 4 compartment pill box along with other things, CellCept doesn't offer as much info and send you a portable CD player. Trying to think of who else sent me pill boxes, but I use one by Timex that also has an alarm in either voice announcements or beeps that was given to me at an IHD meet.
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just signe up for for prograf, saw a pic of the box, about how long do u remember did it take for them to get it to you...i am scheduled for my transplant in less than 3 weeks, 20 days... i still cant beleive its getting this close its kinda surreal
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Congratulations on a successful transplant!
And so the rollercoaster ride has started.
It does get better, less meds, less apts. But it takes a while to get better.
The ups and downs will probably always be there, as we find the new normal.
Good luck to both of you.
Olivia
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smcd23,
You may not have the option of changing the time for your meds. Carl takes his at 9:00 and 9:00 because when he has his transplant clinics, he goes in at 8:00 AM for the blood draw. They want to see what his levels are at the end of the time frame.
:grouphug;
Aleta
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Those damn pills!
Blokey takes hundreds a day ... HUNDREDS!!! Well, I may be tweaking the truth a little there, but it feels and looks like it's hundreds. However, he does (now) only take them twice a day (9.30am and 9.30pm). Every other Friday night he sits in front of the tellybox with his two big one-week pill boxes and a box-mountain of pills and lovingly fills each morning and evening section up - it takes him about an hour and we have at least one little panic because he thinks he's run out of something when he hasn't. If you asked me what he takes I wouldn't have a clue, but he has it lodged tightly in his memory. Medication is his baby and I try to steer clear of it, except to pass him a box of CellCept or Advagraf or whateverelseitishetakes.
But definitely get at least two big seven-day pill boxes.
It will get better!
*huggles*
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Everything feels overwhelming at first. There's almost a bit of being in shock at this big change. It does get easier over time. I promise. Although 2 mos later I'm still surprised when I have to pee in the middle of the night.
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Thanks! We have the Prograf box. They gave it to us at discharge. I bought a nicer, east to open one at the drug store. I am going to look for the Timex one online because I think that will be helpful when I go back to work. Otherwise I'll be calling 4x a day and flipping out and rushing home if he doesn't answer to make sure he took everything and is okay. I just guess I was delusional and thought things would be easier post transplant. But now instead of "nagging" about setting up his PD, I've turned I to the clock and pill nazi. ;D
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just signe up for for prograf, saw a pic of the box, about how long do u remember did it take for them to get it to you...i am scheduled for my transplant in less than 3 weeks, 20 days... i still cant beleive its getting this close its kinda surreal
About 4 to 6 weeks.
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just signe up for for prograf, saw a pic of the box, about how long do u remember did it take for them to get it to you...i am scheduled for my transplant in less than 3 weeks, 20 days... i still cant beleive its getting this close its kinda surreal
About 4 to 6 weeks.
Thanks! We have the Prograf box. They gave it to us at discharge. I bought a nicer, east to open one at the drug store. I am going to look for the Timex one online because I think that will be helpful when I go back to work. Otherwise I'll be calling 4x a day and flipping out and rushing home if he doesn't answer to make sure he took everything and is okay. I just guess I was delusional and thought things would be easier post transplant. But now instead of "nagging" about setting up his PD, I've turned I to the clock and pill nazi. ;D
Walgreens if you have that nearby is were they sell it here, but also know of a mail order place.
Another option is to use a cell phone or a 4 alarm watch. I use my iPhone also as remionders when I am out and have a talking watch. The phone works best in noisy areas because it vibrates since sometimes you can not hear the phone (depends on ring volume level to) Some pharmacies will send text message reminders to take meds also, then there are smartphone apps,(I have a few).
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I downloaded the drugs.com pill reminder for my iPhone but since Tony doesn't have an iPhone or android yet I am going to download it to the iPad because that's home with him all day, and the reminder will work even if the program is not open :) I'm sure he will get mad when the notification interrupts his Angry Birds game. But when he gets we enough to go to work he we will need some other system.
Tonight setting up the overnight pills (which I taped in little baggies from the shelf above the toilet with the med name and time on them so he will see them when he gets up for the bathroom) wasn't as bad, and neither was planning the pills for Friday to take with us to his appt. I am starting to figure out what and when so that's good. He knows too I think because he asked at noon why he has 2 pink gelcaps (bp med) and not one like before, and I told him they upped his dose of that by phone today.
But then the visiting nurse came and now I have to flush and put Heprin in his pic line once a day, too. Ugh.
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If I ever get a transplant, I think I'm going to need a wife! Seriously, I can't imagine my husband managing my tx aftercare. I've been taking 30 pills a day for 8 years now, and he hasn't a clue, and I certainly don't expect that to change should I get a new kidney.
Do most people who have a tx need someone to sort out their meds like you're having to do for Tony? Seriously, I'm starting to get a bit worried. I really don't want my husband to get this stressed, you know? I don't want to have to ask him to tape up little baggies over the toilet! LOL!
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MooseMom- no, I don't think you will need a wife. Tony is a bit more complicated because he had the parathyroid surgery last Monday and needs supplements for that every 3 hours. And has the clotting issue. And he is tired from being up peeing so much and is super sensitive to pain meds that he was/is too groggy to keep track himself. I think once things settle a bit and he's off the supplement type meds he will be okay. Then it would really just be meds 3 to 4 times/day which he can do so long as its planned out for him. I'd be home for 2-3 of the doses anyway. If you've been on that many meds you will do fine. Tony used to take 4 in the am and 2 in the pm and had 1or 2 that were as needed (sleeping pill and pain pill for arthritis flare ups) And if you do need a wife I'll come help, by then I'll be an old pro at this ;) The only thing he technically needs help with are the injections and flushing his pic line BUT both of those things he *could* do himself if he had to - he just would have to use his stomach only for the shots (whereas he prefers the fatty area on the back of this arm) and he'd need an extension on the pic line to do it himself.
Our tx team said he needed me home this week I think more to help him get around but he's doing just fine, just slower moving. It's been near 100 today and will be tomorrow and 90 on Friday so I'm sort of glad I'm here. I wouldn't want him taking the dog out in that heat. He doesn't have to walk him but I think just standing in that heat would be a lot.
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When we had that meeting per-transplant I said I'd be available to drive him, not realizing he needs 1 on 1 care for the first week. I dont recall it the last time but then again he only left with an incision to take care of and not a kidney, too. I was home alone caring for myself 3 days later (I had donated the first time so I was cut up, too) and I think the 2nd week he stayed with me in my apartment so we had each other for company.
I wish he has the option of staying in a halfway house closer. We're 1.5 hours away so the 2x a week check ups are not just time consuming but expensive. Good thing gas prices seem to be going down!
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MooseMom, you'll be fine.
When I was discharged I had the option of staying at RIC nearby for a week or 2, or go home and have a home health nurse comeby everyday to do certain infusions and check up on me twice a day then once a day. I had to do my own heparin and saline injections into my line. They give you enough supplies and was told to prefill the syringes for a week, which was easy and was just part of setting up my meds for the week. My center knew I would not have anyone at home during the day through the week too. Doing things on my own tho is just something I am use to too even when not feelin the best.
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No they don't, their only hostel is for the families of children in the children's hospital there. The social worker said shed try to get us some gas cards, and they do give meal vouchers on clinic days at least. But I just wish he could have stayed an extra day or two... I get nervous so easily. He's been peeing every 1.5 hours but he just went 4 or 5 without peeing and I'm freaking out. His input was less than his output by a few hundred ml so maybe output is slowing down now that all the IV fluids have worked their way out?? It's silly things like this that make me worry and wish he was still up there because I just dont know and I'm so paranoid! :embarassed:
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Oh yes, we're keeping track and he's drinking. He took in just over 3 liters of fluid today and put out a few 100ml more than he took in. He just finished a drink about an hour ago. I'm going to watch him like a hawk tonight to see his input/output and if his output is still down in the morning I'm going to call. He may have forgot to write a bathroom trip down. He just dozed off, and if tonight is like last night he will be up in an hour or so to use the bathroom. Crossing my fingers nothing is wrong, he's waited for this and he's not had an easy go with anything along the way.
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Chris and smcd, what's all this about heparin and injections and pic lines? I know that Tony had problems with clotting on his first go round...is that why he needs injections? What's a pic line and what is it for? Do all post tx patients go home with one? I don't remember reading about THAT!
I'll be 2 hrs/2 1/2 hrs away from my tx center, so the commute is a problem that I've tried to talk to my husband about. They're building accomodations for the families of out of town tx patients, but it's not ready yet. Maybe it will be by the time I'm offered a kidney, but these sorts of projects that rely solely on private contributions take longer than you think, so hubby will be staying in a hotel while I'm in the hospital. We can get the "hospital rate" if a room is booked through the hospital's concierge service, so that's something. My husband knows in theory that it's going to be a lot of driving back and forth for the first several months, so he's going to have to decide what he is willing to put up with since I will be in no shape to drive for a while. I guess sometimes you just have to let go of the ropes and let someone else herd the cattle for a while. But my husband is one of those who don't like to think about details until it's almost too late. LOL!
Smcd, I don't blame you for being paranoid. After all you and Tony have been through, it's entirely understandable. That feeling will probably last a while; it takes some time, I imagine, for someone with a new kidney to start feeling something close to confident again. But Tony is already so much further ahead in the game than he was after his first tx.
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Most people do not come home with a PICC line. Your meds should be oral and you should be able to eat and take meds when you go home. But if you do have an unusual problem you might need a line. It's rare because it's just another risk of infection.
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Jeannea, thanks for that. Where does a PICC line go? Where is it inserted? Sorry...I've heard of this but don't know a thing about it. Please feed my paranoia. LOL! I need something new to worry about. :P
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PICC lines are an option for doing injections and blood draws without needing to be restuck every time. Pretty common for anyone with lousy veins. I had one inserted in the upper middle of my right arm all during my recovery. It was where I hooked up to my IV nutrition, where they hooked up IVs, and where they drew blood. I had mine for about 4 months. I went home with it, and had to keep it flushed out on a daily basis.
It actually ran up my arm, through my chest and ended very near my heart. Boy, did that feel strange when they finally pulled it out! I loved it though. I am such a tough stick, that it saved me a lot of pain from the multiple blood draws. I begged for one my last hospital stay, and the doc said no, he didn't think it was necessary. He should have taken a survey of the blood techs they sent to my room. They all wanted to know why I didn't have one!
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Oh, thanks for that, jbeany. That explains a lot!
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MooseMom, I had a line in my neck only when I was in the hospital, both for my tx and that emergency surgery back in April. Both times, that line was removed on discharge day. The only "weird" medical thing I had to deal with after discharge, both times, was the surgical drain. That wasn't all too bad. I was able to drive after 2 weeks, because I was no longer on pain meds (I still have my unopened bottle of them) so that wasn't a concern, either. Since I live alone, I had to do a lot alone, except for the first week after discharge, when I had a relative stay with me. She did not do anything medical for me, I handled all my own meds. She was here mainly as a precaution, and to drive me around, make me dinner, things like that. It was nice!
Transplant experiences definitely vary from person to person. You won't know what yours will be like until you go through it!
KarenInWA
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Mine was in my neck because there was no where else they could insert an IV in my right arm. I had to have infusions at home of themogobulin (sp?) and another med along with IV fluids. The heparin and saline is to flush the line out and keep it from clogging. You may or may not have this depending how things go. Jess21 could be of assistance if she was on because she had her transplant at the same center in Wisconsin. She has been busy and hasn't posted much on facebook. However this is where each person is different comes into play. Some have an easy time post surgery and some have trouble post surgery till things work out.
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Tonight setting up the overnight pills (which I taped in little baggies from the shelf above the toilet with the med name and time on them so he will see them when he gets up for the bathroom) wasn't as bad, and neither was planning the pills for Friday to take with us to his appt. I am starting to figure out what and when so that's good. He knows too I think because he asked at noon why he has 2 pink gelcaps (bp med) and not one like before, and I told him they upped his dose of that by phone today.
Are you sorting all his pills out for him? When he's feeling a little more recovered be sure to pass that little (big) job onto him so that he's in control of his meds and knows what he's taking and why. He should be responsible for taking care of himself (and his kidney) post-transplant, and he is capable of planning it out himself. How will he cope if something happens to you and you're unable to plan his meds out for him? I like that Blokey has full control over his meds because it's one less thing for me to worry about.
;D
MM, you'll be fine!
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Yes Poppylicious once he's feeling better he will take it over I'm sure. Tomorrow I plan on having him help set them up for the weekend.
We're currently at the local ER though. He took in 2000ml since midnight and only put out 500ml, so the transplant center wanted him checked and treated for dehydration. :(
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Sorry to hear this. Thinking of you and hoping it's a quick fix for your fella! :grouphug;
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Hopefully it is only dehydration and he will feeel more energized and walk around after he is pumped with fluids.
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We're up at his clinic appt waiting on labs. All that fluid he had yesterday? He's retained it ALL in his belly. He weighed 8lbs more today than he did yesterday. It's not in his legs like it used to be on dialysis. Wish I knew what was wrong. I am sure the transplant team will fix it today but he's extremely uncomfortable in the meantime and can't provide a urine sample.
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Hope his Labs come back ok thinking of you x
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I'm so sorry Tony is having problems, I hope they get him sorted out quickly. I'll be thinking of you both, and holding good thoughts for an end to Tony's discomfort, peace of mind for you, and relief from anxiety and stress for you both
:grouphug;.
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Sadly no good news. Kidney doesnt have adequate blood flow. Will need to come out. Despite the blood thinners it's thrombosed. He can never have a transplant. Ever. He has no access for hemo those all clotted too. Can't do PD due to a the surgeries. He hasn't decided what he wants to do. Currently bringing our son up to see him in case this is the end. :'(
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Oh no. No no no no no no no no no no no no no. I just can't believe it. I'm gutted for you, absolutely devastated. I am so so sorry. I just don't know what to say. I can't believe the docs have no plan B. I don't understand the clotting issue. What's causing that? Is there some clotting disorder that they haven't diagnosed adequately that has caused this?
Oh, I am so so sorry. I truly can't believe this is happening.
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This news has actually made me sick to my stomach and has made me cry. I wish I could make all of this go away for you and Tony.
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They have no idea what is causing it. His blood is thin thin thin but for some reason it's clotting in the renal artery. The surgeon was going to talk to hematology but their answer was the thinners after seeing his prior transplant records
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They have no idea what is causing it. His blood is thin thin thin but for some reason it's clotting in the renal artery. The surgeon was going to talk to hematology but their answer was the thinners after seeing his prior transplant records
What? Hematology says that the blood thinners are causing the clotting in the renal artery? That doesn't make much sense to me. None of this makes any sense whatsoever. :(
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I am grieving with you and Tony right now. Such a shock, I scarcely know what to say. Sorry doesn't quite address the horror of this situation.
Can they at least get a cath for him to do hemo? I am hoping against hope that once you're past the chaos of the situation, the doctors can offer you new ideas.
Your family is in my thoughts. :grouphug; :grouphug; :grouphug; :grouphug;
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I am just in shock. Each day I've been sharing your story with Carl. This is awful....
Just awful..... I wish there were something I could do.... You have been a tremendous help to me and I wish I could return the favor somehow.
I can't even begin to imagine what you are going through. :'( :'( :'(
I am so very sorry. Words just don't reach the depth of sadness I'm feeling.
I hope there is some solution that the doctors haven't considered yet. :grouphug;
Aleta
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Is there any more news? Have the docs been able to come up with ANYthing? How is Tony doing? How is he coping? Do you have any friends or family close by to help you out? Is there any chance your parents can be at the hospital with you?
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My mom and dad came up and sat with him while I went to get our son. They are pumping him full of steroids hoping to open the artery and get more blood to it. He is running very thin and keeps getting nose bleeds. Tomorrow they are going to do another ultrasound to see if there has been an improvement. Originally when I left they were saying it was coming out tonight. In the 2 hours I was gone they changed their mind. He still has output but it's nothing but blood it looks like, not sure if that's because he's so thin or what.
He doesn't want a chest tube. He's never wanted a chest tube. Not to mention he'd potentially clot it which is why a graft was never an option. That's why they went with fistulas when he started hemo. I tried talking about NxStage as an option if he went with a tube because he could do it at home like he did with PD.
I'm hoping hematology comes up to see him. They never tested for genetic conditions because the treatment would be what they did this time. But if it is a genetic condition that can't be fixed, I think I'd like to know.
I've always said I'd trade places with him in a heart beat, and that's especially true now. He deserves 30 good years. I've had that many, he should get the same. I don't want to have to explain to our son where daddy is.
He also has 0 native kidney function. His kidneys are 5.2 and 5.0cm and are atrophic. I don't know how long he'd be able to live on any sort of dialysis before it would need to be around the clock.
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Thank you so much for the update. I haven't been able to get you and Tony out of my mind all day, so please forgive me if I'm asking too many questions. I don't mean to be intrusive, particularly at this very chaotic and difficult time, and the last thing I want is for you to feel obligated to answer my silly questions.
I agree with you...if Tony has an undiagnosed genetic condition, you really need to know for your son's sake.
I'm still hoping that the docs will be able to come up with something.
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He's put out almost a liter of urine since they put the cath in, but most of that was when they did the cath.
I'm camping out in his room till they kick me out, wonder what time that will be...
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I am so sorry about all you've been through. It's just so hard to believe the problems! Do they know if scar tissue has forned where they sewed on the artery?
Poor guy. Poor you. I wish there was a solution to this. They don't let you stay with him? I insisted on sleeping in my daughter's room (she was 21 at the time.)
I am thinking about you, wishing there was more we could do. :grouphug; :grouphug; :grouphug;
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:grouphug; :grouphug; :grouphug;
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Just checking on you and Tony and grasping onto the small ray of hope that I see in your updates, hoping that the doctors decide it is too early to give up on this kidney. As for the zero native kidney function, that is quite common for people on dialysis. Makes matters a little more challenging, but does not mean he would have to spend all of his time hooked to the machine. They really need to get to the bottom of this clotting issue so that they can properly advise you what is and is not feasible for him. I so want to believe that there is a way forward for him.
I sit in awe of the strength that I am reading in your posts. Hun, I think any doctor with a drop of sense would think twice about trying to kick you out of that room. Is there anything you particularly need right now? Perhaps we could problem-solve with you if there's an issue you've been trying to handle on your own? I'm wittering on because I am just so sad that you are going through this, and just want to be able to carry some of your burden for you. :grouphug;
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They just came in, apparently the kidney is coming out. I just wish they'd make up their darn mind! First it's out right away then it's try to save it for 3 days now it's out first thing in the morning. Which still leaves him no way to do dialysis. Oh and he has not told his family.
I wish my mom was here. :'(
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I am So so sorry to hear your news. Thinking of you all
:grouphug;
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I am stunned by these developments, my heart literally hurts for the three of you. Please know that you are in my thoughts and that I am praying for the doctors to come up with an alternative treatment. I hate that you are there alone. I wish your mom could be with you too. I wish someone could be there with you to hug you and let you know that you are not alone. I wish I could comfort you in a more concrete fashion than words on a screen. I know things are so very dark right now, please don't loose hope.
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Depending on the outcome of today I may call back to our old facility. It's a larger hospital they may have more resources. Now that we are married and he's on my insurance they can't put him on status 7 hold. I will move across the country if I have to and he wants to in order to find someone who can fix this. I just wish it wasn't him, I wish it was me instead. He's never gotten a chance to travel or enjoy being young. He's honestly never been able to do much, he's always had this hanging over his head. He actually had hope and dreams last weekend and it just amazes me how quickly they were crushed.
He's in surgery now, we will see what happens.
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I'm utterly speechless with grief for all of you.
Keep fighting to find a solution.
:grouphug;
Aleta
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:grouphug; :grouphug; :grouphug;
Thinking of all 3 of you.
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He still has the kidney. He's been on high dose of steroids. They went in and it was still pink which means it still had blood flow. They did a biopsy. They think it could be a reaction to the heparin so he's off that and on a different thinner. They have no real answers. The surgeon says he's "cautiously optimistic" I told him how the previous hospital went through my kidney with a fine tooth comb after it clotted and could not get an answer either. I haven't seen him yet, they are doing x-rays and stuff before I can see hi
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Pink is a good color! Keeping my fingers crossed for you.
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I will continue to hold my breath in hopes that the medical profession can find a solution for Tony.
I'm glad that he still has the kidney.
:2thumbsup;
Aleta
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He's not making a lot of urine yet though :( and what is coming out is very dark. I am having our friend Bill drive me home so I can get a shower and a nap. Then I'll head back up. They have my number I'm sure they will call if there is a big change but so far it looks like its hurry up and wait.
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I am sending my prayers and positive thoughts your way so that this kidney finds a way to be strong and healthy for Tony. I have been keeping track of this thread for a while now, and I was devastated when I read that the kidney had to come out. Hoping and praying that this will not be the case. You all deserve health, energy and prosperity for many years to come!
Thank you for the updates. You are a very strong woman, and I am glad you are there for Tony. He is very blessed to have you by his side.
KarenInWA
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Hoping & praying he can keep the kidney :pray;
Lots of Love xx
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:grouphug; :grouphug; :grouphug;
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They are transfusing him plasma. They are going to give him hemo tomorrow to pull fluid off. They are treating this as an episode of acute rejection and a reaction to the heparin/lovanox. They also said the kidney could be in shock now, like it just realized that it's now in the right body. They won't be writing it off until Wednesday and I guess they won't be worried until then. They said he will be up here for at least a week.
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OK, this hospital has 4 days to show you what they can do. I sure hope they deliver. This on again/off again is making me bonkers on your behalf, Shauna. Try to remember to take care of yourself through all of this. It is just so hard. We are standing by your side through every moment.
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Noah I am do happy to hear that given your clotting issues also. He's on thyroglobulin and cellcept for antirejection and he had solunedrol this morning. They are also testing for heparin induced thrombocytopenia but those tests are not back yet.
This has been such a roller coaster. Up and down its in it's out it's dead it's alive. I'm so freaking exhausted. A family friend got me a hotel across the street from the hospital which I am so thankful for tonight. I'm not leaving here for awhile, I am willing the kidney to start peeing. Hasn't worked yet but I am determined! This kidney better be ready for me! It has no idea what I am capable of haha!
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I'm relieved to hear that the docs are not giving up just yet. Tony should be given every opportunity to get this kidney working.
It was so thoughtful of your family friend to get you a hotel room. The travelling back and forth is in and of itself exhausting.
Good luck to you and Tony. We are all praying for him.
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I just got to the hotel - Tony was sleeping and stable. Still no pee though. :pray; Hoping the urine will be flowing in the morning.
Realized when I got to the hotel I didn't bring pajamas. Good thing I'm sleeping alone! And I just want to say I never realized how much bigger a king bed is, I think we need one at home! Tony, the dog, the baby and myself could sleep so comfortably in a bed like this!
I'll be going back to the hospital in the morning, the nurse said shed call if anything came up. I'll post an update in the morning. I thank you all so much for your support and kind words, it means so much. I can't put my gratitude into words, but it means a lot and can't wait to tell Tony when he's feeling better!
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Shauna - I'm relieved that the doctors have come up with a treatment plan - even a temporary plan and 'cautious optimism' is a step in the right direction. I hope you are able to get some rest tonight, you need to take care of yourself to be able to fight on tomorrow. Please know that my thoughts and prayers are with you and Tony.
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I am so so sorry to hear of the roller coaster ride you and Tony are having to go through. Glad to hear that they are still working on it and haven't given up. I will be keeping you both in my prayers. :grouphug;
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Im so glad tonys still got the Kidney & they're doing they're best for it. Praying For you all x