Mayo Clinic Connect
I am the caretaker of my husband who was diagnosed with FSGS 6 years ago. Over those 6 years his health gradually declined and he is now on the dialysis awaiting a transplant. How do others get through this stressful time and cope with the stress?
Liked by Hollietx, kel822, Firefly
O girl I know its stressful. It took 6 yrs for my kidney to fail as well and have been diagnosed with same. Get the transplant and life should mostly go back to normal. Ideas; advocate for him! I email/call my state reps to try to get bills passed for organ donors. I tell everyone I know about how they can save a life and I have had strangers try to be the donor, also I travel to Mayo regularly (1000 miles away) and I have a trust fund people donate to. I was just at the bank today and there was another $500 in there, but I work hard and share the experience (I have time since Im not working right now) and happy to. You can exercise which I hate but it helps–its a great stress reliever. I make sure and have fun on “good” days. I want to see eveything and go everywhere so maybe you could plan a weekend? They also have dialysis cruises, but they are kinda pricy. Sometimes I just cry and it helps. I also have grown closer to my girl friends cause I need them so much now! So call someone, or google support groups in your area, there are lots of people going through what you are, anyways be blessed! God loves you sister.
You are where my husband and I will be eventually. He has fibronectin glomerulopathy, which is apparently really rare. He was diagnosed at 19 (we are 28) but we just started going to Mayo about a year ago and found out what he definitely had a few weeks ago. I feel SO comfortable about his care now. Before I was always second guessing the doctors.
I don’t know how to cope, honestly. There are no support groups in Orlando unless you’re a transplant patient, so I used my works EAP to find a therapist that can help me work through it. And it’s helping. I highly recommend it. I am learning that our friends don’t want to talk about it. Which is so strange to me. They usually change the subject or get dismissive. I don’t think they can handle it. Our families have been great though, so at least we have that.
I recently bought a sewing machine to learn how to quilt. My therapist says that there’s something about making things with your hands that is helpful with stress. She also referred me to this UMass program. Not sure if I’m ready to pay for something like that yet. Here’s the link if you’re interested.
Hang in there. Our journey isn’t easy, but our husbands make it worth it.
I know how rough end stage is. The diet is tough, the tiredness stinks and the wait for transplant is the worst. I just got my call and had a kidney pancreas transplant. I am still weak but better, and very thankful. Stay positive, eat the renal failure diet or see dietician to get one, and pray.
Oh, I hear you loud and clear and totally understand where you are coming from! Once I figure it out – I will let you know! My husband is a Type 1 diabetic, who is waiting for a kidney/pancreas transplant. On our road, we have run into a lot of road construction, detours and potholes! I personally see a counselor, to deal with the stress and anxiety that comes with this package.
Personally, it drives me crazy that oftentimes the doctors and nurses will only look at the patient and say that he is the one in the drivers seat. This is true – however, they don’t seem to recognize that I am the only holding the GPS and putting gas in the bus!
What if we started our own support group??? It could just be a blog on the site – to vent, support or whatever else. To me, It just feels like the caregivers seem to be forgotten at times.
Let me know if anyone is up for doing an online support group.
Hang in there!
Liked by kel822
Bless you both .its as difficult for the patient, as it is for the loved onewatching the decline. My family had to watch for many years, and it hurt me to watch them watching me decline. Best advice I could give the family is set up dialysis and go on vacation. They have dialysis centers everywhere, and personally you all need it. Its rough road, and bless my husband he couldn’t take it and left after transplant and missed the best times of my life, because after that gift, life doesn’t ever get better. Go to support groups because you are the closest, so you will take most of the shit. see psychologist, no joking. to get your aggravation out. Dont give up until the miracle comes, its so worth it to have a life with humility and gratefulness. My heart goes out to you both and god bless
My husband has had FSGS (Focal Segmental Glomerulo Sclerosis) for 11 years. He has not needed dialysis or transplant as of yet. 4 years ago he started going to Mayo in Rochester and had been stable for 4 years. About 4 weeks ago he had a relapse and gained 10 lbs of water weight. August 13th he went up to Mayo. He had a biopsy done which didn’t show anything new. They infused him with 1000 mg of prednisone which we don’t think phased him; the prednisone pills he took years ago did awful things to him; upset stomach and angry feelings . He takes 4mg prograf in morning and 4mg at night; he has taken prograf for the last 4 years. He goes back up to Mayo Sept 12.The doctor is crossing his fingers that my husband will get over this relapse, but there is no guarantee. This morning I am feeling a little overwhelmed; He has to eat low potassium, low phosphorus, along with his already low sodium, low protein diet. He is on 40 mg lasix 2x/day and gained .8 lbs this morning on the scale, in the last 24 hrs. For whover reads this, I would appreciate your prayers for my husband and also for me and our 14 yr old.
My husband has also had a problem for a long time, getting up to go the bathroom about 3 times a night even though he takes Detrol for that. He has had his esophagus stretched twice because the muscles in his esophagus don’t work right; he is at the point where it is hard for him to swallow meat and that doctor says whenever my husband is ready that doctor will do another stretching -ugh, it is awful; they put him all the way under and it is difficult for me to watch him come out of the anesthetic (sp?); he takes prevacid for this condition.
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