Post transplant 5 mos no energy

[Gardner-NY]

I am the only careprovider of my husband who received a kidney transplant over 5 months ago. First 2 months were great, and then problems arose and all is fine now except for low hemoglobin. I give him "Procrit" 3X a week by injection (he shakes so badly is reason for he gives 4X a day insulin shots without problem). His energy to do anything is gone. Hemoglobin was 6.8 now 8.1. Does anyone have this issue? thanks

[MomofRecipient]

Good morning. First, congratulations on your husband's 5 month anniversary! My 39 year-old son is 5 1/2 months post transplant and I too am his caregiver. He has trouble with his Hgb & Hct (and other blood work). He receives Arnesp injections once a month for his chronic anemia. It has just this week raised his H & H to 11 & 35.6. The kidney he received was a live donor and they feared it may be a bit small for his size (woman to a man) and the doctor predicted his creatinine would land around 2.0 which it has, but the dr. is okay with that. At least no more dialysis. However, my son is still pretty tired. Drinking lots of water does seem to help a bit. I wish your husband good health and a long transplant.

[Gardner-NY in reply to MomofRecipient]

Thanks MomofRecipient for writing me. My hubby has PKD "polycystic kidney disease" ,never been on dialysis and first two months after receiving non-live donation he was doing great. Then he had 4 setbacks in FEb/March all different so the 'wind was removed from his sails'. Now his GFR is 35,creatinine 1.7 and hemoglobin 8.3 (was 6.7 in late Feb). I keep telling him his energy will improve but not on his or my time table. He is a busy 59 yr old retired man who loves to do yard work and projects with our buildings. I am his only caregiver. His brother had same PKD (inherited) and his wife was donor 19 yrs ago (brother died Jan2018) and kidney was viable 17 yrs. Thanks for writing me. It helps.

[WYOAnne NKF Ambassador]

I am now almost 19+ years post transplant. Soon after my transplant I was also having problems with low Hgb & Hct. I too was giving myself shots of "Procrit" 3 x a week. Doctor's told me that the kidneys "tell" your bone marrow to produce red blood cells. Maybe my new kidney was not doing that function?#@ Anyway, I bet it wasn't even 6 months and the problem resolved. At least for me, I no longer had any issues with anemia. I hope the same will be true for your husband.

[Gardner-NY in reply to WYOAnne]

Thanks WYOAnne with your story. I knew that the kidney makes a hormone that tells bone marrow to make more hemoglobin (protein). My hubby had 4 setbacks in FEb/Mar. He has Polycystic kidney disease and never had a cyst burst, but it happened in Feb. Two wks of blood and blood clots in urine and pain in right back area. Immediately after this started to subside, hospital said you need to be admitted. Creatinine was up to 2.4 and the needle biopsy of new kidney showed low grade early rejection. over 5 days of IV steroids which reversed this issue. Then two back to back UTI's and meds for that, and lastly hemoglobin low. Since 2/11 hubby has not used my treadmill like he was 2 mos post transplant. he lays around the house and is so tired of no energy. I give him the shots of Procrit for he shakes so badly. he is also diabetic on 2 insulins and does his own 4 shots a day. I keep telling him the energy will return,but not on our timeframe. He does not think it will return. He had lots of energy in January2019.Thanks for your words.I have no support group where we are and joined this. YOur words help a lot. Hemoglobin now 8.3 and creatinine 1.7 as of last Fri. Yeah! I am happy for your many years of having a good donation.

[WYOAnne NKF Ambassador in reply to Gardner-NY]

I know he is really tired and doesn't want to do anything, but, he should begin little by little. I actually started to feel better and have more energy when I started to do things again. I started by walking 10-15 minutes every other day, then every day. After awhile, I was able to walk longer and longer, till I returned to normal. I know it is hard, but it does help to get your strength and energy back.....

[Gardner-NY in reply to WYOAnne]

The first 2 months after transplant he was using my treadmill 3-4 times a week for 1.5 miles after the first 2 wks at home he worked himself to do this at 5% incline, but after his 4 setbacks in FEb/March and hemoglobin went from 10 to 6.7 (now 8.3), he tries to do some grocery errands 2X a week after doing his mandated blood labs and is exhausted. His sleep at night is not good for over 5 months also and he naps so poorly. I really think he tries to push himself, but he has nothing to push with his local nephrologist told me. I truly appreciate your writing me back. Hubby is not one to be lax about things. Hemoglobin low also affects your psychological state of mind too I have learned from research. Write me anytime.

[WYOAnne NKF Ambassador in reply to Gardner-NY]

Both of you take care! You are in my prayers that things turn around for him soon.

[Gardner-NY in reply to WYOAnne]

Thank you for your caring spirit. Patience is indeed a virtue!