I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Bambino_Bear on September 05, 2013, 01:42:53 AM
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Hello everyone. My husband is 33 years old and was born with one kidney. In 2007 during some routine blood work our Primary became concerned and sent my husband to a nephrologist. At that time my husband was at 30% function. Other than the kidney disease he is healthy. He is now at 12% and we have an appointment to see the cath surgeon on 9/11. We are doing PD. I am terrified and emotional. I am trying to not show this to my husband and be strong for him. I am bawling my eyes out as I type this. :'(
I have been reading a lot on this site and want to thank you all for sharing your experiences. I know this journey will not be an easy one but I will be there right by his side the entire way.
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Welcome Nikki. I understand your fear on this matter. I too am getting ready to start PD and have a consultation today with a surgeon for cath placement. I hope your husband does well on PD and that it makes him feel a lot better. There is a thread dedicated to PD and you should be able to get great information there. Again, welcome to IHD.
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Thank you Shaks24. :thx;
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I hope your PD goes well too!
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Thank you. keep us posted on your husbands status. My wife came with to my surgical consultation today. What a blessing it is to have a loving wife when things are a bit dicey. Your husband is fortunate to have such a caring wife.
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:welcomesign; Nikki! I'm a wifey too so I can understand your terrified and emotional feelings. And the bawling the eyes out thing and not wanting him to know ... eventually you need to let him know/see; you're in this together and it affects both of you in different ways. You need *huggles* and (emotional) support too or it will become too much for you.
So, *huggles* from me!
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Thank you so much Poppy. I appreciate your kind words. I saw on your blog that you donated a kidney to your husband. That is wonderful. I think my brother-in-law might be a match and willing to donate, but if not I have already decided to be tested and even if I am not a match I am willing to join the paired donor program if it means getting my husband a kidney. I am trying to look at the PD as a bridge to get us where we need to go.
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Hi there Nikki, and welcome to the site! This transition you are about to make is neither easy nor fun, but a lot of us have gone through it and are more than willing to help you two to. Ask any questions you have, we'll be more than happy to answer everything we can.
Good luck and keep in touch.
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My husband has his PD cath surgery on Thursday. I am super nervous but trying to hold it together. I want to thank everyone for their posts. I come here after I get my husband to sleep and read everything I can. You all are an amazing group of people. Thank you.
:grouphug;
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Hi Nikki. I hope he recovers quickly and feels better soon.
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Thanks so much Shaks!
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The home visit was today and it went fine. Our PD training nurse was the one who came out and she was very nice. Surgery on Thursday!
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One step at a time everything will be fine. My prayers are with you and your husband for tomorrow.
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Thanks so much.
We have to be at the hospital @ 6:30. My husband is sleeping. I can not sleep. I am nervous and anxious. :puke;
I will post later on after we get home.
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My thoughts and prayers are with you and your husband this morning. May the peace and the strength of the Lord which surpasses all understanding be with you.
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I am hoping that as I type this, your husband is either already out of surgery or will soon be finishing up.
I think you are right to see this as just a bridge to transplant. It is important for your husband to keep his body strong so that he will be a good candidate. Since he is young and is basically healthy, transplant should be a great treatment for him. But do remember that transplant is only a treatment, not a cure. However, for most people, it is the best treatment available at this time.
It would be great if you could at least be part of a chain. Donating to your husband will not only improve HIS quality of life but will also improve YOURS. Kidney failure affects the patient's entire family. Most people don't really understand that.
We'll all be looking for updates from you. You've come to the right place for lots of knowledge and support. Many people really like PD as a dialysis option, and I hope it will be very effective for your husband.
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Thanks so much MooseMom and Shaks. We just got home from the hospital. Our surgeon was super happy with the procedure. He said it went perfectly. My poor hubby is in some pain but doing ok. I do feel relieved that the surgery is done. I call our PD nurse tomorrow to set up a time next week for her to change the bandages. We start training 10/17. I am excited for my husband to feel better. Thank you all so much for your caring and kind words. This is a wonderful place and I am so happy I found it. :thx; :waving;
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I am SO relieved and happy that the surgery went well. The anticipation is often so much more frightening than the reality. I'm looking forward to hearing how the PD training goes. I'm sure that it will go just fine. Now you two can relax a bit and maybe have a good weekend.
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Thank you MooseMom. :-) I will continue to update as things happen. Who knows, maybe it will help someone else about to start down this road. Everyone who has taken the time to comment and post their own stories was a big comfort to me. Thank you all for allowing me to be part of your family. :bestwishes;
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:yahoo;
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Who knows, maybe it will help someone else about to start down this road.
Believe me, it will. While it is always nice to welcome new people into our IHD community, it's also with a sense of sadness that there is yet again one more family having to deal with CKD or ESRD. Very soon you will be answering questions from and offering advice to a new member.
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One thing that really helped when I had PD surgery was the home support RN told me to stop by the clinic any time I wanted a bandage change - I did not have to wait until one was scheduled. I stopped by whenever it started to look a bit ratty. I had a great surgeon for the PD cath installation, however, the RN did a much neater job of bandaging that he did at the conclusion of surgery.
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He is still in a lot of pain. Before I had read that most people don't have too much pain. He feels like a weenie lol. He has been taking the pain meds pretty regular.
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He is still in a lot of pain. Before I had read that most people don't have too much pain. He feels like a weenie lol. He has been taking the pain meds pretty regular.
Nothing wrong with being a weenie! It happens. The trick is to take the pain meds before the pain takes hold. I hope he feels better soon.
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People tolerate pain differently. Managing the pain is a key part of healing quickly. Hopefully the pain will subside real soon. Wishing you both the best!
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Thanks for your kind words. He is having a lot of gas pain which from what I have read is pretty common. Also his skin itches a lot. He never had a problem with that before the surgery. Anyone else have this after PD surgery? :thx;
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Did the surgeon use surgical glue instead of sutures? Mine did and both my arm and belly were itchy around the incisions.
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I'm not sure. He had to go in today to do a change on the exit site bandage as they did a crappy job securing it after surgery. He does have a cough and is going to mention that to our nurse. Are you still having drain pain?
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Did exchange this morning and no pain whatsoever. Go figure! Even when there was pain it was not severe. It felt like my belly button was getting sucked in. lol
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:2thumbsup;
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Today Justin had the bandages changed and did a flush. Everything went great. He is healing really well. He fills and drains pretty quickly. No pain. Everyone is so nice at our clinic and that really helps. We start training 10/17. I feel a lot less stressed now.
:clap;
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:2thumbsup; Glad to hear things are going well and that Justin is healing well. Also happy that your stress level is lower now. Oct 17 is a very good date to start your training, it's always been a good day for me! ;)
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Thanks Mary Joe! :)
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:thumbup;
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Training starts tomorrow. Our nurse called earlier to check on us and to go over what we will be doing tomorrow. Everyone that I have dealt with has been so nice. Here's hoping day 1 will go well!
Shaks how are you doing with the exchanges?
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First day of PD training went great. Everyone was so nice and helpful. Round two tomorrow.
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Hi Nikki. Everything is going ok. I am glad tp hear Justins training is going well. Keep us posted.
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We have hit a speed bump. :stressed;
Everything was going fine with training. Yesterday during our final fill my husband noticed that his scrotum was swollen. He informed our nurse who immediately went into drain. She spoke with another doctor and a neph. They set up an appointment with our surgeon for Monday. Looks like another surgery will be necessary. My poor hubby is so upset, Things were going so well. They told us the body should absorb the fluid over the weekend. Things are still very swollen. No pain. We were advised if he begins to have pain to call and our neph will meet us at the ER.
Anyone else had this happen? :stressed;
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No swelling anywhere Nikki but I have had some issues in not draining nearly as much as I fill. We think it is constipation related so I am taking Mirrolax to see if it helps. This morning I drained real good. 2400ML. I am so sorry to hear this about Justin and I hope they figure it out quickly. I have heard of this happening but do not know much about it. Hopefully someone else will chime in. I know they also get concerned about hernias with PD. Were they using 2 liter bags? Best wishes for a quick resolution.
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They have him doing 1200 fills right now. They don't think it is a hernia. They mentioned something about it being congenital that allows the fluid to leak out. I wasn't there as I had to stay home for the supply delivery otherwise I would have asked a lot of questions. 'sigh'.
Glad things are going well for you! :-)
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I googled it Nikki. It seems this occurs with 3 - 4 percent of PD patients. They refer to it as an inguinal hernia that results in fluid leaking into the scrotum and or genitals. It is repaired with surgery and according to what I read he may have to stop pd for a few weeks while the repair heals. If you want to read about it google scrotal edema in peritoneal dialysis patients. Of course the bottom line is that the doctors will evaluate and diagnose. My best wishes are with you both for a quick and successful resolution.
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Thanks so much!
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Hope the swelling is going down. It really sucks that we are going through so much to begin with and then complications happen. I am praying for a quick and good resolution for Justin. Stay strong.
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Hi, Nikki!
I recently started PD and am now doing automated PD. You can read some of my experience here on a comment I made on this post (look for Vitality): http://ihatedialysis.com/forum/index.php?topic=29683.0 (http://ihatedialysis.com/forum/index.php?topic=29683.0)
My PD nurse had warned me to be on the lookout for possible swelling, but so far, I've experienced none. I hope that the process of rectifying your husband's issue goes smoothly and that he is able to continue his manual PD and onward to automated PD. I can assure you that better days are in yours and your husband's future!
If it is complete body itching that your husband is experiencing, this is not associated with the surgery; it is due to his continued kidney function decline. There are many symptoms associated with Chronic Kidney Disease (CKD), and full body itching is one of them. Another is ammonia breath. The itching is due to phosphorous buildup in the blood; ammonia breath due to the buildup of the products of metabolism of protein. Further, as the kidneys steadily lose their function and the blood becomes toxic, the body starts to try to use the skin as a blood filter. Your husband may also notice that he feels a thin layer of thick oil on his skin after about eight hours between cleansing. This would be his body trying to do whatever it can to rid itself of some of the toxins. In the process, the skin starts to modify its function. He may notice changes as various skin areas, particularly the forearms and calves, change texture and perhaps tone. (I experienced these symptoms as my kidneys began to fail, and researching them led me to find that I had CKD due to long-standing hypertension that I didn't have a clue about.) Not to worry... PD will soon resolve this and all symptoms associated with CKD :2thumbsup;, except occasional edema (water retention) when there has been an overload of fluid consumption. Unfortunately, if he is taken off PD for a period of time, it will only be his skin and failing kidneys trying to cleans his blood, but they will steadily fail, and the symptoms might get a little worse during the interim between now and when he is back on PD. To mitigate as much itching as possible, try to cut out as much high-phosphorous containing foods as possible. Reducing phosphorous will be part of your husbands PD diet anyway.
OK, Nikki, thank you for sharing, and I wish you and your husband the best! I KNOW that once he is on automated PD, your lives will return to EXACTLY what it was before your husband's health declined with only a twenty-minute connect at night, occasional soft shuffle noises from the machine at night, and twenty-minute disconnect in the morning. Your days together will be free to do WHATEVER it is you might do without being on PD therapy, so take heart and look forward to NORMALCY in the near future with the plus of your husband's good health because of PD. :)
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@Shaks24:
...I have had some issues in not draining nearly as much as I fill.
I am known as what is called in the PD world as a "quick transporter". That means that my PD process happens faster than usual. For me, a regular four-hour dwell time was too much! After a particular optimum time, the body will start to reabsorb whatever fluids the PD function might have pulled out and more! Therefore, to alleviate this, a shorter dwell time can help. My PD nurse didn't advise me of this; I experimented and figured it out for myself. I cut my manual PD dwell time to three hours instead of four, and I consistently pulled 900 to 1500 ML extra from 2000 ML bags. The success with this timing helped my PD nurse decide on 1hr 15min dwell times for five cycles for my automated PD program. Try reducing your dwell time and see if that helps.
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Thanks so much for this info. I will try it after discussing with my nurse.
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The swelling has gone down a lot! :2thumbsup;
We have an appointment with the surgeon tomorrow @ 2pm.
Thanks so much Vitality for your kind words. :thx;
I will update tomorrow after the appointment.
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@Shaks24 - Yes... talk to your PD nurse about it. Remember the term "fast transporter". If she agrees with trying a shortened dwell time during manual PD and you find that you do fairly consistently drain more fluid than you fill, you might also ask her if 0 (zero) "Last Fill" in your automated PD program would help you not absorb during the off time (day time) when you are fully trained and doing automated PD with the machine. With the knowledge that I am a fast transporter, my PD nurse decided it would be best if I go completely empty during the day and had me change the program in the machine to 0 Last Fill. (BTW, before I reduced my manual dwell times, first my feet, then my ankles, then my calves, then progressively my thighs, expanded with retained fluid (edema). Hahaha... no pain or anything, but whenever I would look down at myself, all I could think was "I've become a cartoon character!" :rofl; It looked so odd and so funny. (But I know that edema is not a laughing matter.) Reducing the dwell time helped me to get rid of the extra fluid and return to looking normal within just a few days.)
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@Nikki - That's GREAT news!!!
Earlier, I said:
...your lives will return to EXACTLY what it was before your husband's health declined...
Well, that's not exactly true. I'm sure that your PD nurse(s) and doctor(s) have already shared information with you regarding the need to modify your husband's diet to reduce sodium (salt), phosphorus, and potassium consumption. DaVita, a major dialysis services company, has FANTASTIC materials online regarding ALL things associated with dialysis:
http://www.davita.com (http://www.davita.com) - Home page
http://www.davita.com/kidney-disease/diet-and-nutrition (http://www.davita.com/kidney-disease/diet-and-nutrition) - Diet and nutrition
http://www.davita.com/cookbook/index.cfm?cmp=dvahome_cta_cooking_download (http://www.davita.com/cookbook/index.cfm?cmp=dvahome_cta_cooking_download) - recipes
Unfortunately, another change is no swimming, period. :( (I did read somewhere about the ability to swim in some kind of specially prepared water.) And also, no heavy lifting or extra-strenuous activity when your husband is in the "filled" or "dwelling" state of PD. He can exercise while in this state, but nothing that flexes or strains the abdominal muscles. Otherwise, when "empty" or "drained", all strenuous activities are fine.
As far as I know, those are the only lifestyle changes to expect. I, personally, am back to jogging/running, playing tennis/basketball, doing yard work, and working out as usual. Sooo, life on PD is quite normal other than the PD process at night. I holster my transfer set in the wrap-around waist harness. It is unnoticeable, even with just a t-shirt covering it, and I don't think of it during the day unless I specifically examine it. The brain is surprisingly adaptable to changes to the body, and your husband will adjust and feel it normal in a short while.
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So we went to see our surgeon today. The swelling has gone away. Doc did not feel a hernia. So tomorrow we go and have our nurse to a 1200 fill. Our Neph will be in the office tomorrow so that if we have the problem again he can observe it. Assuming we have the swelling we will then go to the surgeon so he can try and figure out what the deal is. I was hoping to have this figured out by now and surgery scheduled. I am a bit stressed out.
:stressed;
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Hope it goes well tomorrow Nikki. Maybe the swelling was a one off event that will not happen again. Prayers and best wishes for tomorrow.
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I want to start by saying that our docs and nurses at our clinic are AMAZING. They are so nice and so caring. We met the social worker and the nutritionist today. We also had our first appointment with the new neph whom I love. He was upset the surgeon didn't do more for Justin yesterday. We did a fill to 2200 and the swelling happened again. Our Neph whipped out his cell phone and called the surgeon on his cell phone to tell him what the deal was and how to fix it. Surgery is now scheduled for Monday. Since my husband still has some function we won't need a chest cath or anything (I was worried about that!)
Also we got our labs back from Thursday and everything was in range. Kinda crazy considering we are new to dialysis. I am feeling much better now that we have a plan. If I know what is going on I can deal. It is the not knowing that kills me. Thanks for the kind words and support!
:flower;
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Other than the reappearance of swelling, great news, Nikki! I'm glad to hear that you and your husband are being well taken care of. Yes!... medical staff can be amazingly kind and caring. I will relate more about that when I present my "intro" soon. I wish you and your husband continued success and increasing feelings of comfort and confidence as you progress on your path to wellness. :)
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Thanks so much V! I look forward to your intro.
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Hi, Nikki. I just posted my intro. Hoping all is well!
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:clap; Finally! A doctor with some common sense! I'm glad the problem will be remedied, but sorry your husband needs surgery to fix the problem. I'm with you on having a plan. It is always easier for me to cope when I know the pertinent information and feel like everyone is on the same page.
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Thanks Mary Joe!
Surgery tomorrow. Getting a little nervous. I know everything will be ok though.
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Good luck Nikki and Justin. May healing and recovery be swift. Thoughts and prayers are with you.
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Thanks guys. Surgery went fine. Justin is in some pain but sleeping due to the meds. We can go back to training as soon as he feels ready. Hopefully it will be smooth sailing from here on!
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Hope so Nikki. Keep us posted.
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Training went great yesterday. Justin is doing his own exchanges. He pulled off more than he put in for the first time yesterday. I was unable to go with to training today. I slipped on a wet floor (lots of rain here) and hurt my knee. I have it elevated with an ice pack and have to stay in bed. Other than that things are going good.
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That's great news on Justin. Sorry about your knee. Hope it heals quickly and you can be up and about soon.
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Thanks!
How goes it with the cycler?
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Not good. Last 2 nights were disasters with alarms. Today we changed the program. Hopefully that will work tonight. If not we may try a different style of machine or go to manuals. I think the other machine is called the Newton. Older style that uses gravity and a pump for the disposal drain line. Fingers are crossed as I got a months supplies for the Liberty cycler yesterday. It was a big pallet of stuff.
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Sorry the cycler isn't going very well.
Training is pretty much over and we go home tomorrow with our nurse. Justin and I feel confident doing the exchanges. We will do the manuals for 30 days and then train on the cycler. I asked our nurse about all the alarms you were having and she said most people have some the first few days and it gets better. I hope it does get better for you! :)
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They adjusted the TIDAL program on the cycler and the last 2 nights have been good. Hopefully that continues. Its nice to be empty during the day and not have to do 3 manuals plus one at night.
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:2thumbsup;
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Training is done and we have done 3 exchanges on our own at home. Everything is going great. Thanks again to everyone (Most of all Shaks) for your support and words of wisdom.
:flower;
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Just checking on you and Justin Nikki. Are things going well? Have you started training on the cycler yet? Hope you both are doing well!
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Things are going good. We have our PET test 12/11 and then will start cycler training after that. We have our monthly appointment with the Neph tomorrow.
How goes the cycler?
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Going real well now. That last adjustment made all the difference. It is nice to be empty during the days and not have to do the manuals. I reorded supplies for the cycler today.
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:thumbup; :thumbup; :thumbup;
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We had a great visit with the Neph today. All labs look great. Our dietitian was so happy we got presents! Our social worker gave us awesome insurance news. Doc says we should be in for transplant within 4-6 months! Happy happy day!!! :yahoo; :cheer: :cheer: :yahoo;
I love the FMC team we have. Everyone has been so awesome.