Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: sloaner1982 on January 23, 2013, 01:36:30 PM
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I want to know if I am alone with my problems after donating my left kidney? I was part of a kidney transplant Feb 2010. They took my left kidney. Within 6 months I was expericing severe hormone imbalances, Insomnia, terrible depression, fatigue, and just completely out of whacK. I often felt I could not control my emotions and that I was going crazy. It has taken my primary doctor over 2 years to help me get balanced enough that I can at least feel somewhat normal and joy in my life again. I have been in weekly counseling since August 2011 and just started bi-weekly a couple months ago. I am diagnosed with PTSD as well. This almost took my life. I became so bad, I was suicidal and I thank God everyday for a friend who saved me. My primary referred me to an endocrinlogist who has diagnosed me and is treating me for adrenal insufficiency. My primary and counselor continue to help me with the other issues. By the way- I was never informed BEFORE they took my kidney anything about adrenals. No one even discussed with me where my adrenals are located and how they could be effected or damaged.
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You are not alone.
Living kidney donors have suffered from adrenal insufficiency, and the cause isn't always clear. It's my understanding (I'm not a doctor, on TV or otherwise!) that standard practice is to leave the adrenal gland. But the gland can be damaged during the nephrectomy--a surgical nick, a reduction in blood flow, or something else.
One action you can take is to ask for the medical records associated with your nephrectomy and see if there's mention of any issues with the adrenal gland. Or your endocrinologist or primary care physician could ask for the records on your behalf. (You'll need to sign a HIPAA medical data release form.)
Another thing you can do--and no forms required--is to type "adrenal" in the search box in the upper right corner. You'll get several past postings on this topic.
Keep us informed of what you learn since this is one of those situations that keeps popping up. I hope you feel better soon!
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I'm very sorry to hear of your problems. I myself did not have that problem after donating.
I just wanted to add something that I have read at others posts on this topic: it has been reported that even if the adrenal gland near the removed kidney is not removed, nicked or damaged in any way during the kidney surgery, the changes made when the diffeent blood vessels are reattached and fixed up may make it hard for the hormones from that healthy adrenal gland to proberly drain into the blood stream the way they used to. (I know this is not a precise scientific description, but I'm just passing along what I understand.) So even if that adrenal gland continues to be in perfect condition there can be hormone problems. I do not know how common this problem might be. I myself was not informed before the surgery about this possible side-effect, so I would not have been alert for signs of it if it had occured.
I hope some of this info helps. You did a wonderful thing in donating, and are doing a great service to others in sacrificing some of your privacy in order to share your post-donation problems.
best wishes,
Fr. Pat
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sloaner,
I am so sorry to hear your post op complications and I commend you for sharing them here on the forum. It is so important for recipients, donors and potential donors to know that this is real surgery with very real complications. While the percentages we get quoted from the surgeons appear to be very small with little risk, when a complication happens to you it is 100%.
I agree with Michael. The only way to know what happened during your surgery is to get your medical records. I got all my records by just going to medical records at the hospital and filling out a form. I just wanted to have everything with me in case I needed it in the future and also I was curious about all the things that were done to me.
What did you hospital do for you when you approached them about your problem? Did you get support from the doctors, nurses, advocates there? If they were not supportive, do you feel that contributed to your symptoms of PTSD? Some donors, even those who have a positive outcome, feel very let down by their medical team. They feel used for spare parts to heal a family member or friend and very little gratitude and respect. Overall, I think all patients want to be acknowledged and have their feelings validated by the people whose responsibility it is to care for them. I am sorry this did not happen for you. Have you considered legal action in order to be compensated for your deterioration in health?
Please let us know how things are going for you. You did give a wonderful gift to your recipient. I hope your kindness is rewarded. It is so wonderful that you are taking care of yourself and getting the help you need from your medical doctors as well as your therapist.
All the best,
Sherri
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It has only been the past couple months that I finally feel strong enough to start speaking out. It saddens me to know that there is such a lack of concern for living donors once they have donated. My transplant unit has not done any labs or follow up on me past 9 months post donation. Donated in feb 2010- had complications after donation and was seen in the ER two times within 3 weeks. Severe Fatigue and pain. 9 weeks of recovery. started weight gain, felt tired alot and depression setting in over the next several months, Something was not right and by the end of the year I was a basketcase. This is when my primary took over and began helping me. I have gained 45 pounds since my donation as well and it is very difficult to lose. Every donor needs to be aware that they may have adrenal problems after kidney donation and they also need to understand how important the adrenals are and what they do for your body and over all well being. I also have vitamin D definency. The only thing that worked to bring my levels into the low range of normal was putting me on prescription vitamon D. Sometimes I feel like I am the only one with this problem. I just know that when they took my kidney and decieved me they took my life and I am just now starting to get better recently. Next month will be 3 years since they took it. I am sorry if I don't lik eto use the would donation, because it does not feel like a donation any longer. It feels like they stole my kidney and after they got what they wanted, there was little concern for me. Do you realize that during my first post op visit with the surgeon that I had brought in some info about a diet I wanted to do and asked if it would be a safe diet to be on with only one kidney. I tried to show him the information, and he said QUOTE, " I don't have time for this!" He then told me it was safe without really looking it over and discussing it with me. He was in and out in 5-7 minutes top.
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sloaner,
I have been searching to see if there have been any studies discussing your issue, adrenal insufficiency after living kidney donor nephrectomy. I haven't been able to find much. There have been studies discussing all types of complications including adrenal hematoma or bleed related to the surgery. If you are interested in searching go to googlescholars.com and type in adrenal injury after donor nephrectomy or other search words related to that. Some studies will come up. One study that I had found a while back, done in England where there is a National Healthcare System so tracking is easier, discusses chronic pain s/p living donor nephrectomy. this study looked at donors over a 10 year period. Here is just an excerpt discussing donor pain. ( Owen, M., Lorgelly, P., Serpell, M., (2010) Chronic pain following donor nephrectomy. European Journal of Pain. 14 (7) 732-734.)
"Despite this severe, iatrogenic chronic pain, few subjects received specialist pain management. We did not specifically ask the reason for this, but it may be because they were reluctant to complain. Free statements from two subjects exemplify this sentiment below:
‘‘I didn’t feel comfortable telling the surgeons about the pain. I don’t want anyone thinking I regretted the decision – I’m still glad I was able to do it”
‘‘I never moan or bother with the pain. I’m just glad that my brother is better”
Donor nephrectomy patients may be embarrassed and reluctant to admit they have chronic pain, so delicate appraisal may be required. Those who donate kidneys in the UK are selected because they are fit, healthy, well-motivated individuals who are prepared
to undergo major surgery for entirely altruistic reasons. Disabling pain in this group of patients has a potent deleterious impact on
quality of life, especially if needlessly allowed to continue through under reporting. Clinicians need to inform patients that chronic pain is a possible long-term outcome after surgery, but that appropriate treatments can be quickly established once the diagnosis is made. Though difficult to prove, the consensus is that pain is less likely to become chronic if treatment is started earlier. If these issues are covered openly by the clinical team, it is unlikely that donors will refuse consent for surgery. Chronic pain had not been highlighted by previous studies on
donor nephrectomy, and future studies need to look at this more specifically, especially with regard to risk factors. Risk factors for chronic pain after other types of surgery have been identified.
These include severe acute post-operative pain, pre-existing chronic pain, psychological (particularly anxiety), surgical and genetic factors. (Kehlet et al., 2006). If these risk factors are also confirmed for donor nephrectomy patients, it allows identified patients to be more closely monitored and aggressively treated. Donor nephrectomy patients do an enormous service both to the recipients and to the NHS (approximately £240,000 net savings to the NHS per successful graft over a 10-year period, which is the average graft survival. (UK transplant Factsheet, 2007) The transplant team are in the ideal position to screen these patients postoperatively, and should be able to make a prompt diagnosis and initiate treatment or referral. Our centre now follows up all donor nephrectomy patients at a dedicated clinic where all post-surgical issues can be dealt with as soon as they arise."
Living donors are a vulnerable population and need more protection and advocacy. The transplant community has failed to recognize the psychosocial issues related to this population, especially in family donors. Some transplant centers protect non related donors by making the eligibility process more time consuming, ensuring an independent living donor advocate and setting a mandatory wait period for surgery so that potential donors can have time to decline if they feel pressured. The assumption for family donors is that since they may receive a benefit then they need less protection. I believe it is the exact opposite and the system needs to recognize its short comings.
Donors who do suffer complications often feel uneasy, embarrassed, not "entitled" to complain as they are not the "sick" patient. After all, all we heard through the process was how safe this is, how easy and minimally invasive the surgery is, go home after two days and you only need one kidney to live a healthy life. So how is a patient supposed to feel comfortable expressing concerns. It takes a long time for the medical community to recognize emotional and mental health concerns in vulnerable populations. In my mother's generation there was no such thing as postpartum depression. Mothers were supposed to go home and love every minute being with their babies. A little baby blues was just "hormonal" and the doctor told you to go home and rest. No mother dreamed of complaining, what would people think? Now we know that postpartum depression is very real and needs to be treated appropriately. No one's complaints should be minimized. The medical community needs to be educated and donors need not feel shame in recognizing that something is not right. I hope donors who have had negative outcomes, and even those with good outcomes, will come forward and try to educate those who are supposed to protect us.
BTW, Fr. Pat asked in another post if there are countries following donors. It appears from this article that this center does follow their donors. does not say if it is for a lifetime.
"Our centre now follows up all donor nephrectomy patients at a dedicated clinic where all post-surgical issues can be dealt with as soon as they arise."
Medicare should be following donors for a lifetime, the same way they follow recipients. There are tumor registries, other surgical registries to study outcomes. Donors deserve more. We save Medicare and enormous amount of money by keeping their patients off dialysis.
All the best to those donors still suffering.
Sherri
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I was counteracting your claim that most people donate because they love someone very much and want to help them. I also feel that if people are not highly literate and don't have research skills, if they can't distinguish good information from bad information, if they can't tell highly biased from objective information, if they don't take sufficient time to search online for weeks before donating, if they don't have much access to a computer, or if their desire to help is considerably greater than their intellectual grasp and they suffer one of the negative outcomes that are possible with surgery, they really don't have any reason to complain. Although the risks are minimal, they do exist which in itself tells you that a percentage of people who donate will suffer from them.
The above statement is not something that I posted, but something I saw posted in a public living donors group. These types of statements are exactly another big reason that many if not all living donors are reluctant to speak up about any complications that they may have. We are bullied and made to feel worse than we already do. I have experienced this type of bullying since I have been speaking out. But, I am choosing to remain strong and know that my voice needs to be heard because other people are considering living donation and need to have the whole truth to be able to make an informed consent. When you mentioned the word adrenal hematoma it really clicked a memory for me. I had severe pain in my left side and that was one of the reasons I was seen in the ER within 3 weeks post kidney removal. They did a CT scan and the transplant center told me that I had a hematoma. I needed extended recovery because of this. I was also told at that time that they would do another CT scan with contrast in 6 months to see how it is doing, because they may need to remove my adrenal gland. That was the first time I had ever heard the word adrenal gland mentioned during the entire process. I freaked out, as I did not even know that my adrenal glands sit ontop of each kidney. He did not even explain it to me then. I went hope and research the word adrenal gland and that is when I saw where it is located and more info about it. They did not tell me that I had a adrenal hematoma. They just said that I had a hematoma in the area that they removed the left kidney. I just want all donors and potential donors to be protected from lack of inform consent and lack of good reliable longterm/lifetime followup/studies. It makes me sad that a persons love and desire to help someone else is taken advantage of. By the way, I did not donate to a family member. It was a person that I had just met and had known only 4 1/2 months by the time they took my kidney and placed it inside of him.
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Info that might be helpful: Switzerland has been following up on kidney donors for about 20 years now. If you type "Switzerland Kidney Donors" in your internet search box you should find some of their follow-up data, and if you scroll down a bit there you will find one or two entries about the adrenal glands and kidney donors.
best wishes,
Fr. Pat
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Hi,
I began having tiredness, dizzyness issues soon after donation. At one point I looked into adrenal issue, as it seemed to fit, and found I was right on the boarderline of that issue. Continued searching lead to the conclusion it was Lyme, with neurological and heart issues. Its very hard to figure out what is going on, what needs to be done, and all when you are tired and confused much of the time. But I am lucky, I have a occupation (I'm a CPA) where I can pace myself (most of the time), and my wife is very understanding and helpful. Still, there are times that the condtion leads (or seems to lead to) trouble. I have quit some clients that earlier I never would have. Many things that call for attention get ignored. I have found the responses of some people shockingly mean and thoughtless. That has been the most challanging aspect. Oh, and losing my health ins because I needed it. So annoying. But it worked out and I now have ins. Sorry to ramble, just trying to say that I get it. best wishes, Rob H
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http://livingdonorsarepeopletoo.com/living-kidney-donors-health-well-being-10-years-later/
so far this is the only info I found that shows the swiss donor health 10 years later. I have not found the one for 20 years out. If you can provide me the link, I would appreciate it. Thanks!
Rob- I would seek the help of an endocrinologist about adrenal insufficiency. You say you are boarder line and that could cause you problems. I am also, close the the low end of average. But low enough to cause severe symptoms that effected my quailty of life. Not everyone is average. My endocrinologist began treating me with a low dose of hydrocortizone. 20 mg daily. (10 mg morning and 10 mg around dinner time.) this has made an improvement in some of the side effects I was having from insufficient adrenals. I have also been studying that there are other things we can do to help heal or adrenals. You could ask your endocrinlogist to try a low dose of hydrocortizone ( a natural hormone produced by our adrenals) for a three month trial and see if it makes a difference for you. It may be worth a try. Good luck and I hope you will get better. With the combined efforts of my primary doctor, my counselor, and endocrinologist- it has taken over two years to feel like I am finally have better quality of life again. The endocrinologist did not come into the picture until about 4 months ago when my primary referred me to him after he had made many attempts to adjust my hormones imbalances that blood work showed I was having and verified the symptoms I was experincing were NOT in my head. There was still a missing link- and come to finally find out after Adrenal testing done at the hospital- I was lacking in that area. NOt hugely- just enough to make my life miserable. The fatigue has some improvement now and I still have some insomnia- but not as often. My over all feeling of wellness is improving. For that I am thankful. I am on antidepressants now as well. Next month will be three years. The care I recieve from my medical providers will continue to ensure my future health. I forgot to add that I am now also seeing a nutritionist to help me try and lose all this weight I have gained. You see, the weight gain came from the severe depression I suffered. I used food as my comfort. As I am starting to feel much better, I am finding that I don't need FOOD to ease the pain so much anymore and feel that I am finally in a place where I may actually be able to have some success in weight loss. I need to do it for myself, and my health. There is a strong history of Diabetes in my family. Everyone of my dad's siblings, including him have or had diabetes. There are only two left out of 7 living. Diabetes is what contributed to my fathers death at age 70 years old. This death certificate say's complications from diabetes and heart disease. ( Diabetes is a big cause of heart disease) I have also learned that is and high blood pressure are the number one thngs that will take out a kidney. I have only one kidney left- I must lose this weight to help preserve what little I have left. .Thanks for listening everyone.There is much more I wish I could share, but because of legal reasons I am limited at this time. I hope to someday tell my story in full.
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Dear "Sloaner",
My computer skills are not great, but here's what I did:
--- I typed "Switzerland Kidney Donors" into my AOL search box.
--- Among the things that came up, here are two. BUT, when I click them I get the document, but when I type their address to go there it does not work?????
--- One is titled" "Key Facts about living kidney donation", and is a long booklet from Switzerland including results of the Swiss long-term study. The study began, if I understand it right, in 1993, so they would have 20 years of data NOW. This booklet, however, is updated to 2005 only. The long link they provide (which did not work for me when I tried typing it in instead of just clicking it there) is:
www.unispatel-basel.ch/fileadmin/unispatelbaselch/Bereiche/Medizin/Nephrologie_u...
--- Another is titled "Adrenal Function After Living Kidney Donation" and has a clear description of the anatomy. (It points out that adrenal problems can happen only when the LEFT kidney is removed. When the RIGHT kidney is removed the different anatomy means no effect on that adrenal gland.) The link is:
clinicaltrials.gov/show/NC100251836
That's about all I can offer. Hope you can find them.
Fr. Pat
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Thank you Pat- I too was trying to find those studies and anything I found did not give me a way to view the document. I will try what you have suggested. Thank you for your efforts. I appreciate it so much.
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Please ask your physicians to publish your case report. To present your story at Grand Rounds and to any medical audience that will listen. The Chicago Tribune reported on a donor with adrenal insufficiency (Lisa Giles) "Living kidney donors push for better data on risks" on July 31st, 2011. I have been in contact with endocrinologists and nephrologists over the years. If someone who had a nephrectomy (for any reason) has symptoms like yours, they need to seek help. If does not improve after 6 months post-donation, then likely will be a chronic health issue needing specialty care by an endocrinologist for the rest of the donor's like.
Just to review: the adrenal gland sits on top of the kidney. It is very delicate--and can be damaged easily even if bumped during surgery. While surgeons claim they do not remove the adrenal (some do), they are ligating (cutting off) the adrenal vein on the left which in essence means blood comes in and does not exit--so the gland infarcts or dies off when this blood clots. Due to what is called nephron-sparing surgery done via the lap procedure, surgeons were able to see that the adrenal does not have more than one adrenal vein in the majority of patients studied. It was thought that we have have other veins or develop collaterals which is not the case. There is no way to know if the remaining adrenal is healthy or not. There are also some theories that say once the kidney/adrenal on one side is removed/damaged then due to blood volume changes (and all the blood flow coming to the remaining organs) that this shocks or overperfuses causing injury.
Thank you for sharing your story. The more we know, the more we can educate the medical community about what donors need. Donor care needs to be a medical model. For all too long, the surgeons have controlled our story. We are much more than a surgery and surgeons are not medical experts. For those who want to do more research on this issue, you need to look in the urology literature and surgical textbooks; not living donor literature. As we know, will not find much there.
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Thank you Donna. I will check into it with my doctor. You are correct about needing to be treated for the rest of my life. At my latest visit with my endocrinologist earlier this month, I asked him how long I will need to be on the hydrocortisone. He told me that I will always need to be on it as my adrenals are not doing enough.
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Due the lack of suitable donor organs a large proportion of kidney transplantations is now performed from living donors. In the year 2002 the number of living donors surpassed the number of cadaveric donors in Switzerland (Swisstransplant, Swiss Transplant Society 2005). Kidney grafts from living donors have superior long-term outcome (Hariharan S, N Engl J Med 2000). At the University Hospital Zurich 28 of the 84 kidney transplantations performed in the year 2004 were from living donors.
During living donor nephrectomy the renal artery and renal vein are transected as far away from the kidney as possible, to ensure an adequate vessel length for the subsequent transplantation procedure. The arterial supply of the adrenal glands is accomplished by several small vessels (ca. 5-15), while the venous drainage is usually dependent on a single vein. While the right-sided adrenal vein drains directly into the inferior vena cava (IVC), the left-sided adrenal vein drains into the renal vein. Variants are relatively rare and occur in 5% of cases (Sebe P, Surg Radiol Anat 2002). Therefore, during donor nephrectomy of the left kidney the adrenal vein is transected, while this is not necessary on the right side.
The question addressed in this clinical trial is whether left-sided donor nephrectomy affects the left adrenal gland. This might be compensated immediately by the contralateral gland or it might lead to a measurable functional adrenal deficit. Such an adrenal insufficiency could be detrimental to the immediate postoperative course. The intermediate-term outcome of the adrenal glands is also of interest, as an impairment of the left adrenal gland will lead to a hypertrophy of the contralateral gland.
Few scientific publications have addressed these questions. There are case reports of acute intra- and postoperative adrenal insufficiency in patients undergoing nephrectomy with adrenalectomy (Cassinello Ogea C, Rev Esp Anestesiol Reanim 2002, Henrich WL, Urology 1976, Messiant F, Ann Fr Anesth Reanim 1993, Safir MH, Geriatr Nephrol Urol 1998). A small prospective study in patients undergoing radical nephrectomy (including adrenalectomy) did not find signs of adrenal insufficiency (Bischoff P, Anaesthesist 1997). However a subgroup analysis of a newer study demonstrated adrenal insufficiency in radical versus adrenal-sparing nephrectomy (Yokoyama H, BJU Int 2005).
The study hypothesis is that left-sided donor nephrectomy (i.e. with transaction of the adrenal vein) is deleterious to the left adrenal gland and causes a measurable transient adrenal insufficiency after the operation. The primary study endpoint is the assessment of adrenal function after donor nephrectomy. This is done by an ACTH stimulation test, performed at baseline, in the first week after the operation and 4 weeks after the operation. Comparisons are performed between baseline and postoperative values, as well as between left-sided kidney donors (n=20) and right-sided kidney donors (n=10). A secondary study endpoint is to assess the morphological response of both adrenal glands after donor nephrectomy. To this end MRI and volumetry of the adrenal glands is performed at the same time points, with the hypothesis that left-sided nephrectomy will lead to an involution of the left adrenal followed by hypertrophy of the right adrenal.
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I saw the above posted in a living donor group. So I copied and pasted it here. This may provide more info about this potential complication.
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SWB,
I am bumping this thread up in case you haven't seen it. There are apparently other donors who have had adrenal gland issues. I also asked before surgery what they do with the adrenal and of course the surgeons all say, they don't touch the blood supply to the adrenal. but sometimes you don't know how things are connected and what gets compromised until you are in the OR. Some male donors have had complications with testicular swelling because of the gonadal veins. It seems to me that there is very little information given to donors about possible adrenal complications and testicular complications as well. Only a continual living donor registry would allow for accurate research. If donation centers don't follow patients they will never know nor will the insurance companies covering these surgeries.
Let us know what you find out. Funny enough for the first time, my thyroid gland is not functioning normally. I have a high TSH (thyroid stimulating hormone) which means I am hypothyroid. This is common with women as they age but I will discuss it with a nephrologist when I get a chance. My PCP offered to put me on synthroid. I am not symptomatic and decided to repeat in 6 months to see what happens. I am just at the subclinical level.
Keep us posted.
Sherri
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Thanks Sherri. Will read through carefully and let you know what the MD says.
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Interesting. Mine was the right kidney that was donated. So the research serms to imply that as long as there were no surgical complications I shouldn't be having adrenal gland problems. It could be unrelated. Sometimes I think it is too easy to link our sicknesses to the donation but I think it is also because we try to keep ourselves informed. Going to check with MD as I noted and will share what we find out. Until then I am praying fir some warm weather!
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you would need to get your surgical report to actually find out what transpired during your surgery. So make sure to get a copy of your records and bring to your doctor.
But I agree with you, when something seems out of whack I always think kidney when most likely it is not related. But always nice to be sure.
Sherri
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I have tried to find the link to post, but I stumbled on a surgical study that suggested only 15% of the 200 cadavers had an adrenal vein that emptied into the renal vein.
This could explain why some donors have issues and some don't.
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Well so far I have found out that my md ran the thyroid tests already without me having to ask and they were fine based on some earlier post-transplant labs. I went in to get the latest lab results and they were not ready for some reason due to a lab issue. But, MD has ordered additional tests and I requested all records from the donation surgery to be sent over (thanks to Sherri's suggestion). Hoping it may end up being just anesthesia related and temporary. Just more curious than anything else and continuing to investigate. But in the end it may be non-related. I am healthy enough I just finished my second full marathon two weeks apart so being cold is more annoying than anything else.
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I got a copy of the Ct scan that was done after they took out my left kidney. Here are the results:
Impression: Interval development of a 3.7 cm left adrenal mass. In addition, there is interval left nephrectomy with indeterminate nodular density in the left renal fossa. All these findings may be related to the surgery. Clinical correlation is advised.