Hi everyone

[ramlamb57]

Hello fellow dialysis "haters"

My story starts about 3 years ago when my blood tests indicated a referral to a nephrologist. What a bedside manner he had LOL. Basically said it was all my fault that I am a Stage 3 because I had Type 2 diabetes that was only moderately controlled with oral medication (HbA1C was usually 7). He then told me it would be about three years until I was End Stage, and there was nothing I could do to prevent it...just get ready for the inevitable and get an access. Naturally, I didn't get one at his suggestion. He did suggest staying away from Advil and avoid getting Vancomycin. Stupid advice, since I was also having foot infections which only responded to the stuff.

Now skip forward to January 2014. I had a well paying job as an Engineer Manager for an Aerospace company, and I ignored the symptoms of leg swelling and loss of appetite, even though  I knew it was a result of my kidneys deteriorating. I was missing work for medical reasons more frequently. Well, my company laid me off..reduction of staff they said..but all the people laid off were over 55. I tried to sue, went to one of the best labor attorneys in the city, but he basically yawned and said "You can't prove anything, they went by the rulebook." OK..strike 1 Happy New Year.

February 2014: While going to take a shower, I fell outside of the tub..naked, wife wasnt home...she was giving her sister some boots because of the crappy snowy weather at the time..I heard and felt my ankle snap. I live in an apartment building, so the only thing I could do was scream for help. Finally, the superintendent heard it, and called EMS. Another bunch of caring souls. Two cops came with them, and when I told them I broke my ankle, they said "No you didn't..walk to the stretcher cause we aren't going to carry you. My water weight was making me very heavy at the time. That went well, believe me.

Emergency room...Orthopedic Surgeon said my ankle broke in three places..he tried to set it, and got it OK, but he said I will need surgery. At this point, I was morphined up, and my wife was by my side when they contacted her. So the blood tests come in, and creatinine was 10, so they performed emergency dialysis catheterization thru the groin. Well, they had some interns doing it (for the first time, apparently) and the dug into me without anaesthetic (morphine wore off  by this time...my luck). Well, finally some resident hears my screams...the idiot interns could not find a vein. He does it in 5 minutes..what a relief. The fun continues..bear with me.

In ICU now...they did emergency dialysis overnight. They prepped me for a chest catheter.My nephrologist in the hospital was an extremely compassionate, sweet person. Later on, she would become my outpatient nephrologist. On my way to radiology..OK they inserted a "Permacath" fine. Next..off I go to another dialysis treatment, and then to surgery for my ankle. They had to put an external fixator on it instead of internal titanium screws because the were afraid my foot would become infected.

Several more days of dialysis, didn't want to eat the hospital food because I was depressed about all the things that happened to me in these two months. Had to be given a liquid protein something or other, which tasted vile. Anyway, I was sent to a rehab center for physical rehab of my ankle and dialysis at a center conveniently near the nursing home.

Over two months , I started to feel better. I lost all the water weight, and was feeling much better with injections of Epogen. The thing I couldn't stand was the rapid loss of blood pressure during treatment, which resulted in putting saline back in me...kind of defeating the purpose. To this day, I am plagued with this battle. Water weight gain is the hardest thing for me to control.

Jump to the present. I am home, my ankle has healed, and I go to a dialysis center three block away from my apartment. It is run by that godsend of a nephrologist I met in the hospital. I have an access in my upper left arm, which works better every month. Financially, I'm glad I could get Medicare and Disability without too much effort. I am trying to find work, but that is not working too well.

All my numbers now are within normal parameters. The  diabetes is practically in remission (Hb1AC always 5.4)  The only problem left over is trying to remove the water I gain between sessions. I usually gain 3 kilos over the weekend, and when they set it to 3.5, my BP drops below 100, and they have to slow it down, so I usually have a net accumulation on my dry weight. I estimate I have gained about 15 lbs of water, most of it accumulates in the abdomen (ascites).

So here I am now. I want to see how other people deal with the issues during hemodialysis. Thank you for sitting this one out.

[cassandra]

Welcome to the site ramlamb57

   


Maybe you can reduce your liquid intake by using smaller glasses or cups, and reducing salt to make you less thirsty? 3 litres really is a lot to gain. At some point it could be real heavy on your heart too.

Take care, Cas

[Zach]

Hi ramlamb57,

It's good to have you here!

 

[Michael Murphy]

I see you have had a bad time but most seem to have a bad time at first.  The only thing I did right in my pre dialysis days was having a fistula installed three years before I started.  I am now retired on ssa disability but I am 64 so it was almost time.  In the last 12 years of my working life I was laid off three times and it was almost only the older employees.  However I had enough time to retire fro AT&T 11 years ago and it's great to know every day that I wake up costs them money.

[Rerun]

Hey, your story sounds a little familiar to me.  The emergency access in the groin and then the chest cath.  I was so sick I didn't care what they did.  But you start to feel better.  Thank you for joining us.

Welcome - Rerun, Admin.            

[Vt Big Rig]

Welcome to the site ramlamb57.

I always feel a little strange with a new welcome. Happy for you that you found the site. It is very useful. Sorry for you that you have joined the land of needles, chairs, and hoses. But you will feel better.

One thing that really helps me ..... during Next Stage training they continue to mention ....."Keep calm and carry on" .... I have found I can apply that to everything in my life and it helps. Maybe it is my engineering training but I can now do better at thinking it out and taking an action to fix it or make it better.

Whatever is thrown at you ... you can handle it.

[MooseMom]

Oh my, what a saga!  At least, I'm glad it has ended relatively well.

Something VT Big Rig said above made me wonder if home hemo with NxStage might work well for you.  As you have training as an Engineer Manager, it might be right up your alley.  More frequent dialysis at home might help you will better control over your water weight gain, perhaps?

Anyway, I'm glad you've joined our community.  You will find lots of support here!

[Hootie]

Agree with MooseMom on consideration for NxStage. If you are an engineer, you will like it. The water weigh gain can be more easily managed with the five days. And the big one.....you do it on your schedule....Sorry for all your troubles. This site can help you think thought things for the future decisions.

Joe

[Simon Dog]

Depending on your state, you may have the right not to be treated by an intern or resident, and can insist of having a procedure performed by an attending.  I got my groin cath on a weekend, and they called in the attendnig vascular surgeon who did a great and pain free job.

[Simon Dog]

Agree with MooseMom on consideration for NxStage

NxStage is great, but they won't release the IP protocols  .

The only thing I don't like is the alarm is not loud enough to wake me if I fall asleep during treatment, so I had to add my own external alarm.

The control panel actually provides less data than the Nx2Me ipad software.  For example, the Nx2Me shows actual blood pump speed; the Nxstage control panel only shows the set speed.  You can see all the pressures at a glance on the Nx2Me, but have to wait as the display cycles through each on the NxStage.