Polycystic Kidney disease & receiving a ... - Kidney Transplant

Kidney Transplant
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Polycystic Kidney disease & receiving a Kidney transplant

If you had a transplant and it was due to polycystic kidney disease (PKD), I would like to know if you had the first year low white blood counts and low hemoglobin. 7 mos post transplant my spouse that found out he had PKD at age 30 (now 59), is having since mid March major hemoglobin low numbers. I give him 3X week an injection of Procrit (not retacrit) and the numbers are going down still. His energy has been low since February and he does little around the house (he's retired) and I work full time. He has no energy and it drives him nuts. He shakes badly from medications too. Thanks for writing me back. I have not found anyone with these issues since joining early May to this group. the doctors say it may take a year before the hormone from kidney to bone marrow to make more hemoglobin functions fully. I would like to hear your comments. thanks.

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I am sorry but no my Kidney disease was more of a cirrhosis caused by years of border line hypertension and being over weight. They are not sure really what causes it but those can be the reason why I got it.

Once I knew I had it I was able to control the slow loss by diet. They lasted 18 years before I had to have the transplant. My Daughter donated me her kidney. I am now 14 months post transplant. Every thing was great till the 13 month. Now I have a BK Virus caused from the rejection meds. I am still feeling good but the creatine is slowly creeping up for some reason. Now I have to do labs once a week again.

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I will add you to my prayer list Tarzan 5. Never give up the faith that your body will heal from this setback. I am sorry you are having this setback. Please take care.

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Hi

I had a transplant due to PKD and I have just looked back on my white cell and haemoglobin in the first year post transplant and it too was very low. By the end of the first year it was on the rise and 2.5 years post transplant it is now at a perfectly acceptable level. So I wouldn’t be overly concerned at only 7 months and hopefully you will start to see a rise in the count.

Best wishes

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Hello yahoo999uk, I made an error in my post, he was on Procrit for low hemoglobin and it was working and late May the insur company wanted to change it to 'retacrit' and his doctors approved and since then low numbers each week. 7/11/19 we return to transplant ctr and I am sure they will discuss this issue. It is very difficult to see my spouse be a couch potato more than any position in a day since early FEb. A kidney cyst burst on 2/10 (first ever in native kidney) and 2 wks he was in rough shape, but new kidney doing well, but end of Feb spouse put in hosp 5.5 days due to first 'low grade rejection' and put on high IV steroids and came home with oral steroids high doses, then two uti's later in March, then low hemoglobin and then low white blood count. We just need something positive. I am doing 'everything at home due to his low energy' and work full time, but I am not complaining for I am glad I am strong to do this. It's hard to see him doing so little at home and he's tired of being tired and the shaking from mainly tacrolimus. he had inherited slight tremors from his mom before transplant & surgeon saw it and said, this worsen due to meds. Most of the time my spouse keeps good spirits. The entire experience of this transplant has been more difficult for him and I than when he had 9 months of chemo 29 yrs ago. just being honest. thanks so much for your writing me. I am so happy to hear you are doing well.

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Hello I had a transplant and have PKD. I had low white blood cell count and they took me off my mychophenolate acid for a short while and it came back up. I used to shake a lot too. Maybe they need to change his meds. They changed mine to Envarsus, and I no longer shake. I am sorry to hear about the Hemoglobin problem. I do not have that. Mine is the opposite.

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Thanks for writing me your positive post. I hope you can see my long reply to another person who replied to me with pkd. I hope your health improves each day.

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I am so sorry your husband is going through much, and of course you are going through it too. I know you said your husband had tremors, before transplant, but maybe Envarus would be better for him. I am not a doctor, but I took Tac, and I shook so much, and had so many other problems with it. Envarsus is time released. Maybe you can ask the team. I hope your husband feels better soon, and I wish you the best.

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Thanks 0325 about this medication that works better when the Tac makes the tremors so bad. I will talk to my husband and the doctors next week about this other medication. I see a counselor to talk with and have a few close friends to confide in, and family is 16 hrs away--so I am on my own. Not complaining, but just being honest. It's hard at times, but overall I am ok. When I had to do all the snowblower /shoveling this winter and work after revealed to me I am stronger than I thought. I had never used a snowblower before. I call myself the "snowblower queen " at age 59. ha,ha

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Hang in there. I know it is tough. I live alone.

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You are one strong person to be on this journey of transplant on your own. I guess we all do what we must. My spouse and I are both retired military and I think that is where we get our 'can do this' spirit. write me anytime.

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I had my transplant 19 months ago. I too have PKD.

I had all kinds of problems with Tacro, including hair thinning .My doctor changed me from Tacro to Envarsus and the hair issue stopped immediately. I am now on a daily dose of 4 mgs and feeling much better.

PS : I also take 5 MG Predizone.

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Awesome! :-)

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Thanks for writing me your experience. I wish you continued good health. I am staying patient while seeing if the increase in iron tablets a day for a month work to improve the low 'iron stores and low hemoglobin'. Thanks for your support

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I had my transplant for PKD 5 months ago. My white blood count went not too low, but is recovering. That is normal from the immunosuppressant. I am on Prograf and mychophenolate. Hemoglobin has been ok. I got a living donor kidney before I landed on dialysis. The docs tell me: 1. It is normal for it to take a year for your immune system to get closer to normal 2. The white blood count is only part of the immune system story. I am still waiting for my energy to get all the way back. Good luck.

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Thanks for writing me DexterLab. My spouse's PKD is genetic from his mom and his oldest brother also had this and his wife donated her kidney to him. It was viable 17 yrs then other non-related kidney issues happened and then due to high antibiotics he lost this new kidney. He was on dialysis 18 mos before he died Jan 2018 from a heart attack at age 72. I know receiving a living organ is a huge blessing and does many great things, and glad you are doing well. Keep it up!

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Everything they say about living donor kidneys is true. I was better before I got out of the hospital. My blood pressure was normal and I had bony ankles, both for the first time in 20 years. I have had no complications, but my hair is thinning from the Prograf. My mom, grandmother and brother had or have PKD. I am the only one who got to kidney failure. Luck of the draw.

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Hi DexterLab, The first two months after transplant, my husband felt great and used my treadmill 3-4 times a week and told his friend he felt the best 'ever' in 5 yrs, but that all changed on 2/11/19 when a native PKD kidney cyst burst (never happened before) and then things changed for the worse after that. The native kidneys were not too big to remove one or both during transplant so they were kept inside. A much bigger/longer surgery and recovery to have one or both out we were told if that was needed, but it wasn't. So we wait for the hemoglobin to climb to 10-11. It is in the 7 range now. Thanks for sharing your journey with me. I truly hope you continue to feel good.

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I am 5 months past transplant and my WBC count went very low. My meds were changed. Now I take Prograf (Tacrolimus) 1 mg in the am, (2) 250 mg of CellCept (Mycophenolate) and 10 mg of Prednisone in the am. I take the same dosage in the pm adding .5 mg of Prograf which brought up my WBC into the normal range.

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I was told to take biotin as a hair supplement

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My Prograf was reduced and I am taking a Super-B vitamin. Seems to help with the hair.

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I did not have Polycystic Kidney disease, but have FSGS. When I was about 6-8 months out from my transplant I too had low hemoglobin and low white counts. Doctors had me start Procrit, which I had used prior to my transplant. Transplant center thought my new kidney was not having my bone marrow produce more red blood cells. I also had the shaking, which was due to my dose of Myfortic. Doctors said my body was adjusting to the dose of Myfortic - immunosuppressants. They did decrease the dose I took. By the year mark everything seemed to have worked itself out. No more shaking and hemoglobin was normal. My WBC remains on the low side of normal. I am now 19+ years post transplant and do not have any more of these issues.

All of his problems need to be discussed with the transplant center doctors. Maybe his immunosuppressant dose can be reduced or changed to something else and that would help with the shaking and his blood count.

Good luck! Keep us posted.

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Thanks for writing me WYOAnne about your experience.My spouse found out he had PKD at age 30 while having chemo treatments and cat scans for that and found the cysts. His recent routine oncology appt dr. said last week, maybe the bone marrow could be compromised due to the decline in kidney health, especially the past 4 yrs. spouse is 59 when he got the transplant and never on dialysis. The transplant team are watching this issue like a hawk. we see them next week. I will bring your comments with me. thanks! I am glad you are doing so well.

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Hello. Yes I had a transplant due to pkd. My WBC was very low my first year. I caught pneumonia and was in the hospital for a week. Also because WBC was low I got the Bkv virus which made me super tired all the time. I got injections to try to raise my WBC but it didn't get high enough. So I had an influsion twice and that worked. The tiredness gradually went away. I'm in my third year now. I hope he feels better soon.

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Thanks for letting me know your experience Ada919 about your white blood count issues and glad to hear you are doing well now. My spouse who had transplant 7 mos ago, his white blood count is low and he gets medication via breathing it in at the pulmonary clinic 1X a month and that is improving very slowly and I give his an injection 3X a week for the low hemoglobin. 2 wks ago hemoglobin was 8.3 and last week 7.8 and late May around 9.1 . HIs creatinine stays 1.6 to 1.8. Thanks for writing me.

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Hi

Yes, its frustrating isn't it! You just want to feel better after a transplant and if you have a slow start it can be quite disheartening. You can feel like its never going to happen.

I'm ADPKD. I found the same at first but don't know if the two things were related or not. The doctors tweaked my medication to help and it took a few months to get my strength back because of it. They took regular blood tests and the reading got better, slowly but surely.

Over a year post transplant now and feeling great.

Wishing you the same,

Best wishes,

Mgt

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Hello Mgt8, the white blood count we found out last Thurs is a lot better, but his 'iron stores' are still very low and the reason for low hemoglobin 7.8. So the new change is to take more oral iron pills. He's been on 65mg a day and the change is to increase that to 195mg a day in the next 2 wks. We return to transplant dr on 8/7 and either then it will be determined this is helping or not, and if not helping then the next change is to be given infusion of iron by IV. It is hard for me to watch a more active person become the total opposite the past 5 months. HE makes us supper while I am at work and I am very thankful he can do that,but he is wiped out afterwards. So we try and be patient for the iron stores/hemoglobin numbers to increase so he has 'energy' to do things. Thanks for your support and glad to hear you are doing so well.

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Hi

Its good to hear that iron has been prescribed. I hope that makes a difference to him. The tablets should help and it must feel good to know that you can do something about this.

I had IV iron before my transplant and it was very good.

I found that it made more of a speedy difference than the tablets. Must be because it goes straight into the bloodstream. I was feeling good a few hours after treatment. So if you need to go down that route its all good.

I see you have made lots of contacts on here and I'm sure that helps. Speaking with others in the same situation and those who have been through similar experiences cannot be underrated. I find it as important as the medical help from the professionals.

Feeling better after transplant can be a long slow process but it is so worth the wait when it comes.

Wishing you both well

Best wishes,

Mgt

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Thanks for your supportive words and positive attitude Mgt8. We have been waiting since February for positive strong energy to arrive for my husband. We have faith it will happen, but when is the "keeping patience" part. I have since March been giving hubby 3X a week a shot of Procrit, now retacrit (as of June the change) to help with hemoglobin low too. So lets hope the iron pills improves things and if not do the iv infusion of iron. thanks a lot.

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I had single polycystic kidney disease which apparently is VERY rare. I had that kidney removed when I was 19, and was told I would lead a full and healthy life with just one kidney. Fast forward 18 years and I ended up on Haemo dialysis. My HB was always high day 14.5. However my my Ferritin levels were in my boots. Most readings were about 69 whereas they should have been in the 2-300’s. I was using my my iron quicker than I could make it. However after transplant last year my blood count is now quite stable, so fingers crossed this is a glitch that will even itself out as I’m now 16 months post transplant and I’m okay. Good luck with this and please keep in touch xxx

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Thanks Cazzy41 for writing me about your hemoglobin/iron issues that have now improved. I have to say being/staying patient waiting for improvement for my spouse' health (very low energy) is a 'virtue'. 5 months now he has been very fatigued, little energy and no 'get up and go'. I hope the taking more iron pills helps him and if not that then the infusion by iv of iron 'if' that is the next step needed. Thanks for your kind support. It means a lot. I work full time and spouse with transplant is retired and I have too many hours to 'think' about things. Can get me into trouble.

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