Yes my name is Randy have had kidney transplant for nine yours I became allergic to my immunosuppressant drug no I go once a month for an IV for 7 years now I have prostate cancer and cancer on my lip I do not want to do radiation and I don't want my lip cut off I ask myself is this worth it I just let God do his work
I have had enough: Yes my name is Randy... - Kidney Transplant
I have had enough
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Randy1805
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I'm sorry Randy, It is overwhelming to deal with diseases like transplant or cancer😔. To know both taking immunosuppressants and other medicines make you live and killing you slowly is hard. I have had kidney transplant for 10 years, I was 14 years old at the time. After transplant, I often ended up being in hospital. Even in summers I got cold and it made me to the hospital, got through chickenpox badly and got high fever 3 nights, compared to my healtyh brother. I don't remember times without being hospital for 1 year or sickness related to low immune system. I miss my healthy times , my childhood. I lost my health and youth. Now 24 years old ; bone thinning ,hump ,fragile immune system, unclear future . I know these medicines or something else related to my immune system will be my end.
Socially, I couldn't tell anyone that I had a transplanted kidney( I always took my medicines late for several hours while outside). I couln't swim. When people asked what is the scar on my neck ( my catheter scar) I told them that it was a childhood scar. I didn't go to college because there wouln't be a happy ending future for me. Instead worked and visited countries but couldn't be happy. Where I live Kidney transplant patients are eligible for disability certificate and given as %75 disability. Who said We are healthy 
I share your sadness Randy. I just wrote what I feel. I have had enough too. But I cannot advise you what to do. I also don't know how deadly your cancer etc, If you have chance to recover, you can try it.
It's sad that you are so young I wish the best for you. They want me to do radiation they already put tattoos on me. I just want to cancel my appointment. 6 weeks of radiation I have to travel 44 miles each way I couldn't begin to tell you what I have gone through. And God bless you and I wish you the best of luck
Randy, I want you to know that I’m praying for you and I’m going to get my friends to pray for you too.
Thank you, and God bless
I appreciate your sharing. We hear so many times about the new life you will have with a transplant. We forget that this new life presents new challenges. Take care and God bless you every moment.
I have no answer. Just prayers and appreciation for the courage that you must have each day.
I feel for you both. I had by second transplant over 30 years ago. I am now 59. The last 5 years have been a painful and costly challenge. I too have thought about dumping meds and letting nature take it's course. However, I know doing this would be a slow agonizing end and cause more pain and discomfort. There are other ways that would be faster, but then I know people would miss me and I would have destroyed so many lives by ending my pain. My transplant saved me from a quick end when I was 20. I owe it to the transplant, my husband and friends to keep plugging along no matter what challenges I am facing. I encourage you to do whatever you need to ensure a recovery. Please seek out help from a social worker or therapist to help you through this agonizing time. I am sending good vibes your way and hope you find the support you need to get past all of your issues. Stay on this chat site and let us all know how you are doing.
Randy1805 in reply to
Thank you and I'll stay on this chat
Thank you for sharing your life experience. I had a kidney transplant in 2019 April, ever since then the meds are killing me, I feel like I cannot have a normal life. Now I have cognitive issues, I cannot think, understand, remember anything, I get headaches, cannot fall a sleep at night, I have pain all over my body, feel depressed all the time,I can go and no with my problems. I tried to go to college but cannot concentrate on anything, always get headaches and my body is always in pain from head to toe and my energy levels are so low as I cannot keep up with teacher. I was looking forward to starting my new career once I finish college but I dont think I will finish. Kidney transplant does not look like what you expect it to be. I am 41 and on disability benefits after my transplant and cannot have a normal life. Transplant is not a cure it's only a treatment. Thank you for sharing your story. It's time people know the truth about transplant. God bless those who are struggling with a transplant.
Normal life what is that I forgot there is no normal life for people like us Thank you God bless
I am so sad to hear this and I feel exactly the same Tahmed251. I had a kidney transplant from a deceased donor, this past March and the meds have taken away any joy or hope that I will live a better life now. I am 49, I have had a difficult life for sure, but I always remained resilient and hopeful until now. The immunosuppressants have significantly decreased my quality of life - I felt better on peritoneal dialysis which didn’t go well either! I sincerely regret going through with the transplant at this point, and stopping my meds is a consideration I am seriously thinking about. I don’t feel like I have a future to feel good about or look forward to. I feel numb and sad and bitter every day and I can’t see how things will ever be better. It’s hard to have any hope at this point, especially knowing what others are going through as well.
I have decided to go with radiation and also having my lip removed I have six kids and nine grandchildren I'm doing this for them. And you should do the same for your family God bless
You are well loved by your big family You deserve love and respect no matter how your "temporary" poor health makes you feel. You are stronger than you think and more resilient than you feel. Hang in there and we will all be cheering for your victory very soon.
God bless you...
Randy you have started a conversation that needs to be shared. The medical community in some ways has made transplantation a complete success story without giving the true picture of what may happen. On this site there are multiple descriptions of unwanted reactions to medication. Some minor and some severe. I hope the medical community is listening and doing follow up studies to bring about new treatments and medication to improve outcomes. We all make a choice as to whether to live our life on dialysis or when opportunity arises have a transplant. Each have their limitations. I was happy on pd and felt I could live that way but when offered a transplant I was told by medical literature it was a better option. So I chose it. Yes I do feel less restrictive. But as you and others have noted the problem is the medication and whether there will be rejection. As well now you are more open to reactions to viruses and cancer particularly skin cancer. Which is why this forum is necessary. It gives a chance to share and in time bring our concerns to those in the medical field who can make a difference. Sometimes I think we are put off because doctor's feel we should just feel fortunate to have been given the opportunity to have a transplant and be silent. For example we were a second thought as a covid serum was developed and only now has attention been brought to our special situation. Perhaps now is the time to be a squeaky wheel to demand for rejection drugs with less severe side effects. I have always wondered how researchers determine what drugs to develop and what drugs to update. Sometimes it all comes down to power and money. Perhaps the organization's who support this website and other organizations who promote for kidney patients can speak up to make a difference. They may already be in the process but need to be more public. With the rise in obesity and diabetes in younger people our numbers Will be growing.
My friend I can't stop thinking about you. Please keep taking your meds live each day with hope please
That message is forTallyn
Oh? But compliment stands.
I am sorry but I disagree with your writing that "doctor's feel we should just feel fortunate to have been given the opportunity to have a transplant and be silent." Or , "we were a second thought as a covid (vaccine?) was developed and only now has attention been brought to our special situation. " I have been teaching and doing biomedical research for more than a decade and neither of your two statements are accurate. You may "feel" like a victim hence your feeling skews your conclusion but I can assure you that those statements are simply untrue.
Thank you for replying and expanding my perspective. I truly respect my doctor and feel he has my best interest in mind. However I do feel that such emphasis is placed on getting a transplant with little emphasis on stressing the downside - which is evident by this original post. The pros and cons of each treatment should be emphasized by medical staff and very often that is not the case. On the other topic I shared - pharmaceuticals and research on new products sometimes can be manipulated by greed. I am sure there are great research scientist that are honestly working for the good of society but there are pharma bosses who use the patent system to manipulate price gouging and prevent better medications reaching the market. I am sure treatment for transplantation has improved over the years but have there been cases where money and profit has manipulated the progress. There is a reason big pharma exists - profit. And there is a reason that doctor's have become the new millionaire class. Sad to say I believe some day the anti rejection medication that transplant patients take Will have beeen found to be manipulated to continue a profit. I found this true to some of the medication that I took while on dialysis and I have had doctor's leave their practice because they thought the new health care system was going to cost them the high salary they were earning. We see regularly on the news medical professionals and pharma companies take advantage of patients in need. So please excuse me if I have some hesitation in accepting that scientist and doctor's have done their best and there are no anti rejection medications out there that work better than what they are providing today and have been providing for years and years. At some point and time we all Will be driving electric cars. It's time for transplant medications to be updated also.
With that said let's end our conversation because we will not agree.
And concentrate on helping others find the best life possible through support and caring.
I agree. I also propose that we don't capitalize on individual member's unique suffering and medical issue to pursue our own agenda.
Totally. I guess I felt anger and frustration that these people were suffering and could not find solace or understanding in the medical and social community where they live and had to turn to an online forum. But thankfully it is there. I guess in the grieving process anger is one step you go through. Even though you are grieving for someone else's misfortune. The world should be a better place.
This original posting was the most difficult to read out of all that I have seen so far. It brought all my minor concerns into perspective. These individuals are facing great challenges.
LisaSnow Truthfully, I didn't expect you and some of members on this topic. Because you and some members here are the optimistic ones and looking transplantation as a miracle and this topic may be too realistic for you. If someone says their problem or anythingelse . You are always against their ideas and suffering.
I am actually bored whenever I saw your comment starting with ''gift'' ''Miracle'' etc.
But when people talk about in a negative way or against transplantation. It turns out for you '' unique suffering'' ''Psychological problems nothing related to gifted transplant etc...''
I once remember, I wrote that avarege life of the kidney from 10 to 15 years. Some members were against this although the statistical data and real life data we see, ıt is true. Some of the this members again like this ; '' Mine lasted 35 years'' '' Normally tranplanted kidney last 30+ I am ok, surely will be ok '' '' Medicines are not harmful at all''
In short, I want everybody to respect each other's ideas, sufferings. After I joined this forum , I always remarked that some people here are too optimistic. And I realized some people with complaint about transplant or medicines being suppressed by those. And, this topic is the first in this forum, people with their suffering stories and their ideas about transplant.
It is good to see people waited a topic like this to express themselves.
P.S I didn't write to argue , just expressed what I thought and saw after I joined this forum. And If you want to answer please use pm because I don't want an argument under this topic.
Truthfully, I am very sorry for you ongoing sufferings. I hope you see light at the end of the tunnel eventually, but it is completely up to you. I still believe you have a great life ahead of you with many blessings to be discovered. Transplant is not a magical solution to all, but it does give a new beginning to create our own joy and successes especially for someone so young like you.
in reply to Eyak1971
"the medical community has made transplantation a complete success story without giving the true picture of what may happen." What are you talking about? Couldn't you say that about ABSOLUTELY any area of speciality in medicine (e.g. oncology, transplantation, psychiatry, etc.). There are trade-offs one makes when getting treatment for such things as cancer, ESRD, or mental illness — these are just a few examples. Despite side effects, sometimes serious, these fields of medicine ABSOLUTELY provide life saving technologies. My one uncle, who is now five years post transplant, now has a very aggressive form of prostate cancer. Of course he is down-and-out about this diagnosis, but he is still getting, hopefully, live saving treatment in the form of radiation and seed implantation.
Apparently, you are not aware of the great strides that transplantation has made in just the last decade (e.g. medicine, robotics, etc.). I'm taking advantage of all of those technologies, I'm also second generation transplant in my family and I'm much, much better off than my father and my uncle — who had their transplants nearly 15 and 20 years ago. Will my sister, niece and others be better off when/if they need a transplant in a decade, two decades, or whenever? Of course. Based with my family history of PKD and transplantation, I KNOW the trade-offs involved.
You are going off the rails through your efforts to be the "squeaky wheel" and doing no-one anyone any favors by doing so. When I read your responses, I became sick to my stomach. This thread went from a desperate plea of "I've had enough," to your inappropriate, hyperbolic rant.
At minimum, and probably at most, you need to encourage the person in need as well as to point out helpful resources to make sure the person stays well.
Eyak1971 in reply to
Thank you for your reply and the best to you and your family on their journey.
For those on the same journey I found the info on medscape informative.
The ability to prolong life by transplanting organs had long been a dream of medical practitioners. Early efforts at transplantation were unsuccessful because of inadequacies in surgical technique and lack of fundamental knowledge of the immune system.
Skin and eyes were among the first successful transplants. However, the more complex organs posed countless problems. The kidney was the first such organ to be successfully transplanted. Surgical techniques progressed with the unsuccessful attempt at transplanting a cadaveric kidney in 1933. Initial attempts at immunosuppression were with total body radiation, but all the patients died. Steroids alone were then used, also without success.
With the development of 6-mercaptopurine (Purinethol), followed by azathioprine (Imuran) in the early 1960s, pharmacological immunosuppression became the standard of care. In the early 1960s, 2 major breakthroughs finally addressed the rejection problem. Beginning in 1962, it became possible to closely match donor and recipient tissue. After the first initially successful series of transplantations performed between 1962 and 1964, the combination of azathioprine and steroids came into widespread use and became part of the primary immunosuppressive regimen for the next 20 years. The first human pancreas transplantation was performed in 1966.
As knowledge of the immune system evolved, therapy targeted to specific immunoregulatory sites became possible. The first polyclonal antilymphocyte globulin was used in 1967 and spawned the development of other polyclonal and monoclonal antibodies. Introduced in the 1980s, cyclosporine (Sandimmune and, later, Neoral), a calcineurin inhibitor, was used in combination with azathioprine and steroids and was credited with a dramatic improvement in graft survival. Cyclosporine greatly improved the outcome of such transplants. The first successful heart-lung transplant was carried out in 1981.
The next advance came in 1994 with the introduction of mycophenolate mofetil (CellCept). After tacrolimus (another calcineurin inhibitor) became available in 1994, debate followed regarding which calcineurin inhibitor was superior. Tacrolimus has gradually supplanted cyclosporine in many centers. In contrast, mycophenolate mofetil rapidly replaced azathioprine almost universally. To expand the armamentarium further, sirolimus (Rapamune), a macrolide antibiotic, was developed and released.
While the short-term outcomes provided with these medications have continued to improve, the consequences of their administration have become the subject of intense scrutiny as comorbid conditions, drug toxicities, and adverse effects keenly affect both patient and graft survival.
Randy you must decide if life is worth living. I think it is. Hang in there. Get someone to drive you to radiation. Talk to God.
Dear Randy,I don't know the degree of skin cancer involvement you have, but can share with you some topical remedy that minimizes radiation-associated side effects and to also help speed up post-treatment healing. I will pm you.
Lisa - so that feel more comfortable interacting with you can you share with me and others your professional background. If you have done it on other posts and I have missed it I apologize. Thanks.
Message from the forum administrator: "HealthUnlocked is designed to be an anonymous online public platform, through which people can share their health experiences safely. In order to remain anonymous we recommend that people don't share their real full name or their contact details, or any other any other piece of information that could identify you." (Especially relevant for "unlocked" posts like this one.)
The reason I ask is because your answer to Randy is on the verge of solicitation of medical services on a forum that I would assume would frown on that. By not sharing publicly your recommendation but choosing to do it privately brings question as to your intent. Without an answer to my question those online cannot determine if you are a quack or an honest resource of information. If you continue to commit such action I will be forced to make a report and the administration of this site Will decide what action should be taken. I do not want your identity only verification that your comments should be trusted.
But you had asked me personal question before I replied to Randy. Interesting twist of justification.
Just so you know, I chose to respond to Randy privately because this thread, thanks to your making it about your own cause, has already lost its original focus on here. You took over. So I will leave it to be your soap box instead of contributing to muddying the water further.
What a great way to divert from the question. Blame the messenger. Just anwer why you feel that your expertise should not be questioned. Did you even have a transplant? What is your story?
Note- if you had not replied to my post the conversation would have ended naturally. So stop replying or if you have the need to have the last word I give it to you but in the process you have taken over this original post.
Now you just sound like a bully who feels entitled. Take care of yourself.
Lisa give me chance to finish my post. I tried to edit it and you already replied. I am not a bully. You are taking this to the extreme. I am a normal transplant patient open to all opinions on medical care and that is why I joined the conversation. I hope that is why you joined. So enough is enough. So just stop.
I have sclerosing basal cell carcinoma cancer on my lip
Randy, I am sorry you are going through so much. I had a basal lip skin cancer two years ago. My dermatologist took part of my lip off and sent me to a plastic surgeon who took part of the lower lip inside skin to repair the upper lip. You cannot tell I ever had a skin cancer.Now I have something on my leg I have to get off and I’ve been terrified to see doctors because I am afraid of COVID. I have my ‘transplant 27 years. Today is my 75th birthday. I do have sue effects still, but I am glad to be alive. I know people who don’t have a transplant and go through a lot.
I think the transplant was a gift from my deceased donor. It has allowed me to share my life with my husband and family and friends. I find it hard that we moved to Florida, away from familiar doctors.
Try to take your treatments and try to be a little optimistic about your future if you can. I know it is hard. I’m rooting for you.
Thank you I'm trying my best but it's hard. I'm scared, I can't show my fear
Happy birthday
Thanks a lot!
The conversation between you and Randy is touching. I am glad you and he have disregarded the noise in the background. I wish you both the best and your conversation has inspired me and I am sure others who may face the same challenges in our lives as transplant recipients. God bless.
I always get real in my self assessment of my options - and I vet them thoroughly before I make a decision. After all, what are my other options that will make me happier. That is my ultimate goal. So, regardless of what you choose, own it and move forward.
I also shared the below with one of our members. Hope this helps.
"I was diagnosed with CKD when I was on my early 30's. I had always been a direct to the point person, so I asked the Urologist "How long do I have". His response was " maybe 3, maybe 30 years - depends on what you do with your lifestyle". I was starting a family and this change everything in my life.
I am now 66, had a living donor transplant
(donor was my daughter) last May21 and still looking forward to my short term goals, mid-term plans and a bucket list.
In between I developed HBP, high cholesterol, gout, tachycardia, vertigo, etc. I've had heart Ablation, involved in 2 life threatening accidents, experienced an intensity 8 earthquake that killed 1,000 people just in my hometown and a volcano eruption that lowered the world temperature by 2 degrees for 2 years. And BTW, my country is visited by 20 typhoons every year and 3-4 of them are in the super typhoon category.
Upon learning I have CKD, I started learning about the disease, found prevention or delaying techniques, created preparation plans, creating "what ifs option's" and studying how to accept that every option I take is my own decision. I listened to advices read a lot of opinions, researched but I digested everything and made my own conclusions. My plans included "dying next year scenarios". I updated all of these every year (just like a new year's resolution). l soon realized that the more I wrote and plan, the easier I accept that I will not live forever. I adjusted my lifestyle based on my plan - very hard but what else is my alternative.
Everytime I feel down and out, I pray the "The Serenity Prayer". I am at peace and ready to meet my maker anytime.
Take care, be well...."
Thank you for being so honest. Dying is one of the topics that many people have a hard time discussing. Myself included. The way you have associated it with the living process is commendable. I remember my mother with her battle with cancer. At what point is the pain and suffering too much and death becomes your choice. It is a very personal decision. She made that choice and discontinued treatment. I have never question her decision. I know on this forum we try to stay positive and provide as many ideas to make others improve their everyday lives with transplants but we never know when we may have to make that choice. We each have our breaking point. And when we do family and doctor's are hopefully there to help us make the right decision. God bless you and others who have shared their lives on this forum. You are cared about and have made a difference.
Before I had my transplant at 70 I had a skin cancer removed from my nose and since my transplant I go every 6 months to a skin specialist to be checked out even during covid. Sometimes I think about going every 3 months because deep down I know as I get older cancer Will probably cause me more problems than any other illness. I have had triple by pass surgery and was confident that I would survive. But skin cancer is something always in the back of my mind. Particularly as I age and past sun exposure causes my skin to produce skin variations. I guess what I am trying to say don't put off any doctor evaluation. Sometimes doctor's office's and hospitals have taken more precautions than other locations. Have a colonoscopy if you need one and check in with all your doctor's on a regular basis if you haven't and definitely see a qualified counselor to help you through this time. And if you can't do it alone contact hospital services to see if they have volunteers who can support you. Sometimes all you have to do is ask. Just like you did when you placed this post.
Thank you Randy1805 for sharing your story from your heart, soul and gut. I've written quite a bit on this since May 2019 as the caregiver to my spouse of 43 yrs who had his kidney transplant Nov 2018. He has PKD and never on dialysis when he received at age 59 his first transplant. All of 2019 was so full of challenges and problems it was unreal. To get the point, my issue with the transplant doctors he still sees or talks to is this: the focus was rejection of organ and future higher chances of assorted cancers due to meds. Never was blood chemistry problems discussed or in the reading materials or fatigue. Now we are 2.5 yrs out and he feels more lousy daily and fatigue is there daily and the activities he did often before transplant he cannot due anymore. He is a cancer survivor 30 yrs ago already. So the list of things we wanted to do when I retire soon are not in the cards due to how he feels. We really thought he would have a better life to do things he had been doing with more 'gusto', but that is not in the cards. My heart breaks when I read your 'truth'. Do you have someone you can speak y our truth to like a close friend or relative or a counselor? My spouse will not see a counselor but due to caring for him and it immediately going into covid19 lockdown for us both, I've gone into my first ever depression in life and seeing a new counselor "finally". Your family love you and they want you with them no matter what. Its truly a self survival instinct to find deep in your self what you wish to do with your life and if your loving family around you is enough to focus on or not. My spouse and I don't have that, its just us two. I work hard to keep a positive attitude, but I understand what your mean. It means so much to me that you spoke YOUR truth. I will add you to my prayer list and send positive thoughts to the universe for you. Please keep writing us here. Find a friend to take you to the radiation treatments.
Thank you, I hope your depression goes away, and God bless you and your husband thank you again
Thanks for telling us your story Randy how difficult things are and have been for a long while. I often in the past on this site did not feel that anyone had the same/similar problems like my spouse had non stop the 14 months post transplant. I appreciate your sharing and I hope you know I care and many others do too. Not every transplant has a 'rosy after life'. My spouse is still waiting for that and has resigned himself it will not happen so he can move forward. For me, I am just so disgusted about what did not happen for him to improve his life. At least I have him and he has me. We are a 'team' through all this stuff. Don't have any family near us, but we've gone through life's trials just us 2 and just push forward when its very hard.
I wish I could say it gets better only as time passes by it will be a better life for him and you, and thank you for being so kind I wish your husband the best of luck and you you can pull through this
HI Randy1805, Life has so many twists and turns and no one knows the outcome of the roads in life that we take when choices appear to us. I sincerely and with a big heart wish you a good life with purpose and love with your many family members. I realize it is not easy or pain free. I get that, I really do. I try to focus on living my life by the hours in a day and not the far off future anymore. I just value now. Please stay in touch and speak your truth. There are others struggling too.
The radiation is not what I thought it would be, the nurses here are very nice and make me comfortable they told me the more radiation the more I will feel tired and exhausted. And after a while I will feel the burning. After my radiation today I go to dermatologist for mohs procedure, a little worried about that Thank you for your kindness. And yes I would like to Keep in touch with you and this site
Glad your initial experience in radiology with nice medical staff is going well. They have done what they are doing so many times and your situation is probably not new to them. Keep that in mind. They know you are worried/concerned and more. Keep us in the loop. I care about you.
I went to Dr. Yesterday they removed my upper lip , plastic surgery next
It look terrible
Randy1805 , you have gone through a very invasive surgery to your mouth. See how you look in the days ahead after you have reconstructive surgery that hopefully improves all this . You have alot going on emotionally with this and radiation and so much more. Be kind to yourself. Know I care about you. Others on this site do too
Thank you ,
Randy: I ready your post and then many others in this string. It was very brave of you to share your feelings. I too have felt your feelings of suffering, pain and fear and was afraid to share because so many people would immediately tell me to be thankful for my blessing - which I always am. All I can say is I went into this with one goal in mind -- to live as long as I could. I have been faced with many challenges since I received my kidney including many, many, many medical procedures, IVIG, plasmapheresis and bad reactions to my rejection meds. I am in constant rejection and have a nagging fear in the back of my head that this is gonna get me eventually. I am starting to get skin cancer and have bi-monthly removals from my skin, I have gained so much weight, I am uncomfortable in my own skin. I sometimes cry and sometimes just get angry but thankfully after I let a day or week pass, most times things look better and I somehow find the strength to walk into the hospital for another treatment that is going to just exhaust me for a day or perhaps a few days. On the days I do feel well, I try to do something I can still do -- enjoy the moment. Watch a sunrise or sunset, look at the stars, put my toes in the pool, listen to my children laugh, cook them their favorite meal. Try not to think about the end. Everyone has their breaking point and only you know yours. Just remember, you are not alone, there are people out there that actually do understand you, and there are many people praying for you. I am one of them.
Thank you I have met a lot of very nice people on this site and I thank you and everyone else God bless all of you people who care I send my prayers to all of you when I start my radiation today I'll be thinking of all the beautiful wonderful people that have talked to me on this site
Hello Norken, Thanks for your caring spirit and words of your truth/experience after transplant with Randy 1805 and others like me (caregiver to my spouse with kidney transplant with problems too since day1). I concur with what you wrote about some people are going through very difficult medical issues after transplant for years and a variety of serious issues. Its so hard to see the 'positive' when you feel like crap or worse. I am glad you, Randy and others are speaking your truth which I've done over and over. Randy's post is the first one I could relate to with my spouse' experiences. It is what it is. Keep up all you are doing to keep your loving spirit of life. You are a comfort to hear from. AT times I feel like I'm losing my mind with all the good things people say after years of transplant when my spouse has not had one day of that yet. I am happy for these people. I wish I could mail you a card or something personal. Please live in the day, the hour. That is what I do. I am glad Randy 1805 wrote his truth. I pray for him, you and others your health will improve in big ways.
Thinking of you today as you start radiation.
You’re welcome, Randy. You can always talk to me. I hope your treatments go well.
Not well today, upper lip removed yesterday. Plastic surgery now
Randy I applaud you for being so honest. You have to do what is best for you. I sending prayers and lots of hugs. I had my kidney transplant May 2019 and at times with being sick the first month an a half and getting put on prednisone which has caused endless side effects I too have though enough but for me I have 4 kids 17,17,22,24, 25 and 2 granddaughters and an amazing fiance that need me so I keep pushing forward. I truly feel so sorry your going through cancer on top of having a transplant. I support you on what ever choice you make!
Thank you
Your are so welcome. Please keep updating us on how things are going and please don't hold back give us the good the bad and the ugly! Hugs and prayers
Just got through with radiation. Now I go to dermatologist for Mohs procedure on my lip, I'm sure it will not look good that is The Good The Bad and The Ugly
Thanks for your words of truth Randy1805. Others are going through rough times and have stayed silent too long. I sincerely hope your recovery from surgery of the lip, the radiation treatment starting today or soon all goes well. Take care of yourself and and allow others to pamper you so you can rest. I wish I could give you a gentle hug. Prayers as you heal and recover.
Thank you,for your soft words
Very welcome Randy1805. Please please stay in touch on this forum so we know how you are doing. I am cheering you onward to a better life. hugs
I will stay in touch going to plastic surgeon today for review on reconstruction of lip area. Surgery on the. 7th of july
Saying a prayer and sending you and the doctor positive energy that this consultation and the 7/7 surgery goes very well. Myself and many others on this site are cheering you on.
You're very kind thank you
Seen plastic surgeon yesterday,he is going to cut a piece of my lower lip off. And. Put it on my top lip unfortunately there is an artaray in my lower lip area, witch he has to attach to New lip. Will require me too have my mouth wired closed, for3 weeks only. Eating from a straw .and after 3 wks. He will do 2nd surgery to repair sides of lip Dr said very unusual case ,never seen this much cut off before ,not sure it will ever look the same. I have faith....
Thanks for your truth littlelinda50. I understand your words very well. I will add you to my prayers and sending you positive thoughts in the universe that you will feel better and better, or able to find ways to cope more easily. You are blessed to have that love of people around you. My spouse and I just have 'us' and no others. You have a tribe cheering you on. Take care.
Randy1805, thanks for keeping me and others cheering you onward up to date on your very serious surgery on my mouth/lips. I hope you can enjoy some 'Ensure" and ice cream you like milkshakes (if allowed with your diet) to stay nutritiously healthy for 3 wks along with other approved foods. My hope is the 3 wks will go fast and the surgery after that goes very well. I think of you daily and say my prayers, I really do. You are going through alot.
Thank you!! Gardner-NY
Hey Randy, how are you doing after your surgery? I just want you to know that me and my friends are still praying for you.
Doing ok hard to eat from straw, can't talk write everything . 3wks of this and then 2nd surgery. Have over 70 stitches on face.well time for radiation.thank you for prayers
Good to hear you are ok. Keep your chin up! Will continue to pray.
Hey Randy, how are you doing? Been thinking about you. Still praying too.
I'm doing okay done with radiation. Waiting for a third surgery on my face my lip looks terrible I try to stay away from everyone so no one sees my lip. Thank you for being concerned lavender rabbit
Glad to hear you are done with radiation!
Your lip will look better with each surgery.
I’m sorry to hear that you are staying away from everyone. I think you will find that your friends and family will understand.
I will check back with you sometime.
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