Debbie’s Story
Michael- I am sending this to you because I know from reading your site that you were a kidney donor and wish to help others who have been kidney donors or are planning or considering to be donors. In addition, you want to help inform family members of the donor or recipient. Michael, I want to begin by telling you that you may do what you think is best to do with my story. You may disclose any part of it or all of it to whom ever may possibly benefit from it. Or, you may decide it is not at all beneficial for anyone to read. The decision I leave entirely up to you.
I feel and think that the reason in part as to why I have finally put all of my thoughts in writing is for my own benefit. It is good therapy. I am not alone in that I have kept any part of my story a secret. I have shared it all with my sister and the rest of my family and close friends long before writing it. And, most importantly I want you to believe that I do not dwell on any part it.
In reference to my experience as a donor, I am only angry when I think about it which isn’t very often. I give you my apologies for the length of my story and for the disturbing contents in it. And, I thank you for simply reading it if only in part considering it’s length.
I gave my sister a kidney on September 2, 1992. The transplant was performed at the University of Minnesota hospital in Minneapolis, MN. The facility is now called Fairview. I was 46 years old and my sister was 42 years old. We were a perfect match- HLA Identical (6-6). We are not identical twins but as her head surgeon, Dr. Nagerian, said we were as close as can be without being identical twins. My sister and I were then and still are very close in that we share our opinions, values, and beliefs with an open mind. Our love for each other is deep, real, and honest.
It was an easy and immediate decision for me to say yes when asked to give her a kidney should we match. I had no reservations about giving my kidney before the donor work-up, after the testing results proved to be a match, or any time before or after the surgery. I have much to say regarding my experience as a donor if you are willing to read this.
Regarding the transplant donor experience specifically, my sister and I were and still are of the same opinions and beliefs in reference to the problems that I experienced immediately and long after the surgery. I want to preface all of the following by telling you that I would give my sister my kidney again if it were possible. My willingness to do so may not sound rational or honest after you read my ‘story’. Nevertheless, I am sure that I would do it all again. (A note: I have on my auto license-organ donor upon my death) Perhaps some my reasoning is based on the fact that we were a perfect match.—But, the most important reason is that this is all we have folks!! – Kidney donation whether live or cadaver is it!!— If there would have been or would be another way to give the many in need life – I would not choose to go through this again.—My belief is with live donors – preferably sibling – with an antigen match because it increases the chance for long term survival of the kidney, and possibly lessens the need for as many anti-rejection drugs in the short term and more definitely in the long term for the recipient.
In addition to the above preface I want to add a follow-up of my sister’s transplant health history: My sister is a tiny person. She has never been overweight. She was always active. She took great care with eating good healthy foods especially in consideration with her health. In the past she always drank a lot of water and fluids to help her kidney. She has never drank alcohol, and has never smoked or used ‘street’ drugs. And, she always took the medications/drugs needed to keep her kidney transplants. Her kidney disease was Congenital Reflux. At the age of approximately 18 it was discovered that her own kidneys were at end stage.
Her dialysis and transplant history begins with Mayo Clinic in Rochester, Minnesota. She was on dialysis for 2 1/2 years before her first transplant. Before receiving that first kidney she was so ill that she was given only 3 months to live. It was truly a miracle not only that she was given the kidney but the way in which the events took place to enable her to have it. It was not known then that I was a perfect match. I was about to be tested for compatibility just before she was informed that she had a match with a cadaver kidney from an accident victim who was a 18 year old male. It was a C match. She had 65 rejections with that kidney without being hospitalized one time for the rejections. Many times for the rejections she entered the hospital with outpatient care receiving an injection of Solu-Medrol in her leg at 1K volume. She carried the kidney for 21 years before it finally stopped functioning.
The anti-rejection drugs have ‘beat up’ her body. She has had her hip replaced three times, her bones are brittle, her skin & surface tissue on her entire body is thin and has a bluish and bruised appearance. She had other surgeries (approximately 35) and illnesses too numerous to mention in here that related to the drugs she had to take throughout all these years. And, just being a kidney transplant patient for many years took it’s toll on her. She had cancer on her genital area which was removed.
As stated above, my kidney was given to her on September 2,1992.—— An interesting event occurred less than one week prior to September 2. She was given the choice of a cadaver kidney or my kidney. When a cadaver kidney is available time is of the essence to get to the receiving hospital as quickly as possible. My sister lived 3 1/2 hours away from the hospital so there wasn’t much time to think things through. Our entire immediate family was there with her and they were all urgently pleading with her to take the cadaver kidney instead of my kidney. I completely disagreed with them. I knew even then that a sibling with a perfect match was the better choice for her. It was a chaotic and confusing time for all of us. I had to be very cautious and diplomatic when presenting my views to my family. They were concerned over my health and felt as though God had intervened with the opportunity of choice. I had to quietly and softly nudge my sister into believing that I was willing to proceed with the nephrectomy. Ultimately, with the strong suggestions from the attending surgeons to do so, she decided to choose my kidney.
She carried that kidney in her tiny little body for 6 years with 0 rejections. Her creatinine was less than mine for a long time. She did not have one urinary infection as she had had with the first and last transplant. And then, suddenly, the kidney rejected. The reason remains a complete mystery. She was hospitalized and had to endure the horrific harsh side effects caused from the anti-rejection drugs to attempt to save the kidney. It was a very sad, sad loss.
Thereafter, she received another cadaver kidney from a 48 year old female stroke victim. It was a 0 antigen match. It functioned for only 2-3 weeks before it rejected it’s new owner. Again hospitalized, she faced one more time of enduring the harsh side effects from the anti-rejection drugs without success. She had surgery for an implant of a gortex fistula (long curved tube under the skin from wrist to elbow) in her arm to enable dialysis treatments. She has had 8 revision surgeries (changing it to another vessel supply) for the fistula within the last 8 months. More than once the fistula clogged and when in need for emergency care including dialysis, a port through the neck area had to be used. Her veins elsewhere are not accessible.
Very recently, that last kidney she received had to be removed because it was swollen the size of a small melon and created havoc with her body and health and caused her unbearable pain. She has been told by the same facility where she and I had the surgery transplant that she will never again be eligible for a kidney. She has friends who offered. Our family doesn’t have another donor. The reasons are either that there isn’t a match or there are health problems which would put them at risk.
She has had 7 emergency rides via ambulance and/or helicopter within the last 8 months because her lungs fill up with fluid. She is obviously on dialysis. Her body is giving up. She doesn’t have much longer to live.—She has been a courageous fighter all these years. She is very, very well educated with any and all aspects of kidney disease, kidney transplant, medications, anti-rejection drugs, etc.— I admire her courage and her fight. I love her beyond the measure or definition of love -I often tell her that I love her galaxies, and universes, and all of the stars combined. I will miss her terribly when she is gone.
Whew!! That was not easy to write!! Having said all that – I will now begin with my thoughts, feelings, and opinions regarding my experience as a donor.
When I do think about my experience which as stated above isn’t very often, I am still angry after all these years for not having been fully informed of my potential health problems during or after the transplant surgery. Considering my health prior to the surgery the doctors must have known the possibilities of risks involved. (Before and after surgery health problems are noted in the following paragraphs). I was not prepared for the immense pain following surgery. I wasn’t given strong enough medication to relieve the pain after leaving the hospital.
I was not and still do not know why after post-op I ended up in ICU (event of same is in following paragraphs). I was not told that I might experience pain in the area of the incision years after the surgery. I was not told that I might have back pain after surgery. I wasn’t told that being ‘under’ for the length of time required for the transplant could/would cause temporary (at the very least) loss of memory. And, I wasn’t told that donors were basically ignored by the medical profession when they asked for any kind of help to assist them through their medical, physical, or emotional problems relating to the donor experience.
I want to add the following note before I forget: I must tell you that when the kidney that I gave her died – I wept not only for her (feeling survivors guilt) but also for the kidney itself. And, I must tell you that just after giving her the kidney-nine days after the surgery- I cried for a long time that night over the loss of part of me-a very sad, sad feeling of loss. I was warned by the transplant donor counselor prior to the surgery that a feeling of loss would very likely happen, and that my intellect would disagree with my emotions.
The information regarding my health at that time in 1992 is as follows: Within the facilities of the University of Minnesota or presently Fairview, a donor work-up was completed in February of 1992. The donor work-up revealed moderate Aortic Valve Regurgitation which was based on the results of a Doppler Echocardiogram following an initial EKG and diagnosed by a cardiologist. (The same cardiologist is to this day my doctor as there is a need to check the progression of the valve disease). All of the other test results included in the donor work-up fell within the normal range.
However, there was one test that wasn’t included which in my opinion should have been. That test was a thyroid function test. In my case, at the very least, a simple TSH would have revealed a thyroid malfunction. Please recall that the donor work-up was completed in February of 1992, and the transplant surgery didn’t occur until September of 1992. It wasn’t until one week before the transplant surgery, upon my request, that my family doctor did some testing for thyroid function. At that time I had a small noticeable goiter and I was concerned. My family doctor ran a TSH and several other tests for thyroid function. The result was a diagnosis of Hashimoto’s disease. I immediately began therapy which was Synthroid at the level of .1MG. Obviously there wasn’t enough time before the surgery to enable the Synthroid to establish a balance within the normal range of thyroid function. Furthermore, the TSH was not within the normal range for nearly one year following the surgery. (I have all of the many TSH test results during that period of time.)
Continuing with my state of health at the time of surgery, and reverting back in time for many years prior to the donor work-up I had a problem with edema. My ankles and abdomen were the main sources of aggravation with the swelling. In addition to the swelling or bloating of the abdomen I had for some time experienced pain all across my abdomen upon waking in the morning. It felt as though I had been punched or kicked. All of these problems were clearly told to the doctors involved with the transplant surgery.
I must also note that I was about 30-40 pounds overweight at the time of the transplant surgery. I have long since then lost that weight. Another note, I very clearly told all doctors involved that I was and still am very sensitive to anesthesia meaning that I am very slow to wake after surgery. I have all of my records pertaining to the donor work-up, transplant surgery, and hospital stay after surgery ‘IF’ all of the information is there within the copies that I have.
The day of surgery -September 3, 1992-: One hour before surgery, in my presence, the anesthesiologist read my chart and verbalized her concerns regarding my thyroid function and heart valve disease with another surgery ‘team’ member. It was the first time she had read my chart. She was very obviously not comfortable. In the chart it states: “the aortic valve regurgitation does not significantly increase risk.” The information in the chart regarding the thyroid which had been provided by my family doctor does not state any significance other than the diagnosis itself.
The length of time for the surgery was 5 1/2 hours. I had problems immediately after the surgery. I ended up in ICU for 9 hours after post-op. A team of specialists (otolaryngology) were there ready to perform a tracheotomy (I was not awake-my husband informed me later) because I was so swollen/edema that they were afraid that I wouldn’t be able to breathe when they removed the tubes. The outcome was that I was able to breathe and a tracheotomy wasn’t necessary. I remained on oxygen for three days.
When I finally woke up on the second day my first thought was “please God don’t let anyone ask me if I would do this again.” The pain was the worst pain then and to this day that I have ever experienced! My incision is from the front of my abdomen at near waist level around to mid back. A rib was removed. At that time, the doctors told me, it was believed that to remove a rib lessened the possibility of severely bruising or breaking it, and removing it gave more room to extract the kidney.
While in the hospital it was discovered that I have a disfavorable reaction to Bactrim, which caused severe nausea. I also had a strange reaction to some other medication in that I could not at all tolerate many odors such as my room mate’s perfume, the flowers that were sent to me, and my IV bandage in my arm. The perfume and flowers had to be removed from the room and my bandage on my IV in my arm had to be covered in a heavy wrap of gauze. Still, my drug induced strange sense of smell persisted for two days and severe nausea was the consequence.
My hospital stay was only one day longer than expected for most donors at that time which was as I recall 6-7 days.
I want to note that I am and always have been a very respectful, congenial, and non-complaining patient. Thereafter, for approximately one and one half years I experienced numerous problems. Whether these problems were related or unrelated to the transplant surgery remains a mystery. I asked the transplant unit at the same facility for help to no avail. I asked the kidney transplant donor counselor for help to no avail. In person, I asked the head surgeon who performed my surgery why I had ended up in ICU (why was I so swollen). I believed it had something to do with the anesthesia and/or possibly the hypothyroid disease which was diagnosed only one week prior to surgery without time for the medication (Synthroid) to achieve a level in the normal range for thyroid function. (Note: from my records, during surgery it was noted “the goiter prevented threading”-“Postoperatively there was concern about swelling in the patient’s neck secondary to central line attempted placement in the operating room.”) I wasn’t concerned with the aortic valve regurgitation being the cause of ending up in ICU. However, I was concerned about potential problems again with surgery should I need open heart surgery in the future to replace the valve.
The only comment the head surgeon gave me for an answer was that I was filled with fluids (via IV) prior to surgery to help ensure the kidney’s function once it left my body. That was it!! No other explanation was given!!
Other problems included severe to moderate back pain for 1 1/2 years after surgery. Especially in the first 2-3 months I wasn’t able to make a bed, or sit for more than 20 minutes, or walk for more than 10 minutes. I went to The Institute for Low Back Care in Minneapolis, Mn. and had an MRI. The results revealed nothing significant relating to the transplant. The doctor in my care was one who didn’t believe in living donor transplants and was not shy about verbalizing his opinion. He was kind and helpful. As I recall, though not disclosed by the MRI, his opinion was that the nephrectomy did relate to the cause of my back pain (something about synovial fluid and pressure from the swelling).—The lymphedema in the tissue in my arms just above the wrists and up to the elbows emerged after surgery and only worsened with time to present day. It was 1.7 and then 1.5 for quite some time before it fell to 1.1.—I was tired all the time-the fatigue was not easy to deal with. —
On top of all the discomfort, I did not at that time have the understanding of my family. They truly didn’t know that the donor very often goes through much more pain and agony than the recipient. There were very few visits from family and friends. I did not have anyone bring me meals, help me with errands, or assist me in anyway when I needed help.
All of that has long since changed. They are and have been for quite some time very supportive with kindness, understanding and love. But I must tell you that during the time that I was ‘on ignore’ it was very, very psychologically devastating. Furthermore, I had some very extensive testing done 2 years after surgery. These tests included cat scans (2), a bone scan, a colonoscopy (couldn’t be completed-because of the pain which was due to the scar tissue from the nephrectomy according to the doctor who did the colonoscopy), a bone marrow and bone biopsy, a 24 hour urine test (revealed histamine level was twice as high as the top number of the normal level), asthma tests, allergy tests, facial skin biopsy, and other tests that I don’t remember. (This memory loss I am thankful for. I had to look back in my records to refresh my memory for most of the above)–
The symptoms that I was having lasted for 3-4 months. The symptoms included were nausea (severe many times), stomach cramping, facial and neck flushing (severe-beet red-created tiny ‘spider veins’), fatigue, and rashes intermittently on different areas of my body. There was no pattern to follow with foods, environment, or any other clues. There were other symptoms that I don’t remember at present.–A very rare disease called Mastocytosis was suspected and dismissed after a long testing process.—
Within my records pertaining to the nephrectomy there is documentation of a blood transfusion. Taking a ‘long shot’ at the possibility the transfusion had something to do with my illness, I called the University of Minnesota and tried to track down the information regarding the blood donor. There was no record anywhere to be found.–
All of the above symptoms were in all probability not related to the nephrectomy- Or-were they -????? I do know that I will only visit with my cardiologist when an echocardiogram is needed, or at his request other testing for heart function is needed as was the case most recently. I have a routine screening for thyroid function, creatinine, and liver function tests which is done usually every nine months. Other than that I avoid going to any doctor unless I have an emergency. Not wise perhaps, but my past experiences simply won’t allow me to get past those ‘doctor doors’.
Well, that is the end of my story. Again, I apologize for it’s length and for getting a ‘bit’ side tracked….I hope that donors are treated with a little more respect today. I hope that they don’t hesitate to ask the doctors and their associates questions with expectations of clear, concise, understandable, and sound answers. And, I hope that they are listened to with an open mind and an open heart. I hope that there is readily available help for donors should they experience ‘survivors guilt’. I hope that they are told honestly and informed fully of what they as a donor might experience. I hope that communication between the donor, recipient (if possible), family and friends is an understanding, respectful, loving, open, and honest sharing of expectations, anxieties, fears, feelings, thoughts and opinions. I hope the donors are coddled and cuddled…..For they are the givers of “The Gift Of Life.”
Thank you for sharing my story – With my deepest respect and sincerity-
Debbie