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2ndgenerationesrd
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« on: July 20, 2016, 02:44:53 AM »

GONNA KEEP this short. Creatinine level 6 in May while in hospital. June 28 back in er creatinine level 11 bp 189/110. Stay in hospital for 3 days. Schedule to see Vascular Surgeon. Fistula surgery scheduled for July 18. Came to get it done  hemoglobin right at borderline for blood transfusion. After procedure was suppose to go home, was admitted case creatinine level was 16 Potassium level 7. While I'm recovery potassium was brought down to 5.3. Next day July 19 was told I need to do a cathther for emergency dialysis. Got that done and 1 hour later I was being dialysis. So I'm all jacked up, scared and in pain. They give me percocet for pain which helps but makes me EXTRA itchy. Sorry for the short incomplete sentences. I'm in the hospital as we speak. Have to stay here and be dialyzed 3 days straight for 2 hours and wait on hospital until they can find me a center. Oh and btw my dad and sister had a big argument in the hospital because my dad didn't want me to get the catheter. He believed that it would cause a thrombosis and kill me. Adding to my already scared thoughts. I was crying because I didn't want to go against my dad, however I know that if I don't I could die. I'm 34 years old. That's the shortest version of the story I can give. There's so much more. My mom was on dialysis and passed in 1999 when I was 17 years old. :stressed; :stressed;


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iolaire
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« Reply #1 on: July 20, 2016, 05:06:21 AM »

Welcome, I'm glad you were able to find this site during your scary time.  I'm sure you have found that the site is a good place to vent and learn from the experiences of others.  Plus you will see some people posting who have been on dialysis for many years.  Realize that if you can keep your health up dialysis becomes a pain in the but it doesn't preclude you from living a fairly normal life.
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Transplant July 2017 from out of state deceased donor, waited tree weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
LorinnPKD
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« Reply #2 on: July 20, 2016, 06:13:34 AM »

Oh, wow.  This sounds very stressful and I hope you are able to get some rest and some space/time to deal with this emotionally.  It's a lot to take in.

If it helps, I resisted the catheter at 6% function and spent nine weeks waiting for my fistula to heal, starting dialysis just last week.  During that waiting period, I slept up to 18 hours a day, dealt with daily nausea, lost 15 lbs, and at the end got so wobbly some days that I could barely walk to the end of my block.  So skipping the catheter and waiting for the fistula to heal isn't all sunshine and daisies. I think you made the best decision you could make at the time.  There are some scary risks with catheters, sure, but now that you have it you can focus on letting dialysis help you.  It may also help you ease into dialysis a little easier when it's time to start using the fistula.

34 is young.  I'm 40 and everyone I meet in this context is 20-40 years older than me, so I feel like a weirdo at the center but people have been kind.  Like you, I had a parent on dialysis so I knew in advance how some of this stuff works, and that's a tremendous advantage.

I hope you keep posting and commenting here as time goes on.  And that you're doing OK.  I try to meet friends every now and then to make my life feel as normal as possible.  That's been the best thing -- just trying to rest a lot, let myself watch too much TV, play with my dog, and remind myself how it's good to keep going.  And it is really is good to keep going.
« Last Edit: July 20, 2016, 06:15:22 AM by LorinnPKD » Logged
cassandra
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« Reply #3 on: July 20, 2016, 12:55:14 PM »

Welcome to the site 2ndgenerationesrd

    :welcomesign;

As the previous posters said: keep going, it will be worth it really.

I started at 18 (so I get the age thing) had my dad's kidney for 13 years, and on D ever since. 51 now and have had a pretty good life.

Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
TheLivingWater
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« Reply #4 on: July 23, 2016, 11:38:53 AM »

Welcome to IHD. Thanks for sharing us your story. I hope that this will give you inspiration and strength knowing that you are not alone in your kind of situation. We hope that you continue to keep us posted whenever you have time . Take care and God bless!
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Rerun
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« Reply #5 on: July 23, 2016, 11:49:32 AM »

Hi 2nd, and welcome to IHD.  I'm so glad you found us.

It was a good choice to get the catheter in.  That way you can get use to dialysis without having to worry about the needles. At least you know about dialysis because of your Mom.  Don't freak out.  You will get straightened out and start feeling better.  I hope you are eligible for a transplant.

Keep reading here.

Welcome - Rerun, Admin.
                                                          :welcomesign;
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Charlie B53
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« Reply #6 on: July 24, 2016, 08:04:57 AM »


Sounds like Dad may be a little over-protective.  He worries about what could possibly go wrong.   ALL life carries a certain amount of risk.  Same goes with most all medical procedures.   Calculating those risks against the calculated risks of NOT having the procedure done can often be very stressful. 

You have to have Trust in your Dr's to explain those risks.  Ask questions of those things you do not understand well, and make a more informed decision.

Having the cath placed and starting Dialysis most likely was the better decision.   Get those toxins and some of the excess water out of you.  This will enable you not only to feel a little better, but will even help you THINK clearer.   That poison inside is NOT a good thing.

Now that you have started you should start feeling a bit better and more confident that your Dr's do have your best interest in mind.

Take Care,

Charlie B53
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kickingandscreaming
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« Reply #7 on: July 24, 2016, 09:05:20 AM »

Welcome.  I was scheduled to do PD so I had a PD catheter installed long before I needed it. Then my kidneys crashed from pneumonia and I landed in the hospital with tons of fluid in my lungs and everywhere else.  They had to start me immediately on hemo while in the hospital--similar to you.  They installed a neck catheter for the Hemo and I used it for several months without any issues--except that I wasn't allowed to shower.  But as long as it is kept clean, there is usually no problem with it.  It will see you through until your fistula has matured enough.  Good luck. Many people have rough starts and then things smooth out to a dull tedious hum. D is no fun, but it isn't awful either.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
2ndgenerationesrd
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« Reply #8 on: July 26, 2016, 11:56:41 AM »

Good afternoon. Still in the hospital. I've had about 6 or more blood transfusions and 2 platlet and 1 plasma transfussion.Bleed from my catheter 2 days because of heparin given, it made my platelet count go down. They had to give me a catheter iny groin to give me antibiotics, transfusion, and draw blood as they couldn't find a vein in my other arm. My fistula bleed 2 days after for 4 days because of the heparin. I was so scared they had to keep giving me transfusion because my hmg kept going below 7. The finally got the blood to atop pouring out on Saturday. I also had fever so they were testing and scared I had a blood infections so they did blood cultures and they have come back negative as well as the bleeding and fever have stopped. Today is Tuesday and I've had dialysis 4 times since last week. My creatinine last time I asked Sunday was 9.87 then Monday morning it was 11. :Kit n Stik; :banghead; :banghead;

I haven't ask about it since cause I got discouraged. Hemp after bleeding was 7.8 but is now 7.2 another discouraging thing. Had to get some calcium via iv yesterday cause calcium was low
 They are ready to discharge me today, but I'm so scared to go home. When I walk out these doors I will have to face reality of a different life. I'm so scared and feel alone. Although I have the GREATEST support from my family. So one has been here with me everyday at least 16 hours a day.

I would like to thank everyone for responding to my post. It is much appreciated and helps a lot. Dialysis on the outside starts  Thursday. Geesh I'm going missed taking baths for a while. I usually take numerous throughout the day to warm my body up when I'm cold.. :banghead;

Thanks again everyone!!!!
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cassandra
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« Reply #9 on: July 26, 2016, 03:18:47 PM »

Bugger what an awful time you are having. It's good your family is so supportive.
I hope your HB will come back up soon, and you'll feel/be more stable, and that this new reality will turn out to be 'livable'.

Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
DayaraLee
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« Reply #10 on: July 26, 2016, 06:34:36 PM »

Welcome, 2ndgeneration! Your introduction and subsequent post sure communicate clearly what a rough time you've been having. It is definitely time for some things to start going your way. A supportive family is one of the best resources to have.   :thumbup;   Sending positive thoughts and prayers as you prepare to leave for home. You've found a great community here - everyone is full of knowledge and experience, and they share it freely.
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
Michael Murphy
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« Reply #11 on: July 27, 2016, 05:01:39 AM »

I sat next to a tiny women for several years, she had a cth for over 20 years without a problem, they could not build a fistula or a graft since her veins were so small.  She moved so I don't see her any more but last I heard she was doing well.  The cath is a pain compared to a fistula but let's face it dialysis sucks but not so much as being dead.  Welcome to the site, this place got me through my first year on dialysis, I hope it helps you.
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LorinnPKD
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« Reply #12 on: July 27, 2016, 12:37:36 PM »

Sending you good wishes as you settle in back home.

It sounds like you went through A LOT at the hospital.  But you made it!

Things get easier as they get stable -- you get into a rhythm of going to the center, coming home, finding strength to do your usual tasks (or a variation on them).  I think the center might be a good experience in contrast with the hospital stay -- people settle in, watch TV, read, chat a little while they let the machines do the work.  There will be complications from time to time, of course, but it is much better than being in the hospital.
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2ndgenerationesrd
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« Reply #13 on: July 28, 2016, 03:24:23 PM »

Thank you everyone. I'm home and did center dialysis for the first time today. I finished about 10:30am. I'm so cold right now. I checked my temp and its 100.5. Should I be worried? I took a Tylenol. Also can my fistula get wet, I know the catheter can? I wanna take a bath so bad, that's what I do when I get cold to warm up. Any helpful tips on bathing with a catheter and sleeping with a perm catheter? I like to sleep on my stomach and my catheter is in my neck right side and I just had a fistula done which is on my left arm. Still have staples in, its been 10 days since its been put in. Also I looked for this answer but couldn't find it, how long after fistula is put in did u get your staples removed and did having them removed make the pain go away. My arm is sore and bruise and a little swollen, down from before, it looked like it would just open before.

Thanks always!
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LorinnPKD
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« Reply #14 on: July 29, 2016, 12:43:27 PM »

Your doctor or the other commenters can help you with most questions...  I was able to get my fistula shower-wet on Day 3 but you should have instructions from your doctor.

For the cold, this is time for heating pads and hot water bottles!  I have a bag filled with rice that I heat up in the microwave and it's so nice and reassuring.  I am always cold and I sleep with a comforter even in the summer. If you can, treat yourself to a nice fluffy down comforter so you can be comfortable.  I keep an inexpensive twin-size one from IKEA on my bed and it's the perfect size for cuddling in.  (I am thinking of getting a second one for in-center dialysis and toting it back and forth.  I get so cold during the sessions!)
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Jean
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« Reply #15 on: July 29, 2016, 01:29:00 PM »

Wow kiddo, you sure have had a lot of crap thrown at you in a short period of time. Things will settle down in a short period of time, I am sure. Just try to hang in there and go with the program until it does. The folks here at IHD are the very best in their advice and knowledge. I have been here since 2008 waiting to go on D, but it hasnt happened to me yet and I am not complaining. Come here often with your questions and learn, learn,learn. Best Wishes.
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One day at a time, thats all I can do.
Michael Murphy
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« Reply #16 on: July 29, 2016, 06:03:24 PM »

In center, bring a blanket, heavy if you feel really cold. I always bring one and use it occasionally.  The other thing you can do is ask to have your blood warmed before its returned. It helps. 
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supertramp1228
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« Reply #17 on: July 30, 2016, 02:18:25 AM »

dont be afraid mate.im a newb here as well but i been dialyze for 2.5 years.im really glad to find this place which has so many positive and knowledgable ppl here.pls believe that life are full of miracles.keep fighting!!!
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There is only one perfect road,it is ahead of u,always ahead of u.
2ndgenerationesrd
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« Reply #18 on: July 31, 2016, 02:05:01 PM »

Thank you everyone for your kind words! I really appreciate them. This has really been a rough time for me. I always bring a blanket to dialysis but I'm still cold. SMh.Yesterday I had dialysis and ran a fever, didn't take my temp but I knew cause I was shivering. I took Tylenol and was OK. Then later on(3am) I had another temp of 100.1 so I took another Tylenol. Today I was feeling OK then started to feel a little cold and my temp was 100.5. I laid down and woke up not feeling well so I took my temp again and its 101.1.I just took another Tylenol. I'm scared when should I go to the er and also should I not take the Tylenol risking that I would mask infection?

I just wish things would get back to a little bit of normalcy. Dialysis isn't what's making me depressed its the complications that I've been going through that is discouraging.
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Michael Murphy
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« Reply #19 on: July 31, 2016, 04:19:50 PM »

Ask to have your blood returned warmer, heavier blanket (I have brought a comforter) and all else fails if your center does not have heated chairs bring a heating pad and a thermos of hot coffe or tea.
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2ndgenerationesrd
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« Reply #20 on: August 01, 2016, 12:50:58 AM »

Your doctor or the other commenters can help you with most questions...  I was able to get my fistula shower-wet on Day 3 but you should have instructions from your doctor.

For the cold, this is time for heating pads and hot water bottles!  I have a bag filled with rice that I heat up in the microwave and it's so nice and reassuring.  I am always cold and I sleep with a comforter even in the summer. If you can, treat yourself to a nice fluffy down comforter so you can be comfortable.  I keep an inexpensive twin-size one from IKEA on my bed and it's the perfect size for cuddling in.  (I am thinking of getting a second one for in-center dialysis and toting it back and forth.  I get so cold during the sessions!)


I brought a blanket. I knew I should from being cold on dialysis while in the hospital. Just gonna bring 2  next time. :cheer:
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2ndgenerationesrd
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« Reply #21 on: August 01, 2016, 12:53:35 AM »

dont be afraid mate.im a newb here as well but i been dialyze for 2.5 years.im really glad to find this place which has so many positive and knowledgable ppl here.pls believe that life are full of miracles.keep fighting!!!

Thank you so much! I'm not giving up! I can and I will!
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2ndgenerationesrd
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« Reply #22 on: August 01, 2016, 12:56:28 AM »

Ask to have your blood returned warmer, heavier blanket (I have brought a comforter) and all else fails if your center does not have heated chairs bring a heating pad and a thermos of hot coffe or tea.

Oh yes! I asked them on Tuesday my first day, if it would be OK to bring a heating blanket. Lol I went out looking for one and of course being that it's the middle of summer no one had them in store. So I'm just going order one from good ole Amazon.
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Simon Dog
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« Reply #23 on: August 01, 2016, 05:20:05 AM »

There are risks to catheters, but many people use them for a few months before having a fistula installed and matured without any complications.

And, it is also possible to have a decent life on the hose.    Been doing it 4 years and still not even close to thinking about stopping treatment and letting nature do its thing.
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LorinnPKD
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« Reply #24 on: August 01, 2016, 11:38:09 AM »

>>I just wish things would get back to a little bit of normalcy. Dialysis isn't what's making me depressed its the complications that I've been going through that is discouraging.

That's exactly it!  I had a bit of a rocky start (although not as rocky as yours!) and the two uneventful, normal dialysis sessions I have had since then have really helped to remind me that yes, this is completely doable.  We just have to get through the choppy waters from time to time.  But the more normal we can have in our lives, the better we are.

Good on you and your determination to make it through this and not give up.  I know you can do it. :)
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