Hello from Massachusetts / PD land

[KidneyWife]

Hi everyone! I am here to exchange information and support because my husband started dialysis this year (quite unexpectedly). A few things about his condition:

- He is 37 years old
- Diagnosis: IGA nephropathy with ESRD on 12/31/12
- His condition went undiagnosed until his kidneys failed almost completely. I've known him for 8 years and he was always very healthy. He thought he had the flu and started getting leg cramps at night. On Christmas Day (2012) I took him to the ER with breathing trouble. His GFR was 5%, blood pressure 200/115, creatinine over 14. It was a total shock. He received emergency dialysis, 4 blood transfusions, a plasma transfusion, and test after test after test. One week later the biopsy results confirmed the diagnosis and he was released from the hospital with a prescription for blood pressure medication (Lisinopril) and phosphate binders. He was on hemodialysis (3x a week through the neck cath) until a few weeks ago.
- He lost 35 pounds in December because of his illness, and has been trying to gain it back since he got home... no luck so far, but hopefully PD will help.
- He went 10 days with no dialysis - he had to stop hemo early because they found yeast on the site (no infection in the blood, luckily) and he got a crash course in PD. His potassium got so high he had to drink the liquid medication to help his body eliminate it. He's still a little uremic, but he seems better every day. Starting PD after just a few days of training was intimidating but he seems to be doing well with it.
- We are waiting for a letter of acceptance (hopefully) from the Umass Memorial Transplant Center in Worcester MA. Current wait time for his blood type is 4-5 years so we are hoping to find a living donor.

This has all been overwhelming and unbelievable as I'm sure you can all relate. But I am just grateful he's still with me. He is amazingly strong through all of this and has no interest in seeking communal support online, but I am very interested. I've joined a few facebook groups that have been really helpful. I wanted to join this site particularly because we have so many questions and concerns about PD.

Thanks for reading!

[dublin]

Hi everyone! I am here to exchange information and support because my husband started dialysis this year (quite unexpectedly). A few things about his condition:

- He is 37 years old
- Diagnosis: IGA nephropathy with ESRD on 12/31/12
- His condition went undiagnosed until his kidneys failed almost completely. I've known him for 8 years and he was always very healthy. He thought he had the flu and started getting leg cramps at night. On Christmas Day (2012) I took him to the ER with breathing trouble. His GFR was 5%, blood pressure 200/115, creatinine over 14. It was a total shock. He received emergency dialysis, 4 blood transfusions, a plasma transfusion, and test after test after test. One week later the biopsy results confirmed the diagnosis and he was released from the hospital with a prescription for blood pressure medication (Lisinopril) and phosphate binders. He was on hemodialysis (3x a week through the neck cath) until a few weeks ago.
- He lost 35 pounds in December because of his illness, and has been trying to gain it back since he got home... no luck so far, but hopefully PD will help.
- He went 10 days with no dialysis - he had to stop hemo early because they found yeast on the site (no infection in the blood, luckily) and he got a crash course in PD. His potassium got so high he had to drink the liquid medication to help his body eliminate it. He's still a little uremic, but he seems better every day. Starting PD after just a few days of training was intimidating but he seems to be doing well with it.
- We are waiting for a letter of acceptance (hopefully) from the Umass Memorial Transplant Center in Worcester MA. Current wait time for his blood type is 4-5 years so we are hoping to find a living donor.

This has all been overwhelming and unbelievable as I'm sure you can all relate. But I am just grateful he's still with me. He is amazingly strong through all of this and has no interest in seeking communal support online, but I am very interested. I've joined a few facebook groups that have been really helpful. I wanted to join this site particularly because we have so many questions and concerns about PD.

Thanks for reading!

Hi dublin wellcome to ihatedialysis.com you will get plenty of answers on this web site from people who are going and went through what yous are about to go through , i have seen answers to my questions  . This is really a friendly site with lovely people , again wellcome. 

[MaryD]

Welcome, KidneyWife!             

You've had rather a shocking introduction to kidney failure, but it sounds as if you've got everthing under control.

I saw in another post where you asked how many posts you are allowed each day.  I believe once you get to one million posts in one day you will be cut off for the rest of the day.    Ask away!

Again, welcome!

[boswife]

your funny MaryD... ANd Welcome kidneywife   You are soooooooo right in searching out and finding this here place    This kidney stuff has so much to question and theres so many people here who are so willing to help.  We do home 'hemo' for 2 1/2 years and doing well with it.  Wish he could have done pd (and dont really know why he couldnt have) but this has worked well... ASK away, great place you've found!   

[smcd23]

 

My husband was listed at MGH in Boston until he switched to Dartmouth in Lebanon, NH because the wait up here is less. He had his 2nd transplant in June and rejected. He's young too, and experienced his kidneys failing suddenly, though unlike your husband he knew it was going to happen someday, just not expecting someday to happen so quick. I hope your husband takes to PD well. My husband was on it for a few years, and he loved that he had fewer food restrictions. He was able to gain some weight back and maintain his weight easier, so I hope your husband can gain back what he's lost. My husband is back on hemo and has been since his 2nd kidney rejected. I assume you're in the Worcester area? (I am from MA originally, but closer to Springfield) What blood type is your husband?

Hope you find answers to any questions here. I think everyone here is pretty spiffy and very helpful

[KidneyWife]

Thank you all for the very warm welcome!

I assume you're in the Worcester area? (I am from MA originally, but closer to Springfield) What blood type is your husband?

Hi SMC! Actually we live in West Springfield right now! We've been there for a few years.. he's from Palmer originally and I'm from Milford which is closer to Boston. He was at Baystate when we discovered all of this so his neph is from Pioneer Valley Nephrology but they suggested Umass Memorial over Baystate so we listened. He's 0 neg. It's wonderful that you were able to try your kidney.. my blood type isn't right and I'm probably not even eligible for an exchange because I've been developing kidney stones for over 10 years now but there are a few family members of his that are interested, so we're hopeful. I've been to MGH many times for my father's heart problems.. such an amazing hospital. Umass has been great so far. We're lucky to be in an area with so many options.

My husband has actually gained 10 pounds in the last week.. he's 6'3" and doesn't appear to have any swelling, so I'm not going to panic yet, but I am definitely worried it could be fluid retention and his PD nurse is on vacation this week. So continues the adventure..

[Poppylicious]

  KidneyWife from yet another kidney wife ...  . My Blokey was 33 when he was unexpectedly diagnosed with CKD and was on haemoD for two and a bit years before he got a transplant in 2011.  He tried PD but he was one of the people it doesn't work for (which turned out not to be an issue because we both found it easier for him to be on haemoD.)  Your story does sound a tad more shocking and scary than ours.  I still panic about everything; I've got used to the random naughty voices in my head trying to convince me that something's going wrong!

Glad to have you here ...

 

[smcd23]

Hi SMC! Actually we live in West Springfield right now! We've been there for a few years.. he's from Palmer originally and I'm from Milford which is closer to Boston.

I grew up near West Springfield and my mom currently works out of W. Springfield. Amazing how small the world is.

Really, don't sweat the weight gain - if he's eating better and getting UF on his drains each night it's possible he is starting to recover as best he can.

[lmunchkin]

Welcome to the world of Hating Dialysis!   Yeap, we had no clue either.  Ton of bricks falling on us all at once.  It was devastating to us both.  Wish I had found this site when it all came down, but found it much later!  I and many other spouses know exactly how you feel.  It isnt a Picnic, is it?

But as time goes, it will get better. My husband did PD for 5yrs, and did fine with it.  I just don't think it cleaned him as well as Hemo.  Now he is doing Home hemo and quite the spunky fellow he use to be.  Not 100%, but as close as it gets.  I know they didnt plan on this happening to them.  Yea, they probably could have paid better attention to what their bodies, but they didn't know.

Trust me, they would love to be back like they were before.  It is so hard on them.  Really is dear!  He is lucky to have you! Just be sure to get some time for yourself.  It is all so very overwhelming at first for sure.  but things will get easier in time.

Again welcome & God Bless,
lmunchkin

[Darthvadar]

Hi KW...

  to IHD....

I'm caring for my mum, Elsie who has KF and Parkinson's... I administer her PD as she's now too shaky to do it herself...

If I can be of any assistance with advice or support (for what it's worth), feel free to get in touch... I don't bite... Well, not hard!...

Darth...

[BattleScars]

Hi KidneyWife! I'm new to this board also but I've been doing PD a little over a year now and I'm also near you guys. I live in Gloucester, MA. I'm 39 and I can sort of relate to what your husband is going through. I was also 37 when I started having such bad kidney issues that they told me I would need dialysis in the future. My GFR was about 10 then so I still had a little bit of time to prepare.

The first few months of life on PD are a bit of an adjustment. I don't don't how much solution your husband is using yet but I gained about 10lbs in the first month. He should check with his nurses but I think as long as he doesn't have noticeable edema in his legs and his blood pressure is stable it's probably the PD solution (I'm told it's like eating 4 candy bars a day) and he's just gaining some healthy weight back because he's probably eating better?

I actually have the opposite problem. I'm trying lose some weight. In the past year I gained nearly 20lbs. I'm 6'2" and not really overweight but I could stand to lose probably 40lbs. It's always hard to tell what's fluid weight gain and what's from too many calories. Life on PD isn't too bad, for me it's very time-consuming. I have to rearrange my schedule to fit my exchanges into my day.

If you have any questions for me I would be more than happy to help in any way I can. Maybe we can even share resources and ideas since we are in the same area. I'm currently being treated at MGH in Boston but they haven't always been helpful with information or answering all my questions about PD. A lot of it I had to find out on my own through experience or just searching the web. Let me know if I can help.